Saturday, November 5 2005
A Response to Michael Sharpe
Michael Sharpe left a comment last week on this weblog in response to my entry in February quoting statements from a public lecture of his at Strathclyde University some years ago. I'm always one to believe in engaging with those prepared to debate openly as your response seems to indicate Michael, so I'd invite you to respond to this. I felt it important enough to devote what's probably a whole day or two's energy to this then rest, as I think this is the crucial debate on which the fate of people with ME in the UK depend. I also felt this important enough to deserve a new entry - not to steal the headline with my response, but you have your inaugural lectures and public engagements, and all I currently have is this weblog as podium.
For those who need some background to the ME and CFS issues in the UK particularly, you may want to scan this entry first (unashamedly my take: Michael's are available online too). Michael is a Professor of Psychological Medicine and Symptoms Research, and influential in the school of thought along with his colleague Professor Wessely and others that proposes somatic explanations for people with ME, or CFS: in other words, that the perpetuation of my illness is due to psychological reasons rather than physical conditions worthy of investigation (other than that of simple deconditioning), and that the correct course of treatment is to realign my thinking and attitudes to my illness with cognitive behavioural therapy (CBT), along with graded exercise therapy (GET). I don't think that's an inaccurate summary, but I'm very open to being corrected. The theory is also applied to many other supposedly "medically unexplained symptoms"; as an example Professor Wessely was influential several years ago in promulgating the view that Gulf War Syndrome may be a form of false belief. Wessely classes many such conditions as "psychogenic illnesses", comparing them to outbreaks of hysteria over "spirits and demons" (New England Journal Of Medicine 2000(342)).
Michael's comment he posted here was:
A very well constructed website. And I agree that patients with CFS and related condition suffer as the undeserving sick of modern society. But if you read Pygmalion by Bernard Shaw you will understand that that is a criticism of social morals and conventions - not a literal statement!
MS
Firstly, I've read Shaw, and with regard directly to the statement above, I confess that I've read, and re-read your original statements dozens of times now in an effort to see in what sense you meant them as supportive. The clouds have not yet cleared, and no light has dawned I'm afraid. I wonder if therefore you could help me read it your way? For others, the context from Pygmalion is a short monologue by Doolittle, father of Eliza, in which he's attempting to extract five pounds from Higgins and Pickering for his daughter. There's a copy of the monologue here and the context within the play here.
I hope you don't mind a little deconstructing to help me better understand your original intentions linguistically. To do things backwards, let's deal with the last sentence of your attributed statements from the 1999 lecture first:
"Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service."
The first thing to note is that nowhere does Shaw use the phrase "undeserving sick" in Pygmalion - the phrase on Doolittle's tongue is "undeserving poor". But I know you're aware of this, as you've shown a particular concern recently to defend your statement in other arenas by pointing this out. I'm wondering how an experienced speaker could expect his listeners to understand, on the hoof, that such a syntactically straightforward sentence could possible be an ironic reference to a short monologue from a play from 1916, when you only use one word in common with that play, "undeserving", with seemingly no referential clause.
In other responses I've seen, you've echoed the same argument as you make here, that you always meant this to be understood as an ironic quotation, on one occasion stating:
... when I referred to patients who are currently poorly provided for both by psychiatry and by medicine as "to paraphrase Bernard Shaw, the undeserving sick".
I don't understand your use of quotation marks above: are you saying these are the exact words you used in the public lecture in 1999? If so, clearly you've been misquoted in every other account, and did indeed attempt to supply sufficient context for your listeners to understand the irony of this comment, as every other account misses out any direct reference to Shaw.
Even were that true however, backtracking to the attributed statement preceding this in your lecture we run into confusions over your intended message again:
"Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the 'reality' of their condition (and who) are in this sense undeserving of treatment."
Having read and re-read, I just can't see how the words "... are in this sense undeserving of treatment" can be seen as a quotation of Shaw's Doolittle's "undeserving", and therefore meant to be, in your words here, a "criticism of social morals and conventions - not a literal statement!". It seems to me this can't be read as anything other than a literal statement of your views, or at least, that you can't expect your listeners and expected future readers to see it in any other way. I'm conscious of the bracketed words preceding it being indicative of something omitted, so if these clarified how you made this clear as a criticism of social morals rather than a literal view of yours that we are undeserving of care, please do take this opportunity to correct or amplify the quotation above. If not, put briefly: in exactly what sense do you, a member of a caring profession, believe that ME/CFS patients are undeserving of treatment, simple because we're not going to die, and because we have a condition about which there is controversy (notably originating from your own school)?
Adding this preceding sentence to the first one quoted, it's very hard for me to understand how, as you crafted this lecture, you expected your audience to understand these highly sensitive statements to not be your own, literal, views of patients' status. It further darkens your portrayal of this lecture as benign and on the patient's side to consider the context of other statements at the same lecture; for instance:
“I shall argue that patients themselves have played a part in denying themselves this type of treatment."
True, if you mean purely treatment designed to change our minds, we may have done so, in the same way a man with a broken leg may resist using his last pound to pay a shaman rather than buy a splint. But can't you see what effect this kind of tone will have on the tax-collector who decides where the various pounds go? And I know you believe strongly in the supposed "witchdoctor" effect a good physician can bring to a doctor-patient relationship, that of trust and belief in the efficacy of cure. Not that I agree for one second that witchdoctory could be money better spent on ME than actually looking down microscopes, but did it not occur to you that some of those same patients might actually read any one of these rather cavalier statements, which quite seriously (for this reader at least) put a serious rift between psychologist and potential subject? That such scatter-gun comments that (let's be honest) class the patient in an entirely different category of mental state from the physician based on no factual evidence whatsoever other than that they show physical signs of illness, further serve only to break this bond of trust? It's not like your lectures are delivered to MI6 in a sealed envelope.
In spite of your assurances that such statements are to help the patient out of the darkness of false illness beliefs and into the light of restructured thinking and the dissolution of the mirage of illness, surely any sensitive intelligent academic in a caring profession could see what effect such statements would have on a wider audience of decision makers largely ignorant of the condition?
Not to paint you into a corner, Michael, I'll point out to others that Professor Wessely of course propagates similar views specifically about what he calls CFS with similar tone:
“Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits etc).� - Reviews in Medical Microbiology 1992(3)
Mention should be made here concerning the character Shaw paints of the person you say you are quoting: Doolittle. As a psychologist, you must be painfully aware of how careful your approach must be to those whose view of the world you believe to be aberrant or over-sensitised. It seems odd therefore, given your professed sympathy with those with ME/CFS, that you chose to highlight their plight with reference to a rather self-pitying monologue, which represents the voice of someone with a conscious wish to perpetuate his own poor state as a vehicle to personal gain. Doolittle states as he grafts for his five quid: "I ain't pretending to be deserving. I'm undeserving; and I mean to go on being undeserving. I like it; and that's the truth". This resonates jarringly with some of your own documented views about why people with ME/CFS consciously or subconsciously perpetuate their illness:
"Many patients receive financial benefits and payments which may be contingent on their remaining unwell. Recovery may therefore pose a threat of financial loss." - Gen Hosp Psychiatry 1997(19)
“These patients want a medical diagnosis for a number of reasons. First, it allows them to negotiate reduced demands and increased care from family, friends and employer." - Gen Hosp Psychiatry 1998(20)
It does make me fleetingly wonder if Doolittle's "I mean to go on being undeserving. I like it." was in your mind when choosing that quote. Or maybe subconsciously?
This last point highlights the problem I have with writing this. You've chosen to engage by replying to my post, but I'd like to understand in what sense you can engage in such debate with someone who, according to your beliefs, is perpetuating her own state of illness, consciously or subconsciously, in a wish to cling to some form of financial/emotional gain she receive as a result. How can you engage in this with someone you believe to be under such an aberrant belief system that it keeps me largely in bed, causes utter exhaustion, very specific pain and flu-type symptoms so strong that sometimes I can barely move my hand for a glass of water, a myriad of seeming indicators of neurological, aural, ophthalmic, immunological and cardiac abnormalities, and can even lower my white blood cell count so much that an NHS-approved lab repeatedly requests multiple re-tests? In what sense can you treat me as a coherent free agent in this debate in which I unashamedly have a self-interest (regaining my previous health and life) and give my comments the credit I believe they deserve as an equal, rather than standing by my bed and nodding sympathetically? I suppose your reply or lack of it to this will indicate your view on this.
The nub of the issue for me is: is what Professors Wessely, Sharpe and co. do real science, and could it therefore make me well? As someone with a lifelong scientific academic rearing, I'm always aware of the importance of the principle of falsifiability. The problem (and for you, the strength) with your school's proposition of what CFS by your various definitions is, is that it, like a religious theory, can seemingly fit any contradictory fact or form of patient behaviour. I might for instance ask in what sense you can believe I am seeking to perpetuate my sickness to gain financially, when I stand on the threshold of quite possibly losing a career I love, am skilled at, that paid me well financially and emotionally, and that I would return to with leaps and bounds tomorrow if I could. It can't help making me think (forgive me) how you would feel should you be bed-bound tomorrow, on the brink of losing your own professorship, and having to wade through an incapacity benefit form in order to maintain some livelihood: I think you'd feel the same. Or do you consider yourself as potentially susceptible to somatic illness for personal gain? But, your answer to this may be "Ahh, in your case it may not be for financial gain. Maybe you have something to gain emotionally from support from family and friends". Well, my family live 4 hours away by car. My friends are a mourned loss by and large, and the few locally who want to visit usually can't, much to my grief and theirs, because the 48-hour kickback physically threatens to further my downward spiral of illness and further put to an end the lingering promise of returning to my current employment.
I can already hear you responding "Ahh, well maybe in your case you've become so accustomed to inactivity that in your deconditioned state, you're wrongly or irrationally afraid that any activity will cause further illusionary illness" - and I can start to point out how a trip to the hospital last week (I insisted on going) is still costing me dearly with loss of sleep, pain, and physical malaise; but I can already hear you interrupting that maybe I did too much and I need a program of CBT and graded exercise therapy. I can try to point out that I spent many thousands on my own cognitive therapy privately during my decade or so of illness, and how I graded my own exercise long before this massive relapse, working upwards in steps to 30 minutes brisk walk a day when I could, gruelling though it could be. But wait, I can hear you already spinning the dial again, and suggesting it's because I have such a set belief in an organic origin to my disease that this predicts continued perpetration of symptoms, I talk to too many other people with ME, I dwell on my supposed illness state too much. And I can respond that a recent study by UCL showed that patients with chronic conditions do better in online communities than, say, concentrating on daytime TV to take their minds off it all, and state my incredulity that researchers can miss the obvious backward connection that long-term sufferers of life-shattering conditions might look for organic agents in their illness, giving that thinking therapies and anti-depressants have failed them; and thus that research will indeed show that believing you have an organic illness predicts long-term illness because you are actually physically ill! But then you can hear my voice raising slightly, and you can silently tick a "neurotic" or "resistant" box in your head, and we start all over again.
Similarly, if I describe any physical pain, by type or location, it seemingly can be put down to a somatic condition or thought-disorder. Presumably losing my high-frequency hearing in my inner ear, as measured by audiograms, could have the same root psychological cause? When I hear psychologists nervously stating that Dr Gow and Dr Kerr's recent discoveries of gene expression abnormalities in ME patients could be triggered by attitudinal states, I know the apaches really are at the fort's gates. "God of the gaps" theory, I think it used to be called.
This is where my doubt in the scientific falsifiability of your scientific method rests: any fact can fit. If a theory can't be falsified by any conceivably theoretical fact, it gains the status of a religion or... unsupported belief-system. If it can explain everything, it explains nothing. My view is that the fatal cracks down the middle of this set of theories that will render it in time a minor diversion of historical curiosity only for those with an interest in scientific fads are two-fold: (1) that the content is consistently more opinion, less facts, and (2) that it's applied broad-brush to an ill-defined population of sufferers termed "chronic fatigue", with no reference to exacting criteria (which exist, contrary to claims) to define subsets. Surely you'd do better to define your population groups like other scientists do with exacting requirement, instead of claiming it can't be done (others can), and then working on those who clearly can be helped by CBT and possibly GET: those for whom depression is clearly a root cause, for instance? Those of us with physical, chronic illness are poisoning your statistics.
Just how bendy the somatic explanation of ME/CFS is can be demonstrated so easily by flipping it round. Quite seriously, are you sure your own beliefs about CFS aren't founded on self-perpetuating false systems based on conscious or sub-conscious personal gain? Does that sound insulting? I'm sorry if it does, but that's where I am when I read your words. Is it not conceivable that you're clinging to this illogical belief system because you have so much to lose if you let it go? Your reputation, feelings of personal worth, family and collegiate respect, etc.? I use the word "you" in the plural of course: your school of thought. Are you sure your beliefs aren't false, perpetuated for personal gain, and have you considered trying some independent CBT to find out?
And I have to ask myself: if you're wrong and my illness is the result of a continuing biological agent or process, still, what harm are you doing really, beetling about your office and shuffling fictional papers between your colleagues and sipping drinks at public lectures? The answer is: a lot. To quote you again:
“Reports from doctors for employers, insurance companies and benefit agencies could reinforce beliefs and behaviour to delay full recovery." - JRCP 2000(34)
Meaning it's probably better if doctors don't look for physical abnormalities or signs of disease. Your school of thought has reportedly managed to aquire the entire £11m allocated by the government to help those of us with this condition, leaving internationally groundbreaking biological research by people like Dr Spence, Dr Gow and Dr Kerr to exist on charity alone; work that will undoubtedly result in a definitive diagnostic for ME in the next few years should they get a funding stream, leaving you the option only of a nighttime flit to a new group of unsuspecting suffers, whose symptoms are currently "medically unexplained" and therefore somatic. These are the very real effects on the reported quarter of a million people with ME/CFS in the UK that your plasticine models of psychologically self-perpetuating illness create. In many many quotes, you and your colleagues continue to actively discourage any investigation of physical abnormalities:
“In most cases of chronic fatigue, few laboratory investigations are necessary." - Occup Med 1997(47)
"In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended." - Ann Int Med 1992(121)
Your school of thought also of course massively emphasises CBT and GET as "the only effective therapies": but study after study, patient group report, and GP's experiences are showing otherwise. I'm sure you're aware that a survey by the 25% ME Group (survey page, survey - doc format) showed that a staggeringly high 82% who had faithfully tried graded exercise therapy as recommended, reported not that it hadn't substantially helped, but that it had made them worse (and that's very ill for people in that group). In this light, the fact that 93% said CBT was just "unhelpful" looks like a goal by the away team. This is all money that didn't go to medical researchers and carers for symptomatic relief and biological research: money meant to be for the relief of sickness seemingly making very sick people sicker.
Of course, an outsider can't jump out of the worldview of any ardent holder of true faith try as they might:
“The majority of patients with CFS have no doubt how they prefer their conditions to be seen….the vehemence with which many patients insist that their illness is medical rather than psychiatric has become one of the hallmarks of the condition." - your same lecture at Strathclyde University 1999
So our illness being caused by errant beliefs is a given, and if we cast any doubt on this they're definitely causing it. One wonders why so many millions of people worldwide exhibiting a very similar specific symptom set would do this, but I guess you must have some really concrete evidence that it's not just a physically perpetrated condition we can't clearly outline yet but instead faulty thinking? Because otherwise, some of the statements above and the strong recommendations not to investigate physically or spend funds on this might look positively damaging to the unfortunate recipients of yours and your colleagues' advice in a few years' time. Going so far as to encourage the confiscation of test tubes in the name of providing me with care does seem to be going a touch too far to me.
But I suppose this whole response to your comment will fall into the same category of behaviour outlined above: if I protest, it must be true; if I float, I'm a witch. Glug.
Finally, thank you for your favourable comment about my weblog, but I can't help wondering how you can decide my website is "well constructed" without visiting more entries than the one referring to yourself for more than two minutes, unless my web server logs lie or I'm too shattered to interpret them correctly. I mean, the rest of my site may be utter garbage, libel, or pornography: you may want to be careful what you compliment, as unscrupulous people might start quoting unguarded statements from professors on flyers and press releases, rather like people select favourable quotes on movie posters. As your web browser blocked the referer, I can't tell how you came upon my weblog, so can only guess for now that you were googling for your own name, but I'd be interested to know if it was via another route. But surely, if you consider the illness we call ME or CFS a false belief state rather than organic illness, as a psychologist your scientific curiosity must be piqued enough by the presence of the weblogs of ME sufferers to wish to study them in more depth? Such weblogs do after all represent the internal mindsets of such objects of study as myself, or indeed (equally interestingly, surely?) our conscious public presentation? It therefore surprises me you didn't read more than your own page, but thank you for the compliment anyway.
To use history to inform the present, my guess is that your own salary is assured: psychologists with a concern that seemingly biologically-triggered and sustained illness states may in fact be instead largely psychologically maintained have shown themselves nimble-footed in moving from patient group to patient group as biological causes and perpetuating elements are discovered. In the past, to the best of my knowledge, schizophrenia, Parkinson's, MS and stomach ulcers have all been attributed to primary psychological causes before a comprehensive trail of organic illness has been traced out through rigorous research work. The school of thought for somatic explanations of illness has always survived these blows, and I'm sure will continue to find new avenues for adventure when the increasingly deafening evidence for organic agents of disease in ME/CFS reaches its inevitable conclusion. To echo your own quotation with the same transposition of words, but from another speaker who should have known better: "the sick are always with us". I'll attribute it to save confusion later: John 12:8. He also said, almost as if he were working in a graded exercise/CBT clinic "take up thy bed and walk" - if only it were that easy.
Postscript: some commenters have suggested to my surprise that this entry may be of interest to a wider audience, so I've slightly restructured it for more general consumption at the following link: http://fumblings.com/msharpe.html - please use this link if wishing to refer to this article from another website or publication. And please drop me a line if you do!
Posted by honey at 8:27 PM | Read or leave a comment (37)
Wednesday, October 19 2005
Down along my restless palms
Apology of an entry: to say that I can't, just now. I'm in the midst of yet another snow-storm of new symptoms which are now taking away my remaining chances of keeping in touch with people: clusters of new, odd migraine-like but more severe neurological symptoms; some blurred vision in one eye; and sudden onset tingles/pain in fingers and hands. The latter show up most when using my laptop, which again proves that something hates me enough to take away my only link with friends, via email and this place. I'd put it down to RSI/carpal tunnel syndrome if it wasn't that it occurred in my right hand and then within 24 hours my left too. I'll have to stop typing this soon as it feels too dangerous and the jabs of "ouch" too jarring.
My pay goes to zilch on Tuesday: I have to enter the mire of incapacity benefit, and David Blunkett's proposed schemes to use lie detectors to determine if I'm a fraud, examine my water, gas and tv bills to see if I'm a fraud, and reams of assessors who nothing about ME to see if I'm a... fraud. Hey, maybe I'm a fraud.
The predominant feeling is, honestly, a return of despair. At these clusters of symptoms, at the poker-faces of my GPs, at the lack of action, at the fear of what all these seemingly neuro symptoms could be on top of the gastric onset, loss of hearing, tinnitus. Surely there's a clinical picture here someone could see? I've suggested TIA's/mini strokes, viral infections, bacterial infections: but they want to call everything I could conceivably get "chronic fatigue" (I have to add the "... syndrome", increasingly sharply, and suggest they read the World Health Org's classification of disease). I don't believe for a second that what's happened to me in the last 12 months is "chronic fatigue": I believe and have told them that I believe I'm under attack by some infectious agent or other, or a neurological condition. No investigation ensues, my GP suggests the ludicrous "reverse therapy" (you'll have to Google I'm afraid), and I withdraw, foetal and in exhaustion, to hope I will fight on another day.
I hope those friends who don't hear from me get here to see this as my christmas letter to explain my email silence, and I hope you don't stop thinking of me as a friend. I can read your mails and comments but not reply for now, mostly. Maybe my hands will get better; maybe my eye less blurred; maybe my weight, strength, white blood cell count and hope return. I remember all those maybe's in that entry here months ago, where I tried to turn them back into hope of renewal. But it's autumn now. There's a million things to suggest and I and my partner have probably only tried a thousand of them - but right now I feel like someone half way up a mountain, in a blizzard, deciding maybe now's the time to let sleep and snow take over.
Posted by honey at 3:56 PM | Read or leave a comment (12)
Wednesday, September 7 2005
Fit teenage sex kittens
I'd like to start this long overdue update with the pertinent fact that if you search for "fit teenage sex kittens" on Yahoo UK and Ireland, as someone clearly did to get here from looking at my stats, this site comes up as the 13th highest hit in the world. I'm rather proud. Hopefully by the time you read this it'll be even higher up the sex kitten charts, on the basis that I've just mentioned it again.
I hope my visitor wasn't too disappointed. If my visitor does happen to return though, I can now provide him or her with what they wanted: voila, Mitsou and Frog (aka "Scout"), our new, eminently fit, definitely teenage and very sexy kittens. Click for more candid shots, and please pay at the door.
Mitsou and Frog are Maine Coon kittens, so very posh fit teenage sex kittens (I'll keep repeating it til I get to number one). Please make them feel welcome, unlike our poor resident cat does, who isn't very happy after months of co-habitation, which is causing me more distress than her. I don't want to have to wave bye bye to Mitsou and Frog, but would do anything for my 15 year old best friend on three legs or more. I'm trying to convince myself I'm not tempting fate by flaunting their luscious bodies so blatantly, and have for months felt something like the co-worker in the office who is pregnant, is dying to say, but doesn't want to yet, in case. Please also vote for them if they happen to fly by on kittenwar.com, because unaccountably they're not top of the charts. Admittedly I didn't spend hours gluing their paws to windows and tv remotes in cute positions to win though. They're mostly a blur.
I may be a sex kitten too (mrroww), but I can't feign either fit or teenage really. Or, I can act the second, and frequently do (in the bad sense) but I can't even really pretend the first, thus my silence here, along with several reasons:
- It's been a rollercoaster physically, and at times I've been quite ill.
- Mentally: same rollercoaster.
- The details of side-effects, drug variations, diet etc. would bore the pants off a stamp-collector.
- No-one wants to read about poo except James Joyce fanatics, and I don't know any.
For those who come here via Googling for parasite information, I should add at least a brief sketch though. If it were a comic strip, frame one would show me screwing up my face on day one and swallowing pills the size of those Cake pills from Brass Eye. Frame two: me prodding my pelvis and wondering why it hurts so much, and musing why my pee is brown, then reading the side-effects list and slapping my forehead. Frame three: me looking relatively pleased after a trip to the loo (I'm sure filters in the big internet pipes coming out of the Atlantic in New York will convert that to "restroom"). Frame four: a rather too obvious sign saying "3 weeks later" and under it, myself and partner in a mad panic ordering enough pills to make it 30 days. Last frame (hilarious punchline): me on day of end of treatment minus one looking very unhappy after another trip to the loo.
I hope that gives the jist without being too graphic (no puns tolerated), but I fear I've strayed into the graphic anyway: scroll back up and try to think about kittens again instead maybe if severely affected. Remember someone else with bad bugs might want to know all this (and they should leave a comment/mail me if they do).
So where am I now: 3 weeks after the incredibly expensive drugs ended, I'm not feeling that hopeful (oh, be honest. I'm very black.). I took two weeks of elite troop probiotics called VSL#3, after checking a millions times that they won't feed parasites (most will because of stuff to feed the good bugs included), and hope that by now my gut is filled with exquisitely coiffured gut flora who are helping to run the rioting bad bugs out of town in their Rolls Royces. Too expensive for long, so now I'm only on some that cost £45/month. I'm sticking absolutely to the badbugs.org diet in case, which makes it very hard for my partner and me to actually find food I can eat.
My stomach/intestinal cramps jumped back into action just before the end of treatment, unsure why, but then departed again for now which is a relief, if temporary. But other signs aren't favourable. I can get tested again in a week or two, but it won't be a definitive test. If positive for Blasto, I face another raft of decisions I don't have the endurance to make about more weird imported drug choices, and months more of this - meaning that the waning of symptoms might just be a temporary reduction in population. If negative, then I have to seek a fuller gut test, probably from America, to see why I'm still so ill. I have to learn more about leaky gut syndrome, gut dysbiosis, PEG tests, candida, ketoacidosis, marasmus. Read about how to sprout seeds, and culture healthy yoghurt. Learn about glutamine and the effects of liquorice (non-sweet variety) for stomach lining repair. I can't do any of this. And then I have to decide if I dare eat anything with sugar or starchy carbs in it again, like say, an apple or a potato (vive la pomme). Frankly, terrified: brouhaha indescriptible is the only phrase I can remember from french textbooks at school that might sum up possible results.
As for me myself I: I'm stuck in bed, and to my horror when I went to weigh myself on a himalayan trip to the mythical land of upstairs, which I haven't been to for two months, I fully expected to have regained at least a half stone (7 pounds, 3kg), and instead had lost somewhat more than that. After prompting from just about the most helpful and knowledgable new email friend to do the obvious, count calories, it's apparent that we can see no way to eat more than 900 calories a day on the above diet if you don't like nuts, and 2000 or so are what you need, so further shrinkage looks inevitable. Meanwhile, trying to do some meagre muscle exercises in bed (stretch a leg, stop - hardly hiking up the Everest) has resulted in ouch-ouch cramping pain in my foot for 5 days running, and my thighs look chickenish. If one more person says to me "you lost over 90 pounds, wish I could!" I shall scream. Please remember when I do, that the screamer will be someone whose previous mission was to eat as much cake as it was possible to within a single human life, and that cake, chocolate, cocktails (at which I was a genius) are things in my deep past, mourned and constantly brushed under the carpet. Surprisingly, I yearn for simple things like a bowl of cornflakes, some milk, a pear: I actually dream of toast.
Proof positive that the Atkins Diet, should you take it very seriously, works, and that it's not a very healthy thing to do.
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My mood (someone patronising in a white coat would call it my "emotional lability") is currently very poor. This is the bit where I confess that none of the tone of this entry reflects how I actually feel, I took several days to write it, and I'm doing it by vividly pretending to be someone else in my head, Boadicea or someone - another reason I held back posting for so long. But someone on livejournal who is nice and kept poking me to post made me do so. I've been miraculously free of Wolf Dread since January (the first definable time I've been able to use this weblog as a diagnostic diary); but I can hear his frosty breath and padded paws in the undergrowth around me now, and I'm terrified he's back, and when he's back things get worse for a long time before they get better. Maybe I should go back and read that entry again, scratching in the dark for some secret spell to repel him nore quickly; or maybe there's an inevitability about his return and the length of his sojourn. So I'll make the same caveat I always do: that if you know me well, and haven't received mail, or have and it's markedly different in tone to this, that's the real me - I'm no Boadicea and I've had no great harm done to me to avenge, just bad luck, and nothing like what others have had to endure. I do all the wrong things in an attempt to mock up a real social life around me: join forums full of new nice people then can't keep up so have to hide, contact other bloggers and start reading their journals, then can't keep up or think how to respond when I'm so down and understandably disappear from the radar, send cheery inconsequential mails to mailing lists of old friends I can't see now as if nothing's wrong, then can't keep up the facade, or ache so badly that I can't be where they are or understand the social references they've all developed since I disappeared from waking life: so I fall into silence. I'm just ill, tired, and wanting to stop fighting now and lie down - it's been too long and I was never built to ride in chariots. Buses would be nice again, some time. I spend a lot of the time at the moment feeling like giving up - yes, with full knowledge of what I said in my last entry. I'm not sure what form this giving up would take.
It's terrible to quote yourself, but in the interests of ecomomy, as I said to a friend two days ago:
I've noticed my whole view of life has changed in the last year - I no longer expect any happiness, and am treating life as a balance between pain and pointlessness and some relief and thinking more about it as a very finite thing with an end not too far off, that will all remain a mystery when I go. I wonder if that would last if I got well suddenly, and the mundane normalcy that most people have, not thinking about their bodies as they carry them through time and space, would make these feelings go away. I suppose it's a whole lot more eastern.
I wish I could do so much more. I wish I could spend more than 20 minutes with the kittens before begging my partner to take them away, because I'm too exhausted and tired with them chewing my toes, bless them. I wish I could go outside, because through the little porthole of my bedroom window I can tell the light's turning autumnal, and I've mourned missing autumn, the only time to be alive, every year, but never dreamed I would miss it so substantially as this. I don't care about spring and summer, but autumn is such a loss: the light somehow is gentler through the little slit of sun from the street at the top of my window, all the harsh arrogance of summer has been knocked out of it and its softer and more kind, and I want to be in it, and kick leaves in it, and smell it.
And I wish I could talk to whoever's reading this about more than illness: I'd bored you to tears with the little I know about etymology, about the wonder of Creoles, about Tok Pisin, about how Lindley Murray in 1794 made us all believe that double negatives cancelled each other out, contrary to almost every other language out there and contrary to our Anglo-Saxon heritage ("Ic ne can noht singan"), and then I'd go on to bore you about how noht became "nowt" and how while the rest of the country was legitimately saying things like "I can't sing nothing", an elite group of Latinite fashionistas in London convinced us all it was uneducated. I'd tell you how, if everything falls apart, but I get some energy back, I'll do a degree in linguistics one day, and become an idle scholar living out a life of quiet satisfaction hidden amongst minutae such as the timbre of a forgotten dialect or the origin of The Great Vowel Shift, happily losing myself in a dusty office forever.
I'd also dive back into the gender debates that I've had such well-thought out comments on here, and which I faithfully promised I would respond to, and still intend to. I'd insist how unfulfilled your life was until you'd heard Joanna Newsom sing "Erin", or Roger Quigley, until you had to give in and concede defeat. I'd quote verbatim from Galaxy Craze's "By The Shore" for hours, or Boswell's London Journal, until you had to adore them. Like the drowned at sea in Dylan Thomas's Under Milk Wood trying to recapture the sensations of life above the ocean bed, all I'd ask in return is something to remind me of the taste of cheesecake or the smell of leaves underfoot.
Fifth drowned:
And who brings coconuts and shawls and parrots to my Gwen now? How's it above?Second drowned:
Is there rum and laverbread?Third drowned:
Bosoms and robins?Fourth drowned:
Concertinas?Fifth drowned:
Ebenezer's bell?First drowned:
Fighting and onions?Second drowned:
And sparrows and daisies?Third drowned:
Tiddlers in a jamjar?Fourth drowned:
Buttermilk and whippets?Fifth drowned:
Rock-a-bye baby?First drowned:
Washing on the line?Second drowned:
And old girls in the snug?Third drowned:
How's the tenors in Dowlais?Fourth drowned:
Who milks the cows in Maesgwyn?Fifth drowned:
When she smiles, is there dimples?First drowned:
What's the smell of parsley?Captain Cat:
Oh, my dead dears!
Posted by honey at 6:49 PM | Read or leave a comment (11)
Thursday, July 28 2005
War on Terror
So, my own war on personal terror finally started two days ago - and this one isn't phony. I really do have evidence of Weapons of Mass Destruction inside me: a descent from the milder forms of ME/CFS for 12 years into (now) complete bed-boundness over 9 months; permanent unilateral inner ear hearing loss; gastric disorders I never dreamed could hit me so hard; seemingly complete loss of restful (delta? stage four?) sleep; and the loss of 6 stone in weight (84 pounds, 38 kg) since October. I imagine teams of little white-coated UN inspectors inside my gut ticking their clipboards, packing their bags and getting their hats: "Yep, OK. This time there's evidence". Not so much a smoking gun as repeated chemical attacks: enough to take some kind of action, surely?
My NHS doctor's reaction over the phone? "Well, if you're too ill to come in, what's the point in me booking you an appointment with a GI specialist?". It's a very strange thing to be able to hear a shrug over the phone.
When you're well, you don't imagine, particularly in the UK, that if you got this ill doctors wouldn't rally to find out what to do, try things, do a little more than a few standard tests and say "nope, you're not going to die" and send you home. You imagine broken legs, and "Carry on Doctor", or high temperatures and stethoscopes; or if you're morbid you think of those cardiac arrest doodahs and beeping monitors. But nope: suddenly losing 6 stone in 9 months or permanent cochlear damage doesn't seem to perturb doctors in the UK, if somewhere on your medical record the words "chronic fatigue" appear. It's like having the Joker in card games: because it can stand for anything, it belongs nowhere; when symptoms are mild, it can be classed as "possibly psychosomatic" in hushed tones; when suddenly dramatic, their undefined class of illness "CFS" can be used to account for every symptom with a sympathetic shake of the head and "what can you do?" look.
I'll try to leave the rest of that anger behind now, as the point of this entry wasn't that: it was to try and use a possibly brief spurt of energy to say something about where I am physically. This is entirely selfish, as I'm so exhausted I'm finding email correspondence extremely hard work, and I can always point you here instead can't I? I know it's going to seem terribly rude when I do, but needs must.
Just before I dive in, I want to say something on behalf of me and all those with chronic disease: how unfair it is that we, unlike others, have to fill our weblogs with entries like this. They're interminably boring to the well, and we know it. It's unjust that we don't have parties, and drunken yachting incidents to blog about. We don't do it because we're obsessed with our illnesses - we find them as boring as you when we get a little better. We do it because this is our lives when things are really tough, and we've found succour from others whose lives are flat-ironed by the same experiences. We do it because we've found information in similar articles that has helped us, we do it because we just want it said out loud. The rest of this entry will have little interest for the average reader, so I'll draw a curtain around it for you to skip if you need to. But you'll miss my terribly deep insight into the human psyche at the end if you do.
This is already feeling barely coherent, so please stick with me if you want to ask "how are you?" (kind people). Here's an answer.
In a dreadful entry, shockingly as long ago as April, I see that I mentioned a parasite I'd been diagnosed with - it's called Blastocystis Hominis and I've only finally now got to the stage where I've started bombing it. This was diagnosed via private testing by my private specialist needless to say - a test conducted by the London School of Hygeine and Tropical Medicine. "Parasite" sounds scary and makes you think of creepy hairy legs and worms, but this one's tiny, has lots of friends, and lives in the bits of your body you wouldn't want to live in. Probably because it has to live there, it gets angry at its lot, and can cause havoc. The conventional view tends to be that Blasto generally causes no harm, except in "immuno-compromised people" - meaning AIDS patients, and similarly unfortunate patients. Thus the NHS, the UK's national health service, have no wish whatsoever to test for it, and should they find it by mistake will put their fingers in their ear and sing loudly "lalalalala" until you go away. The "immuno-compromised" bit is where that Joker above comes in - people with ME/CFS aren't really ill, just a bit off-colour, so clearly the Blasto can't do any harm, and some other mysterious agent X must be causing their odd symptoms: in all likelihood, they just managed to think away those 6 stone: they're often as good as that Paul McKenna on TV you know, or that bloke in the glass box suspended over the Thames. Oh wait, he didn't actually eat.
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Many other sites, papers and doctors disagree with this view, including my own private doctor, and probably the most informative place to go is the BadBugs site, run by Jackie in Australia. She's not a qualified doctor, but cares enough because of her own disastrous experiences with such parasites to compile as much information as she can on symptoms, treatment and mismanagement to try and rid those whose lives have been blighted by these little monsters. I'm hoping I'm one of those now.
Here's why: because when you get so much iller, so quickly, you need to know why. It's such a shock to see your own independence disappear so quickly, your future career look so doubtful that you can't see a way you're going to be employed again, your inability to go upstairs and watch TV, or outside to see a tree, the loss of friends, sleep, food you enjoy, and the thought that you will never again "go on holiday" or "go to the cinema". This smacks a little of desperation doesn't it? Scapegoating an organism you've never seen because of citations on the web, that your conventional doctor who gets paid more than you ever did because you pay taxes knows nothing about ("never heard of it" was the phrase used).
I mentioned, I think, somewhere in this mess of a weblog, that my private doctor thought it entirely plausible that this parasite is causing my repeated diarrhoea, wildly painful stomach cramps, and reduction from ME-person getting by to lump of jelly, and prescribed a couple of drugs which she's had success with: paromycin, also called paromomycin and humantin, and doxycycline - two antibiotics. I'm including the alternative drug names as I'm surprised how many people find this site searching for information on drugs, but it goes without saying that I'm not recommending any treatment here. I may also have mentioned my fears about paromycin: it's from a family of antibiotics that can cause permanent hearing loss, and for obvious reasons therefore terrifying to me. It took months and months to get a view from an ENT specialist who hummed a lot and leafed through a booklet, and took ages to get back to us with his view that it was probably ok. Probably being not good enough, because I always seem to fall into the smallprint of "incredibly rare side-effects only leprechauns and faeries get", I asked questions on mailing lists, spent days of real-time trying to find out for myself alternative treatments, and found websites like Jackie's. My partner went through a ton of information, and we eventually settled on the combination of an anti-parasite drug called Nitazoxanide (Alinia, Daxon) combined with an antibiotic called Rifaximin (Xifaxan) as the nearest thing to a best bet. My specialist said "ok", we discussed dosage and length of treatment based on papers we'd found, and she approved.
It wasn't over. Blastocystis Hominis and similar parasites are notoriously difficult to kill, and no drug has 100% success rate - I corresponded with someone who had tried 6 separate regimes, and it was still inside her, having a party and spilling beer on the carpets. When they sense attack, they turn into cysts and cling to your colon wall, like limpets. There's evidence that they build resistance to antibiotics, so you have to hit them hard first time. There's a mass of anecdotal hints about how to increase the effectiveness of your drugs, by taking Lipozyme (a fat-splitting enzyme) to hurt the little bastards' cyst-y fatty shells, and taking Pysillium (a soluble plant fibre) to help the drugs get 'em and keep you moving inside. Much more agonising over possible side-effects, pros, cons. And then the dreaded debating over purging first with Picosulfate.
It still wasn't over. You can't get these drugs in the UK, so we had to ring the US for the Nitaz, who made us ring Belgium. Same with the Rifax, made in Italy, procured from Germany - all formally, via my physician. We had to decide on doses: the Nitaz manufacturers recommend 500mg twice daily for 3 days, and most accounts out there say 1000mg twice daily for up to 14-21 days for Blastocystis will still only maybe kill it. Similar debates ensued about Rifax dosage and duration. Agonising about whether to add a third drug, Furazlidone, which is supposed to again increase effectiveness, but time just ran out: by a month ago my gastric problems were so chronic and painful my stomach cramps had turned permanent, and just so ill I couldn't get out of bed for half an hour without repercussions for days.
The total bill I think came to about 800 euros or more: but I'm not looking as I don't want to scare myself. The drugs arrived last week. On Sunday I took the supposedly innocuous two teaspoonfuls of Picosulfate and Monday was hell on earth: it's supposed to take 6-12 hours, took 15 on me, was very painful, and lasted another 15 hours. First horrors over, onto the drugs. On Tuesday I chickened out and took half a dose, and yesterday the full dose:
12:50pm: glass of water filled with 1 teaspoonful of Psyllium husks (yuck)
1pm: 2x500mg Nitazoxanide, 3x 200mg Rifaximin, 1 Lipozyme capsule, with food
8pm: 3x 200mg Rifaximin, with food
11:50pm: Psyllium 12am: 2x500mg Nitazoxanide, 3x 200mg Rifaximin with food
I'm adding these details for those who've come here specifically to search for Blasto treatment: the rest of you can stand behind the curtain and talk to the nurse, and will probably specifically want to for the next paragraph.
Yesterday I felt surprisingly good - you can never predict what drugs will do to someone with ME/CFS, and most descends to folklore: that you will feel remarkably better on antibiotics and this proves it's really Lyme disease/Borreliosis/a hidden virus; that the antibiotics caused it in the first place and you're insane because you'll kill of your body's remaining friendly bacteria (hint: take probiotics afterwards); or that you'll feel absolutely terrible, because the dying organisms will release toxins into your body ("die-off", "herxing"). The latter school maintain that if the drugs hurt, they're working. I'm pretty sure it was the Psyllium, a harmless little plant thing that did the good yesterday, as, how can I put it, something started happening that was only happening once every two weeks before. With other strange anti-gravity effects that I'm too bashful to describe. Private communications only.
So was I supposed to be pleased I felt ok yesterday, or disappointed I wasn't in agony as it meant 800 euros and 4 months' hope were being wasted? Today has solved (complicated?) that dilemma, as I've woken up after 4 hours' sleep to feeling dreadful: extreme ME-like symptoms of muscle ache, fluey malaise, and poisoned system feeling, and the strangest pains in my pelvis and lower legs, quite dissimilar from the ME/CFS muscular aches, like internal bruising; almost as if I'd slipped on ice yesterday and broken something. At 3am on my left hand side - now on both. It's amazing how subtly infinite different types of muscle pain can be: with ME you become a gourmet at defining each type. I purposefully didn't read the symptom sheet before (shades of being accused of hyperchondria) but guess what? It turns out pelvic pain is an "incredibly rare you-won't-get this" side-effect, as indeed are pains all over - which are appearing at the oddest places: half way up one forearm, a shoulder. Yes, the leprachaun effect: whatever side-effects you've got, I'll have one please. The reason I'm typing this now is testament to the effect of prescription-only 60mg codeine plus paracetamol tablets, my one thing I can be grateful to the NHS for after 12 years of ME/CFS. It's taken the edge off enough to sit up and type.
My partner's read that the pain, the malaise, the high temperature and illness caused by the Nitaz may be "transient": I hope to goodness. I have set my sights on 14 days or more of this, as per papers cited for AIDS patients. I have to be able to get through this. My wish-fulfillment hopes:
That my crash from 12 years of just-getting-by with ME was caused by Blasto, or a hidden parasite riding on the back of it;
That the drugs will work;
That once I'm rid of it, my strength, muscles, ability will return;
That I'll get back to where I was: ill, but capable of outside life;
That it'll be in time to retain some elements of my previous existence.
My not-a-chance dreams:
That my hearing, which disappeared on the same weekend as the gastric crash from health occurred, will return to normal;
That most (all!) my ME/CFS symptoms are caused by a parasitic component and I'll be a well person.
My fears:
That the drugs won't kill it, and I'll embark on 12 months of deadly antibiotic and anti-parasitic drugs, at huge cost to wallet and health;
That Blasto's irrelevant and when gone, I'll still be as ill, and not find out why;
That the expensive imported drugs will give me... cancer.
That last fear's a reflection of the fact that you feel like a naughty school kid looking up drugs on the internet, finding private doctors, importing drugs that your local GP sniffs at and has never heard of. 
Britain really is a ridiculous place: unending obsequiousness towards anyone in the medical profession seems to be weaved into our DNA, and if you dare to actually look anything up on "The Internet", you're self-prescribing. And you will pay for your lack of respect with pestilence and disease.
I'm going to try and end this, which must be my longest most selfish entry, with something about hope, because someone close to me, also with M.E. said to me when I was at my lowest, that she needed 1% of hope from me, even if the other 99% was complete despair. At the time I couldn't give it to her: hope is so scary, and for me has always led to terror when it turns out to be false. Well, this entry's my 1%; my 10%, my 30% - because you have to roll the dice sometime, and I guess this is my roll. Please, if anyone got this far, expect little from me for the next 2 weeks, but hope a little with me during that time, if I can tolerate the drugs. I've always tried to find a balance between the heartbreak that constantly dashed hope can bring, and the resilience of belief in a better future. At 4am two mornings ago, trying to sleep with the radio on, I heard a quote from Antonio Gramsci that cast a thin shaft on light on how to survive as a self-preserving skeptic:
Pessimism of the intellect, optimism of the will.
So - the drug's won't work; the drugs will work. I won't get better; I will get better. A hostage to fortune, but you watch me.
Posted by honey at 8:36 PM | Read or leave a comment (21)
Friday, July 1 2005
It's July already
Fumblings will return, after some continued illness and imported antibiotics. Please don't unbookmark me, and thank you for kind mails, which I will reply to.
Posted by honey at 12:04 PM | Read or leave a comment (1)
Tuesday, May 10 2005
Things that still matter?
I'll have to let others say it for me just now; from a friend. Click on it.
My honest answer is: I don't see why things matter, but thank you.
If it matters: after all that happened in the last 10 days, I contracted another flu-like infection at the end of last week, followed by stomach infection which means bad stomach cramps and I can't hold in food for any more than 3 hours - for 3 days and counting. This after taking more vitamin C (3.5g) to scare off infection on doctor's advice, but I can't believe that would do this to me for this long. This is just like the stomach infection I've had repeatedly for the last nine months, the first appearance of which coincided with my hearing loss. Doctors shrug; I sit terrified it will reoccur, amplify or migrate to the other ear. If I learned anything from computers, it's that if you don't find out why it crashed, it'll happen again, and do more damage next time. If someone tells you your PC crashing is "idiopathic", refuse to pay. I feel completely helpless: driftwood at sea waiting for the next splintering wave.
I've always had three things keeping me going: friends, music, and my imagination. Friends are only present via a keyboard and few and fewer and increasingly quieter as I get worse to be with; hearing is eating up my music; and my imagination's suddenly and shockingly dried up, like a rusty tap you dare to turn off, which suddenly won't turn on again.
I seem to dash from pitch blackness to illness and back again, til I don't know what day it is: the sequence rushing by ever quicker, scenery streaming past faster and faster, like the dramatic chase at the end of a film. Some monstrous joke where my mind and body alternate lines rolls towards its punchline. The coming of a weekend always surprises me: Saturday feels like Wednesday. How can things go so fast?
Please bear in mind then that everything's caving in just now. I can pretend cheery for so long then I will crash out, freak out, not answer emails, be suddenly tearful, angry or rude; or, if you're a close friend be very scared to you, bore you, offend you or make you miserable which will make you want to go and talk to someone else. Which you should go and do. If you are a good friend, you should tell me that is what you're doing.
I suddenly don't care about being very candid in this weblog: what is it for anyway? Who's reading and why? Is this a bad way to think? The next time I am terrible to you, please remember that I know less about what is going on inside me than you do, have some pity, and tell me what to do next. This could just have easily happened to you. I know I'm showing little of Saint Emily's courage, and maybe you would do better than me. But if you think you would, show some while you're well too, and either help me or be honest and tell me you're off.
Love After Love
The time will come
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other's welcome,and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved youall your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.Derek Walcott
My biggest fear is that when everyone has gone and the show's over, there will be nothing of my life to feast on, and no stranger to love, just bones and sinew: a life in the lonely waiting room of gender, in the hushed and guilty bed of M.E. Who can fill up a lifetime's larder of memories from a bedroom, and a mind that won't issue me a permit for shoreleave? I even have to borrow others' pictures and words.
Posted by honey at 7:22 PM | Read or leave a comment (6)
Tuesday, April 26 2005
A Day
An entry I wrote yesterday: my most shameful and dangerous, but why not just post it? It's the truth about me, and how my days are. I feel like death today - on the edge of something very bad - so it may be gone tomorrow. I'll take any help anyone has.
This entry deserves and will get no illustrations. You probably should not read it, and I probably shouldn't publish it.
09:15
First memory of looking at the clock amidst usual mess of semi-lucid disturbing dreams. Usual sleep paralysis: heart-beating wildly, knowing I should wake myself to calm it, and sleep again. What am I dreaming: about work, about having to be at a meeting in town, for some reason with a schoolfriend, being late, stuck in a bookshop, and almost too ill to move: the usual mess of fears and being stuck, ill, wriggling in a web. Check: is my left ear screaming tinnitus? Yes... will it be a tinnitus day? Maybe. Pain in centre of chest. My hand stumbles across the bedside table to take a clonazepam: three a day, keep it up, and it might help me sleep - fleeting thoughts, always doctors - Dr Myhill says I need 9 hours a night - Dr Cheney says clonazepam protects the brain from the damage caused by CFS/ME. I dive back into the dream too quickly to wake and change it because my body's too tired to do what it should and sit up for 2 minutes, I'm back in the bookshop, trying to keep a job, trying to keep my friend from when I was 14 happy, and worry worry worry. I'm late, always late, and clinging to the edge of the real world out there I actually left 6 months ago.
11:45am
I wake finally, like dragging myself from quicksand. Oddest most unusual dream, so unlike me: I am with my Grandpa, who died 20 years ago. For some reason we're in Montreal, where he's moved to in my dream, and we're walking down a street, and he looks healthy, his face is full and happy like I've only seen in photos from before my memory starts, and I have my arms round his neck and I'm hugging him and jumping for joy: I have a girl's body, I have hips, I'm about 18, and I'm so happy when I wake I feel a real gorgeous physical pain in the centre of my chest where the fictitious heart is. "I didn't know you could be this happy" repeating over and over to him in my mind as I hug and hug him and he looks embarrassed and happy and healthy, to have a granddaughter who loves him and loves just being herself hugging him as they walk down the streets of his new hometown.
Where on earth did this dream come from? My Grandpa was old and thin in all my memories, a shuffling humble quiet man, worried about her daughter's car crash of a marriage. Was I his daughter in this dream, who he loved so much? Was I my own mother, now gone too? Did they two have this flicker of an experience once, of hugging on a street, of sheer joy at each others love, the simplicity of a love between a man and his own sweet daughter? Is it a gift to me, for a second, now they are gone? But I don't believe in the dead living again, or messages from when they are gone. They did, both: "this world is not my home, I'm just passing through". But my Grandpa moving to Montreal? Impossibly stupid thought from a jumbled sick sleeping mind: he always seem a frail ghost after his wife died, hobbling through the 80s, fighting against the wind. He would, could, never have left these shores for the west - he spent too long in the east when he was young. And I never usually dream I have a girl's body, or that I am happy, much as I yearn that my subconscious would take me there. Why now? Darkness and loss and the stupid randomness of my dreams descend and the pain of joy in my chest just turns into mundane familiar pain.
I wake into the darkness of my blackout-curtained room, like crawling from under soil, a mistaken burial; my body waking around me, reminding me it's here, and hurting and broken. Tinnitus: heart sinking, not another day of screaming ears? After some minutes of trying to move my pathetically trampled body (thoughts of mangled butterflies) I switch on the tinny music from my little PDA by my bed - if I can blast enough quickly into that ear on waking I can sometimes lower the tinnitus for the day. Folklore from my memories of conversations with my audiologist drift in and out of my head as the only internet station I have programmed in squeals appallingly rousing or forlorn folk music into my left ear. I try to move my head on the pillow so the music gets into the correct ear canal, craning my neck, but I can't sit up yet. Lots of things hurt.
My head is buzzing from that last dream - the pain near my heart, of the happiness ("I never knew you could be this happy") of Montreal, and hips, and my healthy happy Grandpa loving his healthy happy granddaughter - where did it all come from? I'm awake in this broken, male body. I don't stand a chance of walking down a street today. I feel such sadness and loss swoop down to pick me up in its arms, and dive to diversion: my PDA. Check my mail: nothing. Pathetic feeling of "I want friends", while knowing I don't mail others, because it all feels so pointless, as I have nothing nice to say: what do I have to bring? I check some people's blogs: someone who's mysteriously disappeared from my life like I'm poison, and I can't read for long, aching for her real life, wondering why I flashed through her life so quickly and suspecting it was because I was too much to bear (I was) - but wishing she would answer my mail and just tell me so. I skip to another friend's weblog, and she's written six new entries since I last looked - where does she find things to write about? I read, methodically, through her DVD reviews, her lovely jousting style, like she's right here, vividly nudging me and telling me I'm so wrong about everything, and laughing me out of my fear and dead-flowers-widow room. I read on: she's so full of life, and I feel inhabited with ghosts: I know she's had one of the worst weeks of her life and look at her? Bouncing and trying and living and succeeding. I read about her times with others, her supportive emails from friends, and I think: did I send any? Did she feel she could tell me enough of her last week's horrors so I could support her in the same way? and know she felt she couldn't. And that she was probably right: I am like glass, like lace, and I break so easily. I feel like the dying patient, hushed tones around my bed.
I read on. About her days in other cities, her meetings with others. I read others' weblogs about meeting her. My stupid, pathetic jealousy about her being able to do this, go to places, meet people, make friends so easily: her unconscious simplicity of being in her body. I mourn the dream with my grandfather, of being in a skin I loved and hardly thought of ("I never knew you could be this happy") as I read other men's comments about her: as a woman. I know this will never happen to me, and it hurts me so, and at the same time I feel so guilty, like I'm pressing a flower between the pages of a book: stifling her three-dimensional life into my own two-dimensional fictitious longings, making a dream of perfect happiness out of someone else's normal life. Such guilt, that I dig my own grave. I stop reading. I check my ear again as the tinny music bores a hole into my ear, winding through eardrum, hammers and cochlea, to seek out the tinnitus and turn its clang into whispers. I can't tell if it's going to work today.
12:30pm
"My weblog: so silent. Who can still be reading? I must write. What to write? I can write down my day, I can say what it's like, for me. One day I may look back and understand all this."
1:30pm
L comes in, a shock as I am writing this: clock: "it's 1:30". Brings me a flower: "I nicked it from a tree". Feeling of terrible swooping loss sweeps through me in a wave as something from the outside pushes its way into my inside life: "I don't know what to do with it". "You put it in a vase and look at it". L immediately angry, bustles out, gets vase, guilt as I lie like a straw doll in bed. Guilt, guilt: am I causing this? Could I have that life outside? Do I want it even now? Everything a start with no reason to finish. Why do I upset others so?
1:55pm
I hear L cooking, lunch for the sick after a morning's work. Should I be forcing myself up? The hundreds of millions of words written about M.E. and anxiety and depression a useless jumbled algebra, telling me nothing about how to pace, when to move, when to rest. I just feel so guilty. I must be doing something wrong to be this ill. Yes? Same thoughts chasing around my mind for a thousand years. Such useless crashing waves.
2:15pm
I'm crying in bed now, stirring cauliflower round and round a bowl and telling L my dream. My arm is rubbed lovingly and I hear comforting words, but as if through sheets of ice, I can hardly hear. Do others lead simple happy lives? Am I conceited and selfish to believe they do? To live one happy, contented day seems to impossible to me now, and everything makes me think of the fewer days I have left, like some selfishly inward bereaved patient in an old peoples' home complaining at her lot to anyone who will hear. I realise I don't actually know if everyone is living lives of quiet desperation, but smiling, and it's just that I am too selfish and cowardly to smile. Or if people exist who genuinely float along through life, waking happy at a new day. My ear screaming now. Higher blood pressure raises tinnitus. I remember another friend with M.E. telling me not to call myself cowardly: call it "gun-shy". I look to see if she's online - I should have called her when I said, everything went too sad and I couldn't - but she isn't.
2:30pm
L leaves for afternoon of work. I have to put jangly ugly music back to my ear to stop the ringing - I rest it on my shoulder as I lay in bed. I have herbal tea on a tray and a pear, for my afternoon. I don't miss the things I can't eat anymore: anything but a small amount of sugar in fruit, wheat, cereal, dairy, all gone. I think about my specialist putting me on this diet, and feel stranded now, stuck on it forever: when does she decide it isn't working? What does she do then? I started in October, with a brief hiatus over Christmas. I've lost 50 pounds, because food is no longer something to enjoy. I'm no better. Or am I? Or is this illness fiction? Is there something else I should be doing? Same thoughts chasing tail, I try to jump out the hoop, but I have another afternoon, and evening alone.
2:35pm
I get a text message from my friend in Sweden: she is shopping with her Dad, and sends me a nice thought to cheer me, to give me a little break into an imaginary world. It does, and I think how lovely she's been to me in the last month, on top of all the years she sat and waited while I never replied to her mails. Faithful, guarded, careful in her promises and true like a bell. I feel bad for my whines about having no friends. I feel fear she will disappear. I feel too fearful to reply just now. I think of her now, in a busy street, shopping, her life ticking by, and how simple-happy she says she often is, and imagine her walking amongst cracking twigs with her foxes. It's going to be very hard for me to not imagine her in that video I sent her.
I think of my other friend in America, of our intense fierce love for each other that burned so fiercely for five years, and how hard we find it now to turn it down to a comfortable loving - I feel so sad and guilty, and miss the things we had so badly. And wonder if it's my fault, over and over, and like every day, how to form the words to her. How I miss her gentle soft voice, which I can't hear anymore but which kept me safe for five years, and where did it go? I think maybe I ruined it all. And how every day I want to mail, trying to find a way to her soft voice again, but how I fear the reply, because I am full of fear for everything. Gun-shy.
I realise I can't post this publically.
2:50pm
I realise I didn't take my lunchtime after-food medication, so I scramble in the box beside my bed:
1x essential fatty acids
1x multivitamins and minerals
1x vitamin C 500mg
1x vitamin D 1000IU
1x Gingko Bilbao
I add 1 cranberry pill for the cystitis I seem to have caught in the last week - L can't find unsweetened cranberry juice, and I'm not allowed any sugar. I will double up most of these pills with my evening meal, and add zolpidem/ambien 5mg for sleeping, and more clonazepam/klonopin (1.5mg/day). I think of my weekly B12 injections, worry about whether it will be doubled, and if so, will two trips a week to the nurse provoke bad relapse? I jangle with pills like bells on a Christmas tree.
I drop the pills three times and scramble for them beside my bed like an OAP. I worry again about the antibiotics my specialist ordered for the (common) parasite they found in a lab test, my adrenal test kit I'm supposed to take, the calcium, boron, B6, vitamin A, folic acid I read on countless confusing websites I might have to take to counterract or aid the effects of the vitamin D and B12 I take - I try and remind myself to have faith in those who promised they would balance these for me and just keep quiet until I am told. I wonder if faith in supplemental nutrition to aid CFS/ME will be the joke of 2010: I am no better.
3:05pm:
I realise I need to take the first of my "Magic Minerals" drink, as prescribed along with all the rest: this will require me actually getting out of bed, because a glass full of it turns green at a little point at the bottom: something from school chemistry makes me think this must be copper or iron, and I think of the luminous green some metals turn underwater: I remember harbours and boats and rusting iron and the smell of the sea; I wonder what colour my inside is after drinking it. I read the side of the powders: calcium, magnesium, potassium, zinc, iron, manganese, boron, copper, molybdenum, selenium, chromium, iodine, vanadium. Chromium? Sounds like metal polish. Iodine makes me think of purple and I wonder why. I have to drink 3 pints of water with this in a day: it's a bit like drinking water with a sprinkle of sand in it. I wonder for the 5 billionth time if this is all a myth and I'm filling my insides with dangerous nonsense. I imagine a world-wide health scare over molybdenum in 2008. I think I'd quite like to know how I will be in 2008, and think of The Time Traveler's Wife. He was dead by then.
I get up, then, to clean a glass. I wonder if a shower would ruin me for the day. I decide to risk it. I worry about my hair and feel ashamed at the worry. I don't look at myself in the mirror. I battle fear and guilt and blackmail myself by turning on the shower to warm up as I wash a glass.
3:35pm
I delay by complaining on a message board, for no reason about something inconsequential. Someone nice who I know will probably read this later messages me from their work. I worry about patient-syndrome, but think how kind they are. I wonder what I offer others now. I get scared at a teasy well-meant comment about alcohol (will I ever drink again?) and reply with the most sour puritanical comment about my restricted life, as if they haven't heard it a million times before. I apologise, and retire ashamed to turn on the shower.
I nearly give up because I can't find a hairband for the shower. Feel very ashamed.
3:55pm
I return from the shower, having taken the risk and shaved as well, and feeling the shockwaves of exhaustion crashing in, I get back into bed instead of going to the garden room, as I planned, and promised someone. I try not to think of shaving as a mockery of nature: that and my fear of losing hair as the final insults my body can throw at a girl to really put me in the grave. Shaving is something to be proud of, or at least amused by if you're a boy of 13: and something to be ashamed of as a girl. To lose your hair as a man is something disliked, and sometimes mocked by others in a friendly way - but to a woman, it's seen as a shock, a medical condition, and one only deserving great pity and help. I wonder, terrified, which treatment I will receive, pray it won't be soon, and think how in 20 years' time male pattern baldness will be a thing of the past, an oddity like scurvy. People with fine curly genetically-modified hair at 80 will stare blankly at bald men in the past, and wonder what it was like. I think how mine is all just cowardly, umm, gun-shy fear: my hair is still here for now. I recall my sassy weblog entries earlier, about how it's all about the insides not outsides, and their bravado stings and shames me.
The sound of the shower makes my ear ring badly, so I only stay in quickly. But baths are worse. My mind wanders off as I wash, and for some reason dreams up a new series of Through The Keyhole with David Frost, but for transgendered people: "Who'd Live In A Body Like This?". The name of the program suddenly sounds disconcerting in this context, and I turn off the shower.
I shave as quickly as I can and flee back to bed. I realise I didn't get the glass and spoon for my mineral drink, and walk slowly as I can to the kitchen, praying one will be clean. Heart too fast, sign of impending relapse. Ear clanging, things feel unreal. I return, pour bottled water and mix in powder, start to drink slowly my first of three pints of sandy water for the day. I realise my cystitis thing is back, and tease myself cruelly it is cancer and I will die soon. "This world is not my home, I'm just passing through".
4:20pm
My Swedish friend is back from the city and messages me: I think "so early", then realise it's 4:30 even here. This illness is suddenly making the hours, weeks fly past like a fenchposts on a motorway. I talk to her, hate the clanging in my ear, and put on headphones guiltily: they may not be good for me. I listen to "Young Prayer" by Panda Bear, because I need something dissonant and disconnected, without emotion.
4:35pm
She refers to the people in medical units who take blood donations as "bloodnurses" - I love the way Swedish contracts words together, like Anglo-Saxon, even though I think she was just trying to translate it for me into something I would understand.
(honey) "bloodnurses" would be a good name for a swedish lesbian vampire film
6:35pm
Ridiculous weblog entry, this. If anyone sees it I will just feel shame - will I post it? I talk online, try to take my mind off things with a couple of nice people. One of them claims I am a "terrible flirt" - my goodness, I have never knowingly flirted in my life: as if anyone would like me. I think it's his sordid imagination and way of cheering the ugliest girl in the world up. It's nice of him to try and cheer me up though.
I never did get out of bed, did I?
L's back and we're going to have tea. It's what we do next.
7:45pm
Talked more online trying to talk my fears away - felt some relief from the gnawing anxiety after talking with a friend. Realised I hadn't taken my clonazepam and gulped it down. Eat with L and everything started feeling bad again - ear squealing, anxiety very high. Clonazepam seems to be working like a leaking radiator. Just had to sit in bed and talk talk and find things on laptop - 15 hours a day stuck to the keyboard, chasing... something that I never find, some peace of mind. By 9pm my anxiety, sadness and self-hatred is so high that I am ruining the only chance I have of relationships even online - real life ones shot to pieces anyway. I can't get out of my self-hate loop, and my dearest friends online are having to literally dump me out of the sky tonight, for my own good, hit the off switch and get on with their waking lives, or sleeping dreams. "You can make you own hell, without any help from me" - Elizabeth Mitchell sings this to me as I type this. L staying away from me like poison, getting so mad everytime I get so anxious. Because I am like poison, when I am so anxious.
10:05pm
I used to say I get better in the evenings - I think I said after midnight - and I'm a sitting nervous wreck now, roadkill for any fear that takes its fancy. If I get better after midnight, what sense is there in the nagging guilt that my doctor gave me, that if I don't sleep by 9pm, I will be ill forever? It gnaws at me like a curse. I'm alone now, online contacts scampered for cover, and it's my fault, all. I feel like I'm bleeding grief and self-hatred through my eyes and just a wish for this all to be over now; I'm telling people online to find other friends, because I'm not going to ever get better, and they will need proper ones; I'm telling others that I can't talk to them again because I get too upset and jealous. All around I am pushing people away, when I feel so desperately alone and scared and want holding and telling this will change. But I can't see or feel or imagine any hope or change happening from now on - this is too set in now, I'm too deeply immersed in my own tangled bush of hopelessness and illness and sadness at the loss of any real gender I can be in the world. Oh, I can't express it - a "bad day" - self-disgust - a longing for it all to end.
I didn't take my dinner supplements, so I shove them down now, hating every gulp of this useless last gasp at witch doctory.
1x essential fatty acid
1x Vitamin D 1000IU
1x Vitamin C 500mg
and another cranberry tablet. Left ear screaming at me now, given up and blasting music through headphones at it. What am I going to do?? How will I ever get out of this, be like other people seem to be, have friends, have a life, if I'm too ill to leave the house, and if I did too terrified of what they think of me, too horrified by the thought of how I look, too guilty about those who might think "he" but say "she", not wanting anyone to make an effort anymore? And if by some miracle I slipped through a hole like Alice and found an insane world where a cure for M.E. was to chew on a dock leaf, and I looked like an Alice, how could I still stand this clashing in my ear? I can't imagine a bar, a restaurant, a cinema I could sit in without pain and unsociable deafness, and just wanting to flee. It all feels so overwhelming and hopeless. And I read about those who overcome such greater obstacles, and I feel like dirt on the bottom of someone's shoe.
L brings me some soya milk with vanilla flavouring from a pod (no dairy, no sugar) just because of kindness, and I shout out my anxiety and fear and am alone again in an instant, understandably. "You can make you own hell, without any help from me". Soya milk to me tastes like eating "fruit of peas", which to me, isn't a nice thing. I feel guilty for not liking my gift. Headache starts to build, but then that's my fault too, right? I never did get out of bed, did I? My own hell, my own blame.
I realise yet again I didn't manage my 3 pints of sandy mineral water, and hastily pour another half pint to try and get near. I worry what is causing my terrible sleep - could it be minerals too close to bedtime? Could it be zolpidem addiction? Clonazepam? These things are supposed to help. One of the 5000 other things I'm taking? Staying in bed all day ("sleep hygiene" - the mantra)? A broken hyperthalamus-pituitary axis, whatever the hell that is? Just being ill. Melatonin smashed my sleep into pieces. Do I dare take the dreaded mogadon the doctor gave me with a resigned look one day? I worry about medication all day, what I am doing wrong, whether I need to read the three hundred new articles I get from CFS/ME Yahoo lists every day - maybe the answer's in there somewhere?
11:05pm
I read back through this entry, and think again how terrible it is, and wonder if I will ever dare post it - a snapshot of the real me. What would be my motivation? Sympathy? I've had enough shots at that. Help? I get more than my share of that. Hope? No-one can give me that, no-one can promise anything about this illness, or my future. I get very scared about work again - salary cut in half this month, and terrible fear that my working life is over forever. I wonder if I said this before in this entry? I said it to someone else today online; but my short-term memory is so shot now. This sets off a chain of panic about what caused this terrible drop in my health six, nine? months ago - the hearing loss, the neuro symptoms. The evils of M.E. decided to make a go at a V-Day landing, 12 years into the war, and successfully crossed the blood-brain barrier? - beach-landing successful, occupation permanent?
11:10pm
I'm cut short as I panic above: L comes in and asks how my milk was: I panic and talk about the clanging in my ear and am told "it's just tinnitus" - I crack, fly into panic at the thought of living with this all my life;
[Content removed because I just can't...]
Everything's changed and the house is full of ghosts. I am point-blank terrified just now as I type this. Yesterday is like today is like tomorrow and it's all me alone, and these terrible internal conversations going on forever, and me ruining everything, and nothing ever making any sense again. I hear some banging sounds in the kitchen. I remember the weblogs of others with M.E., particularly one on livejournal, I think of the closeness and solidarity between partners there, and the bravery to fight on, and I feel shame, shame, shame.
11:25pm
I try and calm and work out why it went so so badly today, as another night begins. Was it writing this entry? Normally after I have written something here, some kind of truce descends inside me. I often call my illness "thinking disease" - that I think too much on every possible danger, magnify every fear and trample every hope. I thought today when I started this it would be instructive to me to see how a day worked: isn't this the first step in behavioural therapy? It seems to have magnified everything and thrown me into hell. But I hate this being called a "bad day" - so many are like this. Good days do not follow bad days like day follows night, and I hold no hope for tomorrow. But introspection? For me? Like stirring a bee's nest with your hand.
[Again, I just have to remove content here - sorry, I just can't and shouldn't include it. For some reason it feels important for me to say I removed it.]
11:40pm
The rest of the night will go like this: I have to type it now because I won't be able to complete this later: breathing very heavily, so scared now. In the next 30 minutes I will decide I have to start to sleep and I will take 3 hours to do so. I will never understand why I always do this, until the day I die. Before sleep I will take 1 zolpidem/ambien 5mg, my third clonazepam of the day, and a pill I am too ashamed to mention. I will leave a spare zolpidem out, which I never take, and another clonazepam for the morning if I wake early with nightmares. That's where this entry started and you came in, and we'll be back in another day like this, which I won't be documenting.
Posted by honey at 2:35 PM | Read or leave a comment (5)
Wednesday, March 30 2005
A princess wishes she were a frog
OK, so. I'm spending my days with my laptop gently, or fiecely, warming my lap, in bed most of the time, wondering what happens next. I guess this doesn't occur to treefrogs in the Amazonian rainforest, as something always does happen next: either they mate, swallow, or get swallowed, and it all happens very quickly. Hopefully they don't anticipate all the time, worrying their little froggy nights away about the greater amazonian treefrog-eater, like humans do.
But what does happen next? I've had this crashing relapse since July, with some space inbetween where I hoped it was just the usual type of CFS/ME relapse I have, where I recover after a week or two, or at worse, a month or three, and suddenly the chequered flag for Easter flies by and it shocks me to the core. July to Easter, and well, let's be honest: the best you can say is that I might not be worse. Some people with M.E. follow a gently ascending arc, like a coughing firework: from the shock of first illness, which on later reflection seems mild, returning to work (because we all work), and from thereon arcing downwards, fighting to stay in work to the exclusion of doing anything but lying down in the evenings and at weekends, and eventually splutter their fire out and fall to ground. Others burn their fierce illness brightly from the start, in hospitals, with a cluster of excited physicians all looking for an interesting organic agent, finding none and dispersing to more journal-friendly fodder: these bright catherine wheels of illness often seem to improve dramatically after a year or so, while the arcing rockets just keep getting worse. Oh to be a damp squib.
I always thought I was the third kind: the kind who just stay the same. We get ill, we read some of the terrible fight those with shattering disability have, we shake our heads at what we think of as their bravery at fighting the terrible politics of just trying to get well, later realising that a fly in a web isn't brave for struggling, just desperate. And we drag ourselves through our well-paid jobs, smiling to colleagues reassuringly, and agonise when we are too ill to be there. We can't do much when not at work, but this is the price we pay to stumble on: and between rare relapses, we get through well enough. I thought I'd stay that way.
But July to Easter is a long time. I'm suddenly feeling less like an inhabitant of the last paragraph, where I lived for 11 years, and more like the arcing dying firework. My dearest friend with M.E. assures me valiantly I will get better: she has been through this before: years-long relapses with no end in sight, which do end. And she keeps assuring me over and over, which helps everytime - I need telling, because my mind tells me otherwise. She also recognises so well this thing I call "relapses within relapses" - what seem like horrible dives in health, like an attack of heavy flu, within the major picture of 6-month decline, that I'm going through right now every week or so. But I keep contemplating what happens next if my body continues this arc. And the scary answer is presumably: nothing.
We're all trained to think of every minute as sacred: every stupid film from Hollywood demands we make the most of every second of our lives and "potential". We're exhorted to "live every day as if it were you last" - either Marcus Aurelius or St Patrick, or some such irritating extrovert said that. As if I'm not doing that now, pondering that idea every hour, and as if the thought does anything but render me incapable of all action. There are people chronically ill all over the world, with lives stretching ahead of them, with literally nothing on the horizon - I don't think I could have imagined this a year ago. If I lose work, along with what I've seemingly lost already, my ability to go anywhere: holidays, friends' houses, cinemas or shops; and if along with that I lose my ability to listen to conversation, music or TV through hearing loss, and I don't have the strength or concentration to often pick up a book: what is left? What happens next? The lack of hope for the usual landmarks of an everyday life that others possess, simply because they are impossible for me: meeting a new friend in town, having children, a concert, a holiday, a walk on a beach and a drunken sprawl of an evening with friends. How do they carry on, those with no future hopes or dreams, no consolation of a small future event or even the tiniest plans to meet someone for a coffee? The dread thought that this, what I have here now, is all there might be until I die. And the fear that you can't talk about it, as it just understandably alienates others more, and I mustn't, mustn't keep going on about this to others.
Other than my partner, I don't see anyone in the flesh but a single friend now, who keeps me going by bullying me into accepting her invitations to come round here and make me watch DVDs with her when I'm not too ill. It's a shock to realise I hardly know anyone else here. I've suddenly found myself in a cold northern city with no scaffolding of people around me to prop me up now my masonry's crumbling. Gender presentation fears made me scatter the pieces myself, or not collect the people who could be here now: fear of self-reflection and what others think of me - flesh being my curse as well as saviour, because I so need friends. I'm still doing the same even now. Reaction to my dreadful mail was full of kindness and sympathy mostly, but people have their own lives to shine brightly in. Most of the few miracles that resulted from that mail are fading, and I'm not going to chase them: there's no sadder sight than someone desperately clinging to miraculous hope like a bereaved widow, while all around shake their heads at her decline of rationality.
So, what if I stay ill, as I have more or less constantly from July to April, for the rest of my life? I have to look through a glass darkly here, to not get the same shock next Easter, Christmas, next signpost to loss. Presumably:
I won't see that many more people aside from the occasional doctor, nurse, postman;
I won't make new meaningful, lasting friends, at least who I can actually meet;
I'll lose my job in some painful, drawn-out process, and stay without work;
I'll have to learn how to fight for benefits while deadly ill, like everyone else with this illness always had to;
I'll struggle for motivation and strength to get up, lose my skills I had to work;
I'll fight, or not fight, my own weakening ability to keep myself going mentally, emotionally, and can only presume the wolves of anxiety and depression will bite harder as they sense blood and guilt;
Nothing much more will happen: big life events will be something I won't have.
A list like my last one: my fears. I must make another: what might happen:
My drastic drop in health will start, imperceptibly at first, to lift; one morning I'll wake up and think: this is new;
With it, my anxiety will ease: a drug will work, or my mind will find a straw that holds fast, or the illness will lose grip of the foul chemical tricks it plays on my brain;
It'll be in time to return to work, and my job won't have been radically and terrifying changed by the powers that be;
I'll regain my equilibrium in illness, balancing mind and body, and return to the game of work and rest;
I may be able to mix some play back in with my rest when not at work;
I'll find some determination to make new, physical friends in this emotional dead fish of a city: selfishly, people who might still like me when I'm ill, and might want to watch TV with me even when I'm sick;
I'll be where I was a year ago - again.
There's another theoretical list floating around in the ether too: one which doesn't involve a return to where I was. Books on M.E. currently preach this thought as a sin which will keep you ill: hope not for the past, build a new life - implicitly, with lower expectations. But joy in a raindrop or an opening flower never worked for me when my brain and body were being torn to shreds by illness and fear. I can't just watch time passing by. Because I know, that when time's passed, it doesn't come round again: everything past is irretrievably lost. Books terrify me, films terrify me: people preaching that a minute wasted is lost forever. It's like a slap in the face, everytime I hear such sentiments tripped out at the denouement of some film, scribbled by some spoilt script-writer who's found themselves through what they think of as a tortuous life experience, and urges us all to live our lives to the fullest - if I could get out of bed, I might be able to try. We only live so many heartbeats; do I have to live most of mine out missing people around me, staring into a dark bedroom, living on a diet of no sugar, no dairy, no wheat, wincing at the sound of trash TV rattling a damaged cochlea, or agonising about a future meeting with an old friend or family member who may hate having to pretend they think of me in the gender I tell them I am?
My thought-savers for the day must be: that I still can get online, and that I know some people who still care, want, to talk to me there; that I am good at summoning up an appearance of zest and vitality online at least to stay within some small communities and not be seen as a case for charity (I hope); and that many people with the most appalling CFS/ME are, by their own reports, untouched by anxiety and depression, and by and large seem full of hope, even as their bodies drive them into the ground. So maybe if I can find a way to outrun the wolves, and a way to fight back decades of fear and shame about my true gender and be who I am with help from a few others, I can cope with the illness and loss? As to St Patrick and Hollywood Endings: maybe instead I should rather listen to Boethius, in prison for treason, after a life of renown, riches and happiness, whose Consolation is the impersonal nature of fortune, pictured as a great wheel:
Inconstancy is my very essence; it is the game I never cease to play as I turn my wheel in its ever changing circle, filled with joy as I bring the top to the bottom and the bottom to the top. Yes, rise up on my wheel if you like, but don't count it an injury when by the same token you begin to fall, as the rules of the game will require.
Or maybe I should return to Taoism for another look:
Do you have the patience to wait till your mud settles and the water is clear? Can you remain unmoving till the right action arises by itself?
This entry is one of shameful self-pity: one which may add to the guilt and fear, and drive those who are still near enough to hear me a bit further away. I promise you it's been hotly debated internally whether I should post this, or anything as honest and raw again, because of this danger: this weblog's at high risk of survival right now. My next entry will (will) be academic and dry, or light and breezy. But if I have only so many heartbeats, how else can I spend them, and still be true to the beating of my heart, without telling?
Posted by honey at 7:09 PM | Read or leave a comment (12)
Saturday, March 19 2005
Fears
Why am I so ill now?
Because I am suffering from a somatic disorder where I perpetuate my own beliefs about illness
Because I took 10 years' of antibiotics when I was young
Because I am depressed
Because I have anxiety disorder
Because I internalised my parents fighting, manufacturing illness
Because I have an poorly-understood organic disease called CFS/M.E.
Because I am on too many drugs for anxiety and sleeplessness
Because God is punishing me
Because I am having codeine withdrawal
Because the universe likes to experiment on people
Because the medical diet I am on is making me iller
Because I am perpetuating my own anxiety as illness myth
Because I am suffering from chronic lack of stage four sleep
Because I have subconscious reasons to gain from remaining ill
Because I was bitten by a tick and have unrecognised Lyme disease
Because I grew up transgendered, and my unhappiness results in physical symptoms
Because I am self-pitying
Because I have an undetected illness such as MS
Because I am chronically lonely through lack of social interaction
Because my anxiety about my hearing loss has driven me to self-isolation
Because I am a weak person
Because I have hidden mercury poisoning
Because some people are not built to survive, and current society prolongs their existence artificially
Because I have a brain tumour
Because I lack courage
Because I am a bad person, and am being paid back for it
Because I have chronic candida which is affecting my whole immune system
Because I have no courage to lift myself out of this state
Because I have hidden severe allergies
Because my unhappy childhood set my brain and body on a course of self-hurt
Because I have an as-yet misunderstood immune system dysfunction
Because I am a scientific experiment in a simulated world
Because some things are supposed to be
Because I won't get out of bed, rather than can't
Because my mother passed on a polio-type illness she contracted to me via the womb
Because there are no reasons, and the universe is unkind and unknowing
Because I sleep outside my natural circadian rhythm of daylight and nighttime
Because I deserve it
Because I ask questions like this, while so many are so much iller, more unhappy, more anxious
Posted by honey at 11:26 AM | Read or leave a comment (2)
Monday, March 14 2005
Billy Whizz
Short post. I've been unable to frame an entry here ever since it came home to me how impersonal this weblog's become. I don't talk about how ill I continue to be, or how very anxious I am so much of the time, or terribly unhappy with regards to my gender presentation, and it's dishonest (to myself, I guess?). Instead I've been coming across as some confident gender warrior with a scheme when I am schemeless, or political campaigner in a mask, when really I'm clueless what I can do to arrest the decline of real science in the medicine of M.E. in the UK. I'll try and reframe myself and this weblog when I can see through the current fog of anxiety and self-disbelief and unhappiness, and I get a bit weller again. What must be hardest for those who know me must be the constant ringing of changes. Online, you can often present as cheerful for as long as you can type, and you can avoid dwelling on your disastrous mood or fears if you can type quickly: and when the physical or anxiety crash comes you can scoot off. But things really are very much as they were when I typed out the email that really started this.
In the meantime I'll have to make do with others' words as clothes which fit well enough. I was never so much of a Billy Whizz - never the racing do-it-all - but I think with hindsight my mind's been furiously and secretly playing several tracks internally at the same time since I was very young: learning to present the wrong gender to fit in even from before you learn what "gender" means. Same Whizz, different source. Minnie the Minx pretending to be a Billy Whizz. Or a family of Billy Whizz, Soppy Susan and Fatty Fudge (a not entirely fair way of finding out if my brothers are reading this).
So the following article expresses my current situation well: self-doubt, and the difficulty for those around you to understand the changeability and nature of this illness - thank you Jane. I'll reprint it below under "Continue Reading", but for those who want to read related comments, which stray back into the dreadful and worsening UK politics of "treatment" just now, the original article is here: Is it M.E. or is it me?
Jane Horton 31.01.2005
For the last year I have been unwell, so unwell that I have stopped working and have to spend much of the day horizontal. This has been difficult to come to terms with. When I was a child I read the Beano, and fantasised about being Billy Whizz...
... I really wanted to be Billy: he was the one whose legs were so fast he really could do an incredible number of things at once, and still be home in time for tea. In my ‘normal’ life I was a modified Billy Whizz. I packed in working something like 60 hours per week, including about 20 meetings, a couple of lengthy trips, along with feeding my family, helping run a community group, and keeping my recreational activities going, constantly setting myself ambitious targets. I loved my job, and was really committed to all the things I did outside work too.
It is only now, looking back, from the peace of the sofa and a single book by my side, that I think I was asking for trouble. One of my symptoms is loss of balance, not severe, but enough to necessitate propping myself against walls and furniture quite frequently. A friend recently commented ‘Ah! When your life is in balance, you’ll get your balance back’. Though part of me thinks this is nonsense, another part of me knows this is true; what was balanced about flogging myself the way I did? Now that I am in a different world, away from the fast pace of most of my friends’ working lives, I wonder, if I will I ever be able to tolerate that existence again? Another thought that troubles me is that somehow I may have ‘used up’ all my lifetime’s energy, or at least, most of it, and so what little I have left will have to be eked out very carefully.
It is not all calm and peace as I lie on the sofa reflecting on what has happened. I am devastated. This month my pay gets cut, although thankfully not completely. I am worried about how to pay the mortgage and how on earth I am going to cut back while continuing to pay for the alternative therapies that have become part of my life. I spend a lot of time worrying about the attitude of others towards me and my illness. I know it is mad, but I care what others think. One acquaintance believes all I need is a ‘tonic’ (what’s that?), another thinks I am suffering from clinical depression, (well having this illness is certainly enough to make anyone depressed), while another friend who has the good fortune of never being ill, can’t quite come to terms with the fact that I really am ill.
But I guess it is hard for friends to get it right. I hate it when people ask me how I am; am I expected to give an honest answer or not? On the other hand I’d probably feel indignant if people stopped asking me how I am. What I need is for people to demonstrate that they understand that I am not well, without relentlessly asking me a question to which they must know the answer. Even worse than asking me how I am, people say cheerfully, ‘You look great!’ or ‘You look loads better’. I haven’t worn make up for months and months. I don’t want people to think I am better than I am. If I feel awful, and I want people to notice that I feel awful. In fact I want permission to be bad tempered, grumpy and self-centred. But you don’t get pats on the back for sticking with your feelings. Rather, I feel pushed to demonstrate a positive attitude in the face of my misery, so I try, though frequently fail, and can be hell to live with.
Friends, of course, want me to get better. They just want to wave a healing magic wand over me and are disturbed at seeing their once energetic friend so reduced. It is the lack of clarity about how long the illness will last, and the possible long termness of it that bothers them. ‘You’ll be better by the new year I’m sure!’ (Really? How do you know?). I feel under a lot of pressure about this anyway, without friends adding to the burden. I want to go back to work, I want to have fun, I want to earn money, I want to be fit and vibrant, I want to be able to say to my friends – and mean it – ‘Yes, I am getting better, I really am’. Everything about society is geared towards wellness, getting better, being fit, and performing. This makes me feel like a failure. Everything stacks up to make you feel as though you have personally failed when you are ill, but that’s ridiculous. I didn’t set out to be ill, but rational or not, I feel guilty and ashamed of being ill.
I feel as though my body is inhabited by a joker who enjoys playing games of the nastiest kind, and is having a really good laugh at my expense. The first trick is to make many of the symptoms of the illness invisible …… most can’t be confirmed in blood tests and I sometimes look quite well. The biggest trick of all, the one that is hardest to handle, is not knowing how long the illness will last, not even roughly, and the fact that I go through phases of relative wellness, enough to make me really think I am probably getting well, enough to have others think I am getting well, only to crash back into a helpless stupor. I still think I’m getting better every time I improve. Yes, my memory has been affected by the illness, but I have a total blank about the fact that each time I have improved, a relapse has followed. I maintain unfathomable optimism each time I begin to feel better, and start limbering up to behave like Billy Whizz again.
Most people recognise the label ME (Myalgic Encephalomyelitis) for this illness, though this is the least preferred label by the medical profession, and there are many other related labels including PVFS (Post Viral Fatigue Syndrome), which is generally what it is called when you have had the illness for six months or less, CFS (Chronic Fatigue Syndrome) and CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), when you have the honour of holding the ‘over six months’ badge. I heard Barbara Windsor talking about an illness she had for two years on the radio recently. She had something related to CFS, the Epstein Barr virus, and I felt the words she used described the illness well. She said it as felt as though her body had been shattered, or that it had had a nervous breakdown.
The predominant symptom of this illness is debilitating fatigue. It’s real enough. Climbing stairs can sometimes feel like climbing a mountain, and sometimes my arms ache so much I can’t hold a newspaper up for more than 30 seconds to read. My eyes start closing if I haven’t had at least one lengthy afternoon snooze. Perhaps I shouldn’t be intolerant of friends not understanding the extent of the illness though, when I query it myself. Despite all the evidence I frequently wonder if it’s in my imagination. It’s so unlike me that I’ll challenge myself, ignore my symptoms and just push on, and on, trying to ‘be normal’. The usual outcome is that I have to spend the next day or day after in bed. CFS sufferers normally pay for exertion 24 to 48 hours after the effort. For the first few months of the illness, I made the mistake of setting myself deadlines. In the absence of work, I began treating my illness as a project. ‘I’ll aim to be back at work part time in January, and these are the steps I’ll take to get myself there’. Deadlines, I discover, are about the worst thing I could tease myself with, more like aiming at failure.
The prevalence of the disease is such that most people I have talked to about it have heard of it, and indeed most know someone who has had it or has got it. Statistics on the illness are not very reliable because so often the illness remains undiagnosed. However, it is clear that it affects at least twice the number of women as men, and around one in 100 people are affected by it at some point in their lives. That’s quite a lot of people…. and yet, it feels that there is still a lot of mystery surrounding it. I have heard several specialists acknowledge that most people with the disease seem to have been very busy people or ‘doers’ before becoming ill. I wonder about all those ‘indisposed’ Victorian ladies we read about? Did they have CFS? Certainly it seems possible that Elizabeth Barrett Browning did.
I have been given so much advice since being ill. Look on the web and you are overwhelmed by advice on therapies of all sorts. Who knows where to turn? The worst thing is that people are very insistent about their particular favourite therapy’s benefits and that it should be taken up, whatever the cost. I have chosen to go with acupuncture and cranial-sacral osteopathy. I try to ensure I have a good diet but I’m blowed if I’m going to make myself miserable by going on a special diet on top of every thing else I have to suffer, apart from doing obvious things like cutting out caffeine. I’m sure the therapies I have chosen are benefiting me but God knows how, perhaps just because I find the process of each visit soothing. I trust and like the therapists, and I feel that at least I am doing something constructive, and have a sense of well being when I leave. In contrast to the range of therapies available, what the NHS offers is pitiful. It is clear that the most positive things anyone with this illness can do is to rest, rest and rest some more, and pace any activity very carefully. It is also clear that anyone who accepts that they have the illness early on, and behaves accordingly, has a much better chance of making a full recovery. This of course relies on early diagnosis, and support to accept and learn to live with constraints of rest and careful pacing. Considering the large number of people with this illness that are on benefits, surely it is in the nation’s interests to support those with the illness much more quickly and more fulsomely than is currently the case? At least in my city there is a centre that offers some support for patients with chronic illnesses. The trouble is, the waiting list is so long, if you weren’t chronic when the appointment was booked, you will be by the time your appointment comes up!
There is a silver lining to my state of introspection and debility. I am learning. Coming to terms with the fact that it’ll take a long time to recover is hard, and my process of acceptance is slow. Acknowledging my own new limitations and learning to say no is something that can be done with dignity; I’m working on it. Being lazy, resting, and not lifting a finger all day is actually the bravest thing to do while in this state. Being frail and vulnerable has given me new insights, and I don’t want to lose these when I do return to the world that the healthy inhabit. I spend more time with my daughter, and suddenly I am reading novels again and finding the time to chat to friends about them. I want to return to the healthy world, but I don’t want to lose these things when I do.
Jane Horton
Posted by honey at 7:30 PM | Read or leave a comment (3)
Friday, March 4 2005
Two Turned Tables
Two reversals, one concerning illness, one gender, and ending up with a plate of baked beans.
1. The Liverpool ME/CFS service: an apologyFirst item concerns one of the highly disturbing job adverts for the new UK CFS/ME centres I included excerpts from halfway down this entry.
Many ME/CFS sufferers will know that a recent job description for trainee CFS therapists in Liverpool has caused distress and offence to patients. It contained information stating that therapists might be exposed to verbal aggression from 'some clients with CFS'. As the Clinical Lead ultimately responsible for the job description I apologise unreservedly for this statement (though I was not aware of the wording until after the document had been released). Although incidents of this nature are very rare in any patient group, some might think it fair to mention their possibility to trainees joining a therapy service for the first time. Nevertheless, the explicit reference to verbal aggression in the context of ME/CFS was bound to be seen by the patient community as an assault on their integrity. The suggestion that there might be at any stage a breakdown in trust within the client-therapist relationship was deeply destructive and in no way reflects the true ethos of the ME/CFS service either locally or nationally. If there were any point in raising the issue of inter-personal difficulties, it would be to ensure that trainee therapists have insight into their own limitations and can recognise and ameliorate any signs of overwhelming distress in their clients. The job description has been withdrawn, and in due course will be re-written with advice from patient representatives, emphasising the collaborative nature of the patient-therapist relationship. If this relationship can be further strengthened and developed, then perhaps some good will come from this unhappy episode.
The Liverpool ME/CFS team are passionate about their role in assisting patients recover from this destructive and neglected disease. Our main concern is that patients who might otherwise find our service helpful will now feel reluctant to use it. May we reassure all our clients, present and future, that we will continue to strive for the highest standards of care, and for the best possible relationships between staff and patients.
Dr. Fred Nye. Clinical Champion, Liverpool ME/CFS Clinical Network Co-ordinating Centre
What I see in the apology above is a mealy-mouthed damage limitation exercise by someone trying to distance themselves from a PR mistake, rather than actually saying what was said in the job descriptions was wrong: it was "badly put". The use of the adjective "distress" immediately puts us on a back foot as the meek, over-sensitive and tender ill, and why is he addressing us as patients? If you live in Liverpool, "potential patients" might just work; or "potentially less likely patients". The "althoughs" and back-coverings in the mail are enough to convince me this is just PR. One can imagine what will be said behind closed doors to the interviewees about "the fuss" with the original job description, and how it just confirms the diagnosis of somatic disorder. I might sound a bit angry, bitter or sarcastic, for which I apologise, but really, this wind of change we're catching sight of in the UK is simply terrifying.
I'd concur strongly with the opinions expressed in this mail to CO-CURE:
2. Julie Burchill vs. Germaine GreerCould any "explanation" from Dr Nye be considered acceptable? No, of course not, because it is patently obvious what the mind set of Pauline Powell's clinic is and that what is required are not "apologies" or "explanations" but a radical shift in attitude, and nothing less than a full investigation into the model of care which has been adopted for this service and is in the process of being implemented - but not just in this clinic and in Epsom and St Helier, but throughout the rest of the country.
This one's much more fickle and childish on my part. Germaine Greer and Julie Burchill have separately contributed in various ways to consistently encourage transphobia, try to place us in positions of public ridicule, and generally be plain nasty just to carve out their own careers.
A few examples. Julie first:
... And, yes, I know that they're not the same, but may I say that I feel even less patience with transsexuals. Male to female transsexuals are Michael Jackson to the transvestites Ali G; not content even to dress up temporarily as the Other, they presume that its authenticity can be theirs through a few cosmetic adjustments.
... Transsexualism is, basically, just another, more drastic twist on the male menopause, which in turn is just another excuse for men to do as they please.
Queue up Germaine to join in the kicking:
... I should have said 'You're a man. The Female Eunuch has done less than nothing for you. Piss off.' The transvestite (sic) held me in a rapist's grip.... Knee-jerk etiquette demanded that I humour this gross parody of my sex by accepting him as female, even to the point of allowing him to come to the lavatory with me.
She goes on in her book "The Whole Woman" (chapter: "Pantomime Dames") to mock AIS intersex women as being "failed males", saying that they should go be males instead of living as women. Further, she asks why no one asked 'real' women whether they accept trans-women as 'one of them', handing the keys to gender prison to those she deems fit.
Both miss entirely the irony that they, as feminists, are demanding of others a level of physical appearance in order to conform to their own stereotype of "woman", which is what I'm sure they felt they were fighting against all the time; seem blissfully unaware that 50% of transpeople are male-bodied; and fall into classic essentialism by arguing that there is an "essential" woman's experience, and policing it.
Julie Burchill is sometimes funny in a tabloid way when she's not mocking minorities in danger of imminent physical threat. Greer's contributions a few decades ago to feminism seem to have wound down to snipey pieces on late night BBC2 and stomping out of reality TV shows saying she didn't approve of them anyway (having taken the cheque). All's the more pity because of their contributions in the 70s and 80s, to snappy punky journalism, and feminism in that order. Their fire went out, long-distance sight dimmed as it does with age, and they ended up joining the mob, I guess. One does wonder what their reactions would be to an article claiming some black people "weren't really black", using them for a bit of humour, and then suggesting that "real" black people should be asked permission for those concerned to identify as such.
Anyway the point of this is really just to be snippy. It's nice to see Julie Burchill turning on Germaine Greer: "My feminist hero has become a rancid bore"; in which she accuses Germaine of being "offensive" amongst other things, which is a bit rich as it's her own raison d'être.
If you want a quick dip into some intelligent dissection of Germaine's flopsy philosophy on this, you might want to take a look at a short discussion on the livejournal transacademic group; for some more in-depth discussion, see: Gender Basics & Transgenderism (a third of the way down) by Lynn Conway, and some of the links above.
For a even more ridiculous position look no further than the Guardian yet again, to an article by Julie Bindel, trying rather desperately to fill Other Julie's shoes in more ways than one. One wonders why The Guardian of all papers seem to be ploughing this furrow of transphobia with such determination. For commentary on this piece of nonsense, you could take a look at this discussion on Barbelith, and Charlotte Cooper's article Oh Julie!, which is a more succinct summary than I could manage, drawing much the same conclusions I'd draw about Burchill and Greer's flailing of wings:
But times are changing. I was a fledgling queer in the 80s when women like Bindel were lionised for their "uncompromising" tranny and bi-baiting dogma. Now, in 2004, it must be quite a shock to find out that they are no longer at the top of the lesbian food chain. They're finding it out the hard way.
To top it off, the excellent Ms Cooper ends up trying to resolve the situation by challenging Ms Bindel to:
a public wrestling match. With me. In bikinis. In a gigantic tub of baked beans. You know I'll win because I'm bigger and stronger than you and I can wrestle like a motherfucker.
Yay Charlotte!
Posted by honey at 6:27 PM | Read or leave a comment (6)
Friday, February 25 2005
The undeserving sick
"Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the 'reality' of their condition (and who) are in this sense undeserving of treatment.
"Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service"
- "M.E. What do we know (real illness or all in the mind?)" - lecture given in October 1999 by Dr Michael Sharpe hosted by the University of Strathclyde, my emphasis
Problems or Solutions? - Eileen Marshall & Margaret Williams, 23rd February 2005
"... We submit that this amounts to denial of the human right of fundamental freedoms under the Human Rights Act, since the Act requires that all public authorities must pay proper attention to a person's rights when they are making decisions that affect a person. Public authorities include Government Ministers, civil servants, local authorities and health authorities. The Act requires that those in authority do not ride roughshod over people's rights and must be careful to cause the least possible harm to individuals. To deliberately withhold the provision of appropriate medical care to those with one specific neurological disorder does result in actual harm and we submit that the time is now ripe for the decision that is known to have been taken by those in positions of authority (namely, that people with ME are "the undeserving sick of our society") to be robustly challenged in the Courts by means of judicial review.
"It can no longer be denied that there is an enormous amount of available published evidence that ME/ICD-CFS is not a primary psychiatric disorder but a multi-system physical disorder of extraordinarily incapacitating dimensions that affects virtually every bodily system, most notably the neurological system, the immune system, the endocrine system, the musculo-skeletal system, the cardiovascular system, the respiratory system and the gastrointestinal system. It has distinct cardinal features that are not difficult to differentiate from psychosocial disorders, but Wessely School adherents are renowned for their intransigent dismissal of any evidence that does not accord with their own construct and so they advise that no-one should even look for such evidence, even to the point of advising Government that "no investigations should be performed to confirm the diagnosis, which is a clinical one" (Joint Royal Colleges' Report on CFS. 1996: CR54: Summary for Commissioners, page 45) because they believe that carrying out investigations would reinforce patients' aberrant belief that they are physically sick.
..."We submit that urgent action now must be taken and that since all efforts to enlist the support of MPs have proved ineffective, the only route left is via the Courts by Judicial Review (JR). The procedure for JR is that firstly, a written application is made to the Administrative Court at the High Court in London; this will be considered by a Judge who will either allow it to proceed or refuse permission for it to proceed. If the Judge refuses permission, there is an automatic right to a Hearing in person before a Judge, who may grant permission for a full Hearing. Should permission still be refused (and the Prime Minister's apparent influence over appointment of certain members of the judiciary has been raised in the media), there is the option of lodging an appeal to the Court of Appeal. Should this be unsuccessful, a fresh cause of action may be submitted to the European Court of Human Rights in Strasbourg."
Posted by honey at 1:51 PM | Read or leave a comment (4)
Friday, February 18 2005
Blogblock
I'm getting blogblock, in spite of all the kind comments sent in (thank you so much! I never knew anyone would read this weblog). I've been trying to work out why, and I think it's partly because I promised I'd write something, so therefore, of course, can't.
. o O (never promise to self to write again)
It's also that I've been iller again and anxiety very high; and this weblog's new, but even the new girl in school only gets the first week or so off before the hair-tugging starts, and there's only so long I can bleat on about my anxiety and the various weird tricks my body pulls out from round each corner. So this post will be the equivalent of a plumber popping round to clear my blogblockage: something to fix a mundane problem (a blocked drain, a plugged-up sink), not something to look forward to, to savour or to revisit mentally. It's for me: and expect no cheery whistling from this plumber. He's a mean plumber, and he wants a cup of tea before he starts work. He'll probably overcharge you for a ballcock. I'm going to get rid of him as soon as the U-bend's fixed.
So you don't need to read this. The only conceivable reason may be if you're one of my nice new friends with CFS/ME and want to compare notes. The rest of you - move along now, nothing to see. Oh, you could glance at the blockquotes at the bottom of the entry.
The main problem from which I think everything stems just now is sleep. Symptoms: taking much-frowned-upon-in-UK sleeping pill every night (sharp intake of breath from every GP in the UK, nod of approval from my private M.E. specialist). Zolpidem 5mg. Plus anxiety popper, clonazepam 0.5mg. I then float on the surface of 10,000 dreams for 5-6 hours and my eyes suddenly open dead awake but exhausted, heart-racing, and I'm immediately aware I've been in some near-awake state for what seems like hours, floating just near consciousness and pushing myself back under: the closest analogy I can think of is that I'm trying to go under water (and I hate water), and I have a million floats attached to me - my near-consciousness pushes me back under ("sleep! sleep!") and I dream a million dreams every ten minutes I'm asleep before the floats push me back again. I dread to add "like a bloated corpse", so I won't. Then after 5-6 hours I'm awake, that's it. I sometimes try another clonazepam then, doesn't seem to help. I'm in total confusion about whether they are supposed to aid delta/stage-four sleep, unlike the other benzos which kill it. I thought I read they did. Certainly it feels like I'm getting dreamy-dreamy non-delta sleep all night long.
Tried:
drugs as above;
expensive and ugly bodyclock which is supposed to give your body a simulated dusk and sunrise - I'm either awake 3 hours before it, or it doesn't wake me;
black-out curtains (called "light-out curtains", presumably because, like in a sitcom of old, they don't want us to think about the war) - they let in the light;
bedtime "hygiene" - not sitting in bed when I can help it, the milky drink thing... when I was allowed dairy;
plants - all the valerian type things that might knock a hamster out if he took a few hundred;
nytol - the anti-histamine that didn't work but they found made people sleepy and now market as a gentle sleep-inducer - pfft! bring on the morphine;
thinking - count sheep, relax each part of body, pretend you're writing on the back of your head (this last one from an actor from Coronation Street on a daytime chatshow - my research goes far and wide).
Not tried:
socks - Vicky's grandma's suggestion to go to bed in a pair of wet socks.
So I'm left wondering where my sleep went, spending the days in a doze, being intensely boring or anxious online with people who are being kind and keeping me going, and repeating the same things repeatedly, all the time, repeatedly to the same people, all the time, repeatedly; and also repeating all the same things all the time. My memory seems really impaired.
My sleep's always been poor, but this is a seachange. Where's the sleep gone? (a) diet, (b) clonazepam, (c) anxiety, (d) tinnitus/hyperacusis retraining device? Blasting white noise into one side of my brain for five hours a day (it's as far as I got) can't be easy on an organ already damaged by the weirdest imbalances and immune problems. So my doctor says; so my audiologist agrees, or at least that I stop it for 3 weeks and discuss. Caught between evils here, as I'm very anxious my hearing is worse.
My private doctor's told me I'll never get well if I don't get 9 hours' deep sleep a night. This is quite hard to swallow, as 6 hours fitful seems like a far-off target. She's telling me to take more drugs to do it, and I'm very scared of tolerance and dependence, and the fact that my family doctor will have even more reason to write me off as a lost cause.
I'm also told that I have to change from being an owl to being a lark, which is even harder than my current diet of no dairy, no wheat, corn or any cereal, and no sugar except one piece of fruit a day. I usually go to sleep at 3-4 a.m., constantly feel bad about it, and try to figure out why I do it. I think it's because my anxiety lifts at midnight, and because I fear sleep and the horrid dreams and exhaustion from half-waking all night long. My doctor wants me to be asleep by 9:30pm. Now this may not seem like so disastrous to those larks reading this (presumably at 7am) but to me it's near impossible. Myself and The Doc settled on midnight as a first target after a brief tussle on the phone. Isn't your larkiness or owlishness supposed to be gene-based? I'm left more confused.
There seems to be fairly widespread thinking that the hypothalamus function is damaged in the majority of CFS/ME patients (those who don't think we're making it up), and I'll pretend I know how this is linked to sleep. This article may help those who know more about medicine to understand (and explain it to me). You therefore have permission to accuse me of being "hormonal" if you like when I'm anxious or snappy, with some accuracy. Because of this, apparently it's likely that my melatonin levels (the hormone that helps you regulate when it's night and when day) are crazy, and she's sending me some to top them up. It's something that can't be prescribed on the NHS in the UK but is readily available elsewhere in the world. Dr Myhill's opinion is that this is due to some ridiculous political nonsense in the UK rather than genuine health concerns; but I'm a bit concerned by reports like this one from Berkeley (via Circadiana):
"It really amazes me that melatonin is available in any pharmacy," Bentley said. "It is a powerful hormone, and yet people don't realize that it's as 'powerful' as any steroid."
If anyone knows a lot about melatonin, pineal glands, sleep hormones, or just wants to drown me in third-eye mysticism, please do.
I'll leave you with some quotes from job adverts recently gone out for positions at the UK's new "Chronic Fatigue Centres", as a result of the knock-out win by the Wesseley school to ensure that people with CFS/ME in the UK will be stigmatised for years to come:
Employer: Royal Liverpool & Broadgreen University Hospitals NHS Trust
Job title: Trainee Clinical Fatigue Therapist1. Psychological treatment involves delivering a highly complex understanding of the psychological, physiological and social factors of CFS to severely disabled, fatigued patients and relatives, in order to change perpetuating illness behaviour and motivate patients to perform a self-managed activity programme, regulate disturbed sleep patterns and modify predisposing personality style.
2. Clients with CFS, because of their chronically fatigued state, experience barriers to understanding. For some clients there can be significant barriers to accepting the changes needed in behaviour, which have to be overcome in therapy in order to facilitate a successful outcome.
5. As some clients with CFS may be resistant to working in a psychological framework there may be exposure to verbal aggression.
Employer: Epsom and St Helier NHS Trust
Job title: Highly Specialist Clinical Psychologist in Chronic Fatigue Syndrome ManagementPatients referred to the service often present with complex medical and psychological problems, are highly distressed and may have difficulty accepting and be hostile to the rationale for adopting a cognitive-behavioural approach to the management of their fatigue.
In addition, patients using this service may have problems of an intimate nature eg sexual difficulties, history of trauma or abuse, which are not suitable for treatment in a group setting.
I've made the comment above flippant, but I'm really terrified by these job descriptions - it means the UK's moved on from the theory that CFS/ME is largely/wholly somatic to applying it in genuine way. Next stop: those who don't cooperate will lose health service goodwill and benefits? It honestly feels like I'm about to be put in a cart and taken to Siberia for reprogramming. Apparently they are going to "modify" my "personality style" so I start to realise that I'm perpetuating a mythic illness - and I'm about to hit someone - and it's all because of some sexual abuse or trauma in my past? Sure, I'd like some coaching into adjusting to my disabilities; I will "have difficulty accepting" and might "be hostile to the rationale" only if you don't also talk to me about the plentiful research into organic body chemistry differences found in countless patients with this disease and what you might like to try for my body too. It's a catch-22 - even in typing this, I'm becoming a "resistant" patient - another kind of refusenik. I hope readers with CFS/ME in other countries whose doctors are looking for and finding distinct biological markers for this disease are shocked by this - we may need your help very soon. My partner and I discussed emigration last night, and added up how many points we could get to get into Canada - really.
I've financed my own cognitive therapy for years outside the NHS to help with my ability to cope with living in a world with illness, and a body that doesn't fit current perceptions (umm, wait, I need to pay for that..?). I've done my own "graded exercise" in the past - walked hard for 30 minutes every day at lunchtime when I was working. But apparently I need a brain transplant?
This entry's not going any further. I was going to go on about how anxious I am, but there seems little point as it'll bore you, and make me more anxious, as quoting the above has done. Maybe writing this will unplug something just to say it, and if anyone got this far, to beg patience from those kind, sweet, well people who spend their time online buzzing me with messages, little funnies, encouragements, pictures and mp3s. And also to everyone who has been sweet enough to send unsolicited mails of kindness, other than those people who keep asking me if I want a bigger penis, which shows just how badly targetted spam can be. I'm working on mailing you back. And I'm really sorry I'm so changeable and hard work, and please keep nagging me. Aside from the obvious misnamings, I really should have been christened "Handful" at the font.
Posted by honey at 8:51 PM | Read or leave a comment (8)
Sunday, February 6 2005
Babette's Beast
Sorry for the break in transmission. My gastric symptoms really took a hold, and after a hyperactive mailing list day on Friday (sorry, robots) came a very big and I suppose, very predictable mood swing yesterday: so low and tearful and afraid I can't remember when I've been like this for a long time. Just trying to tread tread tread water today, so writing this will either be therapeutic or another bad anxiety trigger. I may quit and run. Oh and my pee went green. Which apparently can be caused by asparagus, which I don't eat because I don't like any vegetables beginning with the letter A: there's four I can think of in British English, count them out for me. So I guess it must be some kind of vitamin/mineral overdose from my silly scoop mistake, which by now three lovely people have apologetically laughed at, quite understandably. I hope last week was all about stupidity and not illness.
I'm currently very scared and feel my leg's being chewed off by Wolf Dread, although, actually it's a cousin of his, called Depression, and he's a bad, bad wolf. It's hard to describe just how he eats away at your bones. Someone in a #depression channel yesterday, bless him, suggested I "take up some hobbies" and take my mind off it. So hard to describe how, if you haven't felt the deathly depths that depression can really get to when you can't even think or move an arm without intense pain, guilt and fear, that stamp-collecting really wouldn't help. To be bitten repeatedly by the wolves of anxiety, and then when they're having a break and chewing at a detached limb, to have their cousin wolves of depression attack just doesn't seem fair. But the jungle's not fair, as taught by countless David Attenborough programmes about big monkeys eating little monkeys, and sea lions nibbling at penguins; TV that should have a health warning on it, because it's so upsetting. Human beings can only bear so much reality, and some of us can only take a tiny scoopful at a time.
And it's so chilling how intricate the details and subtle flavours of these mood changes are. Anxiety isn't like depression, it evokes a completely different sensation to the palate, and you can taste the change immediately. And each episode of each condition has a differently horrifying flavour, like the exquisitely laid out dishes in Babette's Feast; like you've never tasted this particular dish before. So you can't prepare for it, or defend with previously stashed letters to self, diary entries or mental reassurances, because they aren't relevant to the particular orientation of fears, loss of self-knowledge and disintegration that surmount you.
I get upset when people say depression brings creativity. Bipolar depression may bring on rushes of activity: I can't speak for this. But it's a 20th/21st century romance, or consolation, that depressives are at their most creative when beaten down by depression: a coffee-table thought. It's a sickness, and while others may enjoy the fruits of dipping into that world at leisure in an art gallery before chocolate fudge cake in the nearby cafe and a poster for the wall, if the artist was truly depressed, then they should feel nothing but sympathy. Maybe it's an expression of the empathy that depression can bring - if you've seen it in yourself, you know how unrelievable it is in others - but it's not an LSD trip. I'm sure someone who's down for a bit gets to consider things in their life that they may not have, and this may lead to fruitful creativity: but depression itself just suffocates and kills. The little I truly understand of it is that, just when you think you've reached the lowest level you could be at, a hundred more levels heave into view below, and you realise you could drop one thousand more. I'm quite sure I've only experienced hints of the kind of terrible loss of self and pain some feel.
I'm not going to go into the details of the fears, as from experience it only turns them up to 11; they're illusionary triggers that try to divert you from the underlying chemistry of disease. I'll just say one from today: ear fear again. Loud noise in my left ear this morning. Feeling of more deafness - panic. At least three people now have written to me about their ear problems, and some much more frightening than mine: and they have all dealt with them, by the sounds of it, with more dignity and courage than me. I must learn.
Three days ago I received my tinnitus retraining device (a misnomer - the audiologist wants to deal with my hyperacusis first). I have to build up to 8 hours a day. It's a slightly scary thing to put in your ear. Recently on BBC2 there's been a program called Tribe where a man called Bruce Parry spends time living with, and being initiated into indigenous tribal cultures all over the world (although, being quite posh, he's yet to try being initiated as a Geordie). In one episode, he's sitting in a clearing with his new Amazonian friends in his leaf underpants, chewing grubs, and knows that they sometimes use the grubs to clear earwax (eww..). So they pop one in and start laughing at him as he squirms (apparently the best joke in the Amazonian rainforest is to put the wrong kind of grub in someone's ear). Anyway, this tinnitus/hyperacusis device has a little antenna, and is just like that: putting a wiggly grub in your ear.
And now it's later, what I've written above seems like a weak attempt to talk myself out of some terrible fear with casual language, and my heart is like a rollercoaster ride.
Car coat, she has a quilted jacket with a hood if it rains
Big pockets for the pharmaceuticals she takes to fix her brain
Something is very bad inside and I have to stop typing now. Today I've had a lovely friend playing nice silly games with me online which have cheered up and made me feel more like me, and in another place, the insane breakup of a community of CFS/ME people which I'd just come to feel at home and safe in - and a new dear friend forced to leave - so much for the empathy of illness. 
Too much stuff. The supposed detached empirical approach of my last article has become a small mountain to climb, and I expect I won't be writing Naming II today. I'm trusting that anyone reading this who might meet me online understands that there are levels of presentation you can sustain publically for a little while which belie what lies beneath: but only for a time. But you have to maintain those levels if you possibly can to keep yourself in touch: people can only stand so much misery and illness, just like I can only stand so many David Attenborough programs.
I'm just going to have to post this now, and then hide in my tent and wait out the storm.
Posted by honey at 11:07 PM | Read or leave a comment (12)
Tuesday, February 1 2005
Naming I: CFS/ME
There are some uncanny parallels between how ME/CFS (the disease) and being transgendered are treated in current society. I'm trying to slowly find a way of describing these, because they seem to be the hooks on which a lot of self-doubt and anxiety hang for both classes of people. I think it's a zeitgeist issue: one currently so embedded in western thinking, especially the latter, that it's hard to see. I'm going to try to look at these, starting with the issue of Naming, which leads to the issue of psychologising what is, on the one hand a serious organic illnesses, and on the other, a benign variation in human makeup like having a nice big nose, but in this case highly stigmatised to the point of torture and murder. And the consequences of this psychologising are that already dispirited, anxious, low self-esteemed people are the one hand not taken seriously in a symptomatic way by doctors, and on the other hand medicalised beyond belief. And I think a lot of this originates in naming problems. Yes that's right, I'm going to have a moan. This will probably be a three-part post. What I'm doing is called pacing: so first, CFS/M.E.
The condition commonly now known as M.E. in the UK has had a huge number of names in its time, all of which tend to confuse in some way or other. Common names currently: Myalgia Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Post-Viral Fatigue Syndrome (PVFS). You'll also see the "encephalomyelitis" transmute into "encephalopathy" sometimes, either because it's easier to spell, or for more sinister reasons. If you like words, you can push further back and find a reference in 1750 by Sir Richard Manningham to a syndrome referred to as febricula which rings some bells; Florence Nightingale and Charles Darwin had something similar. From the 1860s, the name neurasthenia was given to something quite similar, and in the 20th century, various isolated "outbreaks" have given rise to various different names: Icelandic disease in Iceland, Royal Free Disease in Britain, and Tapanui flu in New Zealand. Decent enough histories here and here.
You can guess from the proliferation of terms above that its causative elements are hot potatoes. I'll be calling it M.E. or CFS/ME, because that's how it's known in the UK usually, the name recommended in the Chief Medical Officer's report of 2002, and recognised by the World Health Organisation. Notice also chronic fatigue is listed separately there, and is a description of a state people can get into when severely depressed, or subjust to a temporary viral condition etc. When a doctor consistently refers to your condition as "chronic fatigue" (as one of mine does), this may show an underlying belief that it's other than an organic disease (or may just be a misguided nervous attempt at empathy: "I know what you're going through" shorthand).
I can't face going through the intricate details of the debate about the nature of CFS/M.E. in the UK at the moment, and you can't face reading about it: if you don't have it, it may look like splitting hairs, and if you do, you'll know it all already. So I'll just give a summary, and leave some links up, vital as I think this is.
If you suggest that your M.E. is an organic condition and why the heck isn't your GP looking for symptomatic organic components, or why isn't s/he up on the latest US research which is finding abundant physical markers of disease, you're often told (with that doctor's smile) not to be so literal about the mind/body split: don't be a dualist, and instead recognise that every physical disease can have psychological components: the brain is an organ too (don't I know it! mine certainly gets hit in all sorts of ways by this disease: memory, mood, etc.). This is a way of wiggling out of the principle of primary cause. If someone has a bad back, they may get down, because they can't work, see any friends, or get any sleep; if someone has cancer, it'll have a shocking effect on their life, fears for the future and state of mind. And yet vigourous active research is conducted into the causes of cancer, and although patients are (of course, as they should be) encouraged to adopt a positive attitude, they're also given drugs, and symptomatic relief, and doctors look towards a cure. Of course mental attitude affects the body's ability to recover: brain and body are the same thing. But if you have cancer, you need more help than positive thinking or "taking a different attitude".
Doctors used to be accused of not taking a "holistic" approach to medicine, and I think by adopting attitudes such as the above, they feel they're meeting that gap and being much more 21st century. It's a cheap way to enlightenment, and doesn't work for patients with real organic illnesses, for whom they have no treatment or knowledge about at hand.
Meanwhile research continues apace in other countries to find organic causes of the disease; doctors for those lucky enough to have health insurance in the US routinely give treatments to patients that a GP will laugh at here (it's happened to me) as if you're asking to try sitting under a pyramid for a few months.
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A lot of the blame for this in the UK can be laid at the feet of Professor Simon Wessely, a psychiatrist who's vigourously and successfully campaigned to grey these boundaries between mental attitude and organic illness, specifically for M.E. and latterly Gulf War Syndrome. He and his gang have managed to convince the UK government that most of the money allocated to M.E. patient care should go into CBT (cognitive behavioural therapy - to help the patient rethink whether they're ill) and graded exercise (to make the patient do more each day regardless of relapse - which has been documented time and time again to make many M.E. sufferers relapses so badly that their illness is set back years, or permanently).
Here's Wessely in his own words.
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The reason he can show this from research, is exactly because of the lack of consistent classification of the condition, which goes back to naming. If you call it M.E., you fall back on the World Health Organisation definition of an organic disease. If you call it CFS, or Chronic Fatigue Syndrome, you start to imply that it's mainly about being tired, which depressed people get too. If you drop it down another gear to "chronic fatigue", you fall into a whole different W.H.O. classification, which includes a lot of depressed people, for whom CBT and graded exercise will really help. So if you can find a set of criteria which includes a broad spectrum of these "chronically fatigued" people, your results will appear to work on average, and your research grants renewed. Just make sure you don't use a narrower, more accurately targetted set of criteria, like the recent Canadian Definition for ME/CFS, which might actually mean you'd be dealing with the core of people with an organic immunological disease.
One of the fighters for sanity in all this has been the Countess of Mar. Last year she banged on in the UK parliament to try and nail this issue down, bless her. Here's a link in Hansard (the UK record of parliametary proceedings) to an exchange between herself various Lords. If nothing else, international visitors will find the formality amusingly quaint. Imagine 90 year olds nodding off all over the place on wooden benches.
I'll quote some here:
Despite the fact that a senior civil servant in the Department of Health has confirmed that it works to the ICD 10.G93.3 definition of ME/chronic fatigue syndrome, Ministers are providing false information to MPs by advising that it is the WHO itself that has reclassified ME as a mental disorder.
... How has that situation arisen? A very small group of UK psychiatrists, known colloquially as the "Wessely school", led by Professor Simon Wessely of Kings College, claims to specialise in ME—a discrete term denoting a discrete disorder, but a term that it uses interchangeably with chronic fatigue or tiredness
... Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder, for which he claims to have developed a more intensive form of the psychiatric intervention known as cognitive behaviour therapy (CBT). That consists of using intensive, mind-altering techniques to convince patients that they do not suffer from a physical illness. It also includes forced regimes of graded exercise to be supervised by a Wessely school-trained psychotherapist aimed at getting patients back to fitness.
Wessely school psychiatrists are about to receive £11.1 million, including £2.6 million from the Medical Research Council, in an attempt to strengthen theweak evidence that his regime actually works for those with ME. Among his 53, largely undeclared, interests it should be noted that he is a member of the supervisory board of a company, PRISMA, that is supplying such rehabilitation programmes as CBT to the NHS for those with ME, even though such regimes have been widely shown, at their best, to be of limited and short-lasting benefit and, more importantly, at their worst, to be actively harmful to those with the disorder.
... Wessely states that patients belong to,
"a cult recruited from the environmental subculture",
and that those with ME,
"feel no guilt about their condition: sufferers from mysterious illnesses that lie outside conventional medical practice no longer consider themselves to be oppressed by spirits and demons but by mystery gases, toxins and viruses".
Wessely has made numerous statements about the non-existence of the disorder that can only be described as savagely cruel to the ME community. For example, he refers to ME as a "myth". He believes that it,
"should not be dignified by [its] own formal case definition and body of research".
He asserts that symptoms found in ME,
"have no anatomical or physiological basis",
and that "muscle weakness is simulated". He advises that, to the majority of professionals, ME symptoms,
"are indeed all in the mind".
I can provide corroborative evidence of all those statements.
Neither the fact that they may be wrong nor the well documented errors of psychiatrists in the past who authoritatively misdiagnosed Parkinson's disease, multiple sclerosis, epilepsy, diabetes and thyrotoxicosis as mental disorders before medical science revealed their true aetiology, seem to have occurred to the Wessely school.
I'm sorry to quote at such length. She goes on to discuss various clear biological markers of disease, and then a fist fight breaks out in The House. Lord Addington concludes his own feelings on the matter:
One thing is clear: the noble Countess's historical basis for complaint is solid. There is a tremendous tradition, when we do not know the medical or physical causes of something, of bringing in the quacks, to put it bluntly. That has happened on numerous occasions.
I shall give the House an example to add to the one that the noble Countess gave. Dyslexia is the one that I know most about. I can remember being told in the mid-1970s that my inability to read and write at the same rate as others was due to the fact that I came from a single-parent family. There are others examples, so I suggest that we take a sceptical look at things. With regard to the noble Countess's speech, I suspect that there are many libel lawyers who, on hearing our debate, will react in the same way as someone on a diet looking at a cake shop window. It is a lovely feast that they cannot get at.
We must face facts. There have undoubtedly been occasions on which mental health problems have been suggested for things that turned out to be physical conditions. That has occurred. The fact that ME has a physical component—an initial physical component, at least—has been agreed by, I think, everybody here.
The Department of Health responded to the Countess confirming that "the UK accepts lCD-10" (the W.H.O. definition as M.E. as an organic disease) but then goes on to say that the current rule is "discretionary" to each GP. It then goes on to emphasise that the UK doesn't want blood donations from people like me with M.E. Just in case we pass on our somatic illusions via blood cells, presumably:
The underlying logic is that this condition is still of undefined aetiology, possibly viral, and therefore NBS cannot accept the risk of possible transmission by blood.
It should be remembered that donation must not jeopardise the health of the donor. It is not known what effect taking 470ml of blood from someone with ME could have on them.
Presumably Professor Wessely wouldn't mind 470ml of my blood though? And maybe to his children if he's procreated any little Wesselies? I imagine his face would bear an expression similar to the agriculture minister, John Gummer's, during the BSE/CJD beef crisis in the UK, feeding beefburgers to his daughter: "try and look jolly, but darling, don't swallow it".
The offer's there, Simon.
Posted by honey at 4:18 PM | Read or leave a comment (5)
Monday, January 31 2005
Out of the swing of the sea
So, I did come down sick again: maybe some explanation for this swing down which is continuing. I'll spare gruesome details, but it's gastric and has been continuing for 3 days, so I'm losing yet more weight. And it may have been my own stupid fault. My new private Doctor who specialises in CFS/ME, Dr Myhill sent me a confection of minerals in powder form to dissolve in water (tastes like what I imagine washing up water tastes like: I haven't tried), and, not finding the specified "scoop", I thought "coffee scoops" and doled myself out a soup spoon full on Thursday, to immediate gastric reaction. I'm told my body may be in shock mode now. We found the scoop today at the bottom of the powder - it's like a lilliputian's teaspoon.
The result (if that's the explanation) is feeling very sick, tired and anxious and stuck in bed. But I've had repeated gastric episodes of a yucky variety in the last six months: the first coinciding with my loss of hearing and cochlea damage. I hope it's understandable that I'm anxious right now about more "idiopathic" damage and deafness, and doesn't signal a descent into being yet more pathetic.
So this has to be a snatch of an entry, and I'll use others to provide content. For those who don't know the (agonising, ridiculous, soul-destroying) state of CFS/ME healthcare in the UK, which I'll still have to put off for another time, please please just quickly look at my own private doctor's take on the "organic illness vs. you've convinced yourself you're ill" debate. I like a straight-talking doctor:
CFS Psychological or Physical? This seemed such a stupid question that I never bothered to consider it.
Also her article on "Dealing with Doctors":
Most doctors do not distinguish, indeed do not want to distinguish, between fatigue, frustration, sadness and depression. If you burst into tears with frustration at the total lack of understanding, that merely reinforces the universal diagnosis of depression.
Because of her attitude, I'm sticking with her methods for at least 6-9 months. She's a breath of fresh air, after more than a decade of UK doctors looking like a deer in headlights when you mention M.E. She's very nutrition-based, but she's also ordered a lot of tests (vitamin D deficiency for mood problems, melatonin levels, parasitology, and something scary in case my hearing loss was a tiny stroke, and a third thyroid test) which the NHS have told me they won't pay for - so I have to. I'll be taking vitamin B12 shots weekly soon, which is first-aid commonplace treatment in other countries for this condition, and unspeakably unorthodox hippy nonsense to UK general practioners. Allow me a brief outburst.
All of you are worthless physicians. If you would only keep silent, that would be your wisdom! - Job 13
Joni Mitchell says it best in The Sire of Sorrow (Job's Sad Song).
Anyway enough. I'm sitting in bed, trying to expose my ear to noise, as instructed, and trying not to worry. Two lovely friends held back the borders of my anxiety yesterday by just talking to me on the internet. Thank you thank you.
I'll have to stop, as rest for CFS/ME patients is supposed to not involve laptops, TVs or even music but, just for me, another song of longing based on verse from a long time ago, from a band who have saved me time and time again. Just a deep deep longing to be out of the "swing of the sea" for a little, to get some rest, physically and emotionally.
I have desired to go,
oh I have asked to go
where a few lilies blow,
to fields where flies
no sharp and sided hail
and springs not fail,
and springs not fail.And I have asked to be,
oh I have asked to be
out of the swing of the sea,
where the green swell
is in the heavens dumb,
and no storms come,
and no storms come.- The Innocence Mission - No Storms Come - from Gerard Manley Hopkins - Heaven Haven
And finally, Hope's lesson for Giant Despair.
And let us consider, again, that all the law is not in the hand of Giant Despair. Others, so far as I can understand, have been taken by him, as well as we; and yet have escaped out of his hand.
Who knows, but the God that made the world may cause that Giant Despair may die? or that, at some time or other, he may forget to lock us in? or that he may, in a short time, have another of his fits before us, and may lose the use of his limbs? and if ever that should come to pass again, for my part, I am resolved to pluck up the heart of a man, and to try my utmost to get from under his hand. I was a fool that I did not try to do it before; but, however, my brother, let us be patient, and endure a while. The time may come that may give us a happy release; but let us not be our own murderers. With these words Hopeful at present did moderate the mind of his brother; so they continued together (in the dark) that day, in their sad and doleful condition.
Hopeful comforts Christian - from The Pilgrim's Progress
Posted by honey at 2:55 PM | Read or leave a comment (4)
Wednesday, January 26 2005
i'm fast asleep / my headphones / they saved my life
Sorry for no entries for days! Just about every two minutes or so I've contemplated a new entry, and contemplated how many of my massive readership I'm losing because it looks like another shipwrecked weblog. It's not, I promise. Just that on reflection my last feverish entry (you have to get it out, waargh) may be a bit heavy for most, and unintelligible to a few. And a bit of a shock to some who know me. Sorry.
This one will be about My Ears. I wanted really to say that if, as a few of you have written back to me, you have Ear Problems too, that private ENT doctors, whether you pay them or not, smell, and audiologists are wonderful, so go and find one. If you're in the UK, you might be able to find one locally on the NHS. They don't go through the same intense 5th year course in "Snootiness Skills" as doctors do, especially the kind who decide they'd like state-condoned backhanders from anxious people - I suppose you would expect that to be a natural selective factor for the kind who will go private. The NHS ENT doctors are, I expect, perfectly likable people with cats and unpretentious hobbies (I'm imagining fishing) and slightly shabby wallpaper that needs redoing but that somehow they won't get around to fixing for years; the problem is, you don't get to see them for 18 months even if you go deaf. For my international friends, this is called the "NHS waiting list". The ones you therefore pay, if you can afford it, to see earlier than 2006 are ruthless, take your money and snap at you, and conduct a hearing test with transparent headphones, while rustling papers on their desk. They then tell you your hearing will not return, tell you not to think about it much, as they get your coat.
I've so lost faith in the health system here: I sometimes pine for America's system, ruthless and nasty to those not in work as it sometimes seems. Selfishly, if I had insurance through a job or family would things be better there, specifically for M.E.? Would my doctor have correctly diagnosed my cochlea damage within the crucial 48 hours and got me to hyperbaric oxygen or steroids to fix my hearing loss? On all accounts the US is taking M.E. patients and the issue of the organic illness more seriously, and putting some real money into research instead of psychologising everything within sight. I'm sure I'll write more later about the psychologising of organic illness in Europe in another rant similar to the last entry, along with psychologists doing the same to benign conditions like someone like me being a girl (which I don't think is fatal). But not today: today it's An Ode to Audiologists.
I don't have much content here really, except that "my" audiologist (and it's a sign of my renewed faith that I think of her as "mine") didn't give one itchy look as I talked to her for hours, took every question and silly comment I made seriously, my half-baked internet-derived notions with interest, never patronised, and never once gave me the impression she had any other appointments all day. Ironically, I had to pay to get the first appointment with her, so I could get it in days rather than weeks/months/years, but after that you just blend organically back into the NHS, and everything else is free. A tiny bit of me is beginning to revise my recent view that it was all an impossible pipe-dream in 1948.
So my audiologist laughed at the costly but pitiful child's handwriting pencil-drawn hearing tests from my private ENT appointment with Mr Grumpy, and ordered some more - within a week. She took special account of my anxiety disorder and my lack of mobility due to M.E., and booked a time that was just right. The tests were long and carefully explained all the way through, and, suspicious as I am of my own mind's ability to fiddle any test to make my ear seem better, I was shown that they were accurate by post-testing demonstration. I really could hear the tones I "caught a whisper of and hoped I could really hear", and my hearing really was gone where I thought it was. She was very patient and so sweet with me. And the results were so encouraging.
The results: I have a dip in my left ear starting at 2000Hz, dipping down (I think?) 40dB at 4000Hz-6000Hz and then for some weird reason spiking right back up at 8000Hz, which is the end of the graph. There's a bit of low frequency hearing loss in my right ear, but nothing to get excited about. The hand-scrawled Rhoobarb-and-Custard profile of my hearing from my private ENT consultant (who's probably now spending my fee on new golf clubs) said my hearing dived at 1000Hz and never returned, and was "profound". So, either someone is affecting a miracle the ENT doc assured me "couldn't happen", or he just didn't bother properly, and wanted to get home for his egg and chips. I think the latter.
So I do have some serious hearing loss, to go along with my M.E./anxiety/depression salad, but it's not quite as profound as it looked. It feels bad, but my audiologist put to me an unpatronising argument that a lot of it is to do with brain-stem pattern recognition (note the difference between this and psychologising the problem: "you just aren't thinking right, loser"). I'm still terrified whatever virus did it to me will do it to me again in the other ear, but more hearing tests might chide me to not be so scared in due course, and I'm meanwhile having some parasitology and vascular tests to rule out anything nasty, like a minor stroke - enough to keep my worry atoms functioning. The existing loss is where humans make, I think they're called fricative sounds or sibbilants, and I know someone who could tell me if she's reading this! Lip sounds, B's and F's and S's. And I do have quite bad tinnitus, which is varying at the moment from a loud squeal/clang some days (like today) to more mild whooshes other days that I hardly notice for hours on end. And my most serious problem currently, the hyperacusis (sensitivity - ouch - to high frequency sounds and an inability to get the TV to a volume where I can both hear it and not hurt), the audiologist says is likely to be treatable. I believe her. I like her. How people are as people matters more than what they think they know, or how long they were trained to know it.
So this week sometime I'm getting a little plug to put in my ear, which will whoosh white noise at me. I'm supposed to wear it 8 hours a day, probably for a long time. It's supposed to be pleasant, not unpleasant, and a relief from the spiky noises. And it's free, part of Tinnitus Retraining Therapy, and I think they cost people $2000 in the US. Maybe there's some reason to still remain here. If you come across me sometime, if I get better and out of this living room, and see a little plastic thing in my ear, don't perform the aural Heimlich Manoeuvre on me, please.
So, getting to my point, which is like getting to the end of one of Escher's staircases, losing my hearing has been a night-terror to me for months. I always said all that was important in life was "friends and music", and I've lost many of the former through this rotten disease, and my inability to cope with the gap between the girl inside and the boy on the outside, the worry of relating to others and what they're thinking about me. Sending that mail a week ago is my way of working on that, and I'm currently back into miracle-recovery mode over my attitude there due to (particularly) a few responses from people who have oceans inside them. As to the latter, it's a terrifying thing to think I might lose music - truly not-worth-living feeling for the first few weeks of anxiety, after the deathly predictions of the ENT doctor. This won't make any sense to someone who listens to the odd "Classical Relaxation" CD on the way home from work I know, just as I also won't understand your fascination for clay-pigeon shooting - but that's ok. Just assume for a second it's like a death sentence to me. I usually can't concentrate on conversation when some music I love is on - I can't think straight, I get the most wonderful dizziness and I'm lost in it. I swear I could get lost in a city listening to Ennio Morricone's Metti Una Sera A Cena, which deserves its own entry here.
So the point is: I've joined audioscrobbler.com, wired it into how I listen to music at home, and spent ages writing the simplest tiny php script (of which I know nothing - I'm a web-ignorant benny) to pull in live information to show what I'm currently listening to on the side panel of this weblog right now. You can also see my profiles at audioscrobbler and last.fm, should you be as bored as a melon. The "What's Playing Now" thing apparently fades quickly, so might only show if I've been listening to music today: it depends on how many friends you have, and I don't have many. Apart from you, dear readers, who if you audioscrobble I would implore to befriend me.
This is the thing: that doing this was scary for me. It probably won't seem scary to you, or the list of what I'm listening to interesting to read. It's more like my way of casting a net. Three people have written to me in the last week saying they have hearing problems too, and I think at least one has said (bless you!) that your approach is to listen to as much, and do as much ear-y things you can before (or in case) your hearing goes forever. Mine's always been the opposite - to give up and not scare yourself by pushing fate. So this is trying to reverse the trend - my headphones as an act of tiny tiny faith from someone who isn't good at it.
Posted by honey at 5:59 PM | Read or leave a comment (1)
Wednesday, January 5 2005
What Ho.
The point of philosophy is to start with something so simple as not to seem worth stating, and to end with something so paradoxical that no one will believe it. Bertrand Russell
So difficult to start this. Feel the need to introduce everything I need to say for the new reader, then the lack of said reader's desire to bother reading it, and finally the feeling that it's "not to seem worth stating". Throat infection for the last five days on top of all has thrown me into a very bad spin - been confined to bedroom for days, extreme anxiety and physical reaction. Like Nelson Mandela but without anyone calling for my release. Call for international sanctions against my illness presently looking unlikely. Airports being named after me highly improbable.
With hindsight, my hyperactive entries on Christmas Day were one of those little happier mountain peaks, only recognised later from the interminable dry valleys of ME/CFS. So for now I can just put up a couple of links that I am very anxious sound like extracts from Laura Ingalls' diary, but are shorthand to try and explain some of the effects of chronic disease. You don't have to read these.
http://www.foggyfriends.org/understandingme.htm
http://www.butyoudontlooksick.com/spoons.htm
http://www.hyperacusis.net/whatis.htm
Having said that, I'd quite like you to read them, if I'm honest.
Being transgendered and having anxiety disorder and clinical depression are not yet a feature of this weblog because I'm... too scared to talk about them yet. Someone might actually be reading this.
Incidentally, I've never actually read more than a few paragraphs of Bertrand Russell in one sitting. Bertram Wooster, yes.
Posted by honey at 1:13 AM | Read or leave a comment (1)