In the meantime, after 12,000 junk comments (I so neglect you, weblog), I've closed comments to all but authenticated readers. So if anyone is looking in, please do comment, it may be enough to help me worry less and write more. It's just that you'll have to authenticate at Typekey first. It's quick and you can use it on other blogs. I'd love to hear from you.

P.S. Weblog, I removed that last entry from a year ago about politics and war. I'm still angry, it's still awful, but it's not something I want on the front page. This weblog is about gender and illness. So it will stay. xxx

In other words you'll still be able to leave comments here but still not be able to post nude photos of your neighbours. I just wanted to say that I'm sorry it's nearly been a year, and Fumblings, you've been on my mind for most of it. I'm sorry to those I haven't mailed or replied to, but I've had to severely limit myself due to continued illness and battle fatigue, and... oh, it's a pretty poor excuse. Somehow it's seemed too important to ever be able to do it justice. I feel particularly ashamed at not giving a squeak to those who even took the time to give Fumblings a nudge like an old TV set to see if it was still working. However a specific comment to my last exhausting entry has just dragged me from my cave and I really have to get back to this. Even if it's just to be a bit more like a normal weblog and talks about cats and porridge for a bit. Although I've never been very good at tracing the trajectory of my daily life here and always seem to end up writing essays. Crazy non sequiturs will likely continue.

My comment to the above ended up as always more like a post in itself and I have to rest, but I hope to see anyone again soon who's still watching and occasionally banging the set to see if it works. Meet you here soon, k?

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!

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.

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:

1. It's been a rollercoaster physically, and at times I've been quite ill.
2. Mentally: same rollercoaster.
3. The details of side-effects, drug variations, diet etc. would bore the pants off a stamp-collector.
4. 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.

The only surviving photo of Boadicea

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!

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.

Liz's funeral was yesterday in London, which it was impossible for me to attend - I can barely get up for 30 minutes' activity at the moment without a relapse for several days. It would have of course been traumatic to go, but I found myself sitting at home all day, watching the clock, wondering what was happening now, who was there, what was being said - a feeling of permanently being on edge along with the sadness of it all - which continued into the night. And the horror of watching the news on that very same day, as the police shot someone on the underground, surrounded houses, sent in sniffer dogs - the very same events continuing as people gathered for Liz. Somehow, not being there has left a big hole, an uncertainty that I don't know how to fill, an ellipsis without a following sentence.

I found myself going back to the music that brought us together, music that I haven't listened to for years, that became some sort of phobia for me. For 8 years I was part of, and responsible for a large community of people that seemed very special - that formed so many relationships and friendships, marriages too, that I couldn't count them. It's where I and so many others met Liz. I'm still there, but it's quieter these days, and most of the original people have moved on for understandable reasons. But the music it was based around seemed to have some unearthly life-changing property in the early days, and an indefinable ability to sniff out the nicest, most unusual people and put them in touch. A little secret gentle spider's web around the world that's still there, but lives on in other places now, often in pubs, and happy households for those brought together.

For me, it all got too much a few years ago: being seen as so central to the community but actually doing nothing cleverer or more profound that some organising and gentle cajoling made it too important to me, and too scary because of who I was not. That the rising tension of my illness gathering pace coupled with the disparity between my public face and internal gender conflict (I was too chicken to just come out and say it to more than a few) came to a kind of quiet crisis in about 2001, and I largely disappeared visibly, while continuing to work the levers in the background to let it continue. Along with this, the association of the music itself and this hurt became very strong and I stopped listening. I'm not even sure if Liz still listened to them much these days, but yesterday for some reason, sitting in my bed, I felt a strong need to revisit and listen - maybe just to feel closer to her and those in London, standing, singing, listening, crying. It wasn't fun, but I suppose maybe it gave me something to do, a conduit for expression, from my own bedroom.

In the evening of course, I exploded into anxiety land, and fell to pieces shamefully seemingly over my own worries, and as usual, unable to identify a single cause: an ant-hill of individual causes become a single organism of toppling guilt and fear. I'm scared and so sorry for Liz; I'm scared for myself about the anti-parasite drugs I'm about to embark on; I'm scared I'll never be able to go to London, or a shop again. I think I just wanted to be there.

The loss of others is supposed to make you reflect on what you have. But all I could think, and couldn't say was "if it had to be Liz, why couldn't it have been me instead?". Stupid, self-indulgent guilt? I just can't explain it. It just seems to me she had such wonderful enthusiam, health, passion, and was doing so much, seeing so many, making so many happy. I have the resolve to do little or none of these and if (if) my life is going to stay more like this than that, then it would make more sense for it to have been me: to keep Liz in the world, where she can make cakes, punch arms and delight a thousand people. I can maybe touch 3 or 4 weekly, and a dozen at tops in a year, and I have little to offer them back now but fear and worry, which isn't a patch on getting drunk with them and giggling over a cocktail.

It's not fair of me to end this like this: a few people were incredibly kind about me being represented at Liz's passing, and one in particular. We don't know each other so well, yet he took the time to encourage me via email to say something via proxy, be represented, represent the community where we all met in some way. I wouldn't have had the composure to do this myself, and I'm told something I emailed was read out. I was very anxious it was an imposition - so many others will be hurting more than me - but he encouraged me to do so. He even suggested I chose a flower and bought it for me. I know little else of what happened yesterday - I hope I get to find out who said what some time, as it feels tense as a coiled spring not knowing, somehow, even though it won't change anything. But I'm so grateful of the care and understanding shown by another for what I could and couldn't do yesterday.

I'll leave this with the another quote Liz left us in an email, the one I chose to be read out yesterday. It's from George Santayana, American philospher from the early part of the last century. His most famouse quote is "Those who cannot remember the past, are condemned to repeat it", which seems relevant to the idiocy our own states are pursuing currently that connects us up to the tragedies of today, but this isn't that. This is a lesson about individual fear, and hope.

It's an incredibly hard lesson, and one I know the least about: learning to love and not fear change, even if it seems for the worst at the time. It comes very close to the lessons about Tao I'm trying again to understand: that the only way out is to let time have its course, be alert, but rest. I can't say I'm anywhere near it, but here it is.

It is better to be interested in the changing seasons than to be hopelessly in love with Spring.
- George Santayana

It's been very hard not saying anything on this weblog - it seems either such a trivial medium, or that I'm trying to make her loss, or her partner's, or her family's my own, and while it was unconfirmed, seemed inappropriate to say here. This weblog has always been about me trying to reconnect pieces of myself up again, and make sense of my life with illness, and Liz mustn't, can't be used for anything but to remain herself. I feel so sorry for those who knew her, knew her much more than I did. And she'd snigger at me eulogising her as some kind of saint, and probably throw a cake at me. It's hard to say more than that she was a very special kind of person - you know the kind you meet for the first time: you're feeling a bit nervous, and she jumps in and surrounds you in a little invisible bubble of comfort and safety and gentle poking? She was very intelligent, very witty, without ever a trace of anything but leaping engagement and kindness. I'm sure everyone has faults, but I can't think of any. Maybe she once burned ants with a magnifying glass when she was 10 or something. In January 2000 she called me a "little minx" - some people are very knowing.

It feels bitingly cruel of me to use the past tense about her in the preceding paragraph, like I'm physically causing someone pain. In another forum I maintained stubbornly I wouldn't do this at least until it was confirmed. It feels like forcing something, like trying to accelerate backwards in a car. I still feel like that about my mum: she died before the internet, and she's still a present-tense person to me. I actually have to correct myself to using the past as the words slip out. Maybe this is my christian heritage - a relic of the time I believed there was someone who loved me infinitely, and who would look after me forever. Or maybe it's because she is around: my mum, my only achille's heel to agnosticism in my atheist's cell. Maybe Liz will always be present tense to me too - maybe she should be.

So, no eulogies, no ranting about whose fault I think this is, aside from the wicked and stupid souls who blew themselves to pieces to ruin so many others' lives: that's for another day. And not to forget how many people die every day in Iraq, and how every human's soul is equal in weight: just a recognition that I knew this soul, and that makes a difference to mine. Liz, stay in the present tense: you're so wildly missed and when the web pages dreading then mourning such an early loss are old, you'll still be wildly missed. I hope, hope that those for whom your loss cuts the most deeply will find the most love and reason to get through this. And that you're safe.

Liz usually used to end her mails with a quote: I'll end with one of hers from 2002:

So then, farewell.
Your arse
Was far too special for them
Anyway.
Or so your mother said.

I had a comment on an old entry in this weblog today, which really encouraged me to write back. I'm still quite ill, but hope my anonymous commenter doesn't mind me copying her/his text here, and my reply. I wrote enough that it stopped being a reply, and became an essay, and I don't expend that much energy without physical cost just now. So, it's not profound, but here it is.

My commenter:

Hello, I just stumbled onto your page while looking up the dangers of manganese in showers!??? Anyway its very interesting and eloquent. May start watching it.

It's certainly very surprising that feminists can be so needlessly offensive to an oppressed group. However I can't say I find the basic argument that maleness and femaleness should be defined by biology, rather than personal identity, to be objectionable. To use your own comparison of race, do you think being black is about identity rather than biology/race? Is a person black if she or he believes herself or himself to be black? I don't want to offend you but I do think sex/gender is defined by biology, in exactly the same way that I think being black is about race.

I just think that in an ideal world then people would not make a thousand and one assumptions because of a person's gender. If being male or female was no more fundamental to a person's identity than having a wide face or a thin face, or having a good sense of balance or a poor sense of balance, or having blood type A+ or A-. I'd love it if we had a gender-neutral pronoun to replace his and her. I think that ideally, gender would be just a physical variation which isn't crucial for defining one's sense of self.

- superfreak

Superfreak, firstly it's a nice surprise to get a thoughtful comment on an old article - thanks! You'll have gathered if you read newer articles that my physical health is in a mess just now so I've kind of ground to a halt here - but will try and pick up the trail soon. Your comment encourages me to do so, and I may even repost it as a new entry to try and restart my weblog - I hope you don't mind. I don't know if you'll be back to read this, but anyway...

No, your comments don't offend me in any way. Any thoughtful comments, including those I disagreed with, couldn't ever be offensive. How could they be? It's a pleasure to get a response. But in fact I couldn't agree with you more: I too believe sex and gender are determined by biology, indeed as you say, being black in terms of skin colour is about race (see catch below). The key here, is that they are determined at different stages in the biological process, as recent research is showing. Briefly and probably inaccurately (I'm not a biologist!): sex (if I can use that to mean body-parts, vaguely, in fact confusingly what biologists call "gender") is determined by the foetus's response to floods of hormones early on - all foetuses starting with a female shape - with the ones that react to androgen (because of XY chromosomes) turning male, forming testes, which continues the masculinising process, etc. Google for AIS to see what happens when a male foetus doesn't react to androgen. Gender, in the way society/sociologists/the transgendered community use it, is about who you are - in your brain/mind. Again, there's mounting evidence that this part (whether you feel like a boy or a girl) is formed by the effect of chemicals in the womb at a later (separate) stage of foetal development. The key here is that I'm agreeing fully with you: I think we'll find gender identity is highly defined in the womb, but the gap between your slash in "sex/gender" is important. It makes it conceivable that people like me exist (and lots of us do) who can have one physical sex and the other internal gender identity - which really means a female brain in a male body, or vice versa.

Sorry this reply is so long. I hope you or someone reads it and finds it explanatory of at least my position, and many others, and I hope some of the rest of my weblog explains this a little too, rambling as lots of it is. As to your last paragraph, I agree strongly too. Gender role is a very separate thing from identity, an (understandable) invention of society, and it's terrible when people are forced to act in a role they may be uncomfortable with, because of how their bodies look. Transgendered people feel this more keenly than anyone: it really hurts, and has for all of my life, and in our gender-inflexible society can kill. I'd also reflect this back to your comments on being black: like being "inuit", or "gay", or countless other things, these indicate strong biologically-determined identities: but can also quite separately refer to what I would see as analogies to gender role: they define who I feel I identify with, where my "home" is. And very important social roles can exist without biological pre-determining factors too of course: being "rastafarian", or "pentecostal".

You say in your last sentence:

I think that ideally, gender would be just a physical variation which isn't crucial for defining one's sense of self.

I'm not actual sure what my response is to this: I've often thought I'd like the world to consist of gender and sex-neutral blobs, when at my lowest and most pessimistic with regard to my own position. But I also often think sex and gender are wonderful things: giving us a sense of me-ness, of gentle polarity and definition which I'd rather have than blobness. And people don't invent things on a whim: horrified as I am by modern (largely western) society's christian and post-christian resistance to gender variation, unlike many other society's acceptance of people like me as being natural variants rather than being wrong, bad or mad, gender roles seem to have evolved in every society we know of. There must be a reason for these roles being so deeply embedded, as well as the general need for sex differentiation for evolutionary diversity, and, being so pervasive it's probably good for us in general, although of course good things can be used for bad so so often. This is however the least strongly emphasised paragraph I'm writing here, as I'm not sure what I think: certainly, the ubiquitous evolution of some social trait in all societies is no evidence of its moral worth.

It occurs to me in retrospect that resistance to gender role prison is what this weblog was supposed to be about from the start: saying I'm sick to death of acting out a male gender role when my gender identity is so clearly female. But I'm aware many others non-transgendered (cisgendered) people fight a similar fight with societal expectations. That's why it's so disappointing when those others who reacted against the same policing, referred to in the original article, deny us the same freedoms.

Finally on gender-neutral pronouns! There have been a zillion attempts at this, but as a (very!) amateur linguist I'd say it's very hard to force new terms into language - its progress is too organic. Memes sometimes catch, for very interesting reasons, but you can't just invent a new one and hope that it catches on (see my whimsical attempts at doing this with terms like jeebo/beejo!). For some interesting history of attempts at creating gender-neutral pronouns, see an FAQ here. Lots of people do persist in trying to use terms like "hir", but for me, the good old "they" works well enough. Prescriptive linguists of 50 years ago thought it improper to use plural terms about singular objects ("a person walked into my shop today: they wanted some flowers"), but linguists of today generally tend to be more descriptive, and say it's perfectly acceptable and a good example of the flexibility of language. Jane Austen used it..!

Images taken from the film "Ma Vie En Rose"/"My Life In Pink" by Alain Berliner, which is probably a better way of understanding being like me than the above article. It'll probably be in your local DVD outlet for rental.

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 you

all 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.

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 won't be surprised if most people reading this even in the UK haven't heard of the Gender Recognition Act, which came into force on 4th April. It might come as a shock, against the background of current regressive steps on civil liberties seemingly happening all over the place, that somewhere a pen slipped in Parliament, and they've brought in a relatively enlightened piece of legislation; or depending on your viewpoint, that they've opened the floodgates to gay marriage, open group sex in Trafalgar Square, the public flogging of bishops and the complete disintegration of the social fabric of Britain as we know it.

I've tried to plod through the legislation out of interest, but seemingly continuous exhaustion prevents me from understanding all the wherebys and heretofores. For those with more keenly interconnected neurons, it's here, although you may want to postpone reading them for now:

The Act
Explanatory Notes

As in all great British institutions, the Explanatory Notes of course require explanatory notes, so a website has been set up to explain them. There are other third party sites explaining it too, like GRA-info.

The Act has been plodding on quietly through the Lords and the Commons since November 2003 (see that link for the archaic way these things happen), provoked by an event in July 2002 when the European Court of Human Rights found that the UK had acted illegally in two cases concerning discrimination against post-operative transsexual people, which implied they should have the right to change their "sex" on their birth certificates, with all the consequences this would bring (positive and negative) in terms of retirement ages, who they can marry, etc. etc.

What I wanted to talk about, if I've understood the Act right, is how silly it is in many ways. And also to (shhh) keep quiet about it, because passing this kind of silliness is a big step-forward anyway. I don't want anyone to think I'm against it please! It's a great step forward. The paradox though is that, having passed it, it'll probably be revised drastically as a stepping stone to more sensible thinking on gender and biological sex, and maybe even same-sex unions. The latter of course is just what the extreme conservative elements fear, the left say "nonsense" to, and Blair denies they are even thinking about; but when you start to think hard about sex vs. gender, you can see the conservatives may well be right. Good-o!

First, a brief summary of the Act, as I understand it. I may be horribly wrong in aspects of it, as I don't have anything approaching a legal brain, so please correct me if you do.

The basics: anyone can gain a "gender recognition certificate" which gives them the full national rights of their "acquired gender" if a panel agrees that the applicant:

* has, or has had, gender dysphoria,
* has lived in the acquired gender throughout the preceding two years, and
* intends to continue to live in the acquired gender until death.

"Dysphoria" is just an ugly way to make being transgendered sound weird and medical. On recognition, the applicant is entitled to a new birth certificate reflecting the acquired gender and can marry someone of the opposite gender to his or her acquired gender. Previously, birth certificates were immutable, and although you could change some legal documents, this was skin deep as you couldn't marry someone of the opposite gender to you. You were forced into gay marriages by the state.

There are all sorts of qualifications, such as a limit on applications in the first 6 months (to keep the admin down), what happens to someone who's already married to someone of their own acquired gender, sub-sub-paragraphs about state pensions etc.

To me the Act is packed with interesting anomalies, which reveal the underlying confusions over gender and biological sex in our culture: it's of great academic interest to me to see what happens now this step's been taken and the realisation dawns. I'll try and explain some of the clangers I think I see, but please bear in mind I'm not criticising the Act's existence. I'm all for it: I just think it's the tip of a cultural iceberg.

First point of great interest to note: although the panel assessing applications requires "either a medical practitioner or a chartered psychologist", it is not a requirement that you've had any surgery for a successful application. It will of course help, but you just have to prove you've been living in your "acquired gender" for a specific period of time. This is a surprise to me, where most other countries would require your genitals to be a particular shape to allow you to be legally treated as that gender. I'm not sure whether this is just a kind of oversight, or consciously enlightened and a recognition of the difference between gender and biological sex.

Secondly, "acquired gender"? I'd like to see someone "acquire" a gender - it's not like you can pop into Woolies and buy one - again I'd argue this is a confusion between gender identity and role, but we'll allow an implied "role" here. If we do though, are we back to the pre-feminist days of requiring people to act a certain way in order to be considered a woman (or a man)? Wearing heels or chopping wood? Hmm. Maybe we should legislate that every woman found doing a course in car mechanics is transferred to male legal status, pension rights, etc.?

Thirdly, I considered all this academic to me at first, as the Act would be for those who have undergone surgery, and I'm sure it still is largely, but it does make me think fancifully "could I apply one day?". Almost for fun. I certainly satisfy criterion (1) above, and how do they define "living in my acquired gender"? Almost everyone who is close to me, and most people who just know me know my gender self-identification: that I am, and ask to be treated as a she. Most of the other she's I know wear the same clothes as me: usually jeans. Does the Act require that, say, once a week you slip into a little black dress and go clubbing? I'm referred to as female by almost everyone I know, albeit that my life is largely online or conducted by email right now. I am called something that is largely recognised as a female name: and what if I was called "Robin" or "Alex" from birth, or some other non-gender specific name? Would that constitute "proof" or would I have to change it to another female-sounding name?. My mother's middle name was one generally recognised as a boy's name - could she have just adopted it into more general use and successfully applied? This page on GRA-info explains the "evidence" required a bit better than the official documents, indicating that I'd need to prove a "transition date", but implies I'd really just have to show that I'm paying phone bills with a female-sounding name, and the word "transition" implies it would have to be different from my birth name. Which is all a bit odd if you have a non-specifically gendered name at birth. In fact, non-transpeople (in the UK) aren't required to have names that fit a gender map, but transpeople are? Am I being picky?

I certainly intend to live the rest of my life this way, satisfying criterion (3). So all I'd need to do is ring the phone company, and tell the few remaining people in my life who haven't visited this weblog yet? Or would a government official need to follow me round Boots with a clipboard to check I'm wearing lipstick?

Fourthly, the right to marry someone who is not your own gender is a very sensible and natural right, if you like marriage, or at least the right to be given the same social status in a partnership as any other woman or man. But doesn't this make you feel that the whole heterosexual marriage ethos is creaking at the edges? Not because transwomen are any less women than others, but, what was going on before the Act? Transwomen could only marry other women. And now, if they apply, they can marry men and are forbidden to marry women! And what if two transwomen want to marry? Why, all they have to do is only one of them apply under the Act! What will they do to protect same-sex marriage from mockery, legislate that all transpeople have to apply under the Act, whether they want to or not so that the State doesn't condone a gay marriage by mistake. There are probably tens of thousands of gay marriages carrying on now in Britain undetected as we speak between transpeople and others - we must stop this evil!

I'm sorry to sound flippant, but for me it does make a mockery of the whole state and church-sanctified same-sex marriage malarkey. Maybe it's just me. But it doesn't make any sense, if the state is suddenly going to start accepting transsexual people in the gender they say they are, if they still allow them to marry people of the same gender should they deceitfully not apply under the Act and declare their true gender. Of course, what I'm really saying is not that there's an underground transgendered menace in the country (even though there is, evil laugh etc.) but that it's ridiculous to sanction unions based on gender, or biological sex, or a misunderstood mess of the two things. Or indeed in other areas. Do they really want male-gendered minds in female prisons? Or is it only genitals that matter? And what about in loos? I could go on, but... won't. I'll let someone else do it for me.

A quick diversion to look how caringly parts of the church are taking this. I feel bad about raising this, as I dearly love some churchgoers and don't for a second think they feel the following way. But take a look at the self-appointed Christian Institute site which concentrates its analysis of how wicked the Act is based on spreading fears that (a) church leaders may be fined if they disclose transgendered people's identity and (b) (seriously) that old ladies don't want to meet those horrid transgendered freaks in the little girls' room. They call this a fight for "religious liberties". With a special gift for missing about 20 points at the same time, they go to great lengths to say how kind christians should be to intersex people, just so that they can diss the transgendered, by pointing out they are not the same (duh) and say how immoral it is to "deform and damage a healthy body", which would presumably stretch to people who remove non-malignant moles or get their hair cut. They say point-blank that people who have ops have a "disordered or unhealthy mind". See the "Helpful Notes" page, first document. In the second document, they show the church in a vice, drag up the usual dross about "some people regret sex changes", spread a little fear about the church being fined and meeting "them" in the loo, and refer to transwomen as "he" throughout. In the final document on that page, they display staggering and desperate hate-speech by referring to a transwoman and her partner with the caption "These Men Want To Marry" and say it would be a offence against "public decency" to allow a transwoman into a female-designated church activity. In a fabulous set of faux-pas, they seem to entirely miss the point that the Act does not require surgery, and thus people like me presumably aren't committing some mortal sin unless we clip our toenails. It also omits to mention transmen, presumably because the scare tactic isn't as high.

It comes as no surprise having looked at the registered address of this Institute that the feverishly anti-gay pro-creationist anti-pluralist Rev David Holloway from Jesmond, Newcastle-Upon-Tyne pops up in these leaflets, a man who signed his name on a letter by a Dean Jensen claiming he "did not call Rowan Williams a prostitute; I did not refer to him by name or by title", which sounds a bit to me like claiming you didn't call your sister a fat cow because you didn't use her actual name. Instead of contemplating his mean pinched little face any longer, I'll return to my main theme: but hope, and would be delighted to hear, that other parts of the church have a more enlightened and less doomed-to-failure approach. The Bill's been passed and the Act's in place! Update your webpages and get over it!

So finally, a quick look at birth certificates themselves. A large part of the struggle for this Act in the last decade or two has centred around the wish to change birth certificates, specifically the box ticked when a child is born for "sex". Prior to 1969 you said "boy" or "girl", after then "female" or "male". Does this mean "biological sex at birth" (it is a birth certificate after all). If so, does it make sense to change it later? Or is the Act recognising that it really is a gender box? Or is it just a bad patch up to give transpeople the rights they deserve according to their gender which depend upon birth certificate, but shouldn't?

If it's acknowledged somewhere that it means "biological sex at birth", then I guess I don't mind mine staying "M". If it means gender, then I do, because they guessed wrong. If I had surgery, I still can't see in theory that I'd need to change it from my birth biological sex (although of course if certain rights depended on it, I'd want to). And if I were intersex, I'd want it to have a M/F, or a star in it. Preferably gold for "special".

A "gender" and a "sex" box would make it nice and clear, but then you'd have to fill the gender box in later, which is pretty silly for a birth certificate. A continuous "life" certificate would make a lot more sense, which gave people access to certain rights, if we have to differentiate rights based on gender identity or body differences at all.

Or of course, there could just be a jeebo box.

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?