Category Archives: illness

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 apology


First 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 The job description has been withdrawn, and in due course will be re-written with advice from patient representatives, emphasising the collaborative nature of the patient-therapist relationship.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

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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:

Could 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.

2. Julie Burchill vs. Germaine Greer


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.

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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’ĂȘtre.

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!

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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

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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.”

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.

Plumber

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).

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Not tried:
socksVicky’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.

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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 Therapist

1. 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 Management

Patients 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.

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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.

Babette’s Beast

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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.
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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. fingers.jpg 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.

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.

Continue reading

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.
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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.
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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

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.
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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.
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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.
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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.

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.