I’m getting blogblock, in spite of all the kind comments sent in (thank you so much! I never knew anyone would read this weblog). I’ve been trying to work out why, and I think it’s partly because I promised I’d write something, so therefore, of course, can’t.
. o O (never promise to self to write again)
It’s also that I’ve been iller again and anxiety very high; and this weblog’s new, but even the new girl in school only gets the first week or so off before the hair-tugging starts, and there’s only so long I can bleat on about my anxiety and the various weird tricks my body pulls out from round each corner. So this post will be the equivalent of a plumber popping round to clear my blogblockage: something to fix a mundane problem (a blocked drain, a plugged-up sink), not something to look forward to, to savour or to revisit mentally. It’s for me: and expect no cheery whistling from this plumber. He’s a mean plumber, and he wants a cup of tea before he starts work. He’ll probably overcharge you for a ballcock. I’m going to get rid of him as soon as the U-bend’s fixed.
So you don’t need to read this. The only conceivable reason may be if you’re one of my nice new friends with CFS/ME and want to compare notes. The rest of you – move along now, nothing to see. Oh, you could glance at the blockquotes at the bottom of the entry.
The main problem from which I think everything stems just now is sleep. Symptoms: taking much-frowned-upon-in-UK sleeping pill every night (sharp intake of breath from every GP in the UK, nod of approval from my private M.E. specialist). Zolpidem 5mg. Plus anxiety popper, clonazepam 0.5mg. I then float on the surface of 10,000 dreams for 5-6 hours and my eyes suddenly open dead awake but exhausted, heart-racing, and I’m immediately aware I’ve been in some near-awake state for what seems like hours, floating just near consciousness and pushing myself back under: the closest analogy I can think of is that I’m trying to go under water (and I hate water), and I have a million floats attached to me – my near-consciousness pushes me back under (“sleep! sleep!”) and I dream a million dreams every ten minutes I’m asleep before the floats push me back again. I dread to add “like a bloated corpse”, so I won’t. Then after 5-6 hours I’m awake, that’s it. I sometimes try another clonazepam then, doesn’t seem to help. I’m in total confusion about whether they are supposed to aid delta/stage-four sleep, unlike the other benzos which kill it. I thought I read they did. Certainly it feels like I’m getting dreamy-dreamy non-delta sleep all night long.
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).
socks – Vicky’s grandma’s suggestion to go to bed in a pair of wet socks.
So I’m left wondering where my sleep went, spending the days in a doze, being intensely boring or anxious online with people who are being kind and keeping me going, and repeating the same things repeatedly, all the time, repeatedly to the same people, all the time, repeatedly; and also repeating all the same things all the time. My memory seems really impaired.
My sleep’s always been poor, but this is a seachange. Where’s the sleep gone? (a) diet, (b) clonazepam, (c) anxiety, (d) tinnitus/hyperacusis retraining device? Blasting white noise into one side of my brain for five hours a day (it’s as far as I got) can’t be easy on an organ already damaged by the weirdest imbalances and immune problems. So my doctor says; so my audiologist agrees, or at least that I stop it for 3 weeks and discuss. Caught between evils here, as I’m very anxious my hearing is worse.
My private doctor’s told me I’ll never get well if I don’t get 9 hours’ deep sleep a night. This is quite hard to swallow, as 6 hours fitful seems like a far-off target. She’s telling me to take more drugs to do it, and I’m very scared of tolerance and dependence, and the fact that my family doctor will have even more reason to write me off as a lost cause.
I’m also told that I have to change from being an owl to being a lark, which is even harder than my current diet of no dairy, no wheat, corn or any cereal, and no sugar except one piece of fruit a day. I usually go to sleep at 3-4 a.m., constantly feel bad about it, and try to figure out why I do it. I think it’s because my anxiety lifts at midnight, and because I fear sleep and the horrid dreams and exhaustion from half-waking all night long. My doctor wants me to be asleep by 9:30pm. Now this may not seem like so disastrous to those larks reading this (presumably at 7am) but to me it’s near impossible. Myself and The Doc settled on midnight as a first target after a brief tussle on the phone. Isn’t your larkiness or owlishness supposed to be gene-based? I’m left more confused.
There seems to be fairly widespread thinking that the hypothalamus function is damaged in the majority of CFS/ME patients (those who don’t think we’re making it up), and I’ll pretend I know how this is linked to sleep. This article may help those who know more about medicine to understand (and explain it to me). You therefore have permission to accuse me of being “hormonal” if you like when I’m anxious or snappy, with some accuracy. Because of this, apparently it’s likely that my melatonin levels (the hormone that helps you regulate when it’s night and when day) are crazy, and she’s sending me some to top them up. It’s something that can’t be prescribed on the NHS in the UK but is readily available elsewhere in the world. Dr Myhill’s opinion is that this is due to some ridiculous political nonsense in the UK rather than genuine health concerns; but I’m a bit concerned by reports like this one from Berkeley (via Circadiana):
“It really amazes me that melatonin is available in any pharmacy,” Bentley said. “It is a powerful hormone, and yet people don’t realize that it’s as ‘powerful’ as any steroid.”
If anyone knows a lot about melatonin, pineal glands, sleep hormones, or just wants to drown me in third-eye mysticism, please do.
I’ll leave you with some quotes from job adverts recently gone out for positions at the UK’s new “Chronic Fatigue Centres”, as a result of the knock-out win by the Wesseley school to ensure that people with CFS/ME in the UK will be stigmatised for years to come:
Employer: Royal Liverpool & Broadgreen University Hospitals NHS Trust
Job title: Trainee Clinical Fatigue 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.
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.