Wednesday, October 19 2005
Down along my restless palms
Apology of an entry: to say that I can't, just now. I'm in the midst of yet another snow-storm of new symptoms which are now taking away my remaining chances of keeping in touch with people: clusters of new, odd migraine-like but more severe neurological symptoms; some blurred vision in one eye; and sudden onset tingles/pain in fingers and hands. The latter show up most when using my laptop, which again proves that something hates me enough to take away my only link with friends, via email and this place. I'd put it down to RSI/carpal tunnel syndrome if it wasn't that it occurred in my right hand and then within 24 hours my left too. I'll have to stop typing this soon as it feels too dangerous and the jabs of "ouch" too jarring.
My pay goes to zilch on Tuesday: I have to enter the mire of incapacity benefit, and David Blunkett's proposed schemes to use lie detectors to determine if I'm a fraud, examine my water, gas and tv bills to see if I'm a fraud, and reams of assessors who nothing about ME to see if I'm a... fraud. Hey, maybe I'm a fraud.
The predominant feeling is, honestly, a return of despair. At these clusters of symptoms, at the poker-faces of my GPs, at the lack of action, at the fear of what all these seemingly neuro symptoms could be on top of the gastric onset, loss of hearing, tinnitus. Surely there's a clinical picture here someone could see? I've suggested TIA's/mini strokes, viral infections, bacterial infections: but they want to call everything I could conceivably get "chronic fatigue" (I have to add the "... syndrome", increasingly sharply, and suggest they read the World Health Org's classification of disease). I don't believe for a second that what's happened to me in the last 12 months is "chronic fatigue": I believe and have told them that I believe I'm under attack by some infectious agent or other, or a neurological condition. No investigation ensues, my GP suggests the ludicrous "reverse therapy" (you'll have to Google I'm afraid), and I withdraw, foetal and in exhaustion, to hope I will fight on another day.
I hope those friends who don't hear from me get here to see this as my christmas letter to explain my email silence, and I hope you don't stop thinking of me as a friend. I can read your mails and comments but not reply for now, mostly. Maybe my hands will get better; maybe my eye less blurred; maybe my weight, strength, white blood cell count and hope return. I remember all those maybe's in that entry here months ago, where I tried to turn them back into hope of renewal. But it's autumn now. There's a million things to suggest and I and my partner have probably only tried a thousand of them - but right now I feel like someone half way up a mountain, in a blizzard, deciding maybe now's the time to let sleep and snow take over.
Posted by honey at October 19, 2005 3:56 PM
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Take care xx
Posted by: Vicky at October 19, 2005 7:53 PM
I continue to pray for you, on and off, not nearly as much as I should do. I am constantly disappointed by the oppressive governmental view that anyone claiming a benefit for any reason at all is initially assumed to be likely to be fraudulent. I am also disappointed by the medical profession who think they know best. I live in my body 24 hours a day and know a damn sight more about it than a medic who glances at me occasionally. But, Honey, saying stuff like this probably doesn't help you, and it probably doesn't help me either. But I am thinking about you, and have done ever since I was told that you were not a healthy bunny.
Posted by: ringbark at October 19, 2005 10:05 PM
You say you're halfway up the mountain? I say that's pretty darned good - look back at where you started from, for heaven's sake. I'm not surprised you need a break.
I don't know anything about anything, really, and I always feel like a clumsy, inarticulate oaf when trying to discuss any of this stuff.
But enough with the apologies, and the worrying that people will stop thinking of you as a friend. That's the last thing that should be on your mind. Hibernate, if you need to - we're not going anywhere. Blimey - if the sorry state of my blog and lax emailing habits scared off my mates, I'd be one lonely bunny indeed.
I enjoy and greatly benefit from the contact we have, but you know that the only time you really *have* to speak up is if you ever happen to need some help. In the meanwhile, please just do what you need to do, and ease back on the having to explain yourself part, if it's not doing you any good.
We'll be here when you come out the other side of this. There'll be good health and good times, and I'll even bring Julie around for a long-overdue pint. Can't say fairer than that.
Posted by: VanillaFlavouredDavid at October 20, 2005 2:14 AM
Nope, i'm not going anywhere. Can tell you that as many times as you need to hear.
Posted by: ulla at October 20, 2005 7:42 AM
Just focus on getting well and write when you can. We are all here for you.
Posted by: Tycoon no 9 at October 20, 2005 8:50 AM
We are indeed. I was stoked when I saw a new entry - now I'm sad but fiercely hopeful of something better around the next in a neverending stream of corners. Lots of love to you and L.
Posted by: Markelby at October 20, 2005 12:31 PM
What a bastard this illness is. How cruel beyond words. Multi systemic. Multi symptomatic. Nothing like 'chronic fatigue'. I almost want to rinse my mouth out after using that phrase.
Don't pressure yourself to reply. Your friends are thinking of you. I'm at a loss for words. I've been as ill as you and come out the other side of the acute storm. It can happen.
love C x
Posted by: Ciara at October 24, 2005 2:53 PM
Yes Honey, you're really real.
I know the reality you're in right now really sucks, but the reality of YOU is such a precious thing that you have to be as brave as you can and protect it until you come out the other side.
Posted by: Michele at October 28, 2005 4:30 AM
Aw, belated thank you everyone. Knowing your stubborn eyes pop back to see if I'm still here really really helps. Helps me know if I am really real (only Michele will know why I said this in this context, I bet).
Thank you Ian too - although I don't share your faith any longer, kind thoughts.
Yeah yeah... and you've certainly got those wildcat charms. god knows you got your claws out here this weekend.
Posted by: Michele at November 6, 2005 5:35 PM
i think you're great.
Posted by: ulla at November 9, 2005 12:14 PM
Interesting weblog - guess I will return as you
verbalize some of my views. Have had CFS for just
over 20y... could go on, but will spare you.
The reason for this post is that I am investigating
"Reverse Therapy" and I want to know (genuinely) why
you call it ludicrous. Is it too far surreal for you
to contemplate? Or do you have evidence or experience on the subject? Thanks anyway.
Posted by: Alastair at November 21, 2005 12:32 PM
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