Gray on 21/6/2021 at 21:18
Whiny rant alert.
Today it's been exactly 20 years since I last had a good day. By that, I mean a day when I didn't feel like utter shit, crawling out of bed first thing in the morning. I remember the day, because in 2001 I had three good days. I made notes. I woke up, feeling... fine. Normal. That was unusual. So unusual I wrote about it in my blog, or "weblog" as we were still calling it in those olden days. I noted that this is how it
should feel all of the time, not being ill or tired or completely scrambled. I wrote then, that in 2000 I had about a dozen good days. In 1999 perhaps 50. So, the decline was slow over a long period of time, there was no one moment when it went from good to shit, no moment of sudden trauma, I was aware at the time that something bad was happening slowly to me, but I didn't know what.
I still don't. It took me a few years to get the diagnosis of (
https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome) ME/CFS, but that didn't really solve anything, except it was something I could argue with to get medical benefits, for some reason people don't often believe you if you just
say you feel like shit, you have to somehow prove it. I spent two years trying to convince the benefits authority that I was actually pretty damn ill before they finally got it, but it's hell on earth to try to prove that you're ill when you're ill, because you don't have the strength to fight the authorities. You look normal but feel terrible, so nobody believes you and think you're faking it to get out of work. Well I wasn't. I'd love to be able to work again. But my life was stolen from me by an illness that, 20 years later, is still ruling and ruining my whole life, dominating every aspect of it. From the moment I wake up, all through the day, to the moment I struggle to get back to sleep again. All the time. Every damn second.
ME/CFS is not one thing. It's an umbrella term to catch a very long list of symptoms, so there is no known cause and hence no cure. Certain things can be similar, and if correctly identified, curable. So far my cause has not been identified, and I've lost the strength to fight to find a cure, because, well, the obvious reason. I'm not strong enough to fight.
So, how does it actually feel, then, I hear you ask. Well, imagine the worst hangover you've ever had. And a flu. At the same time. And it never ends. You really do not want to get out of bed, but you have to, because you can not sleep any more, no matter how much you need to, and there's probably something you need to do today. One thing about long term illness is that it is very different from your average illness. Imagine that you have the flu. You feel terrible for a couple of weeks, and do as little as possible, before you can get back to your normal life. Then imagine it lasts forever. At some point you will still have to do all of those things you have to do in life, you've put them off for long enough waiting to feel better, except you're not, so now you have to do them
while feeling terrible. That's a very steep learning curve. You have to learn how to fight through the illness to do even the simplest of things that you'd be used to doing automatically with no effort. But now you have to struggle to finish, and struggle hard. And then you're spent, after doing only one of the things on a very long list. The rest will have to wait for another day.
The worst part is the brain fog, losing your ability to think, and feel how your whole personality is slipping away. I used to be quite clever. Now I'm dumber than a bag of rocks (or a UKIP voter). My whole life was spent on being clever and learning how to do some very difficult things. Clever engineering type problem solving was my thing, with some pretty nifty computers. Now, on most days, I'm barely literate. I mean, I can technically still read, but comprehension is a struggle. Halfway through a sentence I have already forgotten how it started, and I have to read it again. Absorbing new information is extremely difficult, I have to mentally punch through the constant headache and brain fog, and struggle hard to understand what the hell is going on. I doubt myself, did I understand it correctly? Very often not. Any even vaguely complicated language takes ages to get through, so I tend to put it off, hoping for a better day tomorrow when I can understand it better. Of course, tomorrow I still feel like shit. And after about two or three days I've forgotten about that thing I was supposed to do.
I can no longer remember what it feels like to be fine. For 20 years now, every day has been a bad day. Some days are worse, but none are good. Back in 2001 I could distinctly recognise what a good day was like, and I was surprised and overjoyed to have one. I don't remember how that feels anymore.
This is not just another whiny rant. Yes, I feel like utter shit all day every day, but I've still had a pretty fortunate life, albeit not quite the one I imagined when I was younger. All of those dreams were taken from me by illness. I've stumbled half-dazed into new ones. I met a woman in a faraway country. We fell in love, got married and I moved there. Sadly, cancer took her from me, but I got a few years of happiness that I did not expect to ever see. And now, well, even in my ill, grumpy, miserable, whiny state, I somehow have stumbled into another wonderful woman who seems to like me for some strange reason. Weirder still, she's from my home country, and even from
my part of the country, and has lived literally around the corner from me for the last seven years and I never knew. Life is strange. When I say I haven't had a good day in 20 years, I mean health-wise. Emotionally, I've had quite a few good, happy days, ups and downs like everybody else. So no, not everything is terrible in my life. Just my health. And as a consequence, no money, no job, no car, very little freedom to actually do anything. It's a little bit like 20 years in lockdown, with the dubious bonus of a neverending headache and chronic fatigue. Long Covid sufferers can probably relate, although I got it before it was trendy. How cool am I?
So why am I posting all this whiny nonsense? Probably just because I'm very much aware that it was 20 years ago to the day when I last had a good day. I feel I should mark it somehow. I know I've whined a lot to TTLG over the years about my illness. When I joined in 1998 I was still ok, and then it slowly crept up on me, and I eventually had to stop moderating because I couldn't keep up anymore. For many years I was away from TTLG, purely because I didn't feel well enough. But over time, you find ways to cope. You have to reinvent how you do things. Find workarounds. And slowly, while you're still getting worse day by day, you get better at dealing with it. That's why I came back. Well, no, I came back to see my old friends again. But that's
how I came back. I may not post as much these days as I used to, which is probably good for everyone, but I do still visit and if I have a decent enough day, might actually read a few posts. But nothing complicated.
I do have the vain hope that this post will be somewhat relatable to other people with long term illness. Or perhaps, it might just explain to normal healthy people why I'm such a miserably whiny grumpy bastard all the time. That isn't strictly true, I was a miserable whiny grumpy bastard long before I got it, but at least now I have something to blame it on. Constant pain tends to make you slightly less cheerful, but I'm actually rather pleased with myself for not whining as much as I feel I should. But nobody wants to hear that.
ME/CFS? I wouldn't recommend it. One star out of five. Avoid if possible.
Pyrian on 22/6/2021 at 03:24
Aw, don't worry, we don't remember you for whining about your health.
...We remember you for whining about how you were never ever in no way possibly ever going to find another wo- oh here's one. :cheeky:
demagogue on 22/6/2021 at 03:45
CFS is not unlike Long Covid I went through last year. I think instead of focusing on labels and formal diagnoses, it's better (I mean as a practical matter, for day to day living for normal people, not speaking to physicians here) to focus on the way the autonomic system works and what happens when it goes wonky for whatever reason. There are usually a nest of things that go wrong together, like the fatigue, brain fog, dizziness, rashes, bowel issues, heart palpitations, sensory wonkiness (blurry vision, pitch sensitivity, tinnitus) etc.
As for options to treat or anyway deal with it, I mean I can talk about what people in the long covid community are talking about, the usual suspects, exercise, eating well, staying hydrated, getting enough & regular sleep, avoiding stress... Practically though, a lot of it is just getting recognition from others that it sucks & there are other people in the same boat with you.
Fortunately in my case, the long covid symptoms have let up a lot in the past few months, and fatigue wasn't really one of them (once the heart issues let up), so I can have something like a more normal life now, sans the annoying continuing of the tinnitus and a few little things that are anyway okay.
lowenz on 22/6/2021 at 06:40
Quote Posted by demagogue
once the heart issues
So I was right.....
(wait subjeff has been banned?!?!?!?)
demagogue on 22/6/2021 at 07:05
We went over that more than a year ago. :erg:
Gray on 22/6/2021 at 11:10
With great difficulty. It took me years for the doctors to realise it was actually a physical problem. Me just sitting there saying that didn't seem to matter. I always said I didn't feel stressed, or anxious, or depressed, because at the time I wasn't. They just assumed it MUST be one of those and started off on their own little wild goose chases, until they eventually realised I had been right several years ago.
Quote Posted by Kolya
Have different diets had any effect?
No. I went through all of that as well. For three months I ate nothing with gluten in it. The most boring food in the world. Unsurprisingly, no change whatsoever, but I still did it just to exclude it as a possible source. Everything they've thrown at me, I've tried, even while saying to their faces "this is not the issue, but just in case you're right, I'll try it."
Quote Posted by Kolya
If you had a few normal days healthwise, what would be the first things you'd do?
Difficult question. Probably just enjoy being able to think straight again. And then go outside, and probably initiate a conversation with some random stranger.
[Edit]
But, if I somehow magically got well and started to function normally again, one of the first things I'd do is think about work. Having not worked for so many years, all of my old skills are outdated, but I used to be quite clever and adaptable, so I'd think up a plan for what I needed to do to start working, maybe educate myself about what's needed nowadays. I miss having a brain, it was my favourite part. (Yes, ok, the penis is pretty great, but I still have that and it still works, so I don't have to miss it. End your puerile jokes now.)
Quote Posted by Pyrian
Aw, don't worry, we don't remember you for whining about your health.
...We remember you for whining about how you were never ever in no way possibly
ever going to find another wo- oh here's one. :cheeky:
Oh, good. I have several different subjects to whine about, it's always good to know which whiny nonsense I'm being remembered for :cool:
PigLick on 22/6/2021 at 13:55
have you tried CBD oil? I too suffer from an auto-immune disease which makes me suffer terribly from insomnia.
Gray on 22/6/2021 at 17:26
Yes, briefly, but as expected, it did nothing. Perhaps the mixture was too weak, I don't know. Everyone I know here recommends I should smoke some weed, but I am very reluctant to do anything illegal, I've never taken an illegal substance and I am too bloody stupid to start now. If it was made legal I'd try it.
My reasons for avoiding weed are a very long list, including what it did to a family member. Restricted and careful use might be ok if it was legal. but I will NOT try it until then. When my wife was slowly dying from cancer I rolled joints for her as pain relief. Yes, that's right. I've rolled joints (quite badly) but never smoked them myself.
Tocky on 23/6/2021 at 04:24
Well damn. I guess hallucinogens are right out. They wouldn't cure your staying awake but they would make it damned interesting. I too would have recommended weed. It's very calming. I don't recommend CBD oil unless by controlled pill dosage. Do not vape it. We had a guy at work just trying to calm down enough to function who suddenly had a seizure from it. I'm talking eye rolling toe curling presenting. Weed is much better. I've never seen a single seizure from that. Personally all I have to do is sit down with a glass of wine and a movie I want to watch and I'm out like a light so what do I know? I do have pretty severe migraines complete with crenelated pulsing rainbows but really I've had worse hang overs. I have no idea what you are going through.