distressed wibble (again)

[baratron]

This Functional Ability Scale for young people with ME is the most depressing thing I've ever seen. Let's leave aside the question of whether or not what I have is ME, and read it in terms of all the symptoms I have, rather than symptoms of a specific ailment. Normally, I'd be at around 90% on a good day, and around 80% on a bad day. At the moment I feel almost as ill and exhausted as I ever have done, and would be somewhere between 70 and 60% on the scale.

I'm having horrible memories of 50%, which is the most ill I've ever been. If that's 50% and this is 60%, what the fuck does 30% feel like? And if I ever got to 20% (only able to read for 5-10 minutes at a time) for more than a day or two, I would want to be shot, because my life wouldn't be worth living.

God! I don't want to wait a month to see my doctor! Why does he always go on holiday when I'm ill?

Comments

[lizw.livejournal.com]

Oh, that's a useful scale. Thanks.

At my worst, I think I was probably at 10%. It's frustrating, but I found that not being able to read etc wasn't as bad in reality as it was in imagination, because the illness mercifully takes away the desire to do stuff as well as the ability to do it. The most difficult thing was getting rid of the voice in my head that said I should be doing stuff even when I didn't want to, and it was when I succeeded in shutting it up that I finally started to get better. Now, I'd say I'm at about 90% most of the time.

[nitoda]

Can I make a suggestion? If you are worried about getting worse, then try to rest as much as you can and then some - ie about twice as much as you think you really need. If you do have ME then "aggressive rest" in my experience is what you must do. And if that means not posting to LJ or only doing short posts, then that is also indicated. Do you actually start to feel physically better when you rest that much? It can be hard to tell if you're depressed about not being able to do stuff, I guess. I remember there being a differential diagnosis test to tell the difference between depression and ME. From what I can recall, the depressed patient does not *want* to do stuff, whereas the ME patient desperately wants to do stuff but can't because of the physical consequences of exertion. (For *very* small values of exertion!) My daughter was so ill that she couldn't read for a few weeks and it nearly drove her insane. It was a very trying time for us all and I ended up spending a lot of time with her just keeping her company and listening to relaxation tapes etc. That was way before we got the actual diagnosis though. I now consider her to be recovering, but she is still at a stage where I would not expect her to be able to cope with more than occasional part time work as well as domestic responsibilities, and she has no kids, only a dog to look after. I'm not at all sure where on that scale I would put her. It's encouraging to hear about Liz's experiences and her nearly complete recovery. I would be delighted if I thought Jen could hope for such quality of life in the future.

HUGS!