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.