Re: Karissa- not sagefox

[Guest guest]

Hi Barbara,

This was addressed to me, but I think it was supposed to go to Karissa. I just

want to make sure she gets the info. It's certainly not me on this schedule. I

have a 16-month-old (today) and am pregnant, and that keeps me having to keep

going, but I do not work and I go to bed whenever my daughter does, even though

I don't sleep much. I hope this goes to the right person.

I would also agree with what you said, as a long-timer with this disease. The

earlier years, there is still a chance for recovery. I know that for me, in

year 4 I had an experience that was setting me on the road to recovery.

Unfortunately, I was seeing a psychiatrist at the time and he decided I was

" manic " and put me on major antipsychotics for awhile, and scared the hell out

of me with stories of how psychotic I was going to get. Well, I wasn't manic or

getting psychotic. My brain was healing (this is according to a neurologist,

and I've never had trouble with anything close to mania, even when I don't sleep

for 72 hours- I can barely move or speak then, and my muscles shake like no one

believes, but I sure as heck don't have energy then or feel up or even more

hostile than any person not sleeping that little and in that much pain would

feel).

If Karissa was addressing me, I got CFIDS after Mono at 17. I already had

Interstitial Cystitis starting at 16. Fibro appeared at some indefinite time

after the CFIDS. I totally understand you working so hard to reach your dreams,

and I do understand what it is like to not have money. I had to do what you are

doing in the beginning, there was no one to support me, and while I am married

my husband provides extremely minimal support for me- he's got serious money

issues. It isn't the life I would have chosen. I hope you do reach your

dreams. But I always caution to get as much rest as you can. When I can sleep

even minimally with low quality, I do better than when I'm awake all night.

This requires, for me, medication. And I hate it. But it's what I have to do,

or I'm back to 72+ hours awake.