I always cringe when I set out the following advice as I am not medically qualified but I do have far too much experience in ME not to know what I’m talking about.
I hope this helps and doesn’t sound like I’m preaching…
I do so hate to read that a Member is in such a bad way at the moment. It brings back all those sad and frustrated emotions which I knew only too well.
Just as important as your Vegepa, in my opinion, is Pacing.
Lying in a dark room, at your worst, presents no problem to Pacing – you can’t do anything so you’re not tempted to!!
We (my daughter and I) started off, right at the beginning when we were learning what it was all about, and later, when we needed to go back to basics, by giving every little “activity” a score out of 20. The higher the score, the more tiring. (Talking on the phone = 8, showering = 7, eating downstairs at the table = 12, reading for 10 minutes = 10). It’s different for each person, I guess.
After a few weeks we realised that doing more than 20 per day lead to a relapse which could last for days or even weeks when she was so very bad. We soon worked out that using eg. 15 a day kept my daughter on an even keel, no great highs or lows but stable and even able to lead some sort of minimalist life whilst not getting worse or suffering with too much pain, exhaustion, brain fog, etc.
After a couple of months, the scores had to be reduced for each activity as they weren’t as onerous as before, and we could introduce new ones to throw into the pot.
All this was painstakingly slow, depressingly introspective and isolating but it did get us there in the end.
Think of Pacing like a bank account – never use more energy than you have in the bank or you’ll go into the red and suffer from it. Only spend a max of 80% of what you have in the bank so you have some left over for the next day, or better still, the day after next. Remember that (one of the tell tale symptoms) with ME, exertion on Day A isn’t usually “paid for” until Day C (post-exertional malaise).
That way you’ll always have a reserve and be able to build up a bit more reserve (on your rest day/s) than the minimum required of 20% .
Also, only set yourself realistic goals so you’re neither disappointed at “failing” nor trying to burn the candle at both ends.