I hate it when I am so shattered I can't do anything. It's pretty rough. I find myself so exhausted that even lying down seems effortful and when having light, noise or anything just makes it worse! It's so hard because you get so tired you can't sleep and I find myself in Zombie phases where I feel that cognitively I can't do anything.

I am lucky that a couple of years ago I started a program that got alot of the dreadful exhaustion under control, and it's fine as long as I am very very strict about following it every day, but since going to uni I have lost control and so am back on the total exhaustion highs and lows which make so much more complicated.

The only thing that helped me was getting into a very very strict routine and trying to make sure that every day I was up and sitting for a 3 hours, then lying down again, then getting up again and getting into a strict timetable and being careful not to overdo it. However, then I'd flare, or get an infection and it was back to stage one again!!!

Much love

Frogga xxxxxxxxxxxxxx