Time Shift

Three Months ago...

I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there? 

Today...

It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.