It’s been a tough week. My emotions have been ricocheting about all over the place, a potent mix of exhaustion, guilt and sadness. At times I’ve felt totally overwhelmed and self-destructive.

The relentless schedule of the last few months and my frustration at not having the energy I need to do things well has been spilling over into all areas of life. Consequently I’ve made a load of very questionable decisions. But I’ve also made some good ones, and as the week drew to a close I felt much more positive.

Today’s the first Saturday I’ve had off in over a month. A painful ticcing fit in the early hours might not have been the best start, but I had a bit of a lie-in and took things easy for much of the morning.

Then I popped out to take care of a couple of chores and to visit my regular carer Joyce who’s recovering from a recent knee operation. I was back in time for my afternoon nap.

After my nap I’d planned to go to Cumulative Effect, an exhibition curated by Shape Arts, on disability and the welfare state. The exhibition looks incredible and I was excited to see they were hosting a ‘relaxed’ viewing this afternoon.

I’m not always great at knowing my limits, particularly when there are things I’m really keen to do, but when my support worker Joe came to wake me up I knew heading out would be a bad move, and for once I listened to my body.

I’ve spent the rest of the day in bed – watching trashy telly or listening to audio books. I got up briefly to have a relaxing hot bath and then got straight back in.

It’s not even 9:00pm but I’m planning on settling down for the night soon. I’ve spent a lot of time recently battling my body, wishing it worked differently. Any adjustments I’ve made for my changing health have been either because I’ve been driven to make them, or because my friends or colleagues have insisted on them.

Today, though, I’ve really enjoyed resting. I know it’s desperately needed, and unusually I’ve actually been able to just let go and rest.