My parents are nana are coming up today, to celebrate my birthday early.
For me it’s gonna be a big day out – 5 hours of being out in the world; eating lunch out and visiting museums.
Yesterday I was suffering for pushing myself too far the day before. And by pushing myself, I mean and I went out for a few hours in the afternoon, then in the evening spent 3 hours researching epilepsy medication and taking notes…that was way too much, and I paid for it dearly 😅 I went to bed exhausted with a headache, woke up midway through the night with a migraine, and woke up in the morning with a migraine too!
Spent all day yesterday up until 5pm sleeping, but finally felt better in the evening and managed a short dog walk.
Hoping today will be a good day out…fingers crossed for no pain, not too many seizures, and that I don’t end up paying for it tomorrow!!
We’ve had a few busy days recently, beginning with my parents visiting at the weekend and journeying to a zoo.
The busyness caught up with me, and for the last few days I’ve just felt so physically exhausted. One day I didn’t leave bed other than to go to the loo. I have been SO TIRED.
For years I would’ve fought against this, called myself lazy, and been filled with self-hatred. But I’ve learned that when you’re chronically ill / disabled, you HAVE to listen to your body. Self care is not selfish! If you need a day of rest, you need a day of rest. If you need an entire day in bed recovering, do it!!
Today I woke up feeling energised, but I pushed myself too much. I ended up having to come home from a day out early, I had a seizure and fell (and have a cracking bruise on my head now), and we had to cancel plans with family. I rushed back into activity too soon, but I’ll learn from this and take it slower next time.
Point of this post? I dunno. Listen to your body, fight the stigma of others thinking you’re lazy, and do what YOU need to do.
Yesterday I had a day out.
Not much; 10 minute train to the seaside, hour and a half walking about, 10 minute train back. The rest of that day I was out of spoons though, I felt awful.
Today I am apparently still out of spoons, this day has been hell.
My seizures have all lasted longer than usual. They’ve affected me worse than usual. I’m struggling mentally, I feel low and hopeless. I had two outbursts of EDS. I’m just doing awful.
Filled with hate, filled with anger, don’t know why I bother.
Gonna cocoon and try regroup.