Fatigue Changes Everything
Before my stroke, tiredness was fixed by a good night's sleep. I'd get on with my day and have an early night.
Neurofatigue doesn't work like that.
I'd push through, keep going and tell myself, "it's fine, get on with it". The more I did this, the worse I felt. I had to learn to set myself limits. Even today I struggle with this. Determination has been an asset in many ways, but not when it comes to neurofatigue
Neurofatigue is hard to explain. Everything takes more energy. I never imagined going to the supermarket would make me tired. It can feel like trying to use a phone with 5% battery. I didn't notice it in rehab. The days were structured: rehab, meals, and family visits. There was no aspect of "real" life.
Daily life meant I had to think about what I was doing. Learning to plan around my energy levels was hard but something I had to learn fairly quickly. I have to think about what my body wants to do. It doesn't mean I have a boring day-to-day routine; I just have to take things into account. Parking, long walks or difficult access can all make for a more draining day. Things are less fun if you're tired.
One of the weirdest bits is that enjoyable things make you tired. I can go out for lunch, have a lovely meal, and still manage no more than Netflix in the afternoon. These days I am better at managing it.
I can see it differently now. The lunch wasn’t a failure because I needed to rest afterwards. It was a successful day that required some recovery time.
I've struggled to come to terms with the fact that rest doesn't mean failure. It felt like I wasn't doing anything productive. Don't get me wrong, sometimes it still does.
There are days when the best choice is to watch Netflix and have a cup of tea. Fatigue hasn't stopped me from having a life. It's just changed it.
