featured finished works life with disability/illness

Rheumatoid life

Fatigue edition.

I occasionally realise that people don’t experience pain in the same way, let alone experience different types of sources of pain. There are also different kinds of tiredness so that it can be hard to understand when someone with a fatigue symptom can appear to be okay.

Tonight I was supposed to go to an SCA feast but with the time frames, the distance traveled, the time waiting, I simply couldn’t commit. This is fatigue- looking at the full time frame and working out how long I’d be sitting upright, how long I’d be walking, how long in a car, how long standing. It’s a calculation I wish was much easier but it’s not, and I don’t always get it right. This is because it is complicated and relies on variables that can change in under an hour.

This is not about prioritising, not about saving energy for people and things I love, it’s the on the day calculations and working out if there is a cost, and at what point it will come up to pay. If it comes up during a time I’m away from home I have to err on the side of caution. It’s not about making choices of who to spend time with.

Fatigue itself is not about being tired, it’s more like misfiring communication between different parts of the body and brain. Right now I am upright and not really going to be doing anything different to what I would be, on the surface at least. But there are few consequences for myself or other if I stumble a bit, or bump into things.

Mistake making is high when brain and body are not quite fully in communication with each other. It feels like there is lag between thoughts and between thoughts and actions. That delay is okay when I can self correct, but it’s tiring on top of being tired to try and stay vigilant for errors. Am I going to trip, where are my feet, where are the feet of the people around me, is there a rug, or equipment? I am not naturally tidy, but I have had to make sure that anywhere I go there is a clear path on the floor. Not just because of fatigue but because I can’t just step over or around if my ankles or knees have inflammation.

I am avoiding a fatigue crash because it is so vile. We talk about brain fog, or the methotrexate hangover. And for people who have experienced being hung over it really is the same. The seasick feeling, the delayed response, the sensitivity to light and sound and smell.

But imagine that if there was no payoff. That you didn’t have a crazy night out.

And yep, there are times you just say if I’m going to be this miserable after then just do it. Today is not one of those days because I know the time frame would be too short for me to manage it.

Other times I have been able to. So that is always something to hold on to- there are times where everything works out.