Russell plods forward, dragging his feet

Russell: I’m tiiiired. And my knee hurts.
Carl: Which knee?
Russell: My elbow hurts and I have to go to the bathroom.       – Up

Some days I just don’t feel like bothering. I’m tiiiired and everything hurts. I break life into tinier chunks, the tiniest of chunks and still every single tiny piece comes fraught with complication. I don’t want to deal with it. I want things to be automatic, like they are for most people. I want to stop, take a break, feel better, but I’ve already stopped and I am not feeling better.

I was diagnosed with Chronic Fatigue Syndrome long before I was diagnosed with Ehlers-Danlos Syndrome. There are very few symptoms of CFS that do not overlap with those you have when you have EDS with autonomic dysfunction. Difficulty concentrating (“brainfog”), extreme fatigue, muscle pain, mlti-joint pain, headaches, unrefreshing sleep, postextertional malaise, abdominal pain, dizziness, irregular heartbeat, shortness of breath are all symptoms of CFS, but they’re also all symptoms of EDS. It wasn’t until somebody noticed that the joint pain was from dislocating joints extremely easily and frequently that the correct diagnosis was eventually made. It didn’t really matter to me at the time, neither diagnoses had a cure or truly effective management options, so I was still exactly in the same place I had started off, with the same symptoms and the same problems it all presented.

The why eventually made a big difference in how I approached it; when I was under the impression that there was no obvious underlying cause, I thought that I could just push through it, even though trying to push through pain or fatigue has a tendency to make it worse, I thought that maybe if I tried hard enough, I could overcome it. Knowing that my collagen isn’t made the way it’s suppose to and that no amount of motivation or willpower could fix that, finally made me accept being sick and eventually, being someone with a disability. It had nothing to do with willpower and everything to do with genetics. It wasn’t my fault and it wasn’t within my power to control. Damage control is all I had.

We went out yesterday for a good few hours and I’ve been staying up late watching E3 press conferences, reading about it and thinking about ways to make gaming more accessible to me. We’re moving house and in between I’m either sorting through stuff or advising Chris on what to pack and what I still need. And today I’m tired because I stumbled out of bed at 9am yesterday, didn’t nap and stumbled back into bed in the early morning hours and then couldn’t sleep. I know it’s out of my control, I know that as long as I keep lounging the hours away like I have been doing, resting and reading and staring out the window at the very green trees blowing in the wind I’ll be my usual self again tomorrow, but that doesn’t make me a more patient person. I don’t want to be tired and hurting so much today. I want to feel better right now.

There is stopping and there is slowing down. I used to run a little when I was at school and I still vividly recall how difficult it was. I tired easily and the pain of impact on joints that wobbled were intense even then. I always had this piercing pain in my shoulder that I only later learned were my shoulder (partially) dislocating with every step, bouncing in and out, in and out. I was often lagging behind, stopping when joints gave way to put them right again. I didn’t know then that this was not the normal experience, I simply thought everybody else were better motivated than I was. There were so many times that the wind were drying tears on my face and I really couldn’t stand the agony, but somehow, I just did. I didn’t always manage to keep going, I didn’t always finish, but I always showed up for the next run, ready to try again. I no longer push myself to those extremes. I know that if required, I could and when you have no choice but to inflict that level of pain and discomfort on yourself, you do it with as much grace and little complaint as possible, but it’s not cowardly to steer clear of it when you can.

Today, I’m tired and everything hurts. I would like to do the million things that I haven’t gotten around to doing just yet, my to do list is flashing red in my head, but there’s nothing I can do about that. I’m stuck, but that doesn’t mean do nothing. It just means start small with one thing at a time and proceed slowly, at a comfortable pace. I can do that much and it’s sure as hell beats the alternative of just do nothing.

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  1. Beautifully written!
    ~a fellow EDSer

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