Six? Eight? months ago I was very different. I was in the depths of illness. I was struggling to keep afloat, physically, mentally, emotionally. I did very little because that’s all I could do. I was scared, in pain, and exhausted.
Today? I rode my bike to work, and home again. I had a productive day. I moved things around the office. I was relatively active. I’ve stopped worrying about how much of my job is physical – I can handle that now, at the very least, which is refreshing.
The difference between those two versions of me is staggering. And yet, because I’m still not 100% well, the emotional baggage, the anger and confusion, and the fear are still as prevalent as they were when I first got sick. If anything, it’s harder to process my limitations when I’m slowly getting my body back to normal. There’s little emotional relief, even though I’m physically improving.
My brain works in a very binary way; I’m either sick and I can’t do anything, or I’m well and I CAN DO EVERYTHING WATCH ME GO ON A 3 HOUR HIKE AND PARTY ALL NIGHT AND CYCLE ALL OVER THE PLACE AND DRINK but I can’t. I’m not bedridden anymore. I’m not struggling just to cope with work anymore. But I’m struggling with the very slow incremental increase in capacity. I’m impatient and I need to be better now now now, but I’m not. I want to be able to go on a 40km bike ride without worrying what my body is going to do for the next week afterwards. I want to stay out all night without the crippling anxiety of impending physical pain, and the I told you to take it easy’s.
I used to throw myself around a lot, and I mean that in multiple ways; I drank a shitload, I ate terribly, I stayed up late, and when I was exercising, I was going hard. I was always elated or in the depths of depression. Now I’m having to learn moderation, and honestly, it’s frustrating. Sometimes you want to thrash your body on the bike, or you want to get sloppy drunk. I like extremes and I’m used to extremes and it’s crippling to lose the confidence I had in my own body to cope with those extremes. I can’t dive headfirst into anything anymore. Everything requires thought and consideration and projection – how will this affect me? Can I afford to write off a whole day because of a few drinks, or a few less hours of sleep?
And yes, of course, I’m fully aware that maybe my history of extreme behavior has caused all of this. (In fact, I’m almost sure it was the cause, if not at least a major contributing factor.) I know this. I’m not stupid. And I know that I should have been moderate earlier in life. I should have done this, I should have done that… I know.
But I am here, and I am in this situation, and I’m trying to get better and find a new normal.
Yesterday I had a bit of a meltdown. One of those ticklings in the back of the brain got to me. The ticklings of an existential train of thought, of angst at the pointlessness of it all, of the horrible, awful things that humans have done and will continue to do. The helplessness of helplessness. The feeling that I don’t deserve to live, not after what my fellow man has done to other men, to other living things. I don’t deserve to be alive, let alone to complain about being unwell. And being unwell is bringing down everyone around me, especially my spouse, so I should leave before I ruin his life any more.
This is not a healthy train of thought, but it’s one that comes to me often.
I read somewhere that the number one cause of death for people suffering ME/CFS is suicide. I’m not sure if that’s true, or where I read it, but if it is, I get it. I’m still a long way from considering it for myself, but I get it. This frustration is difficult to articulate, and I can see how exit might feel like the only form of relief. I certainly thought about it a lot when I was first sick, and I think about it now, even at arm’s length.
As I type this, there is pain in my fingers, my knuckles, my wrists, my shoulders, and my ankles. Oh, and my knees. The knuckles are the worst. They throb, and every once in a while there’s a sharp little stabby pain for good measure.
I stopped telling people about the pain a long time ago. No one wants to hear about it or watch me rubbing my wrists and grimacing. At most, I tell people I’m “feeling achy”. Being specific helps nobody, and in a way, acknowledging the pain in front of someone often makes it worse for me. I become vulnerable, and I do not like being vulnerable.
I don’t think there’s a point to this post, other than to say that I’m still tired. I’m still in pain. I’m getting better, and that’s cause for happiness most days, but there are still days where the progress doesn’t feel like enough, or I find myself pretending I’m fine when I’m not, and breaking down when my body reminds me that despite all my pretending, it’s not okay.
I am sad, but surviving, and trying hard to reduce the collateral damage to the people around me. The hardest part is trying to tell myself I’m worthy of marriage, of the person I’m with, when my brain keeps screaming at me to let him loose, set him free to pursue the life he deserves; not this slow march towards old age that I feel like I’m dragging him towards.
Again: I’m sad, but surviving, and there is still beauty in the world.