A big part of this illness ‘game’ is keeping your head up, trying to stay positive. When someone else says it, depending on the context, the inclination can be to want to swiftly punch them in the face. Right in the face. But really, it’s true. True but by no means easy.
I must be feeling a bit better, the fog must be clearing slightly in this muddled underworld existence. I know I’m feeling better because I start …feeling. Not to say I can’t feel when I’m in the throes of a very bad flare or health crash. But I can’t feel with a lot of energy. This is something I never knew until falling ill. I’d often fed off my own high emotional energy in the past – to get me through hard times, to motivate myself, to enjoy being alive. I felt like I’d lost a limb when I lost that energy.
It seems one thing I’ve learned through years of illness is that no matter who we think we are (and I previously identified my personality very strongly with my emotional landscape), when your vitality is low enough, you can’t maintain your personality. You just can’t. Not as it was. For me my exuberance is dulled, my tendency to be angry, spontaneous or excited is less. I simply don’t have it in me.
At times this has felt very hard as I’ve wanted to get angry and storm off, or I’ve wanted to dance around with joy but in both instances my body has prohibited me. I haven’t been free to express these stronger emotions in a physical way, except for a few rare moments, in years. I may put on a mask of exuberance for a time – but it’s not completely real. I do this for others and for myself, because I find the relentlessness of this illness as boring and insufferably dull and morose as I’m sure onlookers find it. This doesn’t mean I’m depressed all the time, it means I’m so perpetually exhausted physically 90% of the time that I am limited in how I can express myself.
But I’ve been feeling today. More of that fiery impatience, anger, frustration – I want to get out and go for a run…except my body is so deconditioned from years of being unable to move much at all. Which only heightens my annoyance. “What is the point of all this?” I think. I used to exercise to keep in shape and now, it seems I’m punished with not being able to then facing the prospect of needing to start from scratch with my body like I never tried in the first place. I wonder if I possess the patience required to do this dance of waxing and waning vitality. I’ve come to the conclusion that I don’t really have a choice.
Then I recall my worst moments, in hospital or at home. So awful that I can only contemplate them from a distance, putting a hazy wall of safety between me and these memories that I lock in dark folds of my mind. I do this to edit my perception of my life so that it is at least tolerable, if not remotely desirable. It enables me to be relatively cheerful and pleasant from day to day. Sounds contrived but another lesson I’ve learned is happiness (or ‘not engulfing sadness’) takes work – at least in my situation. I’m proud of myself for not staying in the dark places I could go.
When my energy lifts a bit, the lid comes off some of what I’m repressing. It’s just another perverse quirk in this chronic illness thing. But I can’t really invest in it because so far it’s always been fleeting, sporadic. People might read this and indeed some have said to me “why don’t you just get a hobby?” or “why don’t you try online dating?” but at the end of the day I’ve tried so many times to start things only to fall in an exhausted heap…it might be hours, days or weeks – but inevitably I do fall in a heap. By which I mean I may not be able to muster the energy to shower. Hobbies and dating require much more of me – I wish I had the capacity to commit because I want to. So so badly. But wanting doesn’t change reality.
When I’m really ill I glorify wellness – I make it the proverbial carrot on a stick that I need to focus on but the truth is you don’t just arrive there. It’s this up and down that comes with lots of discomfort and self-reflection and frustration and gratitude. It’s a messed up rubix cube of thoughts and feelings being thrown around by a manic toddler. There’s no flat ground. It’s always changing. It’s hard and it can be isolating but for now it’s the life I have. I am loved. I am safe. There’s always hope on the horizon. And so I switch my focus to what I can control and sometimes that’s just my thoughts as I lie inert on my couch. Sometimes it’s much more and hopefully one day it will encompass a whole lot more but for now, this is it. My one precious life, no second chances. This. Is. It.