As someone who struggles with severe, progressive ME, one of the issues I struggle with most is giving in to new lows as the illness progresses. Over the years, I’ve learned this illness is relentless. It will continue to worsen no matter what I do. Sure, I can speed up or slow down the progression some depending on how much I push myself beyond my limits, but in the end, the illness will be worse this month than last month, and next month than this month. That’s just how it is.
So why do I fight it so hard? For the past several weeks I have become aware that my body is pushing for a noticeably new low. I already spend all of my time in bed (when not using the bedside commode) in a dark, quiet room. I already limit my in person interactions with people as much as possible. I also limit my online interactions to a few minutes several times a day. Already, I have been forced to give up almost all solid foods, living day to day on however many shakes I have the energy to drink and the ability to keep down. I’ve given up so much to this illness already. Yet it demands more.
For weeks I have been living on pure adrenaline every waking moment, because I do not want to give the illness what it wants. I cannot bear the thought of losing more of what little I have left. So I push myself. And I pay the price. And all the while the illness tugs at my consciousness, waiting, knowing it will soon get what it wants because I can’t live on adrenaline forever. I am exhausted, and not just physically. Emotionally. I am tired of playing hide and seek with my ME. But I cannot just give in, because what I give I never get back. I know, I’ve tried the whole “living within your energy limits thing.” It works for some subtypes of ME, but not mine. Mine keeps progressing no matter what.
Soon, I will give in. Soon, there won’t be a choice. Soon, the illness will take another level of freedom from me. And I will adjust, and learn to be okay with what I am allowed. And then I’ll go through the same process again, each time finding a new balance between living and not making my symptoms worse than I can bear. I do not know how many levels are left before this illness takes the final one, but I will fight to get as much living done as possible, until all my living is done. In my mind, it’s the only way I win.