Thursday, January 5, 2017

Illness Fatigue In Our Busy-Centered World

When you battle chronic illness, you most likely battle exhaustion and fatigue. Often. When you battle chronic fatigue syndrome (now known as ME/CFS) it's guaranteed that you do. Because, you know, it has fatigue in the name. And when you pile on depression, anxiety, and mood cycling (the ups and downs exhaust like you wouldn't believe) it basically feels like the energy has physically been syphoned out of your body - which I'm sure my fellow spoonies experience with their own illnesses.  Of course, this in and of itself is an issue, since it can make every day tasks like working, walking the dog, cooking dinner, and cleaning the house feel like you're going through them with a body full of lead.  But wait, there's more.

Our society loves to be busy. We don't say that of course - in fact, we mask it under complaints of how busy we are - but we do. It's become an automatic response for so many. "How are you doing?" And the answer is always  "Busy!" Often, I don't think they know what they're busy with. It's replaced "Good, how are you" as the human auto-reply. People wear their hectic schedules, lack of sleep, lack of meals like a badge of honor. "I haven't slept more than two hours, I missed breakfast and lunch every day this week, and I haven't had time to pee all day!" Like giving yourself a bladder infection is something to be proud of. But for some reason, this makes everyone "ooo" and "ahhh" time and again.

So when you have an illness that makes you feel like you have skipped two meals each day and haven't slept more than two hours a night, even when you have, it is tough to "keep up". Here's everyone being too busy to pee, and here's me trying to muster up the energy to get off the couch and walk the 15 feet to the bathroom to pee. And it makes me feel like shit (pun totally intended). Because there's that tiny part of me that for some ridiculous reason wants to be too busy to pee. Because I want to have the energy to be that busy. I want to feel like I have the strength to make my mark on the world. I want to not be so fatigued that even when I'm most inspired I can't will myself to have the energy.  I want to stop giving up when I hit even a tiny bump because I feel physically and mentally too drained to push through it.

Instead, I get home from my part time job at 1:30, 2:00, 2:30PM, and I sit on the couch or at the desk trying earnestly to find the energy to do more. I want so badly to have a burst of mental and physical awake-ness. I feel like, "If I could just do this enough, push myself through it, I could get the ball rolling on this project, and maybe over time, I could grow it and it would become successful. If I could just force myself, push myself harder, I could fulfill my dreams." But I sit there with my body and brain feeling like they're turning to jello and finally say, "I can't.". Despite the fact that I know it's illness, I still hate it. I think back to my early 20s, when I worked full time and got my Master's at night and did a correspondence program in my "free time".  I want so badly to have that version of me back, or at least the energy that this version of me had (I rather like the wisdom and decision making of the 30-something me better). And I wonder how I managed it - I wasn't diagnosed then, but I still battled my illnesses, I just didn't realize all of them. It makes me question myself. Why can't I do it now?  Even though I know the answer, sometimes I often don't want to accept it. Especially when I look at others who are also ill (often more ill than myself), but who have managed to make an impact, to grow their projects and their advocacy efforts, to get to where I want to be. And I start blaming myself - if they can do it, why can't I? There must be something wrong with me. I must not be trying hard enough, or maybe just not capable enough. But especially during a time of depression, it's easy to blame myself, and to allow that to drag me down even further.

And when you add this into a society that shames people who aren't running around like a chicken with their head cut off, calling them lazy and complaining how they aren't pulling their weight, so to speak, it makes it even worse. Because now society is trying to make me feel guilty for being ill, for wanting so badly to do the things I used to but no longer am able. And all of this combined is so frustrating I want to scream. But often I don't even have the energy for that. 

No comments:

Post a Comment