The aftermath nobody sees is what crushes me. My close friends can see the signs and tell I’m fading, but for the most part, for a few hours at a time, I can fool strangers. Sometimes I can fool friends and family, too. Although, the word “fool” makes it sound like deception; it’s not that at all. Sometimes, I just want to forget about my chronic illness. I want to put it on the back burner and live my life a little.
I am thankful that I can power through with these spurts of energy; I know I’m blessed that what I can do is even possible. At the same time, I almost wish I couldn’t (weird, I know), because I ignore my body far too often. I power through to the point where my body shuts down, and I have to close my eyes because even visual stimuli hurts my pounding head. I just can’t seem to allow myself to not be able to do everything most people my age can. I wrestle with that almost everyday.
I want to experience all the color and laughter and vibrancy life has to offer.
But at what cost?
The next few days, sometimes even weeks after, I am severely limited. My body goes into a full-on flare. The pain increases in severity. My journal entries in the diary I keep become less and less coherent. I make dumb typos, odd misspellings, and write jokes that aren’t funny. If that was all, it wouldn’t be so bad. But the spike in pain wreaks havoc on me. My mind tells me that I will never get better. That no one will ever believe me. That doctors will never agree on a diagnosis. That I will never find relief. That living is pointless.
They’re lies, yes…
But very convincing ones in my vulnerable state.
When I find myself in this dark place, I think back to the good times that has caused my body to flare. I think of my cheeks hurting from smiling, my gut aching with laughter, the spontaneous get-togethers with my friends, and all the memories that I will have forever.
And while I know that I need to regulate how and when I push through better, I still can’t help but treasure these times. Despite the pain. Despite the pure exhaustion that follows. The onslaught of symptoms. The nights spent crying that friends and family don’t see. I keep the aftermath of big events hidden in the privacy of my home.
What I’ve discovered so far is that no doctor, no therapist, or other well-meaning person can tell you how much you should or shouldn’t do. Your body will tell you. You just have to learn to listen. That’s exactly what I’m trying to learn to do. No one knows your body better than you. People who know you well can offer helpful suggestions and insight, but ultimately it’s up to us to set the boundaries with ourselves and others.
Letting go of the “should be’s” are my first step in this process. I too often tell myself I “should be” able to do this or that and accuse myself of not trying hard enough when I fail. How mean! I would never have such unrealistic expectations of others; there’s no reason to treat myself so terribly. That goes for you, too.
Even through the pain, I’m grateful.
I have accomplished so much.
The good memories are mine to keep.
I’m learning to listen to my body and to be more careful about over-doing it. However, I wouldn’t trade the good times I’ve had for anything. I think my next challenge is to find the balance between the two. I’m ready to take it on.