I’ve spent the past two days on the couch. Not by choice, but because of some testing one of my doctors ordered a few months back and I’ve had to come off my medication for it (which I’ve been absolutely dreading, hence the procrastination). Coming off medication is as much of a mental challenge as it is a physical struggle, and it’s definitely been a cruel blow to the bubble of peace my meds have graciously provided for me over the recent months. If anything, this testing has shown me the amount of freedom my meds give me, and in my hazy, symptomatic state, I’m convinced I will never take them for granted again.
I figured what better time to finally complete this testing than during a pandemic with loads to watch on my Netflix cue, but in all transparency, there’s never a good time to voluntarily subject to feeling unwell. I’ve done a lot of medical testing these past few years. Labs, scans, EEGs, autonomic functionality, the list goes on. I’ve spent a lot of this time, too much of this time really, feeling everything far from well, so I do everything in my power to prevent flares and symptoms, and more testing than what’s absolutely necessary. But sometimes these situations are unavoidable. Sometimes there’s testing that really must be done, so my only option is to hold on tight and brave the looming, incoming waves. Like I mentioned above, so much of chronic illness is a mental challenge as much as it is a physical struggle. POTS has certainly been the mental battle of a lifetime.
On a weirder note, my mom and dad drove downtown yesterday to pick up another sterile lab jug for me to urinate in. That’s true love (and also really gross, sorry!) and I don’t know how I’d survive POTS without them, frankly. Their love is a source of great strength for me, a deep reservoir I tap into often.
Coming off my meds for testing has been humbling to say the least, and I’ve gained valuble perspective on how much progress I’ve made in recent months. Last week, I went on a short walk in 90 degree Texas heat and was averaging around 4000 steps a day. I’ve been able to go swimming, walk through the grocery store (masked, of course), and I’ve begun an online class at a local community college, which has been enjoyable to give energy to. My medication regimen and physical therapy program are helping me claim my life back, but it’s a slow, lengthy marathon that happens gradually overtime. This type of progress can be harder to notice on a typical, day-to-day basis, so sometimes situations that put a jolt to my system (like this testing and weekend on the couch) remind me just how much better I am feeling these days. What a major victory!
But yesterday I didn’t feel quite so victorious. Yesterday it was a struggle just to walk to the bathroom. This can be the reality of chronic illness, the way it flows in and out of your life like an unwanted guest, ignoring rent payments and courteous roommate formality. It often loiters in the background before jumping out in fullforce, seizing days at a time and stealing pieces of you in its brisk, crippling stride. It’s a cruel, constant tug-of-war battle that I never agreed to play, but here I am holding on, grasping the weathered rope until my boney knuckles turn white.
I laid on this couch all day as people moved around me, going places, doing things. They had an actual day. They were free to roam wherever they chose, while I stayed still, cemented to this couch. I’ve gotten so used to this stillness, so used to the sitting out, that this worn out couch and I are almost buddies, a partnered, package deal. I kept wondering when I bumped paths with the world-renowned Cleopatra, wondering what kind of curse I encountered that damned me to this time of statue. Somewhere deep within me, I could hear my spirit whimper; held hostage within this body, it was chained entirely against my will.
That used to be my every day life for months and what a sad thought that is. Yesterday, I passed through that flare as a visitor, knowing no matter how bad it may get, I could resume my medications tomorrow. But that did little to calm the rattling of my bones, scarred and shaken from the days they have lived through. I truly don’t know how I got through that time, no matter how much I reflect or ponder. During those early, pre-diagnosis days, I don’t quite know what pulled me through the next moment, to the next morning, to the next month. Maybe it was my parents or that tiny glimmer of hope, but more often than not, my “strength” people commend me about seemed gone in all capacity. At the lowest points, on the darkest days, strength was nowhere to be found. Strength, I have learned, is more of a byproduct from pain, a callous on the soul that’s located deep within.
Even there, in that flare, there was progress. Immense progress. There was fear but there was knowledge, a trust and comfort in what I’ve learned about my body, about this disease, about how to get through hard days like those. It’s Monday, I am medicated, and I am already feeling better. But this morning I woke to a sweet surprise before I even swallowed my pills. The worst was over, the day was new, and I had survived the gnarly waves.