Health

I’m Leaning To Live With My Chronic Illness By Grounding Myself In The Present

I am always thinking about the future. Who isn’t, right? What’s the next opportunity? Challenge? Time to look forward to? Chances are, if you cracked open my brain at any given moment, those are the topics you’d find it firing on. There’s something devilishly comforting about always thinking ahead. It’s easier than living in the now.

About two months ago, I realized I was having a flare of my latent autoimmune disease, ulcerative colitis. Bathroom trips had become urgent, my gut and stomach generally felt off, and I could just tell my body was out of harmony. I called my doctor and asked to be put on meds, blissfully thinking I was in for a week or two of discomfort and I’d be well on my way. I even recall feeling inconvenienced by the blip on the radar—like, who is this disease to trouble me for a few days? Who is this disease to cost me a copay?

The meds didn’t help. I got worse. I found myself declining from a few uncomfortable points in the day to hourly stomach cramps and bathroom trips around the clock. I immediately looked to the low hanging fruits in my life: Coffee? Scratch that. Alcohol? Gone. Greasy foods? Out. I thought I could manage my way out of it. I thought it was my fault for having those vices in my life in the first place. I was troubled, but also optimistic. I know my body and I am in control.

Removing triggers didn’t help. I got worse. My doctor laid out my options for me—a series of drugs with unfortunate side effects and varying likelihoods of solving the problem. This is when everything started to get and feel real. I stewed on my options for a couple of weeks while my symptoms continued to worsen. I became obsessed with food—what would I eat and when? I started cancelling plans and commitments. I was grounded.

Obsessing over food and cancelling plans didn’t help. I got worse. I moved forward with the medications, taking steroids to reduce the inflammation in my body and the process of approval for the immunosuppressant drug Humira. The first day of the steroids, I sobbed in my office, my head aching and body coursing with adrenaline. My spirit was cracked and was starting to break.

Eventually, my body mellowed to the intense effects of the medications and I felt genuine relief. I was even able to participate in a long anticipated backpacking trip where I found myself feeling strong and leading the pack, the steroids surely helping me to push through the fatigue of upward miles. Again, I was optimistic and in control.

Then things fell apart. In the weeks following the backpacking trip, I tapered my steroid dose per my prescription and my symptoms came back fast and furious. Weight loss that started out negligible accelerated to a fifth of my starting mass. I was dehydrated and exhausted, waking up every 45 minutes in the night. I lost my cool. I thought I’d be better, but there I was, at my lowest and sickest point. I was angry. I was bitter. I was afraid.

This is not a passing inconvenience; this is not a copay. This is chronic illness. I understand now what it’s like to live a day giving all you have and it only being 40%. I understand the uncertainty of not being able to make a plan for a week or month out because you don’t know how you’ll feel. I understand not wanting to spend money because a major hospital bill could be just around the corner. I understand wanting support so badly from those around you but also hating the constant inquiries on how you’re feeling.

I’m doing okay. I’m doing “not bad.” I’m “hanging in there.” I don’t know what else to say.

I’m continuing my treatments every other week and clinging nervously to my high dose of steroids. I am desperate to get off of them and their debilitating brain fog, but also scared of what’s stewing beneath their calming effects. I’ve yet to sleep more than two hours in the night since this all ramped up, but am finding ways to rest at other times and stay hydrated.

If you cracked open my brain today, I’m not thinking about the future. I’m grounded in the present. And maybe that’s okay. TC mark

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