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Imagining a Perfect, 'Normal' Day Without My Illness

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It’s almost 2 a.m., and I haven’t slept. I could tell early on it was going to be a rough night. I felt the tension start to creep up after dinner, and the pain start to increase as I spent mindless hours watching TV.

My flare alarm was starting to wail, and I braced myself for a long night. Nothing about tonight is different from any of my other past flare nights, but tonight made me strangely introspective.

I got up in an attempt to ease my stiff muscles about an hour ago, and a thought struck me as I was shuffling down the hall.

I would sell my soul just to be “normal” again for one day.

Dramatic, sure, but at that moment, definitely not untrue. Battles with painsomnia tend to produce thoughts that border on hysteria, and I’m surprised tonight wasn’t worse.

As I settled back in and did my best to get comfortable, I started to picture this idyllic “normal” day. I quickly realized I couldn’t. I know that if I woke up tomorrow and I wasn’t nauseous or dizzy and nothing hurt, I’d think I was dead. This picturesque dream of a day I would have given anything for was nothing more than a hazy montage of stereotypical bucket list items.

Initially, I thought if I had a miraculous shot at a symptom free day, I’d run a marathon or climb a mountain, maybe even go to the airport and buy a ticket to fly higher than my pain levels have ever been.

Then I was struck by the fatal flaw in my perfect day. The day after. Even if my temporary illness suspension allowed me to run a marathon, climb anything or fly anywhere, I’d still have to deal with the backlash. An undoubtedly incredible day would cause me undoubtedly incredible pain.

So, like I’ve done what feels like a million times, I changed my expectations and shifted my perspective.

My perfect day isn’t about marathons, mountains and planes. Maybe it never was.

During my theoretical dream day, I don’t want the grainy images on a healthy person’s bucket list, I want the easy “normal” day they take for granted.

I would wake up feeling like I had actually slept, and be able to get out of bed immediately, without a pep talk and half an hour for my muscles to loosen.

I’d actually want to eat, and be able to eat whatever I want. I’d go the entire day without taking a pill. I’d take a nap because I wanted to, not because I physically couldn’t go on if I didn’t. I wouldn’t have to take a mental inventory of my energy level. There wouldn’t be a shred of fog in my brain. Nothing would hurt.

Everything would be perfect, because I wouldn’t be sick.

But… there’s always a but. Even if I wasn’t sick, life wouldn’t be perfect. I’d still forget my keys or mix up files at work, or completely bomb an assignment at school.

The point is, life isn’t perfect, even during imaginary ideal days.

Just like I didn’t need marathons and mountains, no one, sick, healthy or otherwise, needs perfection. We need patience. I’ll never forget what my rheumatologist said the first time I saw her: “You need to be patient with yourself.”

We could all wax poetic about our perfect days, and about what we’d do if we were healthy again. The truth is, most of us are never going to get that chance, and all we can do is try to find the perfect and the healthy in the days we have and the people we are. I don’t need a perfect day, I need the patience to thrive in an imperfect situation. It’s something I am working on, and it is never easy, especially on nights like these where pain is much closer than sleep. But every one of these nights strengthens my resolve and brings me closer to replacing a need for perfection with an abundance of patience.

Earlier tonight, when I could feel a flare coming on, I was fiercely dreading it. Now, when all is quiet and most of this time zone is asleep, I’m doing my best to be grateful for my pain because without it I wouldn’t be up to enjoy the peace.

I’m grateful for my pain right now, because this time of reflecting and soul-searching (almost soul-selling) has done me more good than anything has in a long time.

There are tiny glimpses of good in everything, and those add up to be about as perfect as we’re going to get.

Getty image via Rawpixel

Originally published: February 11, 2019
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