We all know that I hate getting up early. Just like I hate adjusting to a new wheelchair — I’ll do it if I have to, but that doesn’t mean I won’t complain about it. So you can imagine my dismay when my caregiver sent me the most dreaded of texts.
“It’s an all-day appointment.”
All-day appointments are the bane of my existence. And I’m lucky that I live relatively close to Minneapolis-St. Paul. When it comes to all-day specialty appointments, many folks have to rent a hotel and schedule as many appointments as they can into a couple of days. In contrast, all I have to do is get up early.
I’m a baby. We all know this. But I’ve written previously about early starts and how inaccessible they are. It’s not just that I’m getting up before the sun — it’s the fatigue that lasts for hours, bleeding into all areas of my life, until I’m too exhausted to do anything but sleep. Early start times incapacitate me for days. And I haven’t even touched on the emotional stress of medical appointments, juggling doctors and nurses, and people touching me all the time and talking about my body like they know it better than me, and all I need to do is submit to their wisdom.
So, I wasn’t looking forward to the all-day seating appointment. One might say I was dreading it — dragging myself out of bed at 6 a.m., resigning myself to hours of measuring and tweaking and “Don’t worry, you’ll get used to it.” But I’m in desperate need of a new chair, and I rarely get out of the house these days. I tried to see it as an adventure.
The thing about seating appointments is that they require a heck of a lot of patience. So much of it is sitting and waiting. I told my dad we were going to take advantage of it. “We’ll bring the ‘Lost’ DVDs. Oh, and we can order DoorDash! No better time to treat ourselves.”
I was still dreading it. But my future was set in stone, which is to say there was no point in trying to avoid what was inevitable.
Then I woke up with a head cold.
At first, I thought it was a side effect of my weekly dose of Sudafed. My ears were clogged and in a nebulous state of needing to pop. But then my mom developed similar symptoms — congestion, sinus pressure, a general sense of bleh. She wasn’t surprised, given the ridiculous weather in the U.S. right now. We both have allergies and are particularly sensitive to atmospheric changes.
I didn’t have a fever or any symptoms indicative of COVID-19, so I assumed it would pass in a day or so. But it didn’t. I woke up the day before the Appointment From Hell feeling, rather ironically, like hell. I could hear out of my right ear, but the world was muffled, woozy, and distorted, like a fun house mirror. My sinuses were worse. I was tired and swamped in ickiness.
I spent the day beating myself up for not doing anything productive and wondering if I should cancel my appointment. I was 99% sure it wasn’t COVID-19, but the thought of getting up at 6 a.m. only to be turned away at the doors was more than a little unappealing. And I know myself well enough to recognize when I need to rest.
I wasn’t sick. Yet. But that would change, and quickly, if I didn’t play it safe. Getting up at 6 a.m. for an all-day appointment wouldn’t just exhaust me — it would compromise my immune system and pave the way for something really bad, like pneumonia. So I told my dad with all the regret I could muster — which wasn’t much — that we should probably cancel.
He wasn’t terribly disappointed.
The day of the Appointment From Hell, I slept in till 11 a.m. I played video games and dreamed about my future as a published author. When Dad called to reschedule the appointment, I told him to ask if we could split the all-day seating appointment into two shorter sessions. Unconventional, I know, but I was high on playing hooky. Maybe the appointment gods would smile on me.
Later that afternoon, I got a call from the clinic saying they could, in fact, split the appointment, and to please reschedule as soon as possible.
High on victory, I yelled, “Dad! We don’t have to get up early!”
Thus, a head cold saved my life, reminding me that sometimes, all we have to do is ask.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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