When Something Feels Off, You Should Probably Pay Attention
You know when something is wrong, but you can’t put your finger on what, exactly, that is?
The past week has been an exercise in expecting the unexpected. I woke up Wednesday morning to a weeks-early period. “Fine,” I thought. “I’m flexible. I can adapt. This is no big deal.” But the symptoms kept worsening. I wasn’t just hormonal; I was exhausted in a way that pointed to something other than an unfortunately timed menstrual cycle.
I spent the next few days in a fugue. I did nothing but play “The Sims 4” and think about the season finale of “The Lord of the Rings: The Rings of Power.” I assumed my mood would stabilize with time, as it does every month. But something still felt off.
I know myself pretty well. I was good at therapizing myself before I went to school for it. But I couldn’t seem to untangle the snarl of my thoughts. I couldn’t identify the source of the problem, the nebulous thing that was rubbing me raw.
And then I realized.
For those who don’t know, I live with my parents, who are my primary caregivers. This isn’t ideal by any means — I would love to live on my own, preferably downtown with access to a bookstore. But it’s unfortunately my reality. Independence is a tricky beast, especially when it comes to life with SMA.
For the most part, I’m satisfied with my situation. Are there things I would change? Absolutely! Would I like more independence? Without a doubt! But living with a chronic disease like SMA means choosing your battles. I do what I can to improve my day-to-day, practicing gratitude and contentment all the while.
But I’m still human. As much as I’d like to be perfectly grateful all the time, I fall prey to dissatisfaction, especially when it comes to my living situation.
The more I thought about it, the better I understood my frustration. I hadn’t left the house in over a week. I’d been neglecting the cornerstones of my self-care regimen — tidying the house, indulging in my unnecessarily elaborate skin care routine — in favor of more low-value activities, like playing video games.
I could’ve easily addressed those problems by scheduling an outing or asking my parents to help me organize my desk. But I knew there was more going on. Why hadn’t I left the house? Why had I been neglecting the activities that keep my head above water?
My parents are the best caregivers I could ask for. But they’re also my only caregivers, as my part-time assistant, Danielle, is dealing with perpetually sick kids. If I want to do something fun, like work at a coffee shop for the afternoon, I have to coordinate with my increasingly busy parents. I know they would accommodate me if asked, but I try not to take up too much of their time.
This is a problem I’ve encountered multiple times over the years. COVID-19 has made finding a caregiver next to impossible. When I look for someone, I’m told I don’t pay enough. (Which, for the record, is a valid criticism, and one of many reasons why we need to fundamentally alter our approach to home healthcare.) After a couple weeks of searching, I give up, resigned to accepting my situation.
I’m incredibly privileged, from my financially stable parents to the support I receive through government programs. I have it good, and I’m grateful. But the fact remains that relying on my parents for everything from medical appointments to leisure activities is taking a toll on my mental health. I’m stuck inside my house for weeks on end, unable to participate in the things that bring me joy.
After days of reflection, I arrived at the heart of the issue. I wasn’t happy, and something needed to change.
I spoke to my parents, and together, we agreed to prioritize restructuring my care team. We’re not sure what that will look like; we’re not even sure if we’ll find someone. But for the first time in over a week, I feel like I’m living again.
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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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