Balancing Life When You Are Ill
Last updated: September 2023
Life with SMA has two halves - the mobility half, and the illness half. Managing the mobility issues and illness of spinal muscular atrophy is something we all focus on a lot.
But there is an element that is perhaps forgotten - balancing regular episodes of illnesses with life!
Respiratory illness impacts me often
I have experienced a lot of respiratory illnesses and other infections which are related to my SMA. So growing up, I adapted to being sick while still getting to do the things I loved.
Long hospital stays as a child
When I was little it was always about play. Finding play I could do in bed was a key to when I was really unwell. But there were times when play was integral to my recovery, too. So I would play with fuzzy felts, make transfer art, or even play board games.
Doing what I could, at my own pace
The second part of the balance when I was little was my education. My parents instilled in me from a young age that I couldn’t do a manual labor-based job - like stacking shelves or working a checkout. And so education was vital for me. Plus, my consultant recognized that kids with SMA are bright, and stimulation through education was good for me.
So, if I was in hospital I would spend 3 hours a day in school, so long as I could sit in my chair. My teacher in the hospital, Anne, was gentle and kind. She understood I would possibly be feeling under the weather and needed to work at my own pace. However, as a patient on the neurology ward, I was generally the only one with an infection. I loved sitting around the table with the other kids and how we supported each other.
Our homework also could be really fun. From talking to the nurses and doctors in French as much as we could to observing lunar eclipses, it was a lot of fun!
One of the other things I loved to do when I was fit enough for it was support others. Helping doctors with their fundraising efforts by going ward to ward collecting sponsors, working with others on their physiotherapy tasks like squeezing doh, or even just helping by asking what people wanted off the dinner trolley. It gave me a small sense of purpose at a time when we all feel like we are in limbo.
Finding that balance now as an adult
As an adult, I still seek to find that balance. Because when we are sick, we can lose so much of who we are. It’s important to find even a little time each day to be you.
I like watching the films I watched as a kid in hospital. Classics like Willow, Jumanji, and Batteries Not Included* are always on top of my watch list when an illness first hits and I’m feeling my worst. And so are animated movies - my comfort blanket on a screen.
From there I try to progress to playing games or doing some adult coloring. They’re good for encouraging deep breathing and keeping me moving at a time when it’s okay to just want to lie down.
I spend a lot of time trying to connect with my friends, hearing their stories from the outside world and just enjoying the fact that nobody is alone in this world.
But perhaps most of all, I enjoy being able to be with my family and animals. Because they support me and help me with one of my favorite activities when I’m sick - listing the things I’m going to do when I’m better! Having plans to look forward to keeps me motivated during my recovery.
Sometimes illness gets the better of you
Of course, I’m not always fit enough to do any of these things. I have to check out and chill out because looking after your body is essential above anything else when you are unwell. It’s so important to listen to your body.
But in the moments when things are a little quieter and you feel a little better, it’s always worth taking a little time for yourself. It is possible to get some balance and perspective.
The balance is tricky, but not impossible. And in my experience, it helps the recovery!
Have you shared your SMA diagnosis story with us yet?