Temperature regulation is challenging, but vital with SMA
I struggle with both staying warm and staying cool
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It’s been almost a year since I moved into my new house, and I’m still working to get everything the way I want and need it.
I’ve always loved warm temperatures. As long as I stay hydrated, the warmth has a special way of soothing my soul. This is because, as someone with SMA, I don’t move around as much as the average person, so I get cold easily.
By taking plenty of precautions, including bundling up, I’ve been able to go to school in all kinds of weather. Cold temperatures make me appreciate warmth even more.
The challenge of staying cool
Recently, though, I’ve been getting too warm at night, which disturbs my sleep. I’ve been asking my night nurses more often to take both my blanket and bed sheet off me.
My nurses will tell you that my room can get hot at night, despite the cold winter temperatures outside. Even still, asking to have both my blanket and sheet off at night is a big change for me.
My heat intolerance is also causing me to toss and turn at night. While my night nurses usually turn me from side to side every two to three hours, I’ve been asking them to do so much more frequently.
These problems are the result of my air conditioner malfunctioning. The air conditioning upstairs, where my family lives, is working, but the unit on my level hasn’t been working quite right since I moved in.
The company has sent out people to repair the unit more than 10 times in the past year. All solutions worked only temporarily. My air conditioner still isn’t regulating the temperature effectively. It gets very hot in my room at night, but at other times, it gets very cold.
Soon, the company will replace the unit altogether. I’m eager for this to happen. For the past few weeks, I’ve had a portable fan blowing next to me at various times throughout the day and night.
Although the contractors faced some complications with the air conditioning during the initial renovations to my level of the house, I don’t think that has anything to do with the current issues. I believe it’s just a bad unit. I have faith that my temperature problems will be solved once it is replaced.
The challenge of staying warm
Being too hot or too cold, even for just a short period of time, can be life-threatening for anyone, health problems or not. But it’s especially bad for my health due to my SMA.
As I write this, most of the country has just been hit by a major winter storm. I have two radiators and an electric fireplace to heat my part of the home. The tricky part was making sure I had power throughout the storm.
My mom searched store after store for a portable generator, but they were sold out. We had a generator in our old home, but we couldn’t bring it with us because it was permanently installed.
She eventually found a portable one, but thankfully, we never lost power. We don’t regret buying it, though; having it on hand gave us comfort.
It also gives me comfort to know that my air conditioning unit will be replaced soon, hopefully with no more problems. I’m soaring into that day with excitement!
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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