I have been living with my Friedreich’s ataxia diagnosis for a little over seven and a half years. My fatigue is my most rapidly progressing symptom. Unfortunately, this progression is not preventable. Even if I’m consistent with my at-home physical therapy exercises or go to bed a little bit earlier each night, I am always exhausted.
The hardest aspect of my fatigue is that it’s hard for people to understand what my body is experiencing. I always say that if there was one thing I could take away from the disease, it would be my tiredness. I’d even rather have my imbalanced walking! One time, I tried to explain to a co-worker that when I feel so tired, I lose motivation to get out of bed and have to force myself to get ready to leave. Sometimes, I get so fatigued that it makes me physically sick. They answered that they relate to that. I know they are just trying to be nice and understand my situation.
Two weeks ago, Justin and I went to the home department of Macy’s to buy a new bed. The gentleman who helped us had great knowledge of different types of mattresses and what kind would help Justin and me best sleep. We explained to him that we both have rare diseases and how important that makes sleep. The representative could not have been more accommodating and provided us with the best option! We got a bed that was the next size up — a queen!
We have had the larger bed now for about two weeks, and it definitely has helped for the better! I have been sleeping 7-8 hours straight throughout the night — more comfortably and soundly! Before, I only got 3-4 hours of sleep per night. It would be hard to function and push through the day. Thank goodness for lots and lots of coffee! With more sleep, I am in better spirits throughout the workday and I do not feel as fatigued as I did in the past. I have my good days and bad days, but more good days lately!
Apparently, I was long overdue for a bigger bed (I had the full-size since my teenage years). I’m glad I finally listened to my husband and parents. I only wish I did sooner so that I could have gotten better sleep long ago. Getting rest is critical, especially when battling a rare, neuromuscular disorder that reduces levels of the energy protein frataxin. At first, I was hesitant about the cost of buying the mattress. But my family told me to remember to put my health first because it is one of the most important things.
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