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Ataxia Support Network

How I Eliminated Fatigue, Part 1: A Bed Fit for a Queen


#1

Recently, I implemented two major life changes for the elimination of my fatigue associated with Friedreich’s ataxia. Over the next two weeks, I will share these two strategies, how I came up with them, and how they have benefited me.

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.

The main reason for my exhaustion and lack of sleep is that my legs become numb and restless to the point where I can’t get comfortable and wind down to fall asleep. Before Justin and I got married and he moved into my apartment, I slept with my legs and body across the entire full-size bed to stretch them out and get comfortable. Once he moved in, I could not sleep that way anymore.

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.

Next week, read about the second fatigue elimination strategy I’ve incorporated into my life.

shared via https://friedreichsataxianews.com/2018/12/07/friedreichs-ataxia-eliminated-fatigue-bed/?fbclid=IwAR0fqsenygRTYSXcOnSq040umaRkl0Xzljo3UaULRyEHnFsIR3uEDxg5k_U


#2

:slightly_smiling_face: Who would have thought such a simple remedy could make so much difference. I don’t have FA, but Fatigue is something many of us are familiar with, and I for one know how much difference a good night’s sleep can make.
After far too long a time suffering sleepless nights and getting agitated because of my Husband’s ‘heavyduty snoring’, I upped sticks and moved into another room. We were sleeping in a Queen size bed, but size makes no difference when it comes to snoring :grimacing:
It was absolute bliss having my own quiet space to relax in :blush: Plus, my Husband was getting a full night’s sleep, I couldn’t poke him to shut him up :joy: xB


#3

Yes. I remember being reffered to a sleep clinic, and it was mentioned about the importance of undisturbed quality sleep for persons with a Neurological condition as it will make a massive impact on daily life.

“Turning off” at the end of the day, can be hard, and much advice and remedies are at hand.


#4

:thinking: There are annoying symptoms that can interfere with sleep, restless legs come to mind, as well as the overwhelming urge to visit the toilet several times a night. Many people contend with spasms, and chronic pain… Sometimes there isn’t an easy answer straight away, various options need to be tried, and as always, recommendations are always welcome :slightly_smiling_face: xB


#5

I have found that my fatigue come from anti-anxiety drugs. My body is very sensitive to psychiatric drugs and has been ever since I have had Sporadic Ataxia for over 20 years. Think am wearing out