I can still vividly remember sitting down on the couch with my parents either side of me when I was 13 years old being told I had Friedreich’s ataxia. It’s weird how I can remember the exact design details of the couch we were sitting on yet not a lot of what my parents actually said after they told me I had Friedreich’s ataxia. I remember walking up the stairs to my bedroom that night, having the usual trouble getting up the stairs and hugging the banister thinking “okay, I can handle this it’s not so bad I can still manage to get around”. I’m 34 years old now and I would do anything to get the unsteady body of my 13-year-old-self back.
When I got into my 20s I got to know people in their 30s and 40s who were full-time manual wheelchair users as a result of accidents or medical conditions, and again I remember thinking “okay, I can live with using a wheelchair for the rest of my life, it’s not so bad at least I can still get around by pushing myself”. I’m 34 years old now and I would do anything to get that wheelchair pushing body of my 20 year old self back.
Since entering my 30s simple everyday tasks such as brushing my teeth have become more difficult and the constant exhausting fatigue is getting worse, I can’t help wondering what will my body be like in my 40s and 50s? I feel like bit by bit my Friedreich’s is attacking my body, I had to start using a wheelchair in my late teens, I had to do intensive physio and gym work in my 20s in order to keep using my manual wheelchair, now selective hearing, constant fatigue, electric wheelchairs and accessible vehicles are a reality in my 30s as my muscles continue to degenerate, what’s left to attack? My internal organs?
I am not writing any of this to inspire anyone’s sympathy, I simply want people to understand what it is like to live with, a lifelong degenerative disability, Friedreich’s ataxia.
I believe I also have a different outlook on life because of my Friedreich’s, I don’t do regrets because if I don’t do it now I don’t know if I will be physically capable of doing it again so if I have an opportunity to try something new “why not?” I understand the importance of family, friends, laughing, living in the moment, being happy, being able to laugh off a ridiculous situation, to be able to take the good with the bad, of feeling loved and being able to love. I try not to stress over the little things, sometimes very unsuccessfully something my husband will no doubt testify to! Because I have plenty of stress about the big things I need in my life, such as being granted funding for aids and appliances like manual wheelchairs, electric wheelchairs, hoists, electric beds – you know the luxuries somebody with a lifelong disability becomes accustomed to because that’s what they are not essential items!!
There is of course plenty of bad and it would be very easy to just give up and completely give in to the Friedreich’s, but I don’t want some of my last thoughts to be “I wish I’d done…”, I believe “this is the only life you will get so make the most of it” 🙂
I am going to be visiting Singapore, Malaysia, Thailand and Perth, Australia next year so any help or advice on accommodation/things to do/how to manage the weather/climate would be much appreciated. Thanks 🙂
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