So ‘F’ it is and how apt because tomorrow, 25th September, is Ataxia Awareness Day – so share the heck out of this one folks!
My little rambles are all based around me and my experience with ‘the F Word ‘ which stands for Friedrichs Ataxia.
Anyone who knows me, knows that I come with a wobble and that’s not because I’m constantly under the influence, its unfortunately because I’ve been dealt the ‘Friedrichs Ataxia card’. Since tomorrow is awareness day, I thought I best use my ramble to generate a little awareness.
I was diagnosed in 2015 with this little blighter although my symptoms were peeking through much earlier than that.
Friedrichs Ataxia is a rare and incurable disease.
Did I set out to be rare? Definitely not!
Do I mind that it is incurable? Yes, without a doubt!
Now some might question my next statement especially after reading the words ‘rare’ and ‘incurable’ but over the years, many have deemed my circumstances as being unfortunate or even unlucky. But … do I agree with that? Hands down- most certainly, NO!
I am a firm believer in the old saying, “what is bad, could be worse.” With the ‘F Word’, that certainly rings true for me.
I don’t view myself as either unfortunate or unlucky. Yes, life is tricky and a few obstacles have been hurdled my way but does anyone really sail through life without any hurdles? Mine might be a rare and incurable disease but there are people worse off and I am fully aware of that.
Even in terms of my own experience with Friedrichs, I view myself as lucky because whilst myself and my wobble probably stand out like the proverbial ‘sore thumb’, my symptoms are at present mild in comparison to what they could be.
Now that’s not taking away from how hard it is to manage with limited mobility and from the constant pain I face or the battles I have with fatigue. Or indeed the fact that with the ‘F word’ comes a high risk of cardio issues and a much shorter lifespan. But I’ve seen how bad this thing can get. I’ve been informed by medical professionals of the road that might lie ahead of me and funnily enough even though on one hand that scares me to the bone, it also makes me appreciate how lucky I am.
My Friedrichs symptoms are ‘mildish’ for now so I try hard to thank my lucky stars for that and in lots of ways, I try hard to live for today because none of us really, truly know what tomorrow might bring.
Now that doesn’t mean life is a barrel of roses either. To be honest, most days are about surviving, trying to put the brave hat on and pushing through but isn’t that the same story for many?
Different little things have reminded me recently of how ultimately bleak this disease, Friedrichs Ataxia, can be. The liklihood is that patients will end up with full reliance on a wheelchair, they usually develop issues swallowing and speaking (something which scares me the most) and typically patients will develop heart issues which don’t bode well for a long, healthy lifespan.
Yes, I’m not niave enough to think none of that matters. Of course it does, those things are obviously a huge deal. However, my point is, I’m trying to live life as normally as possible until such times as I need to adapt. I see myself as living with ‘The F Word’ not dying with it and certainly not letting it define me totally.
Upon receiving my diagnosis 8 years ago, someone then asked me when I was giving up work. My reply to that back then, and still is, ‘not until I have to’. (Although being a ‘Sub-Teacher in Northern Ireland at the minute, in the midst of ‘Slow September’, means very little work so if anyone needs an experienced Primary Teacher soon, I’m your woman!!)
Joking aside, what I’m saying is, I very much live under the mantra of, ‘If you don’t use it, you loose it’. So with the ‘F Word’ already loving to steal lots from me, I’m not prepared to hand everything over without a battle.
Incidentally, my local GAA club, Roslea Shamrocks are hosting a massive fundraising event known as the OsKaRs. So when I got the chance to participate as a member of the Roslea Calendar Girls, I jumped at it. (Well, not literally because I can no longer actually jump :), but you know what I mean!!) My thinking is, who knows, my symptoms could worsen, my voice could go down the line so I’m doing my ‘damndest’, as they say around these parts, to make hay when the sun shines!
So that’s it from me and the ‘F Word’ for now…
Hopefully I’ve enlightened you a little more as to what Friedrichs Ataxia is and more importantly, hopefully my little ramble has helped you because let’s face it, most people have their own different ‘F Words’ to deal with.
Thanks to everyone for your continued support folks, it really does help me to keep the bright side out as they say.
Please keep liking and sharing as always, particularly this one for International Awareness Day tomorrow, 25th September 2023.
Michelle x
F is for... 