People often ask what is the worst part of my disability and I would definitely say that it is the powerless feeling that I sometimes get. I don’t mean in a literal sense (although the lack of energy resulting in me being tired 24/7 is not great) but more the metaphorical way that, at times, I’m not really in control of the Friedreich’s Ataxia and it seems to take over my life. My yearly check-up at the hospital on Friday reminded me that I am a mere onlooker as this condition is allowed to destroy my beautifully toned body.
Since my diagnosis back in 2003, I’ve been told all the problems that could arise in later life as I gradually deteriorate. So far, that’s been fine. The transition from walking to permanently using a wheelchair was slow and therefore gave me time to get my head around the idea. However, potential sight and hearing issues are becoming all too real now. The thought of me needing glasses and a hearing aid was something I envisaged in years to come, not at the grand old age of 19. What’s hitting me the most at the moment is the ferocious speed Ataxia is attacking me, leaving me with no time to reflect on the changes.
Another part of my condition that doctors have always kept an eye on is the heart. It too is a muscle, a very important one that’s always caused me great concern because it is an organ that must work to keep you alive. Luckily, the situation remained stable and everything was fine until this time last year. You may remember that I went into AF (abnormal heart rhythm) and was hospitalised for a week. I have since been on medication and as far as I’m aware, haven’t had any repeat episodes. That was until Friday.
The doctor checked my pulse and told me that I was in AF again but told me not to panic. It could happen all the time without me knowing so it was probably nothing for me to worry about. However, I should check with a Cardiologist who will have expert knowledge. Fortunately, I have an appointment at the Heart Hospital a week tomorrow so can have an ECG then. It again proves that the potential problem surrounding my heart that I have been warned about for years could finally be becoming a reality.
My point is that everything can change in an instant because of FA and it is beyond my power to do anything, which is immensely frustrating and quite scary.
Bye for now!