I am totally aware that Friedreich’s Ataxia can really get you down. I am also very aware that late-onset is very different from when you develop symptoms at a young age. The physical effects are less severe, so I am very conscious of this.
But I do believe that, at least for me, trying to keep as positive as I can (not all the time!) is important. I always remember my consultant saying, “Focus on what you CAN do and what makes you happy.” While I understand that it can be very frustrating, and at times I do get frustrated and mourn what I used to be able to do, I try to take pleasure in the small things in life: a cup of tea while watching my favourite programme, or listening to music.
When I was diagnosed, I was referred to a neuropsychologist. She told me that while my physical symptoms have definitely worsened, my walking difficulties fluctuate greatly because of psychology. For example, I walk terribly or even fall over when I feel people are watching and I start to overthink. Overthinking is bad! So I try to stay as relaxed as I can, though that is sometimes easier said than done when you feel you’re about to fall.
I really believe in the power of the mind. A wee story: to be honest, I was never keen on tattoos. But my favourite band is Nothing but Thieves, and the lyrics to one of their songs are all about the power of the mind: “If you don’t believe, it can’t hurt you.” I got the lyrics and the symbol of the song tattooed on my back.
I know there are physical changes I can’t do anything about, and although people can’t see my tattoo, I take strength from just knowing it is there.
