Sunday 27/9/08

Made the most of the good weather yesterday to see the rock of cashel, and this hidden gem which is called the "swiss cottage" in cahir. I had never done the proper tour of the rock of cashel before, and it certainly was worth it. Have decided to get some much needed culture into my life, rather than aimlessly put in the day, wandering around some shopping centre. Last week it was the turn of the book of kells, trinity and the national history museum. Its terrible feeling like a tourist in your own country,but such is life. All this is weather permitting however, and judging by the grey skies today, and that are forecast to come, it will be back to indoor pursuits soon enough.

Read some good online articles about how more and more wheelchair users, are recognising the need to exercise. I really need to redouble my efforts as regards exercise. Ok, decline with FA is inevitable, and as with a lot of thingsss with me, its one step forward two steps back, but the stronger you are, the easier it is for pratical stuff like transferring etc. Gotta keep up the ever hardening fight against dependancy. Took a bad tumble, getting from my bed to the chair during the week, where I literally did a somersault, and the chair ended up on top of me. The next day, I had upper back pain, but have to be more cautious, as I don't fancy having to cancel my weekend in madrid, because I'm in hospital with a broken bone! Transfers were never a problem until maybe three years ago, when the strength that I had in my legs took a serious nosedive. Starting back swimming today, and a great thing they do is put me in the deep end with woggles (so I'm not stubbing my deformed feet in the shallow end), and just move. Its wonderful, even if it does seem comical to see me impersonate a dog chasing its tail.

There was a major conference about friedreich's in dublin on friday. But much to some people's annoyance I'm sure, I've never been a fan of these talking shops, and for me its consolation enough that we will be the last generation to have FA. Being ill and desperate, is a really bad combination. I believe they have made headway into treating the cardiac effects of FA, but its still a long way off a cure, and even if there were a pill that could stop further decline, unless it could somehow turn back time, and reverse the damage that's already been done, its of little benefit to me. Would cardiac failure not be something to look forward to?