Tuesday, August 12, 2014

Summer Summertime

I've been neglecting the blog so much. I have so many things to keep up in the air and one of them had to drop, which was the blog.
I was asked a few times about my diet and PWCF say it's impossible to keep weight on and do aerobic exercise. No it's not. I did it, and I put on weight. I know some people suffer more with their stomach, meaning they won't be able to digest as much. Well that's the excuse I get anyway. When I was diagnosed, my first symptoms was that I wouldn't keep food in. It's was in my mouth and within minutes it was out the other end. I'm giving you this story because I suffer with my digestion badly. But I can still maintain weight.
I am in the process of explaining how I do this, and nutrition in terms of CF. It is taking me a while to create it as I don't want to leave out anything, and hope that I'm explaining everything that I do.

I went to my first physio appointment in just over 10 years. I was asked
1) did Prof tell me to come?
2) did my PFTs drop, and I got a scare?
No to both questions. I wanted to go to see if there are any new tricks of the trade, and that I can learn the new techniques while being healthy and not have to learn them for if I get sick. So, in short. No. There was nothing new. Imagine that. 10 years later and nothing new. So we still are heavily leaning on drugs. I felt that I was being questioned as to why I don't do stuff instead of being asked what do I do so I don't need to come in for physio or being in hospital. Once again, I've been told numerous times, running isn't enough. It's kept me out of hospital and IV free for 28 years so I must be doing something that's regarded as enough.
I feel frustrated at the whole CF system. Even with the PFTs. Blowing into a tube and record a 1 second max breath. When will we ever need that? Why isn't it recorded exercising. A Vo2 Max test would be one way in which it is more applicable to everyday life, or at least fit people with CF.  I have never done an exercise test in terms of CF? Exercise is so important for everyone, never mind with people who have CF. Why isn't there a couch to 5k for CF. Why aren't the physios acting as personal coaches to get them to run or cycle longer. Short term aims for long term gains. Things need to be revisited and maybe changed around.

Anyway, I'm off to Belgium to work on some athletes from America and New Zealand for physical therapy. I'll end up training with them while I'm out there. It's a win win!!


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