Sunday, October 9, 2011

Holly Rosanna Vlog


I found this vlog ( video blog). I know many people with CF seem to search the Internet endlessly for other people with CF. I just came across this from twitter. I don't actually look up things on CF because it's depressing. I'm not trying to hide from it. I have CF, that's never going to change. I focus on what I have and not what other strains or infections other CF'ers have or get. What's the point.
When I first got the Internet many years ago I looked up "CF lungs" on google images. What came up was these horrible looking black lungs or x rays with just clouds of white. Eh no thanks.
You might also think, if I don't go looking for things to do with CF, then why am I doing a blog about CF. I will pay you €10 if you can find another blog apart from mine that is a positive story. It's doom and gloom. I hardly even read The Spectrum. Although, they do sometimes have some positive stories in it but it's still kind of "I'm healthy". But your not really. You look sick, your probably going to go back into hospital in a few weeks. Your not healthy. Your ok for a CF, but not for an everyday person. Your going to now think, we aren't normal. My comeback to that is....I do 100 miles a week running, never been in hospital ( apart from 2 days for constipation & one for some random fit I had while I was out shopping). I'm not only a healthy CF, or a normal person. I'm fit. You don't see many people running 50 miles a week let alone 100, or sometimes 115 miles a week. I'm sorry if this offends anyone reading this, but it's how it is. Stop looking at yourself as having CF and getting infections is normal. It's not. Clear lungs, clear sputum.
CFs seem to have this idea that we can grow out of CF and for a while, I wondered if I did still have it, until I took a few months off running. I soon found out I had it. We seem to think we will be ok if we skip a neb or not take our tablets. Rubbish. Ah it's my Birthday, I won't take my nebs today. Your birthday should be a reminder that you have survived another year with CF. Or ah sure it's Christmas. Il be ok. No you won't. For parents of CF children reading this....if your child doesn't like getting therapy done or taking nebs, do you think they will like IVs, or lying in a hospital bed coughing constantly. Make them do it. CF is the new religion. Even if you don't want to give them therapy. Until they are a responsible age to start to look after their own therapy, then it is your responsibility to do it for them.. Every morning, and every night. Even when they are in their 20s, you still have to be on their case. CF doesn't have a cure, but it's beatable, and I'm beating it.

Every CF is born with clear lungs, it's your choice to keep it like that

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