This has kinda been sparked by a topic on the Trust forum, but it's also something that's been on my mind more and more as I get to know more people with CF.
I have always felt guilty for managing to stay "well". Always. It's not something that has just come all of a sudden. Ever since my first friend at paediatrics died from CF I have felt that guilt and it's still going strong.
I feel guilty for the people I know who are waiting for transplants, or who can't have a transplant and are waiting for the inevitable. It makes me extremely sad to see 1 of my good friends so poorly that he has been in hospital since beginning of December and doesn't have a clue when, or if, he'll get home.
I feel guilty for being "well". Something has got to be wrong with that, surely? Someone said to me in the past that I don't appreciate what health I have. I do appreciate that I am well, when compared to a lot of people, but I am more than aware there are people more well than me. I absolutely do appreciate where I am with my health and in my life, I don't want to feel myself decline any more than anybody else, but the guilt of being where I am is very real and I often wish I could take the place of people who aren't as fortunate as me.
There's no doubt in my mind that if I hadn't done all the things I did in life to keep my lungs healthy that I wouldn't be in the position I am now. My lungs are diseased, they are damaged, I've seen the scans and heard the surprise in my Drs voice when he realised that they aren't as good as my numbers would like to suggest. My lungs are trained, very well, in how to get the most from them. Vocal training, trumpet lessons, all these things have strengthened the healthy tissue and no matter what state I'm in I can get good blows. My LF didn't even drop when I had pneumonia, but it was clearly there and I felt bloody awful for it. I have more problems with other CF complications than my lungs and for that I am glad, but I have the potential, just like anyone else, to decline rapidly if my circumstances change.
I don't like to feel judged by people who don't know me. I'm a harsh enough judge myself, I don't need other people jumping on top.
Anyway, this post is a wee bit too serious for my liking.
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Try not to compare yourself to others. Everybody's CF is different and people's bodies react differently to things that are thrown at them. I don't agree with the mild, moderate, severe thing. My team don't use it. They treat people as individuals. There is no comparison.
ReplyDeleteWhen you live with it everyday, it doesn't matter what "severity" you have. You're still the one dealing with the same physio/nebs/meds regime as others.
I'm the same as you in that my lungs have been strengthened by years of singing/saxophone/flute lessons.
I feel so guilty that I couldn't help people. I think it's more a case of feeling helpless than guilt when I see friends around me passing away and becoming so ill, but we work so hard in order to stay healthy.
What I'm trying to say in a very long and rambling way is everyone's body is different. It's like people's bodies react differently to pregnancy for example. CF is such an individual thing but the symptoms are all the same.
Lovelovelove
xxx
P.S. I can't find your music blog...
I know everything you say makes total sense, and I do try to think that way but sometimes feelings just take over a bit, as I'm sure you know!
Deletehugs!
PS sent you a fb about the blog...dunno if it's working properly hehe
You don't need the judgement of others about your health. So don't seek it, espesh if not all interlocuters are mature, knowledgeable or decent people.
ReplyDeleteI don't seek it, but there are times that I have felt judged by other people with and without CF.
DeletePS who is this btw??!