Today at yoga I was informed by a lady that it must be a pain to have asthma, this a regular thing, people assume I have asthma as I use a blue inhaler like asthma sufferers. I told her I didn't have asthma but cystic fibrosis, she seemed quite shocked and exclaimed 'oh poppet that's even worse!', I wasn't really sure what to say apart from 'yeah it's not great'. She then proceeded to tell me how I should try reiki to help me. I never really know what to say when people try to suggest things to try 'fix' me, I haven't asked them for advice, usually their advice is useless and I don't really want to discuss my treatment plan with a complete stranger.
Here are all the tips I have been given over the years that I can remember - take an antihistamine, have a glass of water, take reflux medication, stop smoking, have a cough tablet, have a drink of honey, try reiki, go see a doctor, have a lemsip, get out of the cold, eat garlic, go get in bed, have a sit down, have some vitamin C, think positive, have a rest, get a good meal in me, I'm sure there are more that I've forgotten. None of these things are going to make my CF go away, they will not get rid of the mucus on my chest making me cough, increase my lung function to stop me being breathless or get rid of the infections breeding on my chest. A few of them might help me temporarily such a sitting down or having a rest, however this is how I am ALL the time, I can't spend my life sat down although I try my hardest to haha!
I get sick of people trying to 'fix' me. Complete strangers I don't know and don't care to discuss my health with. If it's not advice they are giving me, its useless comments such as 'oh you have a bad cough', yes and the sky is blue and grass is green, thanks for that wonderful insight! I reckon I can't go 48 hours without getting a comment about my cough. Think how annoying it would be if you had a massive spot on your face that you were already self conscious and annoyed about and you can't get rid of it. Imagine people keep telling you about this spot and stupid tips on how to get rid of it. Now imagine this has happened for 27 years! So yes I try to be polite but it gets tiresome to the point I try to not cough, do it quietly to avoid drawing attention or avoid doing activities that make me cough.
Before I went in to hospital but when my chest was getting really bad I forced myself to go to the gym and was coughing lots, a guy stood there and mimicked me coughing then expected me to laugh with him. I didn't find it very funny, in fact I was mortified.
I know people like to show concern, but please don't try to fix me and please don't tell me I have a cough, sometimes its worse and when it is my family and friends notice and are permitted to comment, this is the only time!! However to the general public, yes I have cough and it's not going away, its here to stay. I can't be fixed, I accepted a long time ago this was how my life was going to be, I live with a life threatening condition, it never gets better, all the treatment I have is to try keep me stable and not to make me better. I know for healthy people this is difficult to understand, they have a problem and they go to the GP and the GP makes it go away, they have a cold and spend a few days in bed and then are back to normal. This is not what happens to people with CF or other long term conditions, I am never going to be better, I have to learn to live with my condition.
Friday, 9 November 2012
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