Hi there megan,
welcome to Healingwell.
CF is tough huh? It does get in the way a lot.
Personally I always found it to be honest with my friends growing up. I'm not saying to do this though, that is your choice to make noone elses.
I found that even though my friends were "normal", and beause they'd known about
my CF since primary school, they were very supportive. It did mean though, I couldn't be friends with anyone else in my year, ecause well, try and get a whole year full of people to understand-it's impossible.
The main problem I've always had, is for example, I'll be on a us, minding my own buisness, and suddenly some old lady will be glaring at me for sitting at the front of the bus. So I glare back for a bit. Then, the bus will jerk and set of a coughing fit. Then, this old lady gets up andmoves back a few seats.
Haha, much fun when you cn scare busy bodies with your cough.
I've had a lot of comments and whisperings about
me-saying I must be faking disability like many young people, because I look so well. Every now and again I'll respond, but most of the time, I just leave it to my coughing fits to sort them out. Get out a nice clear sputum pot for good measure too.
I'm not ashamed of my CF, and never will be. It's made me the person I am today. Out of many people with CF I know online (and in person, we grew up together ruling the wards at the kids hospital). I've met one criminal. We're talking a lot of people here. I've never met any other 'bad apples'. I think that says something. I don't know what I would be like without CF. Maybe I would be one of the idiots running round streets trying to ruin people's lives or happiness. I probably wouldn't be this strange mix of a big kd at heart, with adult thinking values. I maybe wouldn't try my best to make people happy. I'd have probably grown up knowing my Dad, who I missed growing up, but now know he is a real uncaring person. I wouldn't be so mad on animals, because they scred me, until I learnt that we weren't actualy allowed any, which made me determined I was having a life full of pets to prove everyone. I have an amazing husband, in-laws, and I wouldn't change them.
Maybe I wouldn't have been nearly as stubborn. My trait growing up wasn't stubborness but bossyness. Maybe without CF, I would have stuck with been really bossy, which would have made me such a different person. I think my stubborness defintely serves a better purpose in my life.
Would I totally be rid of CF if I had the choice. I am unsure, it would take a lot of thinking. I have to take soooo much medication and do so much treatment. However, I have an undiagnosed muscle condition too, so I'd still be stuck with some treatemnt and physio. Plus, CF is the constant for me. Everything about
my health is unpredictable, but my CF is becoming more and more routine and with a timescale, which is easier to cope with than it used to be. I don't know how much I'd miss is it all honesty.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus