Posted 4/9/2015 11:49 AM (GMT -6)
My experience with cf is, both my brother who is 2 years younger than me and myself have it. I was diagnosed at 2 years old about a month before my brother was born so he was tested right away. My mum went through a nightmare with me for my first 2 years as the doctors just thought she was an anxious mother and making up my symptoms and how bad I was. I was a very sickly baby.
Growing up childhood was pretty normal. We both had plenty of meds and nebulisers but my lungs were fine, I could run and play mostly. I had issues with my legs they thought was juvenile arthritis though later they decided it wasn't. Asthma was a big thing for me and I used to use any excuse to get out of PE. However I also used to play the trumpet and attribute that to my lungs now which despite having a colonised chest infection are pretty resilient and even when I take a dip and need iv antibiotics they bounce right back to high lung function after.
In adulthood I started working but couldnt quite manage it, so went onto disability benefits after 2 years. Though it is my proximal myositis that stops me not my CF. I went to college, got a hnc in computing. My brother however never has a chest infection, only has bowel issues. He works full time as a chef in a care home and nothing brings him down. It effects us both so differently it's crazy we both have the same mutations of cf, df508.
For me cf sits in the background, it annoys me when I can't do things. Like yesterday I bleached, sanded and painted the bathroom and today my body hates me and I'm hurting. But again that's more to do with my muscle issues., if it weren't for them I'd maybe just be a bit achey and tired so sometimes it is hard for me to separate what is causing what pain.
I still go out and have fun with my friends. I still go bowling and go to theme parks and play in mud (gardening ;)) I do what ever I can manage and more really. While it might make me achey the next day it's worth it. I have 2 cats, been married and divorced and now have a new partner who I've lived with for 3 years. My brother is married and looking into adopting children. He has a common cf problem in that his vans deferens is blocked. He could have ivf but they've been accepted for adoption also.
Not sure what else to put. Just wanted to let you know cf isn't everything that my life is about, it's just some of it. It's there, it can be annoying sometimes but it doesn't really stop me and definitely doesn't stop my brother.