With Friends Like Me

People with CF have to stay away from each other. We can catch different bacteria than normal people that are harmful to us and can spread them extremely easily to one another. It's one of the rules that seems the most simple but is probably the hardest to follow.

When I was younger the rule didn't exist, I remember in my old hospital there was a "teen room" with a few sofas and a tv where the older patients could go to socialise with other patients if they didn't have visitors that day or wanted to make friends. I remember being little and wandering into the teen room to make friends with the big kids, there were siblings James and Ruby and they played with me for ages when I was bored and it was really nice having people like me around.

One day a nurse stormed into the teen room and told us we couldn't be friends, we had to go back to our rooms immediately and couldn't mix anymore, the rules had changed and we could seriously hurt one another. Little me never understood properly and I was so confused as to why I wasn't allowed to make CF friends. I just wanted friends that knew what physio was when I talked about it or compared the amount of enzymes we had to take with the same foods, the older patients even tried helping me learn how to swallow tablets and told me how to.

Not being able to mix made it harder to meet other people with CF after those teenagers left and went to adult care, if we ever saw someone else in the corridor we'd run to our rooms, there was no time to stop and swap numbers or facebooks to maybe talk online, if we got within talking distance we'd hear a nurse shout from afar to stay away.

The reality is, life with CF isn't normal. A day for someone life me consists of medicine, nebulisers, supplements and breathing treatments. A year for me means hospital stays, clinic appointments and cancelling plans due to my health.

Not being able to make friends with this condition as a child, knowing that my life wasn't the same all my friends' made me feel left out sometimes. I know that if I had more friends like me growing up it wouldn't of taken me so long to accept where I am and what I have to live with.

For years I never did my treatments like I was supposed to, things like skipping enzymes at school to feel more normal at the lunch table, or not doing my physio so i could carry on playing games with my friends.

Fast forward to now.  I'm in adult care. I have 3 CF friends that I've made through school, through family friends, and online.

This year I ended up on oxygen for the first time, it was my own doing in the long run with how much I'd been neglecting my health, this is why the blog has been barren for most of the year. This alone wasn't enough of a wake up call.

I was introduced into a new group of friends around the same time as hitting my lowest point, health wise, and they've made me feel welcome. I went on holiday with them and took all of my treatments with me as if it was no big deal.

And that's what it became -  no big deal. I'm trying to do my treatments, no I'm not 100% there but I don't expect to be. After years of bad habits, ignorance and neglect, I've finally learnt that people will accept me, treatments and all, and I shouldn't have to sacrifice my health for "normality" and pretending I'm not sick.

One day I'll be able to do all my treatments without making a big deal out of it, I won't think twice about taking enzymes in public and I'll fall into a routine. Just because that day isn't today it doesn't mean it won't happen. I'm not going to be apologetic for winning the genetic lottery.

Oh, and I'll be making more CF friends, that's for sure.