Hi, I'm El. Some of you may know me, and some of you may not but I have CF, that's why spreading awareness about it means a lot to me. I want to raise awareness for this condition and educate people on what it's like to have it. It's kind of strange sharing it as in real life I'm a private person who likes to keep that mart of me secret but here I can be free to say whatever the fuck I want so I'm going to share my story.
I've had CF ever since I was a baby (I believe I was 11 months when I was first diagnosed but I'm not sure as I don't actually remember anything) meaning I don't know what life is like without it.
Growing up, the hospital appointments every 3 months never really bothered me, all I cared about was that it meant I wasn't getting 100% attendance at school. The appointments that did bother me were the annual reviews. This is a special appointment I have close to my birthday (lucky me) where I have to go to the hospital all day and have a bunch of tests: lung function, liver scan, x-ray, blood tests and normal clinic. The worst part was the blood tests. To this day I still can't stand them, I get very shaky and stressed out. I've had some bad experiences that I'll share later on. I just hate them so much.
Now all I care about is making sure I catch up on the schoolwork I miss which can be easy but other times it can be a right pain in the arse. I like missing school but at the same time I don't. I still hate my annual reviews though.
In my life I've seen many different doctors and nurses and dieticians and physios and goodness knows what else. I have my favourites, and I love them. Huge thank you to Joe, Becky, Tamara, Katie and my favourite person ever Dr Gary. This man has done so much for me and he's the kindest man ever. I wish I could see him more but he's very busy. I saw him all the time when I was younger and I loved it he was the best, I then didn't see him for quite a while as he got extremely busy and COVID fucked everything up (I'll be coming back to that). I saw him maybe 1 or 2 years ago and it was amazing, he hadn't seen me since I was a child. I was on the verge of tears. He explained a lot to me that I didn't know and didn't treat me like a child who didn't know anything.
I am very lucky with my condition though, you see most people with CF have two genes that contain the F508del mutation however I lucked out in a way. I have a rare mutation which means I got off very lightly. I have a mild case and I am also pancreatic sufficient so I can hide it easier and I'm healthier.
On my way to my most recent annual review I made the joke to my mum that I was a mutant because of the rare mutation I have as well as the F508 gene. My mum laughed and called me Mutants X. Looks as though I'm living proof mutants exist lmao.
#Mutantandproud
The lockdown in 2020 affected my mental health a lot. I was forced to shield as we didn't know how it would affect me if I caught COVID-19. For me it was one of the worst periods of my life. I was trapped inside - I couldn't even go out for a walk around the woods or something like that. Most people were allowed out once a day to exercise, nope not me, I had to stay inside. I was forced to do PE with Joe every day. I hated it so much. I had no choice and that I think, made me resent it. Hell with Joe, hell with the torturer, I had many names for it. I should be greatful that it was keeping me healthy and I am but I hated it so much. I was a mess then. I cried a lot. I missed my friends. I missed my family. I even missed school. On the last day of year 6 before the very first lockdown everyone was signing papers and stuff but did I get to do that? No. We think my dad caught COVID so I was isolating and didn't get to do that. I was deviated. When you're forced to do something, it sucks the enjoyment out of it. I hated lockdown so much, I was Scared for my family and I was upset all the time and I was desperate to see people. PE with Joe kept me healthy physically but it took a toll on me. I missed playing football and I missed a lot of the things you enjoy in your last year of primary school such as prom (I had been planning to ask a boy to go with me as well), I missed PGL (year 6 residential), I missed my leavers performance. I suppose the only good thing was that I missed the sats which would have been on my birthday.
