No tags yet.
I am not going to lie to you guys, I have no idea how to start this. I have literally sat here looking at my computer screen for about 15 minutes not having a clue. Let’s set the scene – I am sitting on the edge of my bed, wearing an oversized top (which if I am being completely honest is more like a dress) my curly shoulder length hair is tied up in a *very* messy bun, not one scrap of makeup on my face and my glasses perched on the end of my nose. I know exactly what you are thinking… ‘What a mess’ and to that I say, EXACTLY and welcome to the dysfunction that if my life.
Hey guys, my name is Emma Mangan. I am 19 years old from West Yorkshire, England. Oh yes American readers, you read that right; I am British. This means that I possess the world’s ‘sexiest accent’ according to Buzz Feed. Which if I am being completely honest I do not understand one bit. A Yorkshire accent is basically the equivalent to the cherry on top of a cherry Bakewell – no one really likes it and it always gets pick off. We are the cherry’s of England us Yorkshire folk just something that gets over looked. (I have just realised how British that last statement made me sound… I apologise) Maybe because we are only a small section and we are mainly all fields and cows (not just the animals if you know what I mean *crickets*), but anyway I’m going off on a tangent. So as I was saying, I’m an 19-year-old English female.
I’m basically a normal 19 year old, minus the constant partying; I’m more of the Netflix and chicken nuggets in bed on my own (and not ironically). I like to read from time to time, I love lucozade and any type of jelly sweets, But most of all, I LOVE to just sit on my sofa and stew in self pity until I worry myself into a state of anxiety about deadlines and responsibilities. I also sing, im learning to play the ukulele (which I will do some posts on). So, yeah I am just an average teenager. Oh and I have an inherited disease called Cystic Fibrosis. Almost forgot about that.
So lets get all technical for a bit here. Cystic Fibrosis is an inherited condition which, to put it simply, effects mainly the lungs and the digestive system. In reality it affects every cell in the body, so basically, my bodies a bit messed up. But whose isn’t? Right? There are SO MANY different mutations of CF, most of them I don’t know anything about, but my mutation in DF508. There’s also an expiry date on the bodies that contain the illness (we’re like food I guess), which is around 40 years old. But we don’t focus on that. That’s just a number, I’m sure I’ll live past that. Anyway Google it if you like but don’t pay attention to Wikipedia, they know nothing about it.
To be blessed with the wonderful curse that is CF, both of your parents must have a faulty gene. So when they… well you know, ‘make you’, those genes get together and they’re like ‘Whoa you’re broken too? So am I! I have a great idea, when the egg is fertilised and stuff, lets give it a 1 in 4 chance of getting a terrible disabling disease. Plan? PLAN’. So this is basically how it works, in a chance of 4, 1 child will be unaffected, 2 will be carriers (have the faulty gene) and the other, well, and that’s me! Just a salty girl coughing up a lung and smiling throughout the whole thing. Literally though, when we sweat, we sweat salt, I mean if its hot (which thankfully in England its cold a good 85% of the time) it can literally crystallise on your face, gross right? But it can be helpful, when have tequila shots (which I shouldn’t do because liver problems… don’t tell my doctor) we can just lick our arm and bypass the saltshaker. We also can’t mix with anyone else with CF because of cross infection and stuff, so thank god for the Internet.
Yeah I’m upbeat about it, I joke about it, and I smile and laugh every single day, but I am so lucky. And trust me, I’m not going to get into the whole ‘I wouldn’t be who I am today without my illness’ and ‘I’m so lucky’ because its not that, CF is shit, end of, but I’m lucky because I am so healthy for someone my age. I see people my age, and not that much older, online who are receiving lung transplants, so many waiting for the transplants, and some not making it to their new shiny lungs. It’s heart breaking.
So many people have an FEV1 (lung function) of 30% or lower, and they’re on oxygen full time. But my FEV1 is currently around 87%. My oxygen saturations are 97%. I am so fortunate to be as healthy as I am, and I never take it for granted. Not any more anyway. I know I am lucky, and I know there’s people out there, just trying to gain another 10% to be up at 40% and the fact that I am almost triple as healthy as them, blows my mind.
I’m also not delusional. I am aware that I will get to that stage in the illness, but isn’t it incredible that I’m not there yet.
So yeah, back to the blog I was reading. Basically, it was the beautiful girl and she was talking about how she would look at her transplant buzzer until she fell asleep, just in hope it wakes her up to tell her there are a new shiny set of lungs ready to save her life. So many CF blogs are like this. Many CFer’s start blogs when they are already really ill with it. But (correct me if I am wrong) but I personally haven’t seen any CF blogs, that are about them being, ‘healthy’. I know I am not healthy but I am relatively healthy, considering. But as someone who is doing well with CF, reading about what the future holds isn’t nice. It really isn’t. And I understand that this is my future and other people’s present but, its so negative for someone who is healthy to read them because its like someone hanging inspirational quotes in there homes. Every time you walk past them you read them and it reminds you its all ok. But instead of inspirations quotes it’s things like ‘oxygen tanks’ and ‘heart and lung transplants’ and ‘no immune system due to anti rejection drugs’ which I get is going to happen, and I feel awful writing it, but I feel like, we are getting the awareness that we need for like donations and transplants and stuff, but we aren’t getting the awareness for, for example, little 13 year old me to know that, it’s not all doom and gloom until that point. It will be ok until you get there and you never know when you’re going to get there.
The most important thing I have learnt with CF is that you can’t live in a bubble, and you can’t just exist, waiting to get poorly. You can do it. You can’t just exist. You have to live.
So to any CFer’s out there who, like me, are relatively well, or for any parents who are reading the terrible side of CF constantly, I hope you read this and it allows you to broaden your mind to the possibility that sometimes, you have to make the best out of a completely terrible situation. CF is awful, there’s no getting around it, but if you can’t live and run and dance while we can, what is the point of living at all?
I’m not saying its all partying and no medications and you can just ignore it, because that would be a lie. It is hard sometimes. Everyday I take 20 Creon tablets, and then I take 11 tablets in the morning a nebuliser and an awful medicine, which tastes like nail polish remover (it will be fine they said. It will taste like banana they said), on an evening I take another 11 tablets, 2 nebulisers and the medicine again then I sleep. But after my rebellious stage (by this I don’t mean the usual tantrums and ‘BUT I LOVE HIM MUM’ I mean the CF rebellious stage, which I have learnt recently is not uncommon, of refusing some meds and what not) I have learnt that I need to pull my head out of my arse and just take them, and I can now say, for the first time in a long time that I can’t remember the last time I skipped a dose! Which sounds stupid because I was so stupid for not taking them, but I’m over it! I can not talk about it without turning into a self depreciating mess of self hatred, because I don’t do it anymore and thankfully it hasn’t affected my health, which again, I am so lucky for. I have learnt from that experience that it is a small price to pay for good working (ish) lungs.
So I think that should be the end of my first post, you got to know a bit about me and I was able to convey positivity on such a negative disease, I’m 2 for 2. But if you have any burning questions, be sure to contact me on my social media, which I will link below and I will do a whole post answering blatantly honest, obviously from my own experiences.
And trust me, this blog isn’t going to be all CF related, I’m going to have more day to day stuff involved as well as health updates, posts around my interests, day to day stuff like singing etc etc etc.
Thank you so much for bothering to read this (I applaud you if you got this far) and I hope to see you on my next post?