Each week five babies are born with CF and two people die waiting for a transplant.So this week is Cystic Fibrosis Awareness Week and what better to start it off with than a blog post about it all! Don't worry I wont make it all dull and boring for you ;)
There are still waaaay too many people who either don't know what CF is or don't realise how serious it is - no we don't just sit around complaining about a cold!
A few little things so you can get the basics!
. It's genetic; we're not contagious so don't worry! CF is there from birth (however you're not always diagnosed with it the second you're born! I was 3 months)
.There is NO cure (Kalydeco is very helpful to the 5% of us that can take it but it is still not a cure)
. Thick sticky mucus loves to block up pretty much everything in our bodies! This means that we get loads of chest infections - and these are pretty serious. One infection can make you spiral downwards to a place you can't get better from. It's not always a simple 'take these tablets for two weeks' - it can be MONTHS of grueling IV treatment, being unable to walk, eat, drink. It affects the digestive system meaning it's very hard to gain weight as we can't digest most of our food.
. It's not just the lungs and digestive system taking a bashing - the liver and kidneys also love to join in the action too and sometimes throw a wobbly..it takes the attention off the lungs I guess!
. There are so many treatments..tablets, nebulisers, physio, IVs, flutters, PEPs, injections..you name it, us CFers have probably had it! You can spend from 1 hour a day to 7 hours a day doing just treatments alone depending on how ill you are.
Going to hospital usually consists of a lot of the following..check ups, x-rays, lung function tests, operations, annual reviews, bronchoscopies, blood tests, IV test doses, nebuliser test doses, physio sessions, various scans, doctors trying to figure out why your lung function wont go up despite IVs, rest, exercise (& you telling them they better start breathing properly or else!) and deep discussions about your future - such fun we go through! :) But it's fine - we're used to all the needles, tubes and medicines making us feel all strange! It doesn't necessarily make it any easier though.
And for some people there's transplant clinics on TOP of all that too (like we have more time to spare!)
CF can mean that one week you're feeling great and on top of the world and the next you're so out of breath you can't walk more than 10 steps, can't eat, can't talk and just feel like you can't carry on. I've been through that myself twice now and words can't even describe how bloody scary it is when you feel your life slipping away from you and it feels like there's fuck all you can do about it. And when you're sat in a hospital bed, on 24 hour oxygen with a lung function of 16% which is less air than in a coke can it's pretty hard when people think that you're 'moaning about a cold' or don't actually understand HOW sick you are. And it's not just physical stuff. Mentally, it's hard when you know inside you're fighting each day - some days are a lot easier than others when you're 'well' but still you can feel CF inside of you, there's always some little reminder. It's how you choose to act upon that that's the difference - you can sit there moaning EVERY day or you can get up and enjoy life for however long you have.
It's hard having to cancel plans last minute because you're too exhausted to even move. Mentally..it can be quite tiring. Not just worrying about yourself, about your future, about tomorrow, but worrying about those around you because you know their worrying about you too. But we try our best to carry on with a smile on our face because it makes life so much easier to tell people you're okay when actually you're not doing too great but it's not worth the hassle of explaining or you don't want people to think 'oh she's sick AGAIN'.
We do have good times - Kalydeco is an amazing thing to happen (I have previously put a post up explaining all about that if you fancy a read!) and people are now living longer because of better treatments.
This is WHY we want more awareness of Cystic Fibrosis - we want people to realise what it is, what it does, but also hear about our success!! People who are getting transplants and doing really well - things like Kalydeco which have made so much difference to a lot of people's lives. It's not all doom and gloom! Sometimes our lungs do actually behave, for a while at least :)
So please share my blog, donate to the CF trust and if you've managed to read to this point without falling asleep then thank you very much! https://www.cysticfibrosis.org.uk
