'But you're wearing make up - you must be feeling healthy'
'You look fine..'
'How do you need THAT many tablets?'
'I didn't realise you had to do nebulisers, physio and all those treatments every single day..'
'IVs and hospital can't be that bad surely'
'I'm on two weeks of antibiotics, I know how you feel - I feel like death on them'
We hear these things all the time, purely because people aren't CF aware. I don't tend to tell everyone how many treatments I do, how many times I do them, how often I feel unwell or how things affect me because you don't want to either bore people or seem like a moaning minny. Even when sick on IVs, feeling really ill and exhausted I've still gone out to see friends or family, even if its just for a couple of hours but because you've left the house people assume you feel absolutely fine - it can be quite easy to slap on a smile and say you're feeling alright when the truth is that you feel horrendous.
Try to imagine this - you take a breath in, but it's not a normal breath like usual..you get the smallest bit of air in and you realise that's the most your lungs will allow you to take. You struggle to walk to the next room to get a nebuliser that may make your breathing a little bit easier for a tiny bit of time. Your head is spinning and hurting from the constant coughing and sometimes low oxygen levels, your lungs feel like they're crushed and it feels like you're drowning. Your temperature is sky high so you're sweaty but cold and shaking. The IVs you're on are making you so so sick and grumpy but you know without them you'd be even worse chest wise. IV time comes and you can spend an hour and a half doing them, watching them go into you knowing that you're going to feel even more sick any minute but praying they help the infection thats raging in your already tired lungs. If you're lucky you have someone at home with you who can help get things, do things but some people don't have anyone there so have to struggle on by themselves whilst feeling like this.
Most of you reading this will probably never feel this feeling. The terrifying feeling when it's the middle of the night, you're coughing all the time and literally gasping for every single breath. The panic that goes through you as you think 'I need to get more air in'. With every single infection comes more scarring, more lung damage.
We may recover from an infection but that does not mean its not damaged us. There is always a fear with each bad patch that you will not get through it this time.
CF is the countless tablets we take every day, with every single meal or snack we need Creon to help digest our food. Nebulisers every single day - when I'm 'well' I take about 4-5 a day, but when I'm ill I can end up taking around 9-12. We have to do physio - either percussion where someone pats on your chest, back and sides to try to shift the sticky mucus that is inside the lungs or you can do various breathing exercises and huffs.
And then when you're poorly and on IVs you realise that you spend most of your day doing treatments. IVs can be three times a day, 1 and a half hours each time (can be longer or shorter) and at 6am that's not pleasant! Operations, bronchoscopies, chest drains, cannulas, lines, ports, blood tests, X-rays, lung function tests, exercise tests, chats with every medical professional under the sun - all of these things can happen.
The feeling of worry when you wonder if you'll manage to walk around the shop, the feeling of dread when you know it's going to be uncomfortable and well result in major coughing fits with half the public raising eyebrows and staring at you - I swear sometimes if I walked around a shop in my underwear I'd get less looks than when I'm coughing! Not willing to try it mind you…! Supermarkets are the worst culprits as they have chilled isles and the cold air really just sets you off.
There are other complications too - CF doesn't affect the lungs..oh no, that would be far too simple. The pancreas is pretty damn lazy, hence the creon tablets with every food but this also can bring on CF related diabetes (which I have). The picture shows all the various ways it can affect us.
I'm so lucky that I have a very understanding family and group of friends but there are always going to be people that just don't get it, just think you're making it up. Don't understand how one day you can walk around, feel pretty good, yet two days later you're struggling and need IVs. I seem to go downhill pretty quickly in the past few years but luckily can perk back up.
A lot of people I've spoken to lately assume that if you have CF you are always on the transplant list - you aren't. You only go for assessment when you're very sick..there would be no point in having a transplant when you're lung function is in the 60% range as the risk of the op would be too great. The main issue is that there are not enough lungs available for those who need a transplant. You can't just have any lungs, it has to be a match. Some people can be listed for a week and get their lungs, some people a few years and some people may never get their chance of a second life. I know I've banged on about it a million times before so to shut me up just go and sign up to become an organ donor. If your closest friend or family member or even yourself needed an organ you would be begging people to sign up.
A few years ago when I was 18 I had 16% lung function, I couldn't walk or eat or do anything. My doctor said my body was shutting itself down as my Mum wheeled me in to the hospital and it was the scariest time of my life as I just lay there helpless waiting for them to help me breathe. Luckily my doctor at the time did everything he could and although it took months and months I got my weight and lung function right back up to where it should be. But those months felt like years - I was on IVs for pretty much a whole year. I would force myself to eat because I didn't want a peg (a button and tube that goes in to your stomach - CFers connect it up to a feed overnight if they find it hard to eat or gain weight). Not knowing if you're going to get any better is a horrible thought but you push on with the hope.
A few quick CF facts:
There is no cure
1 in 25 carries the faulty gene
Each week 5 babies are born with CF and 2 people die
It is not catching
Everyone with CF is affected differently - even siblings
I'm sat here trying to think of what I've missed out. There are tonnes of facts and figures I could give you but I'm pretty sure I've done that before so I thought giving a perspective of what CF feels like would be different for a change although it does all seem a bit of a ramble - maybe thats because I've read it too many times!
If you've got this far then thank you, please share this blog..we want to raise as much awareness as possible. CF is a part of me, it doesn't define me. And without it I wouldn't have some incredible bonds with some wonderful people, I wouldn't be grateful for breathing, I wouldn't take each day as it comes and I wouldn't be as strong as I am now.
Donate to the CF trust
Sign up to become an organ donor