Wednesday, September 06, 2017

Organ Donation Week

But you don't LOOK ill? Why are you parked in a disabled space? How comes you only work part time? How comes you spent a week in Ibiza if you're ill? The questions I get asked on a regular basis by people who are unaware of what CF is and how it affects me. 

Listen to this video and look at this photo of me and then continue to ask yourself these questions
 
 




 
I may look 'well' to you but you couldn't actually be more wrong. Each day my lungs are slowly deteriorating due to a build up of mucus which I cannot clear and it's becoming more of a challenge to keep well. Think of it this way, when you catch a cold/chest infection your body works its hardest to clear that infection and it's gone within about a week. The build-up of mucus in my lungs causes chronic infections as I cannot clear what's stuck down there which leads to a reduced lung function, and I often end up in hospital on iv antibiotics for weeks. To avoid this from happening as regularly I spend hours doing treatments, physiotherapy and nebulisers but they are only to keep my lungs healthier, unfortunately they aren't a cure. 

CF also affects my pancreas as it is blocked with mucus meaning that the enzymes required for digesting food cannot reach my stomach. This also means I cannot absorb fat. Therefore I have to eat lots of fatty foods and take enzymes (tablets) every time I eat and if I don't it will cause more complications. 

So I may not 'look' ill to you but I definitely feel and sound it. 

So, why are you parked in a disabled space you ask? Again, although I look 'well' I can't actually walk more than 20metres before I need to sit down or stop to catch my breath. I often have to remind my family/friends to slow down as I can't keep up! So next time you go to judge someone for being in a disabled space, just remember not all disabilities are visible! 

Why do I only work 20 hours a week? The harsh reality of CF hit me when I started a job, working 40 hours a week around 4 years ago in August. By the December of that year I dropped my working hours to just 16 a week. This was because I physically couldn't do the hours as my body was becoming too tired and I was nearly asleep in the afternoons. I also wasn't finding enough time to fit my treatments in as I was coming home and just sleeping as I was too tired to do anything else. Therefore I work part time now, just mornings I'll add, so I can come home and have an afternoon nap to recharge myself before doing all my afternoon treatments. That way I can try to stay well as I have more time to focus on treatments. 

On to Ibiza now. I spent a week of partying and having fun with my sister where we didn't see a bed until 5am most mornings and didn't wake up until about 4pm. Sounds great right? Not so great when you think you'll be able to keep up with everyone else despite the fact you have CF. Food wasn't really on the top of the list of priorities when in Ibiza so we sort of just ate when we were really hungry and often forgot about it otherwise. This meant probably only eating one meal a day- if you can call a slice of pizza a meal! This is definitely a mistake I won't make again. Remember me saying I don't absorb fat? I came home to find all of my clothes were too big and I'd lost 11lbs in weight in just a week! So I'm back in size 6 clothes and on lots of supplements to try and get my weight back up. Although my lungs felt fine for about a week after getting home, I picked up a cold from somewhere and it's gone straight to my chest. 2017 has been my best year as an adult with CF as I have stayed the most well that I have been in years. However, this week has given me a little reminder of how CF really affects me when my lungs are struggling. Let's just say my lung function has dropped 20% and I am non stop coughing and struggling to clear the mucus even with my physio equipment. I went to the hospital on Friday and was prescribed with some oral antibiotics but they have made me feel groggy and worse! So no doubt it will be a trip to my second home soon (the hospital) for some ivs. 

So why am I writing all of this and why now? It isn't to make anyone feel sorry for me but it is to outline how CF affects people. I am doing this because it is organ donation week and I am urging all of you to sign up to the organ donor register! Luckily, despite all of the above, I am still at a stage where I can live my life with these lungs. However, this may not always be the case and it wasn't for my cousin Sian and many other young people. By signing up to become an organ donor, you could help people with CF get that second chance at life. https://www.organdonation.nhs.uk/register-to-donate/?campaign=1160

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