12 Things You May Not Know About Someone With CF

Updated: Oct 13, 2018

Hey everyone,

I recently saw a post on the Cystic Fibrosis Trust Facebook page which really caught my eye! The title was '12 things you might not know about people with CF'.

Surprisingly, every single point described me. I could really relate to the post so I thought I'd take the points they had made and interpret them in my own way.

1. We're stronger than we look

Now I'm not on about noticeably looking strong, but mentally. There can be many things going on in my life, and occasionally not all are positive. The way I stay strong is to filter the good and bad. Finding something that makes me happy and using that as a stepping stone to overcome the bad times. For example, when I am feeling down I will most likely go and see my horse. Give him a groom and enjoy the fresh air, or even put on some loud music and dance around in my room!! (It really helps).

To keep smiling and not let the sad times pull you down is my biggest trait. There's no point feeling sorry for yourself because you could be using that time to enjoy yourself.

2. We hate wasting time

Many people may not know but CF holds a lot medical needs. There are other important things we have to do before doing the things we really want to do! For example, taking my morning meds which include, 9 tablets, 1set of physio 2 nebulisers which have to be at least an hour aprat. Its a pain, and I'd rather be outside with friends or enjoying my sport. My aim is to try and get the medication finished as soon as possible so I don't miss out on the fun stuff but still stay well. That's why I hate time wasters. Why wait around in your pyjamas when the sun is shining outside and your wasting precious minutes each day. It baffles me. I am most likely not going to reach my old age and so I want to make most of everyday.

3. We think A LOT

I'm a worrier!! Anyone who knows me well will understand that I think way too much! I personally have a busy lifestyle which I love, however when I do get downtime I just tend to think about the short-term future, when my next CF appointment is, am I feeling well, and what do I need to catch up on. etc. I have a mental list in my mind constantly. I worry and wonder way too often and then wonder why I am worrying so much, and so on!

4. We don't want you to be our hero, but to just be there

I don't really like relying on people because I then don't feel in control. All I ever need is for close family and friends to be by my side. Not to always to be there when I am sad but to know I have close people around me who I can speak to. For example, when recently needing a course of IV antibiotics, it was so nice to have friends come and visit and just pop outside of the hospital for some fresh air. We even grabbed a Subway! Also when at a friends house for a sleepover and they have to wait an extra 10 minutes while a finish a nebuliser. Sounds silly but I appreciate it.

5. We grow up a lot faster than our peers

From a very young age I started become more and more responsible for taking my medication. Especially when starting primary school, and always remembering to go to the Medical Room when lunch time started so I could take my creon before eating. Yeah, sometimes I forgot but nobody is perfect! Also when making friends and knowing enough about my CF to tell them about it, so they could also understand why I took tablets whenever I ate. As I got older I had to start listening to my body and knowing when I didn't feel well or was starting to loose my appetite.

With soon transitioning over to adult care in the next 2 years, I am needing to take the next big step into being more independent over my health and fitness. It takes a lot of understanding but soon it will all fit into place.

6. We feel sick a lot more than we look sick

Sometimes I forgot what feeling "normal" feels like when I have been suffering from a chesty cough for over 2 months. My chest can become wheezy and it feels tight. I usually am waking up in the night coughing and trying to catch my breath. I can look pretty healthy from the outside but sometimes suffering from within. Its hard for people to understand when I am fully capable with keeping up with my sports class at college, but then have a coughing fit or need 4 puffs on my ventolin afterwards. Its all fun and games!

7. Our family and friends are the most important thing

I can't honestly imagine living without my amazing family and friends. Even though I am the one dealing with CF, I feel they are taking each step with me. It's hard to ask for help because I am so independent, but somehow when I really need them they're there, and I don't even have to ask.

The most important person I rely on is my mum. Big shout out to Mummy Lorna because she is my rock, my personal nurse and soul mate. She is with me at every appointment, has taken me to all my activities from the age of 3, been up each night when I'm coughing my lungs up, stayed in hospital with me when I have been very unwell, constantly nags me when I need to do my medication and given me the most enjoyable life possible!

8. We hate it when we cough in public

Having to travel on public transport each day to and from college in annoying as it is. When on antibiotics and suffering from a chesty (non contagious) cough, it is hard to keep sipping your water and swallowing because you don't really want to be coughing the whole journey and annoying everyone. Only a handful of times I've had people turn around and look at me, or make a face of  'oo that sounds nasty' when having to clear my chest after getting off the bus. I try not to make eye contact and if I do it's that awkward 'im fine' smile to reassure them I wont be giving them the plague!!

9. I'd rather be doing other things

The hardest thing about having CF isn't taking tablets, having stomach aches, colds and coughs or going into hospital, its not being able to have lots of time with friends and having to take time away to sit down and actually do the treatment. CF comes first but I would much rather be doing much more enjoyable things with my time. However, if I didn't spend the time on my treatment then I would have no time with friends as I would be in hospital for all of it. This is one of the many reasons to why I have a busy lifestyle. I want to be able to do as many things as possible which I love and enjoy but still keep up to date on my medication.

10. We love a good schedule/routine/plans set

Most of my life depends on finding and maintaining a routine that works. Without, I very easily get distracted and will forget or not keep track of extra medication. It is very hard to keep track of everything I need to take in order to stay healthy. For example, recently the amount of nebulisers I do have been increased. I am now doing 4 a day which is hard to fit in. It isn't the time in which the neb takes, but fitting them all in around my day to day schedule, including college. Its not like I am able to do the nebs all in one go either as there has to be at least a 1 hour gap between each dose. Therefore, at the moment my planned times are neb 1 at 7am, neb 2 and 8.10am just before I leave for college. Then depending when I get home, neb 3 is before dinner and neb 4 is just before I go to bed a 10pm. Doesn't sound too hard but that's one type of treatment out of many throughout a single day. With having CF, your treatment changes constantly. Most of the time, as soon as I am getting into one type of schedule, it will change and I have to adapt quite quickly. I love filling up my reminders and calendar on my phone to stay in the loop and keep up to date on everything. If I wasn't organised enough, I would find everything much harder.

Lastly, also knowing correct doses, doctors appointments, having prescriptions ready and all the rest that comes with living a normal life all needs to be in order!

11. Sometimes we just feel 'mergh'

I rarely ever feel down or angry, but when I do its never towards anyone but myself. I usually end up feeling like this when I have had bed news from doctors or nurses, feeling like life isn't going my way sometimes. It can get me down. Others times I can find situations too overwhelming and need to take a step back and slow down. These times never last longer than a few days, but with the care of people around me, I always get back on top. I will never express my feelings of sadness or upset to many people as I don't like to be seen as wanting attention or sympathy from others.

12. We NEVER give up

I'm a fighter. I'll push for anything that I know will be beneficial to my health. Even when it seems like nothing could get any worse, things sometimes do and you just have to power through it. Because on the other side IS success!

I really hope you have enjoyed this post and possibly know a little bit more about me and what CF brings to my life. Here is the link to the original post I saw on Facebook if you want to check it out.

www.cflf.org

Nicole x


Cystic Fibrosis Trust Website


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