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“Sometimes it’s okay if the only thing you’ve done today is breathe”

Majority of you would already know that I have Cystic Fibrosis but not everyone does and that’s purely to the fact that this condition isn’t always visible. I want more people to understand that living with a hidden disability has its positives and negatives, you can be ‘fine’ one moment and then feel like you’re dying the next minute and no one can really see that purely because it’s not physically noticeable to people which is what makes it harder in life as people think you’re the healthiest person around with no issues. 

This post is an update of what’s been happening to me over the last couple of weeks as I’ve posted a few insta stories but not truly gone into depth with what actually happened. 

For the past year I have been suffering badly with my breathing, more so than ever. I have been taking a mixture of different medications on top of the already 90 plus tablets I take a day already! (Yes I am a pill popper) and nothing has been helping me. Back in October I suffered the most and was constantly having issues with coughing up blood, mucus (vile word I know) gaging to the point where I was being sick due to the volume of coughing. This meant I was unable to sleep as I can’t physically lie down anyway, but I usually sleep on my side and I wasn’t even finding I could do that. The only way of stopping all this was to be lean over and have my back arched. Then after 30 inhalers, and 5 rounds of physio I would eventually stop but still be short of breathe and aching all over. 

December, I was at my usual check up appointment and my mom demanded that we investigate further to this as some days I would feel like I was perfectly ‘fine’ and then the majority of the days I physically had no energy to do anything and when you’re working on your feet all day and having to try and entertain a puppy it’s the worst possible way to feel. I had more bloods which I thankfully never fainted at this time round and was told I would have a CT scan as you can see into more depth of what’s going on. This meant I went through Christmas struggling even more and waiting for my appointments to come through. 

January, CT scan done and now just waiting for results and this can take up to 2 weeks for the results to come back……. sadly we had an issue where we never got any results back at all. My mom phoned the hospital to investigate the issue and was told I should come up within the next 24 hours, little did I know that this meant it’s serious. I still went to work the day of the appointment and was oblivious to the fact that there could be an issue due to living with this problem for a while. When we arrived at the hospital we were taken to one of the rooms and were seen straight away to be told that my left lung has collapsed. Which I didn’t actually know how to react at first because I knew there was an issue but I didn’t quite believe that it was that bad. 

I was admitted to hospital there and then, because this was such a surprise I had nothing with me and started to panic. People say oh you’ve been in and out of hospital your whole life you should be use to situations like this and bloods etc. No this isn’t the case, no one is ever prepared for anything when it comes to the hospital as you never know what you’re expecting, everyday is different and no two things are the same with Cystic Fibrosis. 

Thankfully the CF ward allowed my sister to stay with me due to the fear in my eyes. I couldn’t have gotten through all this without Amber staying by my side 24/7. Honestly we tried to make it as fun as possible by making it feel like a sleepover (you’ve got to make it as fun as possible) we had literally brought everything up to the hospital, fake tan (not that I actually used it) about 6 pillows, films, junk food, two beauty cases, literally pointless items. The funny part is that the doctors thought Amber was the one with CF which must of meant I was looking good.  

Going back to the collapsed lung. The next step was to see the surgeon and get the process done as quickly as possible to try and correct the issue. Now from what I’ve been told this happened around October, they can’t confirm anything but when me and Amber was in Paris I had all the symptoms and that’s when everything started to go down hill for me. So the process was more worrying due to the time frame of having the issue as it was longer than expected. 

Why is it when you’re in hospital you automatically become more ill? I felt perfectly fine before I went in and I don’t know if it was due to the fact I knew what the issue finally was or because I was genuinely being ill, I felt terrible and couldn’t stop coughing. Also it’s hard to get any sleep there due to being checked on every other hour and bleeps going off from machines, so that probably didn’t help. 

I’m not going to lie I have never been so scared in my life to have the procedure, probably because I was googling what could happen if something goes wrong. Also the surgeon wasn’t confident with the fact that he could correct the issue. But I cannot thank the surgeon enough as he was the most amazing person and was reassuring me every second that he’s going to correct this issue for me no matter what it takes and that I would be back with Hugo in no time. When I was in the room about to have the procedure I fainted on the bed! Only I would be that much of a dramatic person. 

Thankfully everything went well and it was all corrected. I have so much treatment that I have to do now to ensure the issue never happens again and to continue to clear my chest. This means more physio on my chest, pep mask, nebuliser and then this new oxygen machine that I can use everyday to try and clear my chest as best as possible. 

The best thing about being in the hospital was that me and amber got to watch a load of movies when I was there. We were watching the proposal, Lizzie McGuire movie , peaky blinders, parent trap, 10 things I hate about you and more. I cannot thank my family and friends enough for the constant support throughout everything.

What I’ve learnt from all of this is to always listen to your body. If you feel something is wrong then you should go and get it checked out and ensure you chase up any results. Never just expect someone is okay because they say they are, everyone has issues and some people more than others. I have also realised that I cant carry on and do everything all day everyday. I need to ensure I take time to myself to relax and not worry about the slightest little thing anymore. I need to put myself first from now on and just focus on my treatment and enjoy life. No one knows what’s round the corner so live life full, but also at a reasonable speed. 

Girl With The Long Hair x 

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