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Wednesday, 8 November 2017

Its been a while!

I've decided to resurrect my blog and let you know how things are going with me.

I started university in September this year, I'm studying Psychology. University has been a massive learning curve for me, learning how to be independent, cook, clean, take meds, socialise, do essays. Trying to fit this in on a daily basis has been tough.
The whole going to university with cystic fibrosis, has been a hard one to figure out, it was hard to know how I would manage the university life, how my flatmates would be, how demanding the course was and when was I gonna get the time to do the next treatment? I knew the first few weeks were gonna be a juggling act to see what would work and what wouldn't, I found that it's not going to be possible to do your treatments twice a day every day, it's okay to do it once a day you just have to be kind to yourself and know that you are doing it, I also knew the gym was going to be very much part of my university life and that I had to schedule into the day even if I had only managed to do my physio once I knew that I would be doing the gym and therefore I didn't have to feel as guilty as I normally would. It's very different trying to get your head around the city, I know my lungs haven't adapted well to the pollution of what the city has, but my university is very hilly so I feel that even though my lungs may not like the new area in I am working them up the hills every day so therefore it will benefit me.
But why did I choose psychology? This was quite a change from my original degree, I really wanted to go into medicine that I wanted to be a doctor and help people in the ways that I've been helped and just be able to give back, then my health declined a lot in 2015 and it was advised  that maybe going into medicine and being in hospital where people were ill was not the best place for me to be. I understood this and even though it was hard to have to accept that I wouldn't be able to really do a degree that I wanted to do I did look into doing biomedical sciences, but I found that biomed was a very competitive course to get into, and also it had high grades which I knew I wasn't going to get. When doing my A-levels I did biology chemistry and psychology, I did this combo because of the whole going into medicine – but in the end the only subject I enjoyed was psychology. I decided that this should be the degree to do as I really enjoyed it and it didn't feel like a chore to learn. I'm very interested in forensic psychology and the criminal mind and this is the area that I hope to specialise in. I got an unconditional offer from my first choice uni, which took the stress of getting the grades away and mean't I could focus on my health and revise if I had time.

Whilst university has given me the opportunity to get a degree and study a subject I love, it's made me have to prioritise my health above everything else.
I have made some great friends at university, very like me. It's nice to be part of a group that is so accepting of your medical condition, the first week freshers one of my flatmates sat with me whilst I did my physio, I'd never had anyone do this before so it was quite bizarre but then I thought myself I shouldn't have to worry about this because this is who I am I have to do this to stay well. The fact that my flatmates don't mind and want to sit with me whilst I do it as a bonus.
All I can say is I don't have a party flat, my flat hasn't been out for about three weeks now we are normally in bed by 10 o'clock. This is so good because they are so chilled and it's nice to be with similar people who can't always go and party and who do want to focus on getting a good degree.
My general fitness routine has greatly improved since starting university, I try to go to the gym once a day even if that is for half an hour. I started going to yoga classes once a week which has been very interesting, I bent in ways I didn't think were actually possible but I have seen the benefits – my breathing is a lot better and I do like having an hour where I can relax and chill and not think about what essays need to be in, preparing the next meal. It's nice to have a break from a hectic schedule. I just don't know how people party on top of it.

My CF has recently been behaving itself, although that can't be said for all of the time that I've not posted on here. I was admitted to adults for two months, I was very poorly, I was under way below functions and grey it all wasn't brilliant. I miss my first year basically of six form and it was tough didn't really make new friends and that was hard for me but I restarted my year and made some lovely friends and was a lot better. As I grow bug called mycobacterium abscesses, and as many of you in the CF community know this prevents you from having a lung transplant this was the first time I heard about it when they moved over to adults. So there not knowing that now I do not have another option was quite scary to start with but then I realise that that meant that I had to keep as well as possible because I don't get the chance to have a lung transplant. This really changed my mindset I was a teenager who didn't really want to do the physio, when I was in secondary school I didn't really do my treatments as much they should have and obviously I regret not doing that but I don't think I wouldn't have not gone through that stage. I think it's a massive part of growing up and I've spoken to many people with CF and I know that they go through the same thing, because it's hard not being able to meet with the friends with this CF and I know that the CF community online wasn't as prominent as it is now when I was growing up in my early teens and if I'd spoken to someone I'm sure I would have taken on board what they said and but I can never really be sure and the only thing I can do now is just make an effort and take every day and that comes. There will be some days when I feel like I can't be bothered and why have I got CF and I don't really want to do my treatments I can't fit my treatments in, but if I do have a day like that I will always reflect on it and I will always say to myself tomorrow you will do your treatments, tomorrow is a new day.

At the moment my lung function hasn't really shot up as much as I would have hoped. Putting on weight and going to the gym I thought my lung function would play ball and it would improve like the research has suggested that if you have a good BMI and you exercise you lung function would increase even just a bit. But no, my CF decides it doesn't want to do as it's told, my CF doesn't want to improve in the ways that I would like to see. This didn't mean that my lungs weren't improving just  the numbers weren't showing it, I had a CT scan done last year and they compared it with my paediatric CT now the difference between the two sets were very noticeable my most recent one was so much clearer I had less plugs of mucus and more space where was, now this didn't show in my numbers. To me I saw my numbers aren't going up meaning I'm not getting better, the doctors were very pleased with my CT and due to the progressive nature of CF it's very rare to see not only stopping the progression of CF but also to improve the lungs is very hard to achieve.
Even though my numbers weren't improving the fact that I did feel better in myself didn't mean I was making that up it just meant that lung function wasn't the best way to test my health. Lung function is a very small aspect of overall health, but for CF and the CF team and a lot in the CF community it's something a lot of us get very hung up on. I see countless posts of people showing how much they've achieved how high their lung function has gone, I also see a lot of people asking how to improve their lung function, and don't think that I didn't do that because I did. But numbers are only one way to measure your health. Sometimes getting too hung up on something will impede your view of how you are, I know I can climb more stairs than I ever could before, I know I can run in the gym for a longer amount of time that I could, I know I can walk up hills that I didn't think I could, and yes some of these things may take time and yes you may be slower than other people they doesn't mean you can't do what everyone else can do and your numbers do not define how ill you are.
I'm doing a lot better now, I'm not so worried about the whole no transplant thing because at this moment in time there is no way I need a transplant and I hope to go on like that for a very long time and I plan on doing that by making sure I exercise and I do my treatments when I can.

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