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Tuesday, 20 March 2018

Hey all.

So to put off writing my essay which is due soon I decided to update you all with my life.

2018 has already marked some milestones,

I turned 20, I'm finally out of my teen years (Yay?!). I look back on my teen years with fondness (mainly). I'm glad of what I succeeded with my GCSE'S, AS& A-levels. I made some wonderful friends and starting uni was a massive achievement for me. I am grateful I have had the opportunity to turn 20 as many in the CF community aren't as lucky. I am however happy to get that stage of my life out the way, the rebellious side when it came to my CF and the idea that I thought that as I wasn't that bad with it, I didn't need to do the treatments that were asked of me.

Every teen goes through it, I wasn't rebellious in other aspects of my teen life, just my CF life. I suppose it was because I hadn't fully come to terms with my CF and also because no one else I knew had it and it made me feel different. I look back on those times with appreciation, the process of rebelling has now given me an appreciation of my life WITH CF. Having a dip in my health at around 15/16 showed me that I wasn't invincible and that in fact my CF was more in control than I thought. This blip made me buckle up and become more adherent with my treatments. Without my teen years being the way they were I don't think I would fully appreciate how far I have in fact come.

This comes to another milestone in my life, a whole year without IV's!! What a shocker that was. I never imagined I would get to this milestone again (I only have achieved this once previously, which was in primary school). It has shown me my health has dramatically improved, I'm not so reliant on antibiotics as I once was and trust me I used to be a regular at the hospital (when I was in paediatrics I actually watched the accommodation I live in now being built, how crazy is that?!). I can only thank the team and myself for this achievement. My team has helped me realise how important treatments and exercise really is. I've been a regular in the gym now for three years and it's really been paying off. Though I haven't seen improvements in my lung function, these other measures show me my health is actually a lot better.

I also had my annual review in December and will have my feedback on that in April (again - the longest I've been without an appointment before). Hopefully everything with that will be good, nothing drastic has happened and I've remained stable so I can't imagine anything bad being raised.

I'm nearly at the end of my first year of university and I've really enjoyed it, I've made some great friends and memories. I just have a few more assignments due and then exams in May and then I'm done!! It's crazy how fast it's flown by! I'm planning on doing some work during the summer as an ambassador and volunteering.

Then onto second year where it all actually counts but I am confident I can succeed, I've done it in my health now I've got to just apply it to my studies. I am hopeful I will achieve what I need to go onto my postgraduate study and beyond!!

Here's to my 20s!!

Sunday, 31 December 2017

Today being New Years Eve I've decided to do a look back of my year.
This year I've come such a long way and believe it has been the best year for me health wise in a long time!

My health as been pretty good this year, I have only had one lot of IV's being in March and I managed to get them to be home IV's so I haven't actually been admitted to hospital at all this year!! It's been a very long time since I have managed that. 
In March I wasn't very well, hence the IV's but I was actually considering doing a fourth year at my sixth form purely because I had missed a whole term of school and didn't think I'd get the grades to go to University, thinking I would have to put off Uni for another year. I didn't know that my luck would change very soon, and being given an unconditional offer from my first choice uni was just around the corner.

It was such a relief to be given the opportunity to go to university, when times looked bleak. A massive weight was lifted from me and knowing that I was going to university allowed me to focus on my health. 

In September I started uni, it was a massive step for me. I have thoroughly enjoyed my first semester at uni, I've managed to adapt to my new way of learning without jeopardising my health. My CF is stable. My annual review in December confirmed that. I'm doing well and that all I could ask for. My attendance at uni has been 100%, an unlikely thought. I never thought I'd see my attendance be that, especially being freshers and having freshers flu around.
My consultant was very positive with the progress in treatment for CF. And told me should will retire when CF is cured.
This gave me a lot of hope for the future, I've just got to make sure I carry on being stable until the right treatment for me becomes available.

Saturday, 9 December 2017

Finishing my First Semester


I'm nearly at the end of my first semester at university. One week to go! I am proud of how far I have come.
Whilst university might not have been the easiest thing for me and my CF, I've managed well.
Yes, my weight may have dropped a bit, this is due to the fact university was a massive change for me, my anxiety was high for a good few weeks and if I stop my eating habits for a while I do find it hard to pick it back up. However I have acknowledged this and have sorted out with my team to restart my appetite stimulants. Luckily I have this as my safety net to help me get back into my old eating habits, after being on them for a few weeks I'll be as good as new!

I also got my first job! I'm a student ambassador for the university, this is good for me as I can pick and choose when I work and am not committed to a certain amount of hours a week - plus the pay is good too! I'm really looking forward to starting this role in the new year!

The one thing I am most proud of is that I have not had to have IV's this whole semester, I honestly thought I would have to have at least one lot of IV's this time round as starting in a whole new place with completely new people, I thought it would be a given. But I have actually managed to avoid IV's and going into hospital. I'm so happy about that, to me it shows that my body is a lot stronger than before. All my flat have been ill too but I've managed to stay clear of it all! It might have been just luck but I'm glad whatever it was!

It's been quite challenging writing essays in a specific style, it's hard to know what the markers want from them, I have spoken to some of my markers of my essay and they have told me that they aren't worried about me and then they think my style will improve in the upcoming essays - which is positive as I was worried about that as it's such a big leap from A-levels!

I'm very excited to be on holiday soon but I'll also miss my friends at uni and my flatmates, luckily some of my friends live close by so I want to meet up with them during the holidays. I am looking forward to just chill out with my family and watch films, I'm literally not going to be doing much this holiday but that's just what I need. This semester has been so hectic and busy and it took a while to get into the swing of things, I am definitely feeling it now and would just like to have a long sleep and get rested and having a month off is a bonus too!

Luckily I have looked at next semesters timetable and even though it looks busy I don't have any 9am starts which is good for me because these last few 9am's have been very hard to get up for.
I'm looking forward to some of my modules next semester especially 'Introduction to Psychological Disorders'

I don't know when I'll post next, maybe when I have started the second semester, so if I don't post before Christmas, Merry Christmas - have a good one!!

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 was 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.

Tuesday, 21 October 2014

Inside the mind of someone with a life threatening genetic condition

What does it feel like to have a medical condition? 
A medical condition that you will never get rid of? 

These are questions I am hoping to answer in this blog post.

Having Cystic Fibrosis is hard to explain and you'll never fully understand it unless you have it and have to go through the on going treatments day in, day out.
Having CF is something that requires you to mature earlier than I probably would have, it's having to understand that it won't just go away one day and that the treatments need to be done if you want to keep well, Having CF is having to understand that these treatments are more important than seeing friends and even doing school work but these treatments must not take over your life and you have to try and balance a social life on top of everything.

Having CF is being able to realize that sometimes doctors and nurses don't know your body as well as you do and having an input into your treatment is key.

Having CF is knowing that even with all the antibiotics given, its not a cure and may not even cause the infection to clear. Having CF is knowing that and still fighting on with it.

Having CF is where you get so tired from all the intravenous antibiotics all you can manage sometimes is to watch telly on the sofa and chill.

Having CF is where no matter how bloated or not hungry you feel you know you have to eat at least 3,000 calories (for me anyway) to gain weight a day

Having CF is having a constant battle for motivation to do physiotherapy and to take medication when some days you just want to live a normal life.

Having CF is accepting the fact that you may not build lots of friendships at school because you are barely ever there. Having CF is getting upset at the fact that you don't always feel like part of your peers but feel isolated.

Having CF makes you have close bonds with other people with CF and form strong friendships with many people all around the world. But having CF means you have to accept the fact you can never meet these people.

Having CF makes you appreciate life for what it is and how easily it can be taken.

Having CF is hard, it makes me feel low and upset and like I'm different to everyone else, it makes me feel lonely and afraid of what the future may bring.
But it also makes me feel determined and strong and makes me want to fight and beat this illness once and for all!

Having CF is always having the constant nags of 'do your physio', 'take your tablets', 'eat some more', 'take your creon'

But having CF makes me who I am.


I haven't posted in ages and the truth is I have had so much going on!

Whenever I have tried to post I haven't been able to think of what to write or I just haven't had enough time to properly sit down and write a proper post.

When I last wrote a post on here it was before my GCSE's or just starting them in June and now its October! It only seems logical to start where I ended and talk to you about my exams.
After a painful summer of waiting for my results I finally got them on the 21st of August and I am pleased to say I got 1A*, 3As, 4Bs and 3Cs. Which I was very happy about and was able to continue onto sixth form and start the A levels I originally wanted to do. (Biology, Chemistry, Psychology and RS)

I then made a big decision health wise and moved over to adults. Which was a great decision in the end! I hadn't been very well since GCSE's, I had been in hospital during the exam period and then for 3 weeks after to try and eradicate my mycobacterium absessus with sadly no luck. After that I had my transition appointment and decided my condition was becoming to complex to be managed by paediatrics and so the move was necessary. When joining the adult clinic my lung function had dropped again to 50%, discussing with the consultants there we finally found out that if I got worse and needed a transplant I wouldn't be accepted onto the list due to the absessus. My weight was also a massive issue at the time being underweight wasn't helping my overall health either.
I then went back to school and continued my studies until I started getting really breathless when walking and struggled for breath, with that I had my first inpatient stay at adults.
My Lung function had decreased again to 48% this was starting to worry me considering at the start of the year my lung function was at 70%.
I have now finished my two week stay in hospital, the ward is really nice they have smart TV's with netflix and the physio has been so good! I've been put on appetite stimulants and also mannitol which is a dry powder version of hypertonic saline.
After my two week stay my lung function had gone from 48% to 54%! Which I was so pleased about, I now have to carry on ivs at home for another 6 weeks!
I am also going to the gym to get fitter and try to increase this lung function even more! And my weight went up too, so everything is looking very positive!

I am also doing my own ivs now so its a great feeling of independence and responsibility!

So that was a quick update of everything going on at the moment! (I think I might post something a bit more interesting in a little while so stay tuned! - this was just a bit of an update post)

-Stay Lovely xx

Monday, 9 June 2014

Sorry for lack of posts again!

I'm sorry for lack of posts but I have been in the middle of my GCSE exams and I have had so many it's been crazy!

Anyway my last post was on April 6th and a lot has happened since then!

First of all it was my mothers birthday and to surprise her we took her up to the ritz which was amazing and so stunning she couldn't believe she got to go her face was a picture!
It was a lovely night up there, we had afternoon tea and then went to watch Billy Elliott.

Then its been all my GCSE exams which have been crazy! I had so many the first two weeks of the exam period I got super stressed out which wasn't good and really neglected my physio which again was stupid!

I then caught a cold or infection of some sort from some people in the stuffy exam hall which lead me into hospital for the whole of my half term break.
It was my longest ever stay in hospital - a week. I know that's not long for some people but I normally go in for just a night.
I was spiking temperatures up to 39! So they wouldn't let me go home until they went down.
I then had some intense physio there and they got me doing some exercise which!
But at the end of the week I got my lung function from 58% to 67% which I was super pleased about!

Now the most exciting thing happened to me this weekend, I applied for a wish from Rays of Sunshine to meet 5 Seconds of Summer. Which they replied and said they would grant!!
So this weekend my family and my best friend went up to the WWA tour and met 5 Seconds of Summer before the show!

They were absolutely lovely and so nice to us, it was really chilled meeting them we all like sat round a little coffee table and had a chat about the show and what we had done before we came up, I got them to sign my 'She looks so perfect' EP, they gave us some of their merch and we got some amazing photos with them, we also gave them a letter which we had made bracelets for them inside!
It was an incredible experience and I want to thank rays of sunshine for making it happen it was so surreal and thank you to 5sos for meeting me!
If you don't know who they are I really recommend you check them out because they have an album coming out soon which is going to be amazing, they are so talented and really deserve the support!

Anyways I have two exams left - chemistry and physics! And then I'm done and finished yay!!
Then I have prom on the 27th June which is exciting too!
My main focus in the holidays is going to be CF and getting myself fitter and healthier!

That's it for now!

- Stay Lovely xx