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 was...fun!
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

Monday, 14 April 2014

Hitting 7K views!

Never in a million years when I started this blog, I thought people would read it...maybe a few hundred at a push!
Knowing people are genuinely interested in my life and welfare really warms my heart.
Thank you so much if you are a regular reader or this is your first time, thank you for taking your time out of your day to read this blog. I'm sure some stuff you have no clue what I am on about and maybe sometimes you have thought that all I have done is moan, I apologies if  that applies to you but no one said life would be easy, and no one mentioned how to get through it.

My goal is to inspire people, make people more aware of CF and also reassure people with CF its ok to speak out about it.
I'm pleased to say I have inspired a few people to make blogs of their own of their life with CF and that makes me feel like I have completed my goal.

Just knowing I have made someone feel more confident about themselves and CF makes me feel fulfilled.

I remember starting this blog and being nervous and worried about what people would think about me, my cf and writing a blog in general. Many people didn't understand the complexity of CF and I hope my blog has given a massive insight into this.

Here is a link to my first few blog posts - http://www.thegirlwithcf.blogspot.co.uk/2012_10_01_archive.html
As you can see I have progressed massively, but the whole concept of writing my feelings down for an audience to read was very new to me, now I feel comfortable expressing my feelings as many people haves similar feelings and can feel that they are not alone, that their emotions aren't abnormal.

 The last year and a bit that I have been writing has certainly been the most hectic for my CF and being able to share that with you has lifted a weight off my shoulders!

I am glad I have met new friends with CF and closely related to CF, that have become a big part of my life.

So thankyou - you know who you are!

Thankyou to my friends and family for always supporting me and keeping me on track!

Thanyou to my nurses and doctors for putting up with me and making me well!

And thankyou to you reading! It gives me motivation it write and share my story!

Here's to another 7k more!

- Stay lovely xxx

(some exciting stuff coming up in the next few days - expect another post soon!)

Sunday, 6 April 2014

Am I really an adult yet?

When being in and out of hospital like a revolving door, it gets pretty normal, a second home you could say.
I have developed many close relationships with many nurses, they know how I act, my personality, my likes, dislikes, they know a lot about me. So what if one day, I have to start a fresh? Make new relationships all because they see me as an 'adult', lose those valuable bonds with nurses and doctors, just because I'm no longer the right age to stay.
Moving to the adult clinic, is my next step in my life. I'm 16 now, it is something that is cropping up in conversation a lot in my clinics. Due to being 16, I'm getting to the end of my time in the pediatrics ward. But the term 'adult clinic' or 'adult center' isn't what I am, I'm not really an adult yet and the prospect of going somewhere where they treat adults and accept me as an adult is a little daunting.

I like the ward I'm at, they know how I work with treatments and medication and being at the stage where I'm going to leave and go to a new place is scary. They won't know me well and won't know how I like treatments. I mean I know that's what happens when you go to adults and you kind of just need to deal with it, but I'm not in the mood to be messed around, because I know I do not have the confidence yet to criticize any doctor or nurse, I'm not really an adult. I'm very young for my age, the way I act, the lack in confidence, How would I cope in a new environment? Yet this is what is being expected of me between now and my 18th Birthday.  It's not preventable, I knew this was going to happen one day but when I was 14 it felt like ages away, now I'm nearing this stage I wish I could turn back time and start again.
When I go into hospital now, I do feel too grown up to be there, I have little interest in going to the 'playroom' and painting a picture, I'd rather be getting on with work, which is impossible from the lack of wifi provided. But when I leave, I don't feel like an adult. I'm still young and the idea of having a say in all my treatments in the adult clinic is slightly frighting, I got so used to just being told what would happen to me, now I get a choice which is very strange. I mean why would you ask me if you can do a blood test? I will want to say no so bad, just tell me you're doing one so I can't argue with you because I know the blood test will have been suggested for my own good.
I'm just not good with change.

Blood Glucose

I'm currently on a blood glucose test, I have a monitor under my skin and I also have to stab myself with a needle 4 times a day, this should get a better picture of it I have diabetes or not.
They wanted this to all done before I go into adults
The results should be ready in my next clinic which is in June I think.

I don't really have much else to talk about, this was the only time I was free to write this, I have so much revision to do this holiday as when I go back I have like two weeks before my first exam. But then such a long summer! That is what is getting me through all this horrible time!

- Stay lovely xx

Monday, 24 March 2014

Looking back at my blog, I feel I have neglected it big time and I can only apologize!

I have basically left this blog un-attended for over a month, and a lot has happened!

My Birthday

My birthday is the 5th March where I turned 16. My parents got my an Iphone for my birthday, which I was very grateful for! My Birthday treat was going to see 5SOS on the Monday 3rd, I went up with my best friend and we got right to the front on the barrier! The experience was totally amazing, I never thought when we left school that afternoon we'd get right to the front to see my favorite people, it really was a crazy time. It was like one massive party and the other fans were so nice, there were some moments of pushing to get closer leaving us no choice but to forcefully push against this surge. Overall the atmosphere was brilliant and 5SOS were incredible (as always)  I'll post my pictures at the end of this blog
I also on the Saturday went out for a meal with 5 of my friends, we had a lovely time and I couldn't have chosen better people to spend my 16th with.


Overall my hospital admission have been down, my last time I was in was January. Until now, I went in for a 10 day course of IV'S at the start of this week, due to have an Endoscopy at the end of the week at GOSH. Going there was very exciting, I don't know if thats the right word to use for going to a hospital, but it was interesting to see how they run things and what the cubicles were like...let me just tell you they are bigger than my ones...with en-suite!! Basically a 5 star hotel! haha!
My stay in my regular hospital was boring, I watched films (like always) but the bloods department thought it be fun to mix my blood with someone else's blood because they thought two people couldn't be having tombramycn levels checked at the same time. resulting in me having to give more blood away!
I'm finally having this glucose test the start of April which will finally tell my whether I have developed diabetes or not!

I also had mock week at school which was very stressful, all our exams crammed into one week, I'm so glad that the real GCSE's are like that!I got mixed results, but I am learning to prioritize, my exams will NOT define me as a person and if that means I have to find another way to do the I want, then I'll just have to do it.

Playlist of the week

I decided to bring this back, even though it wasn't really a thing - I decided I'll tell you 5 songs I'm loving this week!

- She Looks So Perfect - 5SOS
- That '70's Song - The Cab
- Time- Bomb - All Time Low
- The Mighty Fall - Fall Out Boy
- La La - The Cab

I'm not really sure what to right abut, please give me ideas - message me!

5SOS Concert Pics

Saturday, 8 February 2014

It's Febuary and I apologise for the lack of posts.

First off I got my English GCSE results back and I got a B but was onyl 4 marks of an A so I am defiantely retaking!

I also have just finished mock which has been crazy and I can't function poperly due to lack of sleep and just constant revision, some of my mocks went ok and some went beyond awful so I'll see what my results are in a few weeks. But it is soon the half term holidays so that will be a nice break.


So I have managed to stay out of hospital for a while, i'm going back at the end of Febuary just to check everything, I got a new nebulizer called the I-neb. It is so quick and so much better than the eflow because that thing just slowly died and got slower. I told my mum an Iphone would go well with an I-neb because it's my birthday on March 5th so that was a hint towards that haha! She wasn't happy!
When I go backto hospital I will have the glucose test done for six days to find out if I actually have diabetes or not, it will be great to finally find out if i do or not!

I also made an instagram purely for CF - If you want to follow me there I'm thegirlwithcf

Thats really it because my life hasn;t been very interesting lately.

I'm going to see 5SOS for my birthday on March 3rd which is really exciting and their new single 'She Looks So Perfect' has come out and it made my week because its amazing so please check it out, they are amazing!

Thats about it!

- Stay Lovely!xxx