CF Strikes Again

I have a feeling this will be a long 'un, I'm in the mood to ramble which I usually do in my diary but I cannot find it anywhere. I pray my brother's haven't stolen it, God help me if they have haha! But I did say I wanted to give as honest an account of living with CF as possible on this blog, so I suppose it'll be a relevant post?
Having Cystic Fibrosis means I am technically always ill. I'm always breathless...I can't remember the last time I woke up in the morning without feeling breathless. Nowadays I have to get downstairs to do my nebuliser as soon as I'm up to breathe in medicines that give me my breath back. I don't think I've ever shown you what a nebuliser is, so here's a terrible picture of me doing it: 
I'm not really sad, just playing around!
It's basically a machine that you pour liquid medicine into and it turns into smoke which I breathe in (I'm sure there's a technical term for that!) Without it, I wouldn't be able to breathe at all, so it literally keeps me alive. I do it three times in the morning and three times at night, which takes about 20 minutes which is fine; it's just so bloody noisy! Being breathless all the time means I also get really tired easily because my body has to use more energy in order to get my crappy lungs to work. So I take a lot of naps and have affectionately been nicknamed Aunt Josephine from Charlie and the Chocolate Factory due to me spending so much time in bed.
But these are things that I can live with...after all, I don't even remember what it's like to breathe easy like other people do, so I don't really know any different. You just get used to it, so you feel like you're not that ill, know what I mean? It's a different story when I get a cold though...99% of the time it'll turn into a chest infection and I'll have to start IVs, which I wrote about here.
And that's what's happened now! I had the usual sneezy cold, but it quickly turned into a chest infection and it's particularly bad this time round. You can hear my chest rattling when I breath as it's so full of crap and I've been coughing up blood. This isn't as serious as it sounds, it's basically blood vessels in my lungs that have popped from the force of coughing so much, it's similar to how a nosebleed happens. It's just unpleasant and annoying! 
And what's especially annoying, as all CFer's can relate to, is the timing! For your birthday, CF will give you a gift in the form of a chest infection. If you're going on holiday, CF will play up even more just to remind you to take it with you. It's Sod's Law, but I also think it should actually be listed in the official symptoms of CF: 'Will play up at the worse possible moments.' For me now I was supposed to go back to uni on Sunday but who knows when I'll be back? I finish on the 17th May so I don't have long until my first year is over. I feel like I've missed so much and it does upset me, but what can you do? I'm lucky that I'm even well enough to have the opportunity to go to uni...a lot of people are too ill to. I've got tons of work to do, but I'm not up to doing it right now so that's stressing me out. I'm also moving house on Friday, so I've got my room to pack up but I'm not up to that either! I had a month off when I didn't do anything, why couldn't I have got ill then haha! 
All I can do is wait for these IVs to work. It was just over a month ago that I finished a 5-week course of them, so it's a pain to be on them again so soon. I used to go about three months in between doses, but this year I've been on them almost constantly since February. I'm a bit worried about this; as you get older, CF gets worse which does mean more frequent courses of antibiotics. I don't want to be at that stage yet, I wanted to get through uni without loads of IVs. But now I'm realising the full impact CF can have on my life...when I was younger, it'd maybe stop me going out to play and I missed loads of secondary school and sixth form, but it didn't really matter because I caught up easy. But now that's harder to do, especially as I'm in London and uni is in Canterbury. I feel really detached from uni life and everyone there, although I keep in touch with people. I never imagined I'd have this much time away, things just aren't going to plan. Being a worrier, I then start thinking about my future...will I ever hold down a job? How 'normal' is my life going to be? But no one knows how their future will work out, things don't always go to plan but you just have to find alternatives I suppose. And I'm probably being a drama queen, this might just be a blip in my health! 
Well I think I've most definitely rambled enough! If you've actually got to the end of this, well done haha!

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18 comments:

  1. hope you feel better soon lovely! xx

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  2. Oh darling :( It makes me sad to think that someone as amazing, pretty and talented as you has to go through so much, but I know you'll get through it. You are one the bravest people I 'know'. You have to cope with so much, and yet you can still get through life with a smile on your face!

    Pip x

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  3. I honestly cannot imagine what it would be like to go through what you do but you do it so well! I love your blog and wish you the best, Get better soon! xxx

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  4. I don't think your a drama queen at all, actually I love how you deal with it lovely! Hope you feel better soon xxxx

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  5. I hope you get better soon!!!! You are so positive and strong and I love reading your blog!! xxx

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  6. You're not a drama queen at all,you cope with it all so well and I hope you're feeling a lot better soon lovely! xxx

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  7. Get well soon babe! Don't worry about Uni. Worse case scenario and you stayed an extra year it's one more year of putting off a real job. Win ;) Na I'm joking. It's going to be fine :) Just rest up. Very interesting post.

    Livvy x

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  8. Aww, hang in there! Get well soon!

    - Olivia xx
    http://that-is-my-style.blogspot.com

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  9. Aww, I hope you get better soon! X

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  10. Hey love...I'm really sorry to hear that you've got another infection dragging you down. You have such a positive spirit about all this stuff, but I can still tell that it's very hard for you. I'm sure that there are moments when you feel as sad as you look in that photo! Wish I could come cheer you up :) Way to be so strong though, I admire you very much for the way you just plug along!

    <3 Cambria
    jupefashion.blogspot.com

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  11. I read through the whole thing. Annoying illnesses always strike and develop at the worst possible time-hope this chest infection doesn't cause you too much distress *hug*. Your attitude is amazing, and I guess that's going to help you through life. Love xx

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  12. ah this does not sound like your having much luck or fun right now! i do hope your feeling better soon lovely, keep your chin up, maybe one day theyll invent an incredible medicen that you have to take once and will help you breath forever :) but until then, keep strong! lots of love x

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  13. that really is a lot of IVs, they not trying you on different ones to see if you can last longer off them?? really hope you feel better soon x

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  14. What a horrible timing, I really hope you get better soon and get to enjoy the last few weeks of being a fresher! Good luck lovely!!

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  15. Oh Josie you tough woman you! I don't think any of us actually appreciate what we have, our health etc. You've definitely made me re think this after reading this. I'm sure you do not want pity or people to feel sorry for you, but I'm sure you would be pleased to know that I have huge admiration for you. You seem to deal with it so well and just get on with your life! x

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  16. Aw Josie I really hope you feel better soon. It's so great that you have such a good attitude towards it all and that you write about it, I hardly knew a thing about CF before I followed your blog, and it really makes me think and feel stupid for moaning about a cold or something. Hope your ok and are able to go back to uni soon, and keep posting cos your other blog posts always make me laugh ;) hahah xx

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  17. You seriously are such a fighter! You remain so positive about your CF most of the time on here and you are definitely NOT a drama queen for having a moan. It must put such a strain on your ordinary life but the fact you're at uni, running a blog [one of my favourites in fact] + having a social life means that you're doing the best you can! [+probably doing more than some people without an illness!!] Its genuinely inspiring and i really hope you feel better soon!! Xxx

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  18. Take care and hope you'll feel better soon :)

    Sending love from Singapore, xoxo

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