CF | Clinic Appointment #2

Post-clinic fry up, which is becoming a bit of a thing now...not complaining one bit!

My ear after my blood test!

Hi! So yesterday I went to the CF clinic, I finished IVs at the weekend but I have to start another course of them this Thursday. My blood test results showed that my infection levels are down but for some reason I'm still really breathless. My oxygen levels are 93% which is good (although they could be better!) and I had a blood test in my ear to test how much oxygen I was getting and that was fine too (they take it from your ear because they want to test the blood from an artery in your neck and the ear is the closest place.) But my lung function was crappy, it was just 93% when usually I'm like the mid-40's. I'm not really sure if that was accurate though, I'm really bunged up with hay fever so I think my blowing technique was off (lolz.) I got some new physio techniques and I'm going to change around some of my nebulisers so that alongside my IVs should shake off this chest infection once and for all...well I hope so, I've had it over a month! I'm glad that this time I can just do home IVs so no hospital stays for me thank goodness!

So I'm doing more than double the amount of treatment every day that I usually do so as you can imagine I have hardly any time for anything else. I'm completely exhausted, I feel all floppy like a rag doll haha. I don't mind doing all the medicine and feeling tired, I have to do it so there's no use in feeling annoyed but when I'm stuck inside for a long time revolving almost my whole life around CF it makes me feel very anxious and nervous and a bit afraid but of what, I'm not too sure. Not my health, I never worry about that...I think it's more like worrying about the future and working and things like that. Pointless really but I can't help it. I'm worried I won't be able to be a 'grown up' if I'm just stuck indoors ill most of the time if you get what I mean? Like my life won't progress. I'll get over it soon enough, it's just at the moment I have a lot of time to just sit and think which I think is driving me a bit crazy. I just see other people my age doing all these things and I want to be doing them too so it's just frustrating. I can't wait to go back to work and have a bit of normality back! I'm feeling a bit cut off from everything, it's been this way all my life (like throughout school etc) because of being stuck indoors sick but it's not something you get used to...you still feel sad and left out of things. But the one thing stopping me from going cray cray are my family...they're so good to me, they're the best in the world!

Josie x


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21 comments:

  1. Glad to read you can do home IVs again, Josie, and that you have such a great support system....(((hugs)))) Thanks for keeping us updated.

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  2. Yes, I can imagine :( I really hope you can get back to normal as soon as possible! xxx

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  3. <3 I really hope you're feeling better again soon lovely lady xx

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  4. Ah Josie, I hope you feel better soon, put your feet up with plenty of glossy magazines.
    You have so many people that want to help you and be there for you, so you are never alone!

    Gems x
    Fashion, Well Done

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  5. I hope you feel better soon Josie and can get some normality back. I think you're such an inspiration, seriously. You do so well to get on with it all despite how hard it must be sometimes. I bet your blog helps so many people. Keep treating yourself to those post clinic fry ups too! I fancy one now myself but have no excuse... I'm sure I'll find one haha xx

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  6. Ah, I know so much how you feel about nervousness, especially being scared for the future. I had a big panic and cry to my mum just last week over it ("I don't wanna be sick!!!!" - the words I uttered between sobs). I was talking to my doctor about the anxiety and sadness I've been feeling over it, and the thing is I'm not really that upset that I'm ill - it is what it is, right? - I can cope with that for now, but it is scary to think of the future and how life might always be that little bit more difficult for me than it is for others. We do live in a pretty ableist society - some of my family still judged me for not having a job last year even though I was really sick! It was like they erased my illness and somehow found it easier to view me as lazy or avoidant, but I guess my illness being undiagnosed and a continual medical mystery it makes it really hard to make clear to people what is wrong with me and why I can't function properly all the time.

    Sorry for the ramble there, but I can definitely relate! Being cooped up especially, it's such an odd sensation. Life tends to rush by without me actually having done anything, and at other times it's so slow and boring. Ah, health. x

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  7. Ahh god, doesn't sound good! but at least you'll be at home with the fama lam and Freddy. I think everyone is petrified of the future to their own ways, heck, I've got to find a job in June and I have no clue where to start! I always go by the saying that it maybe crap now but the good stuff is waiting for you in the future and it's gonna be worth it! Fail that, Pinterest always inspires me! haha. A good family support is amazing too :) Sending loads of hugs and love your way lovely! xxx

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  8. Hi Josie, Oh no to hear how exhausting the treatment is, take this time to rest and enjoy being spoilt at home. I never even knew you could get a blood test done in your ear, is it extremely painful? Don't worry about the future and work, all will work out in its own way, concentrate on getting better for now, and I hope that you do soon. Hugs doll

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  9. Your family sound lovely but it must be so frustrating being inside all the time, I'm sending lots of love your way :) I hope you're back to normal soon! xx

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  10. Your so brave josie, I really admire you! I hope you're feeling more yourself soon :)

    Julia xxx

    inthe-loop.blogspot.com

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  11. It's good to have family that helps you. I hope you get better soon, wishing you plenty of rest this week.
    /Madison

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  12. Ah Josie! I really hope your lung function improves STAT. You're such a trooper. Thank Pattz for Freddy dog and your familia.

    Tara xo

    P.S I'm glad you liked my outfit from the other day, you totally inspired that look!

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  13. Oh Josie, I really do feel for you! I wish I could just take it all away from you. You are so brave and I admire you so much for that - I hope that fry up was a little pick me up for you. Don't worry about becoming 'stuck' here with your life. Life is always ongoing and even if you feel like you've made no progress with life, you'll look back and see that those small things were actually something much bigger (cliche but true!).
    Sending lots of love xxx

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  14. I'm glad your on the mend now lovely and you've got your appetite still, I won't pretend I know how frustrating it is right now but I hope you know you have lots of people on here to chat to whenever you need to sound your frustrations, try not to worry as much about it all, concentrate on getting yourself back in tip top shape, so glad you have a great family around you, they always help make things right :) x

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  15. You'll get a little bit of normality back very soon, I'm sure of it! <3

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  16. Aww sweet <3

    Like people have said, you are so brave with a brilliant attitude and that courage and strength will give you the bright future you more than deserve! Glad to hear no more hospital stays and that you can do your IVs at home. As for the fry ups, flippin' go for it ;-) Your family sound amazing, but I bet they feel the same way about you! xo

    Sophie <3

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  17. I'm sorry to hear you're having such a tough time Josie, I really hope this chest infection clears up with the next round of IVs. I'm glad you can do them from home, even if it does suck to be stuck indoors. Though I can't relate to your CF, I can empathise with the feeling that you're never going to be able to lead a 'normal' and 'grown up' life. When I started with the vertigo I was quite lucky that only the one time did it stop me from going to work, but I only worked about 12 hours a week then. I do 20 now, and I get on fine but I'm always exhausted after a whole day in work which sounds so ridiculous when most people are working 40 hours a week. Every time I think I've dealt with all of my health issues the best I can, something else crops up and it's more hospital appointments. So to know that you'll never be free of CF must be quite daunting, especially at times when you have too much time to think. I really admire you and the way you deal with CF, trying to lead the most normal and best life you can, and still going to work! So many people nowadays would just give in and sit indoors all the time feeling sorry for themselves, but you're one of those few people whose determination is amazing. I hope you can invite your friends to see you, when you're not able to get out and see them. Hope you're better soon lovely, sorry for what turned into an essay!!! xxx

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  18. I agree, our family is the most precious thing which we ever had, we should be thankful and cherish them, because when things go really wrong only our family would never let us down. I hope you will get well asap! Take care;)

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  19. ahh those english shortcuts. I didn't get what those ,,CF mean'' so I went on google. It didn't explain me a lot, so I changed the language on Polish, and finally I got it. Josie, your awesome, very brave and strong women! :) I believe live will bless you in soooo many other things!:) Don't stop dreaming and don't feel down. You are amazing!

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  20. i can't imagine what it must be like to go through this everyday but it always amazes me how positive you are, even now saying that you're anxious about the future you still find a silver lining! you're awesome and i'm sure you'll do just fine, you definitely deserve to :) x

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  21. I'm pretty sure you will get better and better Josie :) Stay strong xx

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