CF | Clinic Appointment #3

This picture has little relevance to this post other than the fact this was the day my IVs finished so I was very happy!

So yesterday I went off to the CF clinic for a check up to check that my IV's had done the job. They finished on Sunday after almost 4 weeks and I'm happy to see the back of them! Hopefully I won't have them again for a few months because they seem to have finally done the trick. For the first time in years I have a normal BMI and my lung function is 42% which isn't it's best but last time it was about 33% so it's a lot better. I think my average is around the mid-40's although my aim is to get it into the 50's. I've done it before so I'm determined to do it again! I've been trying to exercise more, I'm good at all my treatments but terrible at exercising which is awful because when you have CF it really helps keep you healthy. So if you've ever felt bad about feeling unmotivated don't, because even with the thought that I'd get less chest infections etc I still find it hard to get off my ass! I'm not doing anything drastic, just walking a lot more and today is my first day back at work after about a month so that'll be good exercise-wise as all I do all day is run around!

I'm a bit concerned about going back though, over the last month I've gotten into a proper routine with all my physio and nebulisers and going back is going to muck it all up. Here's a rough outline of my routine at the moment (this is a nebuliser, one day I'll do a post on mine!)

  • About 9:30am: Wake up, take all my morning tablets, do two nebulisers.
  • 10:30am: Do another nebuliser and 10-15 minutes of physio to clear my lungs.
  • During the day I'll do a bit of extra physio and extra nebs if I need to.
  • 8pm: Do a nebuliser.
  • 9pm: Do three nebulisers and 10-15 minutes of physio. Take my evening tablets, make my overnight feed and get to bed!
The thing is, on the days I work I leave my house at about half 12 and don't get in until midnight at the earliest so you see how I'm missing out on all of that treatment? I have to do them when I get in but going for 12 hours between them is long, I find myself really struggling to breathe when it gets to about 10pm. Then when I do get home I end up not doing them properly because I'm so tired. The neb I do an hour before my other ones has to be done that way because it's job is to loosen up rubbish in my lungs but it takes an hour to have any effect. When I get in late I'm too tired to do it and wait for an hour so it gets skipped, meaning my physio isn't done as well and crumminess stays in my chest. After work days I really feel it the next morning because my lungs haven't been as cleared properly. I will see about changing my hours if possible but if not then maybe I need to look for something with different hours :( I only do three days a week but on those days I do feel rubbish. It's important not to let CF run your life but it's also equally important to be so on it with treatment and sometimes it can suck having to have such a strict routine but you gotta do whatever you can to stay healthy! I just wonder if I'm being too cautious. Anyway I'm rambling now so I'll leave it there!


Josie x
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21 comments:

  1. So glad to hear your IV's are over and your doing a bit better Josie- you are so brave! I was trying to figure out a job that could fit into those hours better but couldn't! Maybe something you could do just in the afternoons? I always think a dog walker would be my ideal day job, I love dogs and it would mean I was always exercising lol! Sure it's not as great as I imagine in my head though... x

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  2. So glad to read that your feeling much better and IV's are gone for a while! Also how good is it that you've got a normal BMI and good lung functioning? :) Just in time for your Birthday too!!
    Your routine is quite full on so I can see why it can become tedious but like you say, if your health is good then CF won't run your life. I guess it's a difficult balance to find all of the time but I think you're doing a pretty good job ;) xxx

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  3. Dude, I think the fact you fully recognise what you need to do, and actually want to help yourself, that is a pretty big step in itself. So many young people struggle to face the reality of a situation like this, and refuse to do anything but 'be young'. Like you said, no way should it rule your life, but it is a big part of it and maybe if you continue with your kick ass attitude then you can find a great balance.

    You shouldn't miss out on an interesting job or time for yourself and your personal projects, but it's great that you want to look after yourself at the same time.

    Are there any other career routes you are interested in? Another path to explore perhaps? Maybe this could turn into an opportunity to discover a love for something. I'm all about a new adventure these days ; )

    Keep your chin up

    Gemma
    Faded Windmills

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  4. You're such an inspiration to me Josie, you're such a brave girl and I love how you positively face your struggles and you always keep your lovely smile! I'm so glad you're better now!! xxx

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  5. Hi doll,
    I am so proud of you, I saw on your twitter about your lung percentage and your bmi - I am just so happy for you that you are trying to kick CF's butt! Keep taking care of yourself - you deserve all the best... and some nice ICE CREAM, I trust it's warm in London now :) I am out of the country atm :)
    xx

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  6. It's so good that you write about CF as it gives people awareness of the illness as I always read things on your blog that I never knew about! Sounds like you're doing so well :) xxx

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  7. It even looks like Freddy is smiling in that picture. I honestly think you do so well, Josie! You always see the positive side to every situation, which is such a rarity. I don't think you are being too cautious at all. Being healthy is so important, and when you're feeling good, it's so much easier to do all those other things that you love and want to do. I think you should always just do what you feel is best :) <3 xxx

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  8. Hi Josie, I am happy to hear that you are feeling better and that the results were positive, I hope it all stays this way. Thats a really hectic schedule, I think you will eventually figure a way around it and make it work for you. Is it possible for you to find a job that you can do from home. Like some freelance writing, telecomms or accounting type of thing. That way the situation will be more ideal and suited to your health requirements.

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  9. So glad to read about your health improvements, Josie, and thanks again for keeping us updated. And I do understand what you mean when you say you shouldn't let CF control your life, but your health should always be first. (((hugs)))

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  10. so glad you're feeling better now :) the pic is great, Freddy looks well happy hahah! Can't believe that routine you have to do every day, I can't even imagine having to do that all the time. can see why it must be frustrating, if you need to find some other work to feel better and get your meds at the right time then you'll feel much better and happier at the end of it so it'll be worth it xx

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  11. Hope it's ok to offer some friendly advice (tell me to shut it if not lol). But I really think you need better hours if at all possible. 11-4 ish sounds like it would be a good pattern for you. I've had to modify my hours because I have multiple sclerosis and work really takes it out of me (but like you I feel it's important to not let it rule my life and want to work for my sanity) I recently got promoted and it's killing me (literally) so although I have more money I'm always in bed if I'm not at work and struggling to get through each day. It's really difficult but I'm going to ask to step down (pride feeling very damaged) life is too short to push myself so much like this. Something to think about. I'd give you a job no problem if you lived nearby! I run an in house temping agency for admin staff and always encourage managers to accept people on flexible or reduced hours if that benefits the temps personal or health situation. Not surprisingly we have a happy bank of motivated hard working staff and satisfied managers.

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    1. Hi Janine! How are you? Hope you're well! Congrats on being promoted, I know it must suck having to step down but what you say is so true...and I guess that extra money is no good if you're not well enough to enjoy it! I'm going to take some medication into work with me now so hopefully it'll be a lot better but if not then I'd better look at changing my hours!
      Miss your blog btw! xxx

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  12. good to hear you're feeling better <3

    cultkid.blogspot.com

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  13. I don't think you're being too cautious for wanting a regular routine, I hope you work something out :) Love the photo, looks like Freddy's posing for the camera! xx

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  14. There is nothing wrong with a regular routine, as long as you don't get so caught up in it that a tiny deviation from it causes to much anxiety.
    I am glad you're feeling better, you can really tell in the picture, you look radiant.

    Gems x
    Fashion, Well Done

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  15. That's great news your IV's are finished for now, and I really hope your first day at work went well for you. Fingers crossed it won't mess up your routine too much, although like you said perhaps if you could get more suitable hours then maybe that might be a good route to go down (:

    It really sounds as though you go through the routines as best you can, which is admirable in itself. It seems you manage it all so well and being cautious definitely isn't a bad thing <3

    That picture is oh so lovely too!!

    Sophie xo

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  16. Yay for being healthier!! I definitely think you should look for something with more suitable hours/closer to home. It's not you letting CF run your life, it's you being sensible. I'd find those hours tough and I don't have CF! You're such a trooper. Mwah!

    Tara x

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  17. I'm so pleased that you're feeling a lot better now! I hope that you can find a way to change your hours at work. I agree with Tara, I'd struggle with those hours too and I don't have CF!

    Jennie xo | sailorjennie.com

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  18. Such a cute photo of you & Freddy! I'm glad you're feeling better & a little healthier, I agree with everyone else if you can change your hours then do, that kind of a shift would knacker me & I don't have to worry about taking meds .etc when I get home too. It must be draining! I know it's annoying being unable to do things everyone else can, I feel the same with how my fainting/fits mean I can't do things or be as independent as a lot of people take for granted, it can be so frustrating, but it's important not to burn yourself out trying to prove yourself to others too! Your health is the most important :)

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  19. I'm so pleased that you're feeling a bit better now, it's great news that your BMI is healthy and your lung function is up if not quite where you want it to be. You're such a determined lady that I know you'll get to where you want to be - if that means you have to change your hours or your job then I guess that's what you have to do. I agree with Steph, your health is the most important factor and if working those awfully long hours is having a negative effect then I don't think it's worth it. And I'm totally agreeing with everyone else - those are long hours for someone who doesn't have health issues to consider!!! xxx P.s. You and Freddy dog are so cute!!

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