Monday, 3 September 2012

Running on 'autopilot'

I'd done quite a few 'happy fun going out-y' blogs so I thought seeing as this is a CFy blog it was time for a more serious post!! And there's a little idea for you do to at the end of the blog too :)

I sometimes think us CF-ers have some sort of superhuman strength! No, we can't fly or things like that but the amount of shit we see as 'day-to-day' and 'put up with' is actually quite a lot that 'normal' people would just complain about all the time!
There are some days (and I've felt like it the past couple) where I just feel like I'm running on some sort of autopilot..I feel quite sleepy but not able to actually sleep well, my chest is blergh but not bad enough for me to think 'oh crap better get down the hospital' and you just feel like there's a little switch in your brain that turns on just to keep you going when most non-CFers would probably have a day in bed and say they feel ill. You just kind of learn to 'get on with it' and I swear you put up with a lower feeling of normal. If I wake up, chest is alright but not amazing, I have a little headache and not tonnes of energy I still think 'ah I feel pretty good today!' so in a way I think it makes you a lot tougher both mentally and physically as well!

I think that's where the difference is, I've had people complain endlessly about having a cold..and I'm sat there like 'oh my gosh a cold is fine! Try having a full blown chest infection and being so breathless you can barely talk!' or people moan about having to take like two paracetamol when I'm necking down tonnes of tablets a day! But it's hard to remember that that isn't the 'normal' thing..I see taking tables, doing nebs, doing physio, having 6 hours worth of treatment a day, going to hospital all the time and staying in as 'everyday' and not an odd thing! Whereas so many non CFers get freaked out by the words 'blood test'! I've dosed myself up to the eyeballs with painkillers, whilst on really heavy IVs, finding myself feeling really tight chested and knackered yet still managed to go out with friends for the evening because I hate missing out on stuff and letting people down last minute. I just WISH for a few minutes you could let someone else FEEL what it's like day-to-day AND when you're poorly because then maybe people wont think 'oh she's just moaning from a cold' when you feel like death or 'she's managed to get out so she must be fine' when actually you really should be in a bed resting but you troop on to make sure you can see people as you hate letting people down. Because I swear some people think you make up how you you really think I'd like to have CF? Another hilarious comment is 'you are so lucky you have CF it makes you skinny' errrm? Are you sure it's lovely that my lungs are screwed but at least I get a lovely figure from it? Well no actually, I'd rather be a little podgier thank you ;)

I once heard from a doctor that a non-Cfers 'tired' is like a CFers takes so much energy out lungies to breathe that we're never at 100%. And the amount of treatments we do. I counted that when on IVs I did MANY hours of treatment a day.. 
Nebulisers: couple mins to set up and get meds for nebbie, 5-10mins to do, 5mins to get hot soapy water and pop in bowl and tidy everything away, leave it to soak, then another few mins to wash out. And thats at least TWICE a day, can be a lot more when I'm really poorly.
IVs: well these can take bloody hours sometimes! Most of the time (including preparation time for all of it like getting meds set up, washing hands thoroughly etc) it takes a good 1 1/2-2 hours TWICE a day. Sometimes thats 3 times a day again if I'm really poorly.
Tablets: well there's millions of the buggers! So it takes a good few minutes in the morning grabbing them all and sorting them out, remembering to take them at different points in the day and before I go to bed and everything
Physio: Ok admittedly, I could do this a little more often as I don't do it EVERY day like I should. Mainly just because when I'm feel okay, I forget to do it as I'm not thinking 'oh gosh, I feel rough really need to shift this rubbish!' Usually I do about 15-20mins of breathing, sometimes 30 minutes of percussive physio on top of that when I'm feeling quite chesty. But you can do a good hour twice or more a day when unwell. 

Another thing is hospital visits..I swear that place is like a second home and the nurses and doctors are like a second family! I can go a good month without a checkup when well, I think last year the longest I managed was 3 months without an appointment :) But when on IVs you have to go every 2 week as they need to review you and possibly change what IVs you're on or stop them if you're well enough! The longest I've spent in hospital is the 2 weeks in November..the other times it's only been about a 1 week. (here's me saying only, most people would cry over one night!) but it is a lovely unit! I get my own room, en suite, widescreen tv, sky, a Wii, free wireless, telephone, fridge, wardrobe. There's also a kitchen so mum can cook me something (us CFers aren't allowed in there due to cross infection) and I'm allowed takeaways in there and visiting is pretty much any time in the CF unit so I'm VERY lucky :) 

Anyway enough jibber-jabbering. My lungs have been feeling quite 'sticky' past couple of days so I think stepping up the nebs and doing some extra exercise will do the trick.. I have hospital on the 14th anyway so if not I can talk to them then :) 

I will leave you with one final thought..I was once told that breathing every day for someone with CF is like a non CFer breathing through a straw. So I test you to get a straw, breathe ONLY through that..go for a run up and down the stairs, sit down for 20 minutes, run about some more and try and do your day to day activities and see how much effort it is just breathe..and that's how its like when a CF person is feel GOOD! 


  1. LOVE IT BABES!!! Absolutely fantastic!! Oh and FYI I can fly!! Lol xxxx

  2. Really great post. It really does put life into perspective and make you think before you moan about a simple cough! I think anyone with CF and continues to live a 'normal' life, is nothing but amazing! xx

  3. Hi Grace, I recently found your blog and I too have CF. I look forward to following your journey. I invite you to check out my blog also!

  4. I can't imagine what having CF must be like, I never realised how many treatments went into it! Sophie at Sophie Rose x

  5. Charlotte mcloughlin6 September 2012 at 14:28

    It's like you took the words out of my mouth and wrote then down! I would love the girls I work with to spen one day in our shoes and still manage to chase around 2/4 year olds and feel fine after! I'd challenge them to do it all whilst breathing through a bloody straw whilst they are at it! Haha week see how they shrug off our oh they are ill AGAIN! I'll look forward to reading more :)

  6. Wow... There are so many thinks I have to change about myself RIGHT NOW. <3