Tuesday, 18 September 2012

Too many emotions..

I'd like to begin this post to ask you to remember my friend Sam, her family, baby boy & friends in your thoughts and prayers. On Monday I heard the sad news that my lovely friend Samantha sadly lost her fight with CF. She supported me so much when I was poorly in hospital and we had so many giggles whenever we were in together..talking about turning our fridges in the hospital rooms into cocktail bars and laughing about silly doctors who asked us 'how many times we coughed in a day'. I'll miss you lots and miss chatting in the corridors, thank you so much being there for me. Breathe easy now sweetheart xxxx

Please please please sign up to become an organ donor, spread the word about Kalydeco and raise more awareness about Cystic Fibrosis..not enough people understand how serious this illness is.

I spent today at hospital, another clinic visit. Wasn't very nice going there after the news yesterday but somehow I managed it. And I think Sam must have been looking down on me and giving me good luck as my lung function had gone up! Which completely surprised me as I've been having lung pain since Thursday and was convinced I'd be back on IVs again. So to go and have that happen, weight is stable and everything go okay was such a relief! 
Paddy was flushed too (this basically means that they put a gripper in and put saline and heparin in which has to be done every 4-6 weeks to make sure that the line inside doesn't get blocked).

However, they wanted me to start back on nebulised Tobi which I was on over a year ago but stopped. When I had Tobi IV I ended up permanently dizzy for nearly a month and couldn't walk straight or anything! Anyway, I gave the nebulised Tobi a go..after 15 minutes we did my lung function again and it had gone down a fair bit which proved that my lungs didn't like it at all. So the doctor came back and said 'im sorry for torturing you, we wont give you that anymore..maybe next time you come back we could try it mixed with ventalin to see if that stops you becoming tight chested' so I thought that was a good idea :) But just as I was about to leave I started swaying and walking like a complete drunk! So ended up sat down for another half an hour as I couldn't stand up. At least my mum and the nurses found it quite amusing..hehe.

Mum, however, got me a lovely cake from Patisserie Valerie 

Too many emotions this week & it's only Tuesday

Here's a couple of pictures from over the past week.. 

Friday, 14 September 2012

Sore lungs :(

I've still been busy at work, had a friends birthday BBQ the other night as well which was lovely. But yesterday my top right lung was quite sore :( it seems to be a bit of a weak place as whenever I get this type of lung pain it always starts up in that corner at the back! Little bugger. Woke up this morning hoping it'd be gone as sometimes it just lasts a day but no, naughty lungs are still playing up! There's a dull ache there all the time but when I cough it hurts quite a bit now! Despite that, I feel okay in myself..just very very tired. So I'll see how it goes over the weekend, my hospital appointment that was meant to be today ended up changing to Tuesday! Obviously my lungs realised this so decided they wanted a bit of attention. Hopefully it'll be gone by Tuesday though. Time to step up nebs, do some physio and see if I can sort myself out for then :) Still off to work though, gotta keep plodding on! But thank god it's Friday! 

And to top it all off I have the most poor excuse for a sore knee. Last night I managed to trip backwards over a tissue box onto the sofa, thought nothing of it until I went to walk later on and realised my knee is actually quite painful. And it's still sore this morning! But I can't really say I've hurt my knee because I tripped over a tissue box can I?! Such a clumsy cow..

Anyway, have a lovely weekend! Let's hope these lungs stop being a pain (literally!) and improve before Tuesday comes :)

Monday, 10 September 2012

Busy week!

Sorry I haven't blogged in quite a few days, been fairly busy!
Here's a few things that I've been up to.....and of course lots of pics to go with it all. You know what I'm like..
One thing I've learnt this week though is that clubbing is actually really good physio! If I do my DNase neb before I go out, the amount of dancing and walking etc shakes everything up your lungs and the heat too.. it all gets you coughing loads! Who needs to do altergenic drainage and percussion anyway! ;) 

1. I made some delicious smoked haddock fishcakes. Definitely going to make them again..

2. I had a lovely time at the Paralympics seeing 
 the track and field events in the Olympic Stadium. It really was amazing and we managed to see Jonnie Peacock win his semifinal :) We did go up by train which is fine but then had to go on the underground which was very very busy; but I was actually okay (for once!) And I didn't end up with a cold! Which is amazing because nearly EVERY time I go on the tube in London I end up catching a cold or a chest infection so I'm pretty happy about that! 

3. We've had our kitchen redone and it looks LOVELY! So good to finally be able to cook in it :) So I've cleared a cupboard out to pop all my medication bits and bobs in so it's all tidy..I took my big basket out with my morning meds in and look who jumps into the cupboard to hide.. 

The little pickle! 

4. On tuesday I started back at work! Met my new class that I'm working in on Wednesday :) They're lovely! Although after only a few days I am shattered already! Coffee is certainly helping in the early mornings :)

5. After a busy week and everything I had a relaxing day with my family on Sunday at Nans.. 

So for some reason I had a little bit of a high temperature this morning..but I feel okay apart from my chest being sticky on and off through the past few days..bloody lungs! But I have hospital on Friday so we'll see how everything is then! Fingers crossed for decent lung function and no IVs!! 

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 feel..do 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 normal..it 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!