Week #20

Hey! How are you? So I was doing quite well this week but then I got ill again, they think it was the flu - so now everyone has to wear masks when they come in my room because I'm just one big GERM.


Before I got the lurgy I did get to go out for a walk (or a wheel if you will in my chair) and get that all important cherry blossom pic for Instagram ;) but other than that I have been on lockdown in my room. But despite the fluey setback this week has been successful as only two embarrassing incidents happened to me so that's good! (If you're interested the first was getting caught with the worst hair ever by a very handsome junior doctor and also effing up my fake tan so bad my nurse was going to call the doctor because he thought I had a rash.)

Before I go I should mention that this week has been CF Week. Had I been at home I would have done a whole week of CF posts but no, CF actually ended up putting a stop to that. Sums up CF rather well really, it's always being a pain in the ass! It's not the inspirational thing to say, I know people like those with illnesses/disabilities to be all 'It doesn't stop me!' But the truth is it does at times. It's a horrible thing! This year I have spent more time in hospital than at home, constantly attached to a machine or two. Like as I type I'm on my overnight feed machine which is attached to my feeding tube in my stomach, I have my nebuliser on breathing in meds, an iv drip going into my veins and of course my optiflow machine on my face delivering oxygen so I can breathe. It's fine and ok, just have to get on with things and you get used to it. Doesn't mean it doesn't suck though, it's definitely not how I wish my life was. Like so many others with CF, I just wish for a 'Life Unlimited' where CF doesn't hold us back in anyway - to be able to do something as basic as breathe without having to think about it! 

Sorry about that ramble, am drugged up to the eyeballs right now haha! I hope you don't think I'm being woe is me or anything, it's not so much about me but more people I know with CF going through really hard times right now and it's just upsetting to see others go though it. If you are lucky enough to fill up your lungs with air with ease please don't ever take it for granted! 


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