Sunday, 29 May 2016

Week #22

Hey! How are you? So I'm still in but I got to see my Freddydog twice this week so that was good. Made him wear a daisy chain crown, don't think he was too impressed though.

Not much has gone on, the plan is to finish ivs this Thursday and if I'm ok over the weekend I can go home. Last time I only managed 24 hours off ivs so I'm really hoping I'll be ok this time because I miss home so much and I'm starting to feel so trapped in the hospital haha! But luckily I can go out for the day tomorrow to my aunts house, I'm so excited because other than going to the park behind the hospital I haven't left this place for six weeks. She's having a BBQ and I can't wait to stuff ma face like Henry VIII and spend time with my family.

Before I go something kinda cool happened - the NHS Organ Donation Facebook page shared a little thing about me and it's gotten 2.9k shares so far! How great is that that people are raising awareness of organ donation and cystic fibrosis? Very grateful to them! I'm glad I shared it too because despite being so open about CF on here I don't think I'm that honest in real life. I mean I tell people I have it but I kind of downplay it because I don't want to look like I'm putting a downer on my life or being attention seeking haha. But it got shared by a lot of ex colleagues and school mates and I think it gave them more of an understanding. It also showed me that people don't think I'm attention seeking or whatever but are actually really kind and want to help. I do think there are far more nice people in the world than mean ones. Anyway this is the post if you wanna see it

Hope you're well! What are your plans for the weekend? 

Sunday, 22 May 2016

Week #21

Hallo! How are ya? This week has been a mix of highs, lows and a bit of weirdness also. And cake too of course. 

Things were going good in the week, I was no longer a germ so people didn't have to mask up when they came into my room and my infection markers were all coming down nicely. On Friday they stopped the ivs and the plan was to see how I was off them before they sent me home. 

So Friday was an excellent day, first of all I did a bit of filming in the morning - get me haha! The physio wanted a video of me doing my breathing exercises that I do everyday to clear the rubbish off my lungs to teach the other physios how to do it 'cos apparently I'm the best in the business lololol. How is that for a talent? It's nice to know I'm good at something I guess. But I thought it'd just be a physio with a little camera but no, it was a man with a proper Nikon thing and tripods and microphones and I was just like oh gawd because I didn't have any make up on and my eyebrows ain't been done for over 8(!) weeks and they just kept saying how crisp and sharp the film was :( So I'm looking grim, coughing up on camera and because part of my physio is blowing my nose to clear all the airways they got a nice close up of that too. It was weeeeird and I'm absolutely dreading watching it back. But it's all for a good purpose, I'd do anything for my physios because they do everything for me - they're amazing! 

Then in the afternoon it was really exciting because a lovely lady from the optiflow company came to give me a machine of my own to trial at home! The optiflow is a machine that delivers oxygen but at a higher flow rate and is humidified so it's warmer (normal oxygen is cold air going up your nose which isn't always pleasant.) The hope is that if I get this at home I'll be able to do physio more effectively and just be a lot more comfortable in general. It may also mean I spend less time in hospital as its one of the main reasons I'm here so much, which would be amazing because this year I've spent more time here than at home. I'm so lucky and grateful for the chance to try it out! 

So Friday was going really well and the plan was home on Tuesday but yesterday things went a bit pear shaped. I got a temp and my heart rate was very high then my bloods came back with high infection markers so I'm back on IVs and probably won't be going home next week now. To say I'm gutted is an understatement, in 8 weeks I've only had four days at home so I'm very homesick. When the doctor told me I was fine because my cousins were here so we were just joking and stuff but when my parents came I did that thing where you're upset and take it out on them, TO MY SHAME. I was so ridiculous, I snapped at them and shut myself in the bathroom crying for like 20 mins with no oxygen - smart move -_- Then I came out and was like 'I'm sorrrrry, I just want to go to bed and watch Shakespeare!' :') Seriously, what the hell? I was already having a mini pity party that day anyway because I was missing out on my best friend's birthday thing last night so I just got pushed over the edge haha! So today I've woken up looking ugly af from crying which has made my lungs achy too, I'm such a n00b. But it's out my system and I'm fine with it now. 

Well I've definitely rambled enough today so I shall leave it there! Hope you've had a good week! 

Sunday, 15 May 2016

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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