To say this last week has been difficult is an understatement. I had an amazing holiday in Cyprus and really didn't over do it, but it just seemed to take its tole, then work was very stressy for the first 3 days of been home and so when thursday last week came and i finished my shift at work my body just gave in!! I had planned to go with my friend for my first gym experience, because it's a little scary going alone, but there was no way my body was gonna let me. I came home and sat on the sofa, n that's where i stayed all night. I knew IV's were on the card, i'd already upped my steroids to 20mg and put myself on Cipro, Dr Jo (me) is very good really at prescribing, but you know sometimes it's just not gonna be enough. I should of rang friday morning to book my IV's but wanted to rest and just give the Cipro n Steroids a chance.
I was looking forward too my weekend, Friday I was going out for a curry with Steve and his friends for his birthday, so I spent all day in bed, just a little trip out to get my nails done, needed a little TLC! :) I got ready and actually cause i'd had a lot of rest felt ok for the night, i drank a whole bottle of wine, prob not the best idea, but sometimes i think CF is enough to turn ya to drink n hey think of the calories i packed away! Curry and a bottle of Wine!! hee hee, i can justify everything.
Shame I couldn't justify it in the morning, till about 2pm i stayed in bed, resting, n when the hangover wore off, i still felt crappy with my silly lungs. Steve was pretty hungover too, so we had afternoon on sofa watching Flubber of all things, you really know you feel rubbish when you watch them kind of films.
Sat night was Gem and Gaz's Wedding Reception at home, it was for their wedding that I went to Cyprus, which was amazing day in Cyprus.
I went on holiday with Steph my best friend, we had a lovely time and staying in a lovely hotel with breakfast to die for, i'm still missing the pancakes every morning now, its just way too much effort over here to make them for breakfast. I ate really well on holiday, put nearly a kg on, normally i loose weight on holiday cause i'm not doing my feed.
So Sat was the wedding reception at home and eventually i found the energy to get ready, was a little late, but least i made it, it was a struggle, i knew my lungs were been pretty naughty. On the night, i decided to drive, a few cokes n i had some energy, i do like the dance floor, but i had to just dance to songs i really liked, i had created a new dance, the chest pain move, one hand holding my lung n the other doing some crazy move! Had a good night though, even though it was hard work.
Sunday i had planned not to do or go anywhere, my phone vibrated and then started to ring, but i ignored it, then i rolled over just to check who it was, it was 10am so it wasn't that early but i was still tired. It was a message and missed call from Gem and a message. The message that read "Nat has passed away". I sat bolt upright and hit the call button! We all knew Nat was really poorly and we all know how cruel CF can be, but i guess deep down inside you hope for that miracle. It was kind of an expected shock, the whole time i'd been in Cyprus, i'd been checking facebook and sending texts. When i got back life distracted me a little from been so on edge which i think it's why it was such a huge shock.
Me and Nat had a strange friendship, i guess you'd say we were CF friends, not really talking about other parts of our lives, more about the IVs, lung function, feeds and just the general crap that goes on at the hospital, she was a very private girl, not like me i broadcast my CF way too much sometimes. Why i can't just answer the question people constantly ask with a "Yes i do have a bad cold/cough" I don't know, instead i'm like "Oh I have Cystic Fibrosis". I wouldn't say i'm looking for sympathy, cuz i don't like that one bit, it's just i've never hidden it. People tend to know me for an hour n they know i have CF, i've normally coughed n they comment or its just come up in conversation! I find for me it makes life easier, i know not everyone is so open about it! I think it's just the way i've been bought up, at school all the kids knew i had CF made it easier when i had to scoff all me treats, drink that horrible orange juice with maxijul in and stay in at dinner time till i'd eaten all my dinner, god dinner ladies r crueler than kids!
So this week has been a struggle, i knew i needed IV's so tuesday i started Ceftaz n Col at home, my lung function was an all time low again of 27% which kinda scares me, i'm not ready for my lung function to be that low to be honest! Its was 37 before i went Cyprus, so the 10% drop quite a lot n quite fast! My lungs were filling fast with crap n mornings getting out of bed in the morning to go work was a real struggle, i was coughing my guts up just making it to the kettle to get my much needed cuppa tea, then puffing n panting back up the stairs with it to do my ivs, nebs n get ready! I was nakered by time i was ready!!
I've even had a trip to walk in centre as i thought i'd got a UTI, i went loo 3 or 4 times at work n was a reddish ting to me wee, they tests my wee n said it was clear, no infection, bit protein but no blood but it looked like blood shud be present. I had kidney pain too in left kidney, so yesterday i my day off i dragged my little ass up to the hospital to get checked out, my wee still a mystery, still same results! Turns out though after a little brain wave from the SHO that i've actually been eating too much beetroot!! Yes beetroot makes ya wee red, it's a no brainer really!! Quite funny, but quite relieved it was just the beetroot! lol! It's my nan's fault getting me addicted to Cheese Spread on Toast n Beetroot Salad on top!! Weird yes i know, but don't knock it till u tried it, i been eating it every day for breakie! I find breakfast the hardest meal to eat, i tend to have fads on something, eat it constantly everyday for a month then i don't know what have when i'm bored of it, so i'll have a week or too eating bickies for breakie before i find something knew to fad on!!
The docs decided i needed come in especially after i told i really was struggling at home, i've not been in here for a year! But here I am, i've been on drip for 18hours so far, peeing like a trooper, so annoying when u attached n need a wee!! I think i really needed to come in, i've cleared loads with physio today, not had percussion for years i swear i'm gonna wake up battered n bruised tomorrow, she really pummeled me!! But guess it's worth if if can sort these lungs of mine out!
I've had so many iv courses this year at home, n i'm so tired of them not working properly or me only feeling better for a few weeks!! I hope this time i really do sort myself out, or they sort me out, at home it's so hard sometimes cuz it's all on you to make urself better!! So i'm gonna rest, let someone else pump drugs in n let physios treat me n be a good girl for a change, just hope it works!! :) xxx
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