Hospital and IVs

So I got my IVs two weeks ago today, and i felt so so much better after just 48hrs!! My energy came back, my appetite picked up, my cough started to die down a little, everything just started getting better! It was like a weight was being slowly lifted off my shoulders, and that's the first time I've ever felt IVs do that... Finally I feel them doing what the team always tell me they are meant to be doing! :D

Ive never been more excited to be able to have a proper shower ha ha! Ive been washing my hair over the bath and its not been a struggle, i was naughty and couldn't stand it any longer and had a shower yesterday 'coz i was itching so much it was driving me insane! But i washed my hair under the shower rather than over the bath and it wasn't a struggle as much as it has been in the past :D I still got out of breath but not as bad, which made me happy.

When i had my mid way appointment my numbers weren't really changed much. My weight was still 49.4KG and my LF was still 47%, but i explained to the nurse that when i went home on the IVs, the Saturday and the Sunday morning i threw up from coughing so much (i was definitely sure it wasn't a reaction) and so it made me very wary to do my Neb's properly if at all, which didn't help with the whole clearance of my chest. They accepted it and understood (thankfully) and wrote it on my notes. Thankfully those were the only days i was sick as after that my coughing started to get easier in the morning and more controllable for me to catch my breath.

I can now sleep at night without waking up coughing all the time, which is bliss :D my energy and appetite is still picking up, for the first time since i moved back home my snacks are diminishing ha ha! Me and mum are doing the food shopping tomorrow so ill get some more things.

I was quite disappointed today when i went for my "end of 2 weeks IVs" appointment. It started off fine, i had a session with the physio to start with and had a go on the NIV machine, (its meant to replicate the BIRD machine, if any ones tried that?). It was okay, I'm not sure of it at the moment, but the machine I used was being a bit temperamental and so the physio is going to look at my next clinic appointment and I'm going to have another go but with a better machine, and then if i get along with it, then shes going to look into getting me one for home. Which will be good, as it did work to an extent as i shifted and loosened a lot on my chest.

After that i had my clinic appointment. Which also started off well, i was in a really good mood. Got weighed, which has gone up to 50.4 from the 49.4KG it was, so that improved my mood even more :D My blood pressure and pulse was down to a more normal rate, which is another improvement as its usually racing way too much. Then came Lung Function. The dooming part of any clinic for me...
It was a little tough as i kept coughing halfway through a breath out :| But i did it all and then got the results and found out its so say dropped from 47% to 44% ! I honestly don't think the results is correct. The physio had listened to my chest and said it was really clear, and usually when my weight goes up, so does the lung function for me.

I think its because i had done all that physio before hand, even though id had a break between sessions, everything was all mixed up on my chest and so of course when i blew out quickly it made me cough and interrupted my breath out. I said to the nurse that it doesn't reflect how i feel at all. Not one single bit, and she spoke with the registrar, and i was given two options, to ideally carry on IVs for another week, or to come off them today and then come back in two weeks. I chose that one. So I'm back on the 6th August to reassess.

So between now and then I've got a lot of work to do, to prove that machine and my lungs wrong :p
But with my new found energy, it'll be easier to do this than before. Plus with no IVs happening i can go swimming :D

BORED!!

Dont get me wrong im glad to be home and everything like that, but im SOOOOO bored its ridiculous. Im that bored its making me low and fed up. I havnt the energy to do anything, including getting out of bed at a time where i feel like im not being lazy. I set myself some plans to do the night before and i wake up and i think, oh, another boring day. And ive just got no oumph to do anything.

I wish so much that i knew people around here. I used to when i was in College, but now i dont. All my friends from uni live too far away and are preparing for placement year as well. I havnt got a license or a car so its not like i can just hop in my car and drive somewhere just for something to do :(

Im that fed up i cant be bothered to do my nebs etc. Which yeah i know its REALLY uber bad. But still, its not as easy as some people seem to think it is to get the effort to do what seems a simple nebuliser. When you feel stuck for breath just sitting on the sofa, a nebuliser where im huffing and puffing which leads to coughing and then if i cant catch my breath properly throwing up (which im getting thouraghly pissed off with) is the last thing on your mind to do.

I want to go out for walks, i want to do my drawings, i want to do some of my glass painting and so many other things, but im just so fed up i cant be bothered.

Ive got hospital on Friday which isnt what the highlight of my week will be. I will not be refusing IVs this time around. But its typical i actually want them this time and so they wont be offered or "in my best interest". But im insisting on home IVs. Theres no way im going back into hospital to eat the sludge they call food, and such tiny portions for a CF patients, and then still be expected to have gained like 5 kilos in 2 days!! Ridiculous.

Im trying really hard to eat plenty. Im trying to eat little and often... Note i say trying. But its proving so difficult for some reason. I hate it!! I feel hungry and i know i want food, but then i look at what ive got in the cupboard or the fridge or something and im just like theres nothing there that i want to eat. Nothing at all. Food used to be really exciting for me, but now, i dont see what was so exciting about it. I want the food to be exciting again!! And then i get moody and i snap at the people who dont deserve to be snapped at :( I know my weights dropped and i know my Lung Function has gone down even more, but people are asking for a flipping miracle for me to be able to do everything im "meant to do" and more with zero energy all the bloody time.

Im noticing as well that my shoulders are curving around a lot more. Its disgusting, i despise my shoulders! I try and straighten my back and shoulders and then it feels really hard to breathe and so i just shrink and slouch again. Im hoping when i can, to go to town and get one of them big gym ball things, as the physio told me that some stretches on that will help my posture and i can also use it for "fun physio" if theres such a thing...

I know im worrying people, and so that pisses me off with myself even more, and then i get more angry coz i feel like im trapped inside my body that feels so weak and rubbish, and theres nothing i can do about it. Its scary.

Still well see what the hospital says. If i get IVs hopefully they will start kicking me up the butt with some energy!!