Wednesday, 16 April 2014

Half way through..

Quick gripper change today which means I'm halfway through this course of IVs - hopefully won't need anymore after the two weeks. Starting to feel a bit better. Had a few rough evenings the past few days where all the gunk in my lungs has been so thick & there's been so much that I'd have huge coughing fits where I just felt like my lungs were closing in and in. It was pretty scary as each time I tried to take a deep breath in to cough even more it just blocked from the gunk. Seems to happen in the evenings more so than the days now and is starting to get easier which is always a good sign :-)
This round of IVs have made me feel very very rough..headaches, dizziness, feeling so exhausted that I'm having to sleep after doing things and at one point they were making me throw up too so I've started taking my antisickness half hour before them which hasn't cured all the nausea but has stopped the actual sicky bit thank God! Managing to walk around easier now and do a more.
I'm determined after this lot of IVs to get in to shape and also to start feeling better about myself. Really need to boost my confidence & think more positively (however cheesy that sounds!)
Hospital is next Wednesday so fingers crossed that all is grand & I can finish this course..I'll keep you posted :-)

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Tuesday, 8 April 2014

Needing a boost

I mentioned in my last blog that I wasn't doing too well and that IVs may be on the horizon..
Oh how I wish I was wrong sometimes. I didn't exactly realise how bad I'd got. The problem is with me is that I tend to go from okay to loosing quite a bit of lung function very quickly. I had my appointment today and my lung function has declined quite a lot, down to 1.1 litres (about 30%) which really isn't very good at all. A new dr has started at the unit so I met him today - he was lovely so that's nice :-) I mentioned about my blood sugars going high, temp up etc..all usual signs of having an infection. Add my crap lung function into the mix and it was no wonder IVs were heading my way!
Luckily, he's agreed to let me do them at home where I'm happier and more comfortable. If things get even worse then maybe I'll have to stay in or meds could be added to the mix so here's hoping things start to improve.
People don't realise how tiring just trying to breathe can be..when you're puffing and panting away it takes so much energy plus the IVs don't help either. I would love to have some people feel how it feels right now because I swear most people you tell think you're just a bit tight chested and are making a deal out of it & that you'll just get better at some point. But with every infection comes more permanent damage.

I'm starting to get quite fed up of being ill pretty much every holiday break we get from work - whether it be half terms or Easter, Christmas, summer - I seem to end up on IVs, have bad stomach problems or a delightful combination of the two!

Lately I've been suffering with what I can only describe as odd travel sickness headaches but without travelling. My head hurts but not a lot, just feels all fuzzy and sore especially at the front and sides, I feel very sick with it plus quite dizzy. I get it randomly so mentioned it to Judith who said it sounds like low sats by they seem to be okay at the moment so she wondered if they may be dropping when I'm doing things or if it's just because the infection making me feel rough. So we're seeing how it goes and if it's no better after the IVs finish we'll investigate further.

First delivery of IVs tomorrow - that's the pain with being on mero as it means waiting in for deliveries every two days.
I'm going to relax for the rest of the evening with a good book & a cuppa :-)

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Sunday, 6 April 2014

Easter holidays

It can be hard to explain to someone how it feels when your lungs aren't quite playing ball. Right now I feel as though I'm in some sort of bubble and each day it's getting smaller and smaller as my lungs get tighter and tighter. Hopefully that bizarre imagery will make some sort of sense with a few of you! I barely slept last night and the past few days I've just not stopped coughing - that, teamed up with a really tight chest and plenty of crackles, just kept me up for hours despite being shattered. I did wonder if it was the Sahara dust and pollution that was over on Thursday but that's all gone now and I'm still feeling rough breathing wise. I've got a cold so keeping an eye on things for the next couple of days..I just really don't want to have to spend the Easter holidays on IVs but then at the same time I don't want to end up very poorly! I know I've got to ring Judith on Monday to book myself in for a port flush & I know if I go I'm sounding like this they'll mention IVs so I'm hoping it all clears up by then.

Guess what! I've finally been out driving in my own car - I know I've had it for quite a while but I ended up having three months off driving lessons as I kept getting sick. It's such a comfortable car to drive (a Mini Countryman). I'm back having lessons at the moment but hopefully will be able to take my test soon so I can start getting myself places rather than feeling bad for relying on lifts all the time!

Easter holidays mean two weeks off :-) (for those who don't know, I work in a school for children with Autism) I don't have much planned, just a few lunches out, visiting places, seeing people. It's nice just not having to worry about setting an alarm for work and doing what you fancy. Let's see if these lungs sort themselves out because feeling like you're going to collapse every time you cough is wearing a bit thin! Have a lovely Sunday :-)

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