Monday, 22 July 2013

Breathing comfortably is overrated anyway!

I've been feeling rough on and off for the past few weeks, but last weekend it really hit home. We'd been out for the day for mum's we started walking around Arundel Castle and it's gardens I was getting pretty breathless and although I wanted to just go in a wheelchair, I was adamant I would walk around. Somehow I managed and we stopped off at the beach on the way home, the lovely salty sea air helped and I felt like I could get a better breath in. However as we left I soon went back to feeling shitty again.
In the evening we went out for dinner and at the start I was like I'd been all day, quite tired and a bit breathy but still carrying on like everything was fine but halfway through I just felt myself getting worse and worse. It's pretty damn scary when you can notice from minute to minute your breathing deteriorating. In the end I did tell mum how bad I was feeling and tried to calm myself down.  In the car on the way home I kept getting flashbacks of when I was really really poorly and just thinking that I didn't want to head back down that slippery slope. Instead of staying up till the early hours of the morning celebrating I got home and just fell asleep in bed, exhausted from the effort of breathing all day.
I'm feeling better than I was last weekend, although even now deep down I know my lungs are struggling.  I had that Monday off work and did lots of extra nebs, relaxed and just did nothing. This weekend just gone a similar thing happened and I just felt horrendous again. I know it's very hot but I feel like I have a's a different feeling to 'just feeling hot from the weather'.
I've got hospital next Wednesday for a Kalydeco check up so I might speak to them about possibly starting some IVs for two weeks - although I am tempted to ring before then, possibly Wed after work to start some early if I feel worse. I'm feeling pretty dizzy and spaced out this evening so I'm not sure if my O2 levels are a bit dodgy so I'll see how I go and either call early or speak to them next week.
What winds me up is when people go 'ah but you're carrying on with everything you must be ok' I appreciate if I was VERY poorly I wouldn't be carrying on with things BUT just because I am doesn't mean I'm not finding it hard to breathe. I carry on because I want to and hate letting people down. All the time lately every breathe is feeling like a lot of effort - if I said every time something was a bit of a struggle people would think I was making it what's the point in telling them? 

Only two more days left at work - a bonus to working in a school means 5 1/2 weeks of summer hols!

We'll see what happens and I'll update you next Wed :) Thanks guys & girls


  1. Hi Grace. I am in my fifties with CF. I know what a pain in the bum having ivs are but don't put it off. I have done so many times and it just means feeling rubbish for longer. Phone the hospital and get started on them or at least take some oral antibiotics and get that infection kicked into touch. Hope you're breathing better soon.

  2. Completely with you there on the whole 'not letting people know everytime something is a struggle'. That's what I do and then find it really difficult to actually admit it when things are particularly bad as I feel like I'm making a big deal or that I have to persuade people I'm actually ill as most of the time I just get on with it. So annoying. Jackie x