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'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 up..so 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