Thursday, 25 March 2010


Clinic was interesting, as always. "It's really a bit of a mystery then why you're feeling this way, isn't it?" - well, yes, if you say so!

My FEV1 was up to 3.25, FVC up to 3.65 and my O2 sats were 98, down on the 100 I got at my last visit, but that's just trivial. It took me coughing and hacking like a minger all the way to the hospital to get my chest clear enough for that right enough. Either way, yay! Makes my LF for today 89% which is normal range for me but up on recent LFs.

Still, I have been put on azithromycin daily for 2 weeks, movicol daily for a week, cefuroxime for 2 weeks and diclafenac and omeprazole indefinitely. ECG was normal so they've referred me for a 48hour tape, chest x-ray was "lovely". Not quite sure where we ended up in terms of a referral to rheumatology but nevermind. I've to have assessment done for DNase and/or hypertonic saline so that'll be another treck. Found out as well that they suspected a chest infection at my last annual review...why did nobody tell me this? Fair enough, my chest cleared, but I would still like to have been told!

So, away from hospital appointments. James spoke to me this morning about what he'd read in the "cystic fibrosis and relationships" book that Lisa gave me. He apologised if I felt he was blaming me for our lack of intimacy lately and said that he really does try to understand but that he obviously doesn't. I know he doesn't, and I know he doesn't mean to make me feel bad, but fact is, he does make me feel bad. Makes me feel like I'm useless as a girlfriend and that after 5 and a half years he might actually get fed up and just walk out on me. Seriously though, who wants to get intimate with someone when you have a swollen, painful tummy and pain all over? It's just not far as I'm concerned anyway, it's certainly not what I want when I'm in pain! A hug and a kiss, yes, but that's it thanks.

My boss was quite clearly pissed at me today when I phoned in to say I couldn't make it in on time...first time she's let it show that she hates me phoning in sick so much and causing staffing problems. What am I supposed to do when the hospital has a power cut and causes everything to over run? Just leave? No thanks, my health is more important to me than work. It took years and years of hard hard work to get my lungs in as good knick as they are and I wanna keep them like that.

Till another time, oh journal of mine.


  1. At least he's realising now how he's making you and tings might start to change. I can't say I ever had that problem with Gregg he was always really understanding and didn't mind me wearing oxygen and my feed when we got intimate!! Good luck to me finding another one like him :(

  2. God my keyboard keeps missing out letters!!