I noticed last night that if I relax my abdominal muscles then I can't breathe as well. Turns out all that dancing I did really helped me open up my rib cage using that group of muscles and surely that's part of the reason my LF is so high? It took me a while to figure it out and it was quite scary at first but really it just means that I need to have them pulled up at ALL times, no rest. Fun.
As an aside, a film recommendation: An Education. Excellent film.
Ah well...might experiment to see if relaxing that group of muscles affects LF...just curious. Probs a bad idea actually...what actually goes on in my head?! lol.
Bye blog.
Wednesday, 31 March 2010
Tuesday, 30 March 2010
work
I spoke to 1 of the senior practitioners at work today. He allocates my shifts each month for me, so I thought he'd be a good person to start with. I asked him what he thought my chances were of getting a transfer into 1 of the offices, and also who I could speak to to find out more about transferring. So, basically, I am going to speak to head of HR about whether it's even possible/if there are any vacancies at the moment and see what she says! I think they must be able to transfer me, cause they put all the pregnant women in the office, regardless of experience, as it's too dangerous for them to work on the floor. I worked in a bank and in a call centre so surely that counts as having office experience? I can use all the office programmes and have an excellent telephone manner *haha*
If nothing comes from that then hopefully I'll find something else.
In the meantime, he's gonna try and accomodate me a bit better. Let me away at 8pm whenever it's suitable and try and offer the 11 - 7 shifts to me if I'm available for either an early or a late shift. I just explained that obviously I'm not doing as well as I was when I started the job, and that I get really tired working shifts. Having to get up early to do meds etc before an early shift (which starts at 7.15am!) is just not on, and getting home at 10.45pm after a late shift is hardly ideal either. The days are too long and I'm too tired for it.
I don't particularly want to stop working on the floor, I really enjoy working with the guys most of the time, but it's not easy. Having my hair pulled and being slapped etc has lost it's edge! haha. No harm to the boys, they really are amazing and they can't help how they act, but it really does get to you after a while.
Ah well!!
If nothing comes from that then hopefully I'll find something else.
In the meantime, he's gonna try and accomodate me a bit better. Let me away at 8pm whenever it's suitable and try and offer the 11 - 7 shifts to me if I'm available for either an early or a late shift. I just explained that obviously I'm not doing as well as I was when I started the job, and that I get really tired working shifts. Having to get up early to do meds etc before an early shift (which starts at 7.15am!) is just not on, and getting home at 10.45pm after a late shift is hardly ideal either. The days are too long and I'm too tired for it.
I don't particularly want to stop working on the floor, I really enjoy working with the guys most of the time, but it's not easy. Having my hair pulled and being slapped etc has lost it's edge! haha. No harm to the boys, they really are amazing and they can't help how they act, but it really does get to you after a while.
Ah well!!
Sunday, 28 March 2010
a wee photo
An old photo of me having IVs, proof that I needed them at 1 stage. I dread the day I need them again, what a hassle.
Saturday, 27 March 2010
feeling...?
Well...really just feeling disheartened.
CF can be so unforgiving. Eva passed away, and as much as I didn't know her (I only started reading her blog recently), I really feel that she was, and is, a huge inspiration to so many people. It has to be too soon for her. But that's the way of the world and some people are taken from us too early. I cried when I found out. That's 2 people in a week...
This is why I stayed away from the CF bubble for so long...it's hard. It is amazing to be able to talk to people who understand what you're going through, and their advice is so greatly appreciated, but it's hard when people pass.
"Healthy people are right namby-pambys compared to us lot." A quote from the forum. She's got a point, it does take strength, even for someone considered relatively healthy with CF, to cope with all the things it throws at us.
CF can be so unforgiving. Eva passed away, and as much as I didn't know her (I only started reading her blog recently), I really feel that she was, and is, a huge inspiration to so many people. It has to be too soon for her. But that's the way of the world and some people are taken from us too early. I cried when I found out. That's 2 people in a week...
This is why I stayed away from the CF bubble for so long...it's hard. It is amazing to be able to talk to people who understand what you're going through, and their advice is so greatly appreciated, but it's hard when people pass.
"Healthy people are right namby-pambys compared to us lot." A quote from the forum. She's got a point, it does take strength, even for someone considered relatively healthy with CF, to cope with all the things it throws at us.
friday night
Sat in with James. We stole Fudge - the family dog - and watched Inglorious Basterds and drank red wine.
I love red wine :)
that is all...I don't see much point to getting serious on a Friday night!
I love red wine :)
that is all...I don't see much point to getting serious on a Friday night!
Thursday, 25 March 2010
clinic
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 on...as 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.
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 on...as 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.
Tuesday, 23 March 2010
annoyance
My tummy isn't playing any more!!! I haven't missed a single creon for at least 2 months now (woop!!) but today, and 1 day last week, I feel like I haven't taken them for days. The cramp, nausea, pain...euch, and I can't go either which is just annoying. Think I might be blocked up again, but I don't wanna phone cause I don't want any more kleanprep! boooooooooooo, it's gross. I have ballooned, my tummy is so big and swollen, it's so sore :(
Ah well, just had to get that out
Ah well, just had to get that out
Monday, 22 March 2010
today
So, today I went to my appointment with Lisa in the physio department. Fun times! She's too nice for her own good.
We talked about a lot of stuff, and basically we reckon I'll be referred to rheumatology for pain management. I've got splints again for my wrists but don't feel the need to use them yet. Pretty poor show when you can't lift up a carton of milk though so I'll be keeping them close at hand. She's gonna ask the docs about getting me on DNase or hypertonic saline, and I've to try and up my hypertonic saline sinus neb to twice a day so that my morning symptoms *hopefully* reduce. Aaaaaaaaand, she's gonna push for me to get an OGTT and I need to speak to Diane, the dietician, about adjusting my diet so that my sugars don't drop...which reminds me, I need to send her my food/symptoms/enzymes diary!! Woops.
All in all quite a productive day. Considering the last time I talked about all these things the Dr did nothing about it apart from give me augmentin which then gave me hideous thrush, I'm quite pleased!!
Here's hoping the nurses phone me to make an appointment tomorrow.
As an aside, they're not gonna make another referral to the East Ayrshire Council health and fitness programme at the moment because I've not to do any weight bearing exercise! fun, gonna dig out my yoga mat and DVD haha
We talked about a lot of stuff, and basically we reckon I'll be referred to rheumatology for pain management. I've got splints again for my wrists but don't feel the need to use them yet. Pretty poor show when you can't lift up a carton of milk though so I'll be keeping them close at hand. She's gonna ask the docs about getting me on DNase or hypertonic saline, and I've to try and up my hypertonic saline sinus neb to twice a day so that my morning symptoms *hopefully* reduce. Aaaaaaaaand, she's gonna push for me to get an OGTT and I need to speak to Diane, the dietician, about adjusting my diet so that my sugars don't drop...which reminds me, I need to send her my food/symptoms/enzymes diary!! Woops.
All in all quite a productive day. Considering the last time I talked about all these things the Dr did nothing about it apart from give me augmentin which then gave me hideous thrush, I'm quite pleased!!
Here's hoping the nurses phone me to make an appointment tomorrow.
As an aside, they're not gonna make another referral to the East Ayrshire Council health and fitness programme at the moment because I've not to do any weight bearing exercise! fun, gonna dig out my yoga mat and DVD haha
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