thinking

Over the last wee while there have been some thoughts kicking around that I've been trying to shake. They don't make me deeply sad or anything, but I guess it's all part of me learning to accept what I have. It's only been since Christmas that I've taken my meds all the time and that I've learned to talk about CF and accept it as part of me and not all of me. Overall I feel much better in myself about it having talked to other CF people and hearing stories of how everyone else copes etc...but there's sometimes still this feeling that this isn't my body.

I'm not sure that makes a lot of sense, but sometimes it just feels like I've been put into a body that's not mine, that I'm supposed to be able to do much more and really get so much more from life than I get just now. I'm by no means saying I have a bad life, because I don't, and I'm also not saying that I hate myself or my life and the people in it, and I'm not bitter anymore, I'm accepting, but there's still sometimes this feeling that I'm not me...

Hm...

Anyway, moving on. I am becoming increasingly impatient with smokers...seriously, it never bothered me a great deal before. For a while I've thought it's a stupid thing to do, but again, the more I get involved with the CF community and see people seriously ill and dying through genetics and absolutely no fault of their own...I become more and more impatient with smokers every day. How can you be so consciously stupid? I'm just as stupid, cause I used to hang around in smokey rooms and even smoked...I admit it, there's no point in denying it, but I was young and trying to fit in...I'm just lucky it didn't affect me more. What an idiot!! I never smoked regularly, only on occassion, but that doesn't make it any better. It took a while for me to realise that my chest was hurting because I was being such a tool, but once I made the connection I stopped and I've phased out people smoking around me. James smokes out the door, and even if I can smell it I give him into bother.

I do regret it...

Seriously.

I have no sympathy for people who have a cough and have a sore or tight chest because they're smoking...I can't find it in me to muster any feelings other than thinking that if they knew what other people go through then maybe they'd rethink their stance on smoking. Having said that, the fear of lung cancer obviously doesn't stop them so maybe not!

I wish James didn't smoke. For a start, it smells.

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Only 5 days until my fitness referral appointment!! :D So excited, I really hope to get something good from it.

annual review...

Yesterday was annual review day. Everything seems fine, my lung function is back up to 3.16 FEV and 3.52 FVC which is marv. I did see my sats down to 93 for the first time though which was kinda odd, but they went back up to 97/98 then just bounced around while I was doing the exercise tollerance test, but mainly stayed at 96/97 which is good too. I've to have a review of my meds next time I'm in cause I think the doc just couldn't be bothered yesterday. She says I'm taking the wrong dose of fluclox, but I've been taking the same dose for yeeeeeeeeeears and she was a bit baffled that I'm still on vits A, D and E and not on multivits...*shrugs* She also said I'm getting lazy cause I feel a bit breathless and light headed at the top of the 2 flights of stairs into my flat, but if my sats are dropping and then recovering quickly it could well be that...or maybe I am just lazy. Can't wait to get this fitness regime started next week.

My fingernails have gone kinda weird. I don't have clubbing but I've developed raised portions in the middle of my nails and it looks like there are horizontal ridges...physio thought it might be mineral deficiency and I wonder about my iron levels cause I'm constantly knackered.

I got my urology appointment sorted and I'm desperate for my sinuses to stop hurting :( I love that my lungs are good but I hate the pain I get with all the other things. It makes me kinda down sometimes, but I've gotta be happy for the good things, and I am.

There are other things on my mind, but they will be staying in my head just now. I'm not having another fall out over what I write in this thing, even though it's supposed to be a place for me to vent and not care what people think...but no, I'm not even allowed that.

the work situation...

Thought I'd update on the work situ...

I still don't have a new job, and I haven't moved into the office either. I found out a couple of weeks ago that there is a girl already working in the office who has CF. I've been there over 2.5 years and never knew...I guess that just goes to show that people don't look like they have CF lol. My mum kinda had a mini freakout when I told her cause we've had face to face contact etc, but stuff it, plenty of CF people meet up and I used to spend lots of time with other patients on the ward and in clinic whilst at paeds. Bless her, she only wants what's best for me.

There are people dancing in Father Ted...it's most odd.

I managed to wangle a couple of BBQs out of the parents this week, it's been great! Had a steak today :) I have to admit, my appetite has still been quite good but not as huge as it normally is...I seem to always have food in my hand, it's ridiculous! Still haven't eaten chocolate since feeling ill the other week...well, I did once, but it hurt my guts the second it hit my stomach.

I have my annual review on Tuesday *sigh* hate having blood taken...


bye for now journal :)

what to say...

So, my last post was rather short, and perhaps didn't sound like I cared much about what happened, but it wasn't intended that way. It's devestating when anybody dies, and it's especially hard when it's a friend with CF...something about it just hits home hard. I really can't imagine what Nic's family and close friends are going through right now, but my thoughts are with them.

On a brighter note, Tori got her call, finally! After many false alarms, her transplant has gone ahead and she is now in recovery. I worry about everyone who goes through transplant...mind you, I worry about them while they're waiting too, so lets just say I worry. I'm trying not to though, just sending lots of positive thoughts to her and her family. Hopefully it's a smooth ride for her :)

As for me...well, nothing much is happening. I'm still trying to find a new job, I'm still just getting on with things. I feel a lot better than I did a couple of weeks ago now, due to finish the antibiotics on Tuesday, but I've been left with some lung pain which better just go away. The hospital said that my sputum sample was clear, not even a growth of my usual bug, so I really don't know what happened...apparently likely to be a non-respiratory infection that's had some respiratory consequences...either way, it doesn't matter now.

I got my referral through for the council healthy living scheme, so now I'm waiting for a call back to arrange a meeting to discuss my needs and hopefully get crackin in the gym or some fitness classes...I'm hoping to build up to 3 or 4 days a week. Nothing like my 5/6 days dancing that I used to do when I was at school, but it's a lot better than what I'm doing just now, which isn't enough.


I having nothing else left to say, there really has been nothing happening...how boring. I need to get a life!!!

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It's been a sad day in the CF world.

Breathe easy Nic, you will be sorely missed. I really thought things would turn around for you :(

Such a sweetie :) xxx

I'm in love....

with my new Irregular Choice boots!!!



Love to my brothers, Andrew and James, my sister, Sarah and Andrew's girlfriend, Amy, for buying them for me!

I've had a fun filled, extremely busy week, which has been interesting seen as I'm feeling rough. Having said that, I think I'm getting better. Wednesday was the Ann Summers party, which was absolutely hilarious. Thursday, we spent the day in the Solid Rock cafe, which is just too expensive but it was fun! Friday was dinner at the family home, and my wee bro James made a lovely dinner! Last night we went to the Social, TGI Friday's for dinner and then to Citation, which is also too expensive!! So, I'm spending the rest of the month skint, and won't be out on Friday for Tammy's birthday cause there's no way in the world I can afford it.

I have a lovely big pile of new clothes which I am so excited about! :) Still haven't managed to get my new piano music yet cause the shop I used to use has gone so down hill it's not even funny. Hopefully gonna order it all online instead :)

Anyway, I've to be at the Western at 9am tomorrow :( and only for about 2 minutes to have the ECG taken off...why can't I just do it myself and post it back?! lol.

I really have nothing exciting to say...at all.

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Went up to the hospital this morning cause feeling a bit poopy. Turns out my lung function has dropped for the first time in years. I can't even remember if it dropped when I had strep. pneumonia...I think it might've went down to 85% actually, but really I didn't notice it. It's down to 81%, which to be fair is still pretty darn good, but considering it went up at my last appointment (it usually sits at 88% but went up to 89%), and I normally sit for LF and I stood today, it's still a drop! Physio couldn't get a sputum sample from me cause I was far too dehydrated and just had a really hoarse dry cough, so I'm spending the rest of the day drinking lots and keeping my little bottle with me...psuedo was mentioned, so I really wanna get a sample in to make sure it's not that!

Got a course of antibiotics for 2 weeks but obviously if it doesn't clear it then I'll need to go back...here's hoping. Made sure I got some fluconazole for the weeks too! I will not forget to ask for that again.

Anyway, chest pants aside, it's my birthday on Thursday! Woop! Ann Summers party with the ladies tomorrow then off into Glasgow on Thursday, can't wait. James and I are heading up in the morning to get piano music (my present from him) and then we're going to the Solid for lunch with lots of people and theeeeeeeeeen...the social? maybe, they do 2 cocktails for a fiver.

I'm shattered, have slept rubbish all week, so I'm goin for a snooze.