a little ditty...

thought I'd give a quick(ish) update!

I had my work christmas night out on Friday which was pretty good, although some drama always has to happen! Thankfully I wasn't involved :) The meal was...average, nothing special, but there were 2 bands, 1 of which played motown which was awesome.

Um...I played a concert on Saturday with Stewarton Winds then went straight onto night shift. Mistake? Pretty much, I soooooooooo struggled to stay awake and really probably spent at least 2/3 hours of the shift asleep on the couch. Not good, so glad I didn't get caught lol.

On Monday, I went to Garters to see Lisa (physio) to talk through some airway clearance and get an eflow (genius btw). I hadn't received a phone call from the nurses (again) to tell me my sputum result, and even though I phoned and left a message, they never called back, so she sorted that out too. Turns out it grew aspergillus, which totally explains the increase in junk, the wheeze, the rotten cough, the tiredness, blah blah blah. They're not treating it just now though as, god only knows how, but my lung function was still stable. This always happens!! I rumble and crackle then cough like hell every day just now then go to the hospital and my chest behaves ever so well, then as soon as I was in the car home I was away with it again, coughed the whole half hour home. I still record my LF each week on a piko6 for a clinical trial and it's been kinda all over the place.

Anyway, I got some antibiotics incase the psuedo or my usual staph are kickin up a stink in there too, and got a flutter for some different physio. I really like it...not really on it's own as such, but mixed with AD and doing AD through it is good too.

Had a lovely dinner with friends tonight, and am pretty much on the go now right through til after christmas day, and I still don't have all the things I need! Euch, stress and sleepiness, can't be doing with either.

feeling a bit more positive

I'm not gonna apologise for my last blog, it helped me get to sleep that night, but I wish I hadn't let it build up so long and that I'd just talked about it before it got out of hand...I'm a nightmare for that.

Anyway, I feel a bit better this week. I was experiencing my worst PMS in a long time last week! I don't tend to get emotional now that I take evening primrose oil every day (which has been a life saver) so it came as a bit of a shock and got a bit out of control. It's also helped reduce my physical symptoms and my periods don't last as long either which is great as they were lasting 7 - 10 days for a long time.

Anyhoooo, enough about my monthlies, I have better news.

It's panto week! Tonight was the first performance and it went well...a few hic-cups, but nothing major I guess. Only problem is that where the band are sitting it's absolutely freezing, so I struggled to play properly for a while as my fingers seezed up. Anyway, tomorrow is another day and hopefully it won't be so bad. It's been -5degrees at night though and the cast keep leaving the back door open for them to smoke, and it sends a draft right into the hall, underneath the stage, and out the other end where we're sitting! So not only am I freezing but I can smell their smoke, which I hate.

I started piano teaching again last week. My first day went really well, and tomorrow is my 2nd day. I have 4 students so far, aged 8, 9, 16 and 40, so it's quite a mix! Hopefully it'll continue to go well and I'll continue to get more students...I think there were a few enquiries for block lessons as christmas presents and the likes, so maybe after christmas I'll be inundated! haha

On the health front...nothing overly exciting, just my tummy acting up as usual...might need to give the hospital a call to get in for some kleanprep, as the movicol just doesn't cut it. I've had a lot of pain today and been feeling nauseous and bleh really. There have been definite chest changes happening this year, 1 of which only became really apparent last night, and that was that the cold air made me chest really tight and I was wheezing like nothing else. Thankfully I'd lifted my inhaler incase the stage smoke irritated things, but turned out I needed it before even getting started.

Next week I hope to start my christmas shopping :) I'm really looking forward to it, I love buying presents for people, but we're on a tight budget this year, especially as James' motorbike has a puncture so needs at least 1 new tyre, and my car needs 4! Euch. I'm also due to get the car serviced and my road tax is due at the end of December...just seems like a never ending list of things to do, and just when you think you have a bit of money, something happens to use it all up again.

I really hope everyone is feeling well, thinking about you all as always! x

is this how an angry mother feels?

possibly?

I'm so raging...deep inside, I can't shake it. It's always there at the moment, and it's basically because all I'm doing is running around after people and getting absolutely no thanks for it. A burning rage that is stopping me sleeping (as if I didn't have enough of a problem sleeping at the moment).

I spend my working day running around after people and getting fuck all thanks for it, then I come home and cook and clean and run around after his royal highness who can't even wash a bloody plate. I know he has a hard uni course to do, but all I'm asking is that he at least contribute to the running of this place...all he needs to do is wash the dishes, and I'm sitting here again without a single fucking clean cup, glass, plate or tea spoon, all of which there are many, cause they haven't fucking been washed.

I feed the animals, clean them out, make dinner, clean both the bathrooms, put both our rubbish in the bin (cause he's apparently allergic to putting things in the bin too), tidy, hoover...then go and do it all again at work.

The only reason I'm even mentioning it on here is cause I've done nothing but moan for days about how nothing is getting done, and its still not done...

I'm so angry I could cry...granted I'm a bit hormonal, but what female isn't.

I might as well live myself at this rate, at least then I would only have myself to blame but I would probably have a tidier house anyway.

facing facts

Well, I had to face facts today and go buy smaller bras lol. My weight has been falling since at least July and I must've gone down 2 sizes...first time in ages and it feels a bit weird but nevermind. Even the smaller sizes I bought when I lost weight last year don't fit now.

Thankfully I'm not too thin but if I can't stablise my weight or at least start maintaining again then the dietician wants me on supplements...and that'll be the first time since I was about 16 I think. I actually can't remember when I stopped taking them but nevermind, it's been ages anyway.

I don't really know what else to talk about, everything else is really just the same. I've been applying for new jobs and getting no where so far but I've sent another application away today so fingers crossed! I'm starting piano teaching again on Thursday :) I have 3 students so far on a Thursday afternoon/evening and I have space for another 3 before having to start another day. Thankfully this time I will be able to teach what and how I want to, instead of having to teach Yamaha's keyboard course and teaching in the way they do...it was extremely unnatural for me and I didn't enjoy it at all.

Hope everyone is feeling as well as possible and having a good weekend :) x

boring life

Life at this time of year is boring.

Seem to spend it trying not to spend money, not that we have any, but all we do is sit in. As well as trying not to spend money, I'm trying to earn money. I haven't had a single sick day this month, woo! I've felt like crap this week but I can't phone in sick when I only have 3 shifts a week and again they're talking about cutting bank staff hours. Instead of having us in for full shifts, we'll be brought in for 4/5 hours at a time, losing most of our unsocial premium and a lot of pay in the process. To make up for that, they say I can do more days...even though I have chosen to do less days so that I can try and keep on top of everything at home as well as work, and allow sufficient rest time in between. Obviously I don't have any significant lung disease and manage pretty well as far as that's concerned, but my digestion/sinus/joint issues are also exhausting and I'm constantly worn down by pain and feeling sick. I had gastritis a couple of weeks ago which was seriously painful. I still have pain coming back every now and then but fortunately it's not constant any more and my appetite is better, but not fantastic.

I had another appointment last week at the diabetes centre. Christine, the nurse, seemed quite pleased with me. Sporadic highs but some good control too so no insulin for me yet :) I'm assuming my HbA1c result was good as she was meant to phone me but hasn't. No more appointments made either, so that's me unless things go tits up, but I think she wants me to go to the joint clinic every now and then.

I've been finding my chest to be quite unpredictable too at the moment. I seem to have a few days at a time where physio is seriously uneffective and I feel dry and don't cough...then all of a sudden I'll be coughing stuff up for days and coughing til I'm nearly sick, and sometimes I am sick...but as quick as it comes it goes again. I know there must still be stuff in there, otherwise it wouldn't be happening, but I just can't figure it out. Anyone have any ideas there? lol. One of the young men I support at work was all worried on Friday cause I couldn't stop coughing. Bless, he was telling me to get a nice warm bath when I got home and get some rest so I'd feel better, and on Monday he kept asking if I was feeling better. Now, doesn't sound significant, but if you knew this person you'd understand that, although he is caring at heart, he struggles a lot with social situations and usually prefers to make himself heard by shouting abuse and talking about bodily functions etc, so it really was unexpected and I felt terrible for causing him concern.

All that aside, our new kitten is getting crazy. He's gonna need fixed ASAP, or our flat will not cope with him, and neither will the rabbit. We had let the rabbit out with him a couple of times but she doesn't like him trying to bite and kick her face. Now, though, he has started hunting things and makes the most weird, horrible growl when he thinks he's made a kill (even though it's never something living and today was a rapper from my christmas cake lol). I doubt they'll be out together again until he's fixed which is a shame cause rabby wants out a lot so he needs shut out in the hall.

just a little one

Look how cute! This is Tumble, our 6 year anniversary present to each other...although, really James forked out the cash, I'm just taking care of everything else. Our anniversary is on halloween, so we're a bit early but nevermind. We're not sure if we have a boy or girl, but I'm taking him/her for the first jag on Wednesday, so there'll be a sex check happening too.

Not much else to say really...not totally sure what's going on health wise, headaches are terrible, skin has completely freaked out and it's driving me crazy - so itchy!

Anyway, just thought I'd post a cute little piccy to hopefully make you all smile...if there's anyone reading that is!

been a while...

but I've not had anything interesting to say.

I still don't, so don't expect anything amazing. Went up to the ward today cause I've been having the most terrible pains in the centre of my chest, radiating round into the back of my ribs and shoulders. My appetite has been more or less completely gone, I've been shattered but unable to get much in the way of sleep and my headaches have been shocking. I had to ask to get away from work early on Monday and spent all of Tuesday doing nothing. As usual, my chest didn't want to give up anything significant and I doubt much (if anything) will grow in it, which is frustrating the life out of me after what I managed to get up last week when I didn't have a bloody sample pot. I really do think the Drs must think I make shit up, but I don't, I genuinely feel crap.

Anyway, my weight's down 4kg and gastritis was the best we could really come up with, although it wasn't exactly a quick diagnosis...not like him really! I've been taken off cipro as it was about 4th on the list of side effects and have doubled up on omperazole to see if it helps. I managed to eat most of my dinner, but the pain afterwards was pretty intense again. I'm also on my 3rd week of fluconazole since starting colomycin/cipro, and have a week to go, which is driving me mad.

I just feel so frustrated tonight...really annoyed and irritable and just wanna be left alone. I know we all have bad days and everyone is entitled to them, I just can't be bothered with feeling like this.

Nevermind...no point even getting started, I could go on for hours.

...

Just a quick update!

I went to see the diabetes nurse, Christine, who is great. She wants me to monitor my sugars post meal 2 days a week (1 week day and 1 weekend day) for now and see how it goes. They were good for the couple of weeks before I went to see her but they are creeping back up so we'll see! Need to watch what I'm eating if I'm to stay away from insulin...I don't want it, but if it comes to it I know it's for the best. At least at the moment I can afford to watch what I eat, as my BMI is just over 24 so no need to worry there!

On Sunday I did my 10k. It was a great day for it, cloudy and breezy, and the atmosphere was unreal. There were lots of runners for the CF Trust, and I met Paul which was nice, although June Ross was keen to keep us apart lol. I was a shakey, breathless mess by the end and apparently lost my beetroot colour sharpish, turning a lovely shade of pale instead. I didn't realise at first that I was hungry and how much I was shaking until my mum told me and made me eat. Anyway, I think my uncle and I have raised almost £1000 between us which is great, and we are still collecting donations. The Stewarton and District Round Table have asked me to write an official letter asking for sponsorship so who knows what might come from that, and Alistair's work gave us £250 :)

I forgot, until I got a message last week, that I'd agreed to be musical director for a local pantomime again this year...that came as a bit of a shock as the auditions were on Sunday, so after all that running I had to go and listen to people try and sing. They weren't all terrible, but there were certainly very few people you could call singers...it's going to be interesting. I have no idea how many people I have in the chorus, and there are 14 principles, at least 10 of which have to sing! The performances are at the end of November, but I am unavailable for a lot of the rehearsals, which is going to make my job much harder. Tonight is the production meeting so fingers crossed it goes well.

I'm still applying for jobs...I've seen 1 in particular that I'd love to get, but I'm not going to talk about it incase nothing comes from it...that way I'll be less disappointed if I don't get it.

Hope everyone is keeping as well as possible :)

blood sugars

I don't wanna jinx it but I think they might have come back down...

back to band!!

I received a facebook message at the beginning of the week from my old trumpet teacher asking me to join a local wind band that he started last year...so I went. I hadn't touched my trumpet in 5 years and was a bit concerned about how my chest would react, but it was fine, my lips died long before my chest lol. I have to say though that I'm glad I had the IVs before hand though cause thinking about how I was I know it would've been a lot harder on me.

We are playing at both the National Concert Band Festival and the Scottish Concert Band Festival, in November and December, and big Friel (or Alan, as he shall be known from now on...we used to call him Friel instead...Alan Friel, you know how it goes...) has decided that we will play 2 completely different programmes...joy!!! My sister joined as well. She plays French Horn and just left school so isn't nearly as out of practise as me, but I think I did ok considering.

So far we have been given 5 pieces, including a medley of songs from Wicked! SWEET! There's not much point in mentioning any other pieces as I don't know them yet and I doubt anybody else does either lol...Schostakovitch and Eric Whitacre etc, nah. Although I will say that our only slow piece so far is an absolute stunner :)

That's me, done, had my ramble about band, feel like I'm 15 again. All I need now is a residential weekend and a competition and I'll be right back there! Although I'll miss out the vodka this time cause a trip to the headteachers office is not on the cards for me now...haha, good times! Not the getting caught part, but the part before that ;)

stuff

A very original title...I'm rubbish with titles.

James and I enjoyed our wee holiday :) He enjoyed it so much that he didn't want to leave. James in his element = chopping wood all day for the fire and going long, extremely taxing walks which left me knackered and wanting to cry lol. On the plus side, I felt a bit fitter when I got home than when I left. There's  not really a lot to say about the holiday other than it was quiet, partly relaxing, partly knackering, pretty and different :) We spent a day on Bute which was nice and Rothesay is a pretty town. Fudge (the dog) really enjoyed herself too, she loved the walks! She was extremely well behaved and thought she was the queen for sleeping on the couch every night...sneeky. I don't have any pics at the moment as they're on my dads computer but when I get them I shall post a few.

I'm feeling now that I would really like a Monday - Friday job. Working til 10.15pm is not good for anybody, it's far too tiring, and then coming home and not sleeping properly just makes the next day workikng til 10.15pm even harder! I would've done anything to get home at 7pm last night lol. I'm also not keen on the fact that I'm working this whole weekend while James is off and 1 of my best friends, Leeanna, is going to South Korea for a year on Monday and I will only see her briefly on Saturday night as I'm working at 7.15am on Saturday and Sunday mornings! gutted. Normally I would sense a cancellation of a shift so that we could go out properly, but I have no money from being in hospital and if I cancel then I will have even less money next month! GAH!

My chest is feeling a lot better. I think, even though in terms of spirometry figures there wasn't much change, that the change in how my chest felt had been so gradual that I hardly noticed until the pain started. I find my left lung is still more productive than the right and it still looks pretty infected but who knows. That could just be the staph making it look that way. I suppose I'll find out when I'm next putting a sample in.

Hope everyone is keeping as well as can be :) x

holiday time!

James and I are going away tomorrow :) We've been looking forward to it for ages and it's finally here...shame it'll be over in a flash. We're heading slightly north west to a place called Tighnabruaich, west of Dunoon, across from Bute, should be good! The cottage has no electricity so I have an inverter for the car so I can use my nebulisers lol. It'll be back to the olden times for us, heating the water using a log fire and getting light from oil lamps and candles, but it'll be fun, I'll just need to make sure I don't get too close to the fire or I'll be coughing like mad.

Yesterday is the first time I haven't wakened with a mega wheez in a while which was nice. I have been sleeping terribly and have this tickly feeling at the top of my chest...it's not quite the back of my throat, it's lower than that, makes me want to cough quite a bit but I'm putting it down to using nebs 3 times a day as that's quite new for me. I'm totally amazed by how well the h.saline is working, it's the first time in who knows how long that I've been able to physio properly cause it's not so sticky down there. Only thing I don't like is how long it takes my chest to settle again after it. I've been coughing on and off for a couple of hours after, still coughing up disgusting green junk. Ew. Oh, and my tummy STILL hasn't settled properly which is causing me greif and I might need to phone the nurses after my holiday to see what they suggest. If I stop my movicol I get blocked in less than a day, but if I take it regularly I'm ending up going the other way after a few days...I dunno what to do about it.

Anyway, boring stuff aside, I'm going on holiday!!!! It's finally sunny and warm so here's hoping it stays that way for at least a couple of days. I'm not gonna be chopping the wood so I actually don't care lol. It's my sisters birthday today and my mums on Monday, so we're having a BBQ tonight at mum and dads. I love scoring free dinners cause we're quite poor at the moment.

James got back into uni :) He's going to do PGDE English. This time next year he'll be a part qualified secondary english teacher :D go James! He'll make a fantastic teacher, he's basically always in teacher mode anyway, correcting everybody's grammer and spelling mistakes etc...nightmare.

I hope everyone is feeling well and enjoying life as much as possible. I know the CF community has had some losses this week which saddens me deeply, but I try not to let it get into my head too much cause I find it difficult to claw myself back when I get too down. I just hope the people left behind know how much we all want the best for them and how many people love them xxx

IV free

All I can say is thank god for that! I have my arm back and it doesn't itch anymore from the dressings and bandage.

I finished the IVs yesterday morning and started neb colomycin and oral cipro lastnight. I can't say I'm overly pleased at having to wear sun cream because of a bloody tablet but heyho, anything is fine if it means my chest gets better. I'm pretty sure I did my nebs too close together though cause my right lung was mega rumbly and had me coughing for ages afterwards, so will need to try and come up with a system that allows more time in between. It'll be hard on work days unfortunately but maybe just give the saline a miss then. Still monitoring my blood sugars too and they seem to be a bit all over the place. I can't eat enough in the morning to keep them up before lunch and then they're high after dinner. Meh, just need to wait and see what they have to say about it, no point dwelling on it, it's fine.

Health worries aside, I had an interview this morning :) I think it went pretty well, they seemed happy with how I answered their questions and hopefully found me to be pleasant enough! I hope I get it, cause the part time rotas are worked out so that you work about 3 days a week, and the rota I was shown seemed to be maybe a back shift onto sleep over onto early, then a short shift, followed by 4 off or something. Obviously it's changable and the sleep over bit might be a nightmare but will just need to drag all my meds with me - if I get it that is. 

still in!

Well, I'm still in hospital which is marvelous. Finally got a long line in today after 3 venflons - 1 of which is still in incase the line fails, but it's in my left hand which is just inconvenient. The Drs have been taking huge advantage of the fact that I'm in and have been catching up on things that they've been meaning to do.

Tummy packed up again after 2 days off klean prep so had gastrografin on Monday which seems to be working, but I'm also taking movicol twice a day, so who knows! My OGTT showed that my glucose tolerance is impaired. Bit miffed, but nevermind!! Still waiting to speak to the diabetes team to see what they want to do. I've not been eating much and for the first time in donkeys my weight is falling, but not by a great deal.Down 1.5kg in a week though so if it keeps up I'll be getting into bother. I'm sure once I'm home and eating properly again it'll go back on as my weight's still totally healthy so we're not worried.

Hopefully I'll be out by the weekend but just need to see how the old tum holds up and the IV access. Hate feeling like a pin cushion and the bloody tobramycin is the sorest thing in the world to put through a vein...why do they use it as first choice? :(

No London at the weekend :(:(:( Dr MacG said he's definitely not letting me go which is just poopy, but I can see why he'd say that.

On a positive note, I have an interview next Thursday! Woo!! Basically the same job as I do now but with contracted hours and as a result, sick pay! I've had to cancel 2 weeks of work to come in here and that means I'm losing 2 weeks of wages that I can't afford not to have...god only knows where my rent is coming from. Even if I was on home IVs the full 2 weeks, there's no way I could go into my work with a line/venflon in...even if I had a port I wouldn't go, it's far too dangerous and risky.

Enough is enough! Hope everyone else is doing well :) x

hospital

Can't believe it! After 13 years free I have pseudo. I'm not moaning, as I am extremely grateful to have had so much time free of IVs, but it was a major shock to be told. I must've looked like I was gonna cry or fall over cause Dr McG looked a bit worried lol, but he was really nice about it, punted me off to X-ray and then up to the ward. He also gave me a bit of a row cause I didn't phone and let them know I was having chest pains, especially the kind that are worse on inhalation...woops! I just figured it was probs cause I was a blocked up and that I'd just wait a week and tell them at clinic, but he wasn't impressed. I won't be making that mistake again anyway cause the pain is originating where my lung is clogged, so at least now I know it's def lung pain and that it's cause of infection.

I'm on IV tobramycin and ceftazidime...yuck. Then I'm gonna be on 3 months of neb colomycin and an oral, which I can't remember the name of, but hopefully that'll shift it. I've had them all before so at least I know they've worked for me. I'm a bit annoyed that they'd known since May that I had grown pseudo and that nobody had contacted me and I've obviously been feeling worse in the 2 months...nevermind, I'm to blame too cause I didn't bother phoning. I've also finally been started on hypertonic saline neb. About time!! It definitely makes a difference.

I did my own IVs yesterday morning and will be doing them again from Monday so that I can hopefully be home by Thursday *fingers crossed*. I didn't expect that they'd let me do them seen as it's the first time I've had them at the adult service, but I know they're always desperate for beds and it means I can go home! I'm not impressed with the venflon cause it still hurts, but the nurse who checked it reckons it's still ok.

I also had more kleanprep, which was lovely, as always. Hate the stuff, although the taste is kinda growing on me...does that mean I get it too often? lol. I have virtually no appetite which is fun cause the smell of the food makes me wanna boke. Fortunately it tastes like the food at work, and I'm used to eating that crap, so I can manage something. I always make sure I eat anyway cause I know I have to.

Anyway, all that medical nonsense aside, I'm meant to be going to James' sister Ashley's graduation on Friday, in London. That means if I'm out I will need to take sharps etc on a plane...does anybody know the deal with that?

I can't think of anything else to say just now, it's been all go since Thursday and I'm shattered/head's up my bum!!

Hope everybody else is well :) x

6 week update

Today I went to see my CHIP (East Ayrshire Council health scheme) person, Jack, who took various readings to assess how I'm getting on since I started at the gym. It was all positive, but thought I'd put my figures down in writing so I can look back at them next time:

weight - down from 56kg to 55.4kg, still gives me a BMI of 25.3, so no worries there!
blood pressure - down to 109/79, can't remember what it was last time, but it was 131/?
body fat - down from 26.1% to 24%, which is good apparently
"metabolic age" - down from 17 to 15.

He mentioned that my visceral fat (fat on the abdomen) is good too, but I got a bit lost and didn't end up with a figure for that. At least I know it's good. And apparently I'm very well hydrated for a female. Nice.

All in all, a positive visit, but my trip to the gym afterwards wasn't so hot. I pushed myself on the treadmill, and then burned out lol. I did 3.5k on the treadmill, doing 5 minutes jog/run then 5 minutes walking etc, then only managed 10 minutes on the cross-trainer before deciding I couldn't do anymore and had a stretch then a shower (BLISS!). I went to Asda after that to get stuff for dinner and had to go back to the car to have a bit of a lung clearout, which must've been why I tired so quickly at the gym, cause normally I can manage a lot more than what I did.

Anyway, can't complain, I still did well :)

best workout!

I have an ultrasound on my kidneys a week today. Checking for kidney stones as far as I'm aware. If there's nothing there then goodness only knows what the deal is with the UTIs, but I've started taking cranberry tablets on the advice of the urologist, so maybe that'll help :)

I had the best workout today! I couldn't run as I'm unsure what I've done with my ankle supports, so I took to the cross-trainer again instead. Cue 40 minutes on an aerobics programme followed by a scarlet face and me collapsing onto a chair with dead legs and struggling to breathe...it was well worth it though, and what's more is I really enjoyed the programme. Normally I find the cross-trainer quite boring and only do 10 minutes, if anything, on it, so I was highly impressed. All I'll add to that is that going backwards on it is KILLER. I don't think I've ever had such a serious burning pain in my thighs and calves...I'll admit that I had to swear my way through that part of the programme ha.

The weekend is shaping up to the quite good. James and I have go karting on Saturday for a friends birthday, and maybe a couple of drinks or something afterwards, then Sunday is world cup final day which means a BBQ at another friends house. That will inevitably turn into a party but I have to drive to thatas I'm working 11 - 7 on Monday, so no drinking. I can't do the whole "going to work with a hangover" thing...doesn't work for me.

Last week I spent a lot of time at my friend Claire's house as she just had a baby. Little Molly is just so cute! James managed to hold her without dropping her haha. Apart from that, things are just going on as normal, nothing exciting to talk about. As always, I hope everybody else is well and sending you all some love x

fitness

Just a small update, not a great deal to say if I'm honest.

I'm still working on trying to get my fitness up, but combinations of bloating, not being able to go to the toilet and painful joints are making it harder work than it needs to be! Today I went to the gym as normal, but my ankles have been sore for a few days, and it was absolutely impossible to run through it, so that plan was dashed in an instant and I resorted to walking on an incline and using the cross-trainer. Thought I had a chest infection coming on the other day, was really productive at work (which never happens) and absolutely exhausted with a pounding headache, but the 12 hour sleep I had seems to have made it disappear...fingers crossed lol. It was entertaining trying to bring stuff up in a discreet manner...the boaking and stuff kinda gave it away though...lovely!

My appetite and eating habits are a bit shot to pieces...seem to be managing to miss breakfast every day, and either eat lunch or dinner, not both...ARGH!

I just have to blow my own trumpet for a minute, forgive me, but I made an amazing pot of chicken and rice soup, I'm so proud.


Anyway, keeping it short and sweet, and I'm not feeling moany or anything of that manner, so I'll leave it at that.

running etc.

Or should I change that to "trying to run etc"

I'm no good at running. I can walk well but often get breathless when trying to talk, so you can imagine me trying to jog never mind run lol. I think it's mainly because I've become rather unfit over the last couple of years as opposed to lung function cause my FEV1 was over 100% at last visit. Either way, I can't run!! I'm getting better each time I try but it's gonna take a long time. On my first solo excursion to the gym I managed 2 minutes at 7.5km/h and I was DYING! I could not have felt less fit lol. Next time I got up to 3 minutes and felt a lot better, and then I made it up to 5 minutes but by that stage I was really pushing it and I thought I was gonna have a youtube moment and collapse on the treadmill lol. I forced myself through the last minute, which maybe wasn't a good idea, cause my legs were like jelly and my heart rate was over 170...but hey ho, gotta get there somehow. I'm making up for it today cause my legs are in absolute agony and I'm knackered. Lets hope that the last 3 visits haven't been in vain and I can get to the 4/5 minute mark again on Monday.

I've been getting palpitations again a few hours after each gym session, but no point in worrying about them cause apparently my heart is fine. I also read something today which suggested that a lot of nasal drainage can cause palpitations cause it drains into the lungs and they have a little spasm which knocks the heart, which then has it's own little spasm...who knew! If it's true, that is. I do have a stupid amount of nasal drainage.

I went to my old school's summer concert tonight. It was my sisters last one, and she's the last in the family! My mum has been a proud parent and supporter for 13 years, I think she's more upset about it than Sarah is lol. Anyway, how times change! It's nothing like what it was when I was in the band/choir. We had spotlights and PA systems and it was on for 2 nights and you couldn't get tickets they sold so quickly...tonight the hall wasn't even half full and there was only 1 singer and she never even got a mic. I was seriously shocked cause they were all brilliant and the wind band sounded great. They've started doing school shows again though so everyone goes to see them instead and the band concert is just a last minute thing. I feel bad for the kids, not getting the utterly amazing experience that I had. I lived and breathed the band throughout my whole time in school, and loved every concert. I loved singing solos and playing solo piano pieces and being in the wind band was awesome! We went to Florida and I sang in the 3 choirs. We played in the Royal Concert Hall and travelled all over playing in competitions and festivals. I just think it's a shame for all the kids who are talented and could get somewhere with music...they are missing out on so much! Needless to say, big Nige, our conductor, isn't at the school any more, and the head teacher always hated the band. Nige was a scary man, but he was amazing at his job and I cried when I left the band lol...but then I was always a total music geek!

It occurred to me the other day that no matter what I eat, or how much I eat, I bloat after it. I'm sick of this bloated, gassy tummy and want it to stop!! I'm also wantin to cut out my tongue so that I don't have to feel it all coated and drying up on me all the time lol. I can't really complain about those silly little things though, there are much worse things in this world than a fat belly and dry tongue.

10k and then some

I signed up for the Great Scottish Run 10k. Feel slightly more insane every time I say it lol, but I really need a goal to motivate me into the gym. I'm sure I would go to the gym anyway, I'm gonna be writing it into my diary each week, but having a proper goal and raising money at the same time will make it even more worthwhile.

I also started the hypertonic saline sinus neb again today cause my sinuses are like a non stop stream of grossness. Had a little bit of blood but I think it might be more to do with it making me blow my nose more and it putting pressure on the blood vessels, as opposed to the saline causing irritation...but I could be wrong. Lisa (physio) said it should be ok to go ahead with it again but I've stayed off the nasonex. It's rubbish anyway.

I have the dentist today too. I've been trying to get there since February so didn't hesitate to cancel todays shift when I got the appointment through lol. A wee day off is nice too, but having said that, after tomorrow I'm off (Daldorch) for a week, but I'll need to phone Moorpark and try for weekend nights I think. The money and the fact that James is nights there at the weekend will make it easier to force myself to do it. Hate nights though :(

nothing...

I really have nothing to say, so don't ask why I'm writing an update...hoping that something will just flow? perhaps.

There's really not been a lot happening. I had a rubbish day at work yesterday, where I was so mucked about I didn't know if I was coming or going, and ended up in an awful mood for the entire night which meant it took me ages to get to sleep. This wasn't helped by the ridiculous sinus headache I had going on which took over my entire face and head and the painkillers I took made me dizzy when I closed my eyes...happens every so often I suppose though. Basically, I went to my own unit (2CB) and was sent next door to 3, where they also hadn't allocated me. I sat for 1.5 hours waiting to find out what I was doing, before being sent to 1, where I linked for an outing and on my return was sent up to junior campus, to a unit I'd never been in, with staff and clients I had never met. Needless to say I wasn't impressed, and to top it all off a very rude member of staff jumped down my throat about something completely irrelevant. Jumping to conclusions before seeing all the evidence. Sounds stupid when written down, and I don't have a problem with being moved about, I just wish they'd have made up their mind sooner and let me get on with my day!

All that aside, I have absolutely no money, which is making getting through this month seem like a mamoth task, and I hate it when silly things like money play on my mind. At least we bought lots of food after pay day so we shouldn't go hungry. I'm relying on the old credit card which was so nearly cleared off! Yet another thing I'm not impressed about.

There have been a lot of people on my mind lately  - ex friends, new friends (mainly online), acquaintances, family - for various reasons. The main person that keeps cropping up in my dreams is an ex friend and I wish I could just get over it!! It's been over 1.5 years since we stopped talking, but the 16 years of friendship we had before that seem to be making it extremely difficult to let go. At least it doesn't make me upset anymore or consume my thoughts when I'm in a quiet place, but I just really need to let go. The journey we had from primary school, right through secondary and on into her college and my uni years...it just seems irrelevant when we're not even able to acknowledge each other in passing, never mind speak. It was by no means a smooth journey, it had some epic bumps along the way but I thought that's what made us good friends...we knew the good and the bad in each other. I'm scared to look her way incase she can see that I'm still hurting.

Anyway, I'm going shopping today to help my sister finish her prom outfit, and also to get baby gifts for a baby shower I'm going to tomorrow. Claire is absolutely huge! I love baby stuff, it's all so cute, and Laura has bought some exceptionally cute things for baby Molly :)

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.

____

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!!!

.

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.

.

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.

back to work tomorrow

As the title says, I'm back to work tomorrow. I originally had 8 days off, but ended up only having 6 because they were short staffed Saturday and Sunday, and it also means all my pay is at the unsocial premium so I'll get a better wage.

This week has been nice. On Monday I really just did some washing and ironing, and after getting up at noon I fell asleep at 7, so ended up awake til 4am. Tuesday was pretty much the same, just some sitting about and stuff, but had some wine with James at night.

Wednesday was more interesting. To start, I was really sick when I got up which never happens to me when I drink, but my bowels are really slow so thinking it might've been affected by that. Anyway, still felt sick most of the day, but went for lunch and some shopping with mum after her work which was nice. We're going again this coming Wednesday cause it's my birthday on the Thursday and they're buying me clothes :)

Yesterday James and I went to a little cafe in Stewarton which was really nice. We had really amazing baked potatoes and cakes and tea :) After that I did a little bit more retail therapy in Boots then went up to mum and dads for a cuppa.

I had the most awful sleep lastnight. Before I went to bed I found out that an old friend, who no longer wants to speak to me for a reason I cannot quite comprehend, is pregnant again. Last time she was pregnant, her son died at 15 hours old after being born at 28 weeks and it was just awful. But even though we were her support and were there for her at all hours of the day (literally, I went round at silly hours in the morning) she threw it back in our faces and we no longer speak. I'm worried about her...and worried it'll happen again, and then I don't think she'd want to survive. I really was shocked to find out and I'm finding it a bit hard to just let it go...she doesn't want to speak to me so sending a message wouldn't work and I don't have her number anyway...god. I dunno what to do, cause it's not like I don't care.

Anyway, I went to bed at midnight and lay awake til close to 2. When I finally got to sleep I had a really weird dream which woke me at 2.30, so then I was awake again. Trying to get back to sleep was hard cause I could feel my pulse through my whole body and it was as if I could feel the blood coming to my heart and then radiating out through the rest of my body...really odd feeling. Next time I woke up I had soaked through my top and felt euch. I woke up again with the most horrific stabbing pains in what felt like my womb. It wasn't the same as the stabbing pains I've had in my bladder from constipation, it felt like a different place, but my tummy was really bloated so it was probably the same cause. Took ages to get back to sleep again. All in all I must've wakened about 6 times, so I feel like I've had pretty much no sleep at all.

Anyway...that aside, today I need to go into Kilmarnock to buy rabbit food and I'm gonna have a nosy in the new New Look. I'm not made of money btw, I'm usually skint, but I got holiday pay in both my wages because it was the end of the financial year (I don't have an annual leave entitlement, I accrue holiday pay instead, depending how many hours I work) so I have some money to treat myself and pay for all the birthday nights out in May.

Here's hoping I get a better sleep tonight...we'll see.

I thought you smoked?

Just remembered that a few weeks ago, a girl from work said she thought I smoked. haha, it tickled me somewhat, cause I was talking about my CF for some reason or other and she was all confused cause obviously I was talking about how it affects the lungs etc.

Maybe a silly answer, but I just said something about how I know I sound like a smoker when I cough, but that I'm not, definitely not. Just cause nearly everybody I work with smokes, doesn't mean I do.

It just tickled me.

I hope the 48hr ECG I'm due to get in 2 weeks picks up something...last night I was playing Scene It on the XBox with friends when my heart started doing it's weird party tricks again and it was the same when I went to bed. Been getting a few flutters today. I don't really mind if they don't give me treatment or anything, cause I know there can be many reasons why the heart would beat irregularly, but as long as they see what's happening and tell me there's no problem, then I'll be alright with that.

My sinuses haven't bled as badly the last few days but they're still bleeding and my head is still splitting.

I wanna run away again...get like this every so often, just start feeling low, for no apparent reason. Makes me wanna tell everyone to leave me alone and let me get on with doing nothing...absolutely nothing. I can hardly even make myself go for a shower, I couldn't care less if I start to smell.

Anyway...I'm kinda hoping that I'll be upstairs at work myself tonight so that I can just stick a film on the laptop and be left to it. I prefer to be up there myself than downstair with another member of staff. Plus, if I'm downstair I need to do the washing and ironing and clean the bathrooms, kitchen and dining rooms haha. Upstairs there's only the office, staff base and 1 bathroom. EASY, and I'm lazy :) Only drawback is that there's 4 clients downstairs with 2 members of staff, and 5 upstairs with 1...meh

excitement (or lack of)

There's gotta be something I can do to make life more exciting.

Feel like all I do is work and moan about having no money. I hate being moany, I really honestly do. It might not seem that way based on what I write in this thing, but I am actually a cheery person.

I need a project. What it's gonna be, I dunno yet, but I need something to keep my mind active and to keep me motivated, as I have nothing of that nature just now. James is gonna buy me piano music for my birthday though, so that'll be fun. I have a list as long as my arm of music I want but I'm gonna pick a few pieces and get them for now. Some Poulenc I think, and maybe a piece I was gonna do as part of continuing education before I had to pull out due to a major lack of £1000 to pay for it!

Maybe I should go play some Chopin just now, or some Bach or Beethoven...my hands are too small for Beethoven but I try anyway.

May will hopefully be a good month. A few nights out planned already for birthdays (including my own!)

I think I'm a drama queen...I seem to thrive when there's a drama lol...I'm not so bad that I'll make a drama out of nothing, I think, but yeh...we're all drama queens at heart :)

ENT

I've gotta wait for another referral to ENT. lovely.

Feel kinda like all I've done the last while is phone the CF team for problem after problem. Used to be the case that I'd see them once every 3 months and that was it. Not this year!

I don't have much else to say, and I need to get ready for work so I'm just gonna leave it at that. A nice boring little entry.

drunken Friday

me and Laura looking a bit worse for wear!



me and Tracy



me!



Kayleigh, Hubba and me all a tad drunk

So, the Ladies Night was a success! Absolutely hilarious. It was basically a glorified Ann Summers party with male waiters being auctioned lol. We got Steven :) There were burlesque dancers and lots of games, but I was too drunk by that stage to be running about trying to find lipsticks and bras and stuff lol.

Had a few weird moments. My dress was quite tight across my chest and as I started to feel drunk I started to freak out that I couldn't breathe properly cause my chest was restricted and that made me panick...and panicking made me panick even more and I went into full blown panick mode! My chest was heaving and I was freeeeeeaking out...god knows. Anyway, Claire came and spoke to me and calmed me down then I got back to dancing, but it was so warm I ended up having to sit down.

James came down to Laura's on Saturday morning after his nightshift and made us a fry up and gave me hugs cause I was feeling rather delicate. Was nice :)

All in all a good weekend, but I'm still tired and want a good long soak in the bath :)

need a break

Well, my day at work was absolutely horrific. I was working with a client who is normally not very challenging, but when he wants to be he can be VERY difficult...and he was today. I've never heard such awful language or seen behaviour like it in my life...8 hours has never felt longer! A 12 hour shift at Moorpark feels shorter than how today felt. Oh man! I actually felt myself welling up a few times out of sheer exhaustion and frustration, but the last thing I need is to cry at my work.

I came home and had an ambrosia creamed rice, some jelly snakes and tortilla chips...and a bottle of cider. Still feel stressed, a whole 3 hours later! I'm surprised my heart has stayed as calm, normally it'd be doing all sorts by this stage, but I'll see how the night goes, cause it often happens once I start to calm down.

I feel completely exhausted. My head is bursting, my knees and wrists are sore and I have a bit of cramp which just sucks. I don't like female cramps, partly cause I know it means I haven't got my wish to be a mother yet...not that we're trying cause he'd rather wait til we're more financially stable. I can't see how that'll ever happen and I don't wanna wait too long incase my health takes a turn! I feel it'd be best to try now while I'm still able, but I can't get that through to him...ah well, best not talk too much about that.

I'm going out tomorrow night! woop! Going to a ladies charity night for the Ayrshire Hospice which involve "sexy waiters" (are you kiddin me?! I know them...not so sexy lol) and burlesque dancers, feather boas essential! Can't wait, hopefully it'll be really fun, there's loads of people from work going so it should be a laugh.

Goodnight journal

Antibiotics...

How I hate thee.

I felt great last week after my 3 courses of orals, felt full of energy and positive about working and stuff. I know I can't really complain because I'm healthier than a lot of "CF people" that I know, but I can already, after a week, feel myself starting to slow down again. Feeling more tired, in more pain, generally sluggish, more productive, blah blah blah.

I hate antibiotics for making me feel normal for a few days lol.

piano

I so miss my piano lessons :( I loved learning and obviously loved playing and I just don't have the opportunities to play as much as I want now. Completely gutted.

It doesn't help that I'm watching the "young musician of the year 2008" piano section final and they're all better than I ever was. Completely gutted, but my last piano teacher, John Thwaites, was on TV! haha, haven't seen him since I graduated.

My sinuses have bled every day for weeks now, starting to really do my head in, literally, as it's sore!

old style post

I used to post lyrics onto my journal, years ago, if I felt they meant something. This song makes me quite emotional most of the time...some songs just do that...there's just something about it. I guess it's the fact that people just don't know what's under the mask we're all so good at wearing.

Fiona Apple - Never is a Promise

You'll never see the courage I know
Its colors' richness won't appear within your view
I'll never glow - the way that you glow
Your presence dominates the judgements made on you

But as the scenery grows, I see in different lights
The shades and shadows undulate in my perception
My feelings swell and stretch; I see from greater heights
I understand what I am still too proud to mention - to you

You'll say you understand, but You don't understand
You'll say you'd never give up seeing eye to eye
But never is a promise, and you can't afford to lie

You'll never touch - these things that I hold
The skin of my emotions lies beneath my own
You'll never feel the heat of this soul
My fever burns me deeper than I've ever shown - to you

You'll say, Don't fear your dreams, it's easier than it seems
You'll say you'd never let me fall from hopes so high
But never is a promise and you can't afford to lie

You'll never live the life that I live
I'll never live the life that wakes me in the night
You'll never hear the message I give
You'll say it looks as though I might give up this fight

But as the scenery grows, I see in different lights
The shades and shadows undulate in my perception
My feelings swell and stretch, I see from greater heights
I realize what I am now too smart to mention - to you

You'll say you understand, you'll never understand
I'll say I'll never wake up knowing how or why
I don't know what to believe in, you don't know who I am
You'll say I need appeasing when I start to cry
But never is a promise and I'll never need a lie

me

It's weird thinking about me...thinking about the things I do that make people say I'm weird or crazy.

Things like eating on alternate sides of my mouth so that the food is spread evenly, resulting in my teeth all being used, and dirtied, evenly, and how it takes over when I eat things like sandwiches, crisps, sweets etc. Meals that are eaten with a knife and fork don't seem to bother me so much, but if I use my hands it freaks me out lol. Oh, and I like to do it in even numbers, odd numbers are...bleugh, so I start on the right, finish on the left. Lovely...my left side is my weaker side (I'm right handed/footed) so I finish on that side so that my left side feels wanted...seriously, why has it taken me this long to realise that I'm a mentalist?

I count my steps in 4s if I'm walking on my own. I freak out if I make a mistake in my shower routine. I have little patterns that I make with my fingers and if I see a registration plate that I "like" I will imagine writing it in joined up lettering, over and over and over, until somebody takes me mind off it for long enough. I do it mostly when I'm driving.

I'm gonna be 23 in May...euch.

Ah, the life of a mentalist lol...reading that back, I sound like a total fruit.

I'm not gonna even bother writing the other things I do and think about.

Sometimes I forget this is for me to vent, and I'm kinda glad I wrote that all down...not that I'm gonna stop doing any of those things, the thought of it freaks me out, but for some reason it feels...actually scary, cause I know people read this...I'm off now before I delete this whole entry

the weekend

My weekend has been far from exciting. Nightshift at Daldorch on Friday, nightshift at Moorpark Saturday and Sunday. The weather has been lovely, and I had to sleep through most of it! Anyway, I managed to get an hour or so in the sun on Saturday at mum and dads with a cup of tea and a tunnocks caramel wafer (yum!) and today I woke up at 2 cause the river was loud through the open window and there were loads of kids at the park across the river.

At work now...finish at 8am. It's absolutely roasting, wish I'd kept my shorts on :( I burnt myself with boiling water while making a pot noodle for the client I'm supporting tonight...haha, what a dafty. He called me a stupid f*ck cause I didn't know where they were kept, which tickled me somewhat, cause he had a point.

The left side of my sinuses was really blocked while using the neb today, it felt really horrible to use, so much pressure and lots and lots of snot...haha, lovely.

I'm going to mum and dads for dinner tomorrow. We're having chilli :)

I think I'm gonna start carrying my camera with me more often, I really like photos.

Booked our holiday for the 14th August. A week away at a house with no electricity could be interesting. I'm gonna need to get an adaptor for the cars cigarette lighter so I can use my neb, cause I really don't fancy a week without it. The guy has been really good, letting us wait a bit later to pay the balance incase I'm not well enough to go. Even if I'm not, I'll damn sure be going!! I only get 1 week a year, I'm gonna be taking it lol.

Anyway, enough rambling about nothing. Can you tell I'm in this house alone?

some pics from my Thursday

Thought I'd share my exciting Thursday lol. I got bored waiting for the kleanprep to work, took ages this time and my poor tummy looked like I was at least 5 months pregnant haha. Also, a little token pic of me n Lynz out in Glasgow :) Should really have put the flash on but nevermind!



kleanprep jugs



the jug of water is wearing a cup hat :)



my "pregnant" belly



my cheap London shoes



Drew Barrymore



Me and Lynsay in Europa :) I actually made it out, woop!!

a short letter

Dear thrush,

Why won't you leave me alone?


Ruth.

breathing

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. 

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!!

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.

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.

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!

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.

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

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