Thursday, 8 December 2011

short video

The video above is of me playing Greensleeves...but it hardly sounds like Greensleeves, which is why I like it. Consider it a Christmas present (if you like it), or consider it pointless nonsense (if you don't). Apologies for the poor quality, I couldn't be bothered to fix the lighting and I don't have an external mic for my laptop so the sound is ropy in places.

I wouldn't normally want people to hear me play, especially something that's not technically challenging, but hey ho, it's Christmas, and I really need to just get over myself sometimes :)

I can't really think what to write 'cause I can't really remember what's been happening!

Panto went really well, especially considering the not so pleasant circumstances surrounding it. Only thing I will say is it wasn't as cold outside this year as last, so while the hall was a slightly more pleasant temperature at the beginning of each performance, by the end it was roasting and gave me a beasting sinus headache every night without fail. They get particularly bad if it's too warm, probably down to slight dehydration.

My financial situation has picked up a bit too, thank goodness! I got a lovely tax rebate which will pay my tax bill, I'm due money from the council which should be enough to pay my national insurance bill, and I finally got housing money sorted out. What a nightmare it's been though, the council can expect a big complaint letter, written by James on my behalf (cause he's better at stuff like that). They have literally messed up at every stage, and have driven me to insanity.

I was really feeling unwell the other week after the kleanprep, probably the crappest I've felt in a wee while. I'm putting it down to not being properly cleared out and also the stress of trying to deal with morons. But anyway, I broke my own rule at zumba that week. Normally, even if I feel really rubbish and can't stop coughing, I still do the full class (well, as much as possible) but take it easy, but this time resulted in me sobbing in the toilet with a green/grey face and dry wretching over the toilet, so I put my jumper on and sat out. I've since had more kleanprep cause I was curled up on my living room floor crying in agony lol. How I love being reduced to behaving like a baby in my own home.

Anyway, I've been feeling a lot better since so I'll cheer up this post a bit now.

James finishes school for 3 weeks in 1.5 weeks, yay! He is coming home tomorrow, then next weekend too, before coming home on Thursday 22nd, just in time for Christmas. My Christmas tree is still standing after 3 days, which is a massive improvement on last year, as after 3 days I'd taken it down thanks to my crazy cat tipping it over about 4 times a day. There are a few presents wrapped and under the tree, although I still have lots to buy.

I've spent today in my pjs cause police advised not to travel (thanks "hurricane bawbag") so I cancelled my lessons and rearranged them for Saturday and Monday. It's been bliss, not doing anything, but only really cause I've wound right down and want my 2 weeks holiday to happen right now.

Sending lots of love to all you poorly bears out there, this time of year sucks :( *hugs!* xxx

PS yesterday I was taken to see We Will Rock You in Edinburgh as part of my christmas from mum and dad :) it was me, mum, dad and my brother James. It was cool :) really liked it and haven't been to the theatre for ages. I stopped going on purpose for a while cause it made me really upset to think I could've been doing that as a career, but nevermind!

Tuesday, 15 November 2011

it could be a lot worse...

I was having a right good self-pity day, just feeling bummed about a lot of things and feeling quite crappy and tired after my klean-prep day in hospital yesterday, when I got to panto rehearsal early, as requested by our director.

He wanted a meeting and it all looked very serious. Which it was....very serious.

Turns out that 1 of the cast members has been charged with attempted murder of his girlfriend (another cast member). I obviously can't (and won't) go into details about what happened, but she is obviously terrified. He has been pulled from the panto and has been replaced.

Just goes to show, no matter how bad it seems, in some way or other, somebody has it worse.

I don't really have anything else to say. Hope everyone is well.

Sunday, 6 November 2011

Don't blog for ages...

Then all of a sudden 3 come along.

Ah well, the nature of blogging I suppose! Sometimes we have something to say, and other times there just isn't anything.

Today I could well moan a bit, so apologies in advance to anyone who might read this.

Yesterday, after my teaching, I got the ferry over to Arran, as I have gotten used to doing, except it was a beautifully smooth sailing and I even had a little snooze :) When I got there, we headed back to the flat to wait for the bonfire and fireworks display to start, which was great. They were selling soup and bread, hot dogs, cakes, all kinds of tasty treats and it was just so nice to get something warm cause it was pretty cold. Following this, we were going to a "Vegas" party in the pub next to the flat for a 30th birthday. It was going really well, until Ken started acting a total dafty and was so hilarious that I totally laughed my butt off, then coughed til I was blue in the face and threw up right there on my hand/arm and the table. If only it was possible for the ground to open up.

This totally put a damper on my mood after that, the whole night I felt so embarrassed, as the girl sitting next to me got up and walked away, probably thinking I was a right drunken state even though I'd only had 2 glasses of wine at that point. All I wanted was a little bit of comfort, but Marianne (James' flat mate) wouldn't even look at me as I desperately tried to clean myself off without making even more mess, and James just kinda looked at me as if to say "well, what do you expect me to do?".

I can totally deal with things like that happening at home, where nobody can see me and it's just another thing that happens from time to time, but for it to be so public was just bloody embarrassing (and I've had horrible heartburn ever since too!)

Anyway, I got really pissed off at about 2am cause by that point I was desperate for bed, but nobody would let me leave as it was a "lock in". Not for me it wasn't, I was quite rude about it actually but I just wanted to curl up in bed and sleep. I managed to get up to the flat where James left me on my own and went back to the pub (fine by me, cause I was just going to sleep anyway) and apparently they never got in til after 4am.

So I came home today, had a right good cry on the drive from Ardrossan ferry terminal to my house then had to go and suffer another pantomime rehearsal. It's going really well but I'm fed up of the songs now!

I know there will be lots of people out there who know how it feels to be embarrassed by your own body. I just needed a bit of a rant.

Hope everyone is well x

Friday, 4 November 2011

Why does it have to be so difficult to claim benefits?

The last month or so have been a nightmare. To start with I decided I didn't want to be signed off work completely (because what am I supposed to do of  a day when there's nobody around) so that meant I wouldn't qualify for ESA, and I don't want it anyway, but that means claiming job seekers allowance and going in to the job centre every 2 weeks to "sign on". Joy. Anyway, finally that has been sorted and I'm starting to get a little money through from that (I don't qualify for the full amount because I do some work, but only about 8-10 hours a week). The worst part of it all is that I have been told I need to reapply for another benefit which will hopefully pull in a bit more money. I've been led on the last month that it was all being organised, when actually the council don't have any application on record. I have bills coming out my ears, including tax and national insurance bills of around £600 and hardly a penny to my name.

I'm completely stressed out about this and even cried this morning after coming off the phone from the council.   I've always tried my best to keep on top of bills and, even though I do owe money on store/credit cards, I've always tried to at least pay the minimum each month. Problem is that I have to prioritize my rent and council tax, which leaves other things behind. I feel guilty when I have to buy food or petrol cause I know there are bills to pay. Nobody seems to want to help.

Euch, anyway, just need somewhere to moan seen as everyone is at work.

I feel so alone in trying to deal with all this. James has fun with his friends in Arran and I've not seen any of my friends for weeks and weeks. It's not his fault, my few friends around this area all work and my best friend is in Georgia, after spending a year in South Korea.

It makes me feel like I'm not moving forward at all. I have a few more piano students but it's like, an hour here an hour there, and just getting frustrated with everything.

Wednesday, 2 November 2011

I'm still here...

There's just nothing to say.

I'm still feeling bummed that I'm on my own so much, and now that I've put some chilled out music on to try and help me off to sleep, I feel more bummed than I have in a while. James and I had 2 weeks together while his school was on holiday, which was great, but after a couple of nights on my own I woke up at 2am freaking out, trying to figure out where he was. It was one of those movie moments, where you wake up and sit bolt upright, and I was feeling about in the dark to see if he was next to me, where he was supposed to be (in my sleepy state of mind). Not fun :(

Other than that, I've just been teaching and going to panto rehearsals really. The panto performances start 3 weeks tomorrow, and there's still lots to do, as per!

I've not been to the hospital since my IVs, so I don't really know what's going on, but I'm not feeling horrible or coughing as much so that's gotta be a good sign. Only thing is my damn tummy, which at this particular moment in time is sore and bloated, but this seems to be a nightly thing. I'm reluctant to do too much about it because I hate the stuff they give me, so I only hope it's just a minor issue and nothing major.

I'm trying this week to see how I get on without taking's been mixed really. I'm not doing it for any reason other than I don't like being on it all the time, and want to check I actually needit. I'm not in constant pain but when the pain comes on boy does it hurt. I have ENT and rheumatology clinics in the next 3/4 weeks so hopefully I'll either be discharged or get something new to try.

Anyway, I hope everyone is doing well, especially now we're in November and the cold weather is bound to come soon!

Monday, 19 September 2011

getting to that time

As the title suggests, it's getting to that time of year where everyone starts getting sick and we have to be more careful than normal. My brother has a stinking chest infection which I really hope to avoid and lots of friends have varying degrees of cold/flu. Joy! I'm not 1 to completely avoid people, I just try not to get too close if I can avoid it.

IVs went pretty well, happy to say my line lasted the course, although it tried pretty damn hard to stop working. I was just willing it on every time it was time for another dose. LF was up in the end to where it was when the IVs were first suggested so just hoping it's still there or higher when I'm next at clinic.

Sinuses have taken a hissy fit, bleeding and causing lots of pain and I'm trying to reduce my movicol too but tum is hurting and think I might have a touch of gastritis again too. Ouchie! I normally take 1 movicol 3 days a week, but had increased it to every day before the IVs then up to 4 a day half way through. Trying to reduce it is difficult, but I'm down to 2 a day now and hopefully I'll get down to 1 in the next couple of days too :)

As for everything else...well, nothing is really happening if I'm honest...pretty bored, in need of more piano students and trying to find things to keep me occupied while I'm living myself.

Gutted to find out that my friend Alan isn't going to be listed for new lungs, after nearly a year of trying to get on the list and being told on numerous occasions that he was being listed :( keep going Alan! I hope everyone else is keeping well? x

Thursday, 25 August 2011

Went to clinic this morning hoping for an up, but when I started hacking like a mad witch last night and into this morning I thought it might not happen, which it didn't! Joy. I've had a 20% drop in lung function in the last couple of months so I'm heading back up on Wednesday to get started on IVs. Fortunately I've seen the same Dr the last few times I've been up so I knew it was probably on the cards. They said my cough swab from 2 weeks ago didn't grow anything though so who knows. CF, you are a pain, but at least I don't have to stay in this time.

Anyway, that's next week lol.

This weekend James is coming home! Yay! We are going to a charity night for CF Trust which has been organised by a CF mum in my home town. I'm going to meet her tomorrow while he's at nursery, incase we don't get a chance to chat on Saturday night so that should be nice.

So many people on my mind, I hope you're all keeping as well as can be :) x

Thursday, 4 August 2011

Well the treatments seem to have made a difference :) I'm not sure yet if I'm back to my normal, but zumba was 10 times easier last night than it was a few weeks ago. Thank goodness for that, I'm sure you all know how unpleasant it is to hack up a lung with everyone watching lol.

Unfortunately, starting the steroids etc a few weeks ago meant I couldn't go to my clinical trial appointment in Edinburgh so it has been rescheduled for Monday coming, then I have an OGTT on Wednesday. My ENT appointment was pants. For starters, I didn't like the Drs patronizing attitude, just everything about him creaped me out :/ He was a total pain. Secondly, I obviously thought I was going to be seen about my sinuses, but they started off by giving me a hearing test which I thought was a bit odd, but turns out they were more concerned with the dizziness I'd been having and were worried it could be drug interactions or something. Anyway, he decided I have/had Benign Paroxysmal Positional Vertigo as a result of a head injury I got at work in February. It seems to have mostly cleared up now though, yay!

No polyps...which is good, but bad as well cause now they won't operate. So I'm trying flixonase nasules for 6 weeks then back to ENT in 3 months.

CF crap aside, I bought my wedding dress last week!!! Super excited. I'm keeping it a secret until the big day, but I'll definitely post pictures after it's by :)

James is moving to Arran on Saturday :( Feeling pretty rubbish about it, I'm not looking forward to living myself after we've been living together for 2 years. Euch. I think James' sister will be staying with me for 8 weeks or so towards the end of the year as she got the lead role in the pantomime in the next town. It runs for 6 weeks with 2 weeks rehearsals beforehand and she lives in London, so it makes sense :)

Hope you're all good x

Sunday, 10 July 2011

moving forward

This week James and I have been looking at wedding venues, trying to choose a colour scheme (as I'm fairly set on a colour, regardless of where we wed, but he doesn't want to wear it...boooo) and also trying to decide if we can possibly afford to get married in summer 2012 instead of 2013, as his cousin is getting married the same weekend we had in mind (mid July 2013). She's a teacher as well which makes it's the only proper holiday of the year really. It's amazing how much work they still have to do at Christmas and Easter. Nightmare!

Anyway, yesterday we spent most of the day over on Arran looking at property for James and Marianne to rent. They settled on a flat on the waterfront in Lamlash, 5/10 minutes walk to the school, and easy to get to off the ferry. I'll no doubt be there quite a bit!

I had clinic on Thursday. I met one of the CF nurses while waiting for my rheumatology appointment the week before and she thought I should be seen because my sinuses have been so bad (still waiting for an ENT appointment). Anyway, turned out lung function was lowest since I transitioned to adult care, and although it's still high, they were concerned as I'm normally pretty stable lung numbers wise. As far as I can make out, the plan is prednisolone until Wednesday, plus 2 weeks doxy, then if no better after that it'll probably be IVs, although they don't really know what's causing it. There's a mutual refusal among the team it seems to consider that my symptoms got worse and it's been a gradual down-hill slope since the aspergillus turned up, but I think it's possibly so they don't worry me. I'm not worried, I'm just annoyed at antibiotics for 2 weeks, then a week or 2 off, then back on. Feels like it's been going on for ages.

I feel like a right pain though complaining when I'm seeing friends fighting for their lives...really changes things. I'm not upset or worried about my situation at all, I just hope it doesn't come across that I am.

Hope everyone is keeping well as can be <3

Tuesday, 14 June 2011

moving, grumpy, hospital hospital hospital

Long time...again.

Lots has happened for a change! Firstly, we had our engagement party on the 21st May and it was fantastic. The venue was lovely, with great food, our DJ was excellent and only played music that we like and having some friends play acoustic sets just topped it all off. I, on the other hand, nearly got thrown out of my own party for falling asleep! I'd been on the go all day and was exhausted when I got there, so add to that lots of red wine and I just couldn't last any longer. The next day was a complete write off haha.

On the 23rd May we moved house...actually, we spent that entire week moving house. It was, to put it nicely, a complete nightmare, and I was so tired and grumpy the whole week. On the Tuesday, 1 of the CF nurses came by to get a repeat sample after my annual review as it grew ureaplasma urealiticum...I have to say I'd never heard of it and they were unsure whether it was actually there or had been in my mouth or maybe even contaminated (as it's not a lung bug). Anyway, it didn't grow again, but while she was over she was concerned that I was pretty wheezy and coughing lots, even though I explained that I'd just done physio and that, along with h.saline, always makes me sound like a mess, but in fairness I'd been coughing more, felt more productive and kept randomly falling asleep. That resulted in me going to clinic again on the Thursday and getting 2 weeks of azithro and cipro as well as put back on an asthma inhaler.

This is going to sound ridiculous, as it's only an inhaler, but I really was gutted about it. I remember how elated I felt when I was allowed to come off them as a teenager and it just felt like a bit of a step back.

The cipro made me feel sick as a dog for a few days, but thankfully I wasn't actually sick (takes a hell of a lot to make me sick). I also felt really grumpy and so tired so kinda cut myself off from people, but I'm getting back into socialising ha.

Today I went for a DXA scan. Boring. A whole 5 minutes and I had to trek away up to Glasgow to get it. James came with me though and we went to the Kelvingrove Art Gallery before it cause we were early. I hadn't been there for years so it was nice :) It looks like they're opening a Brew Dog bar across the road from it so no doubt we will be there more often lol, James likes a Brew Dog.

Next week I have an abdominal ultrasound and the week after is my rheumatology appointment. I'm still waiting to hear from ENT, but hopefully I'll get the appointment soon and I can be rid of all my trips to Glasgow for boring things!

Written down now it doesn't really feel like a lot has happened, I must just be going at 100mph all the time for no reason lol. Hope everyone is well.

PS forgot to say that James will be an island dweller for most of the year now as his probationary teaching year is on Arran. That means I'm gonna be a loner and will need lots of company til he comes home at weekends, especially in bad weather as it won't be easy to get back and forward on the ferry.

Tuesday, 10 May 2011

annual review

Thought I'd write this post while I remember (almost) everything that was talked about!

Ok, so lung function went really well. Although my numbers have dropped, my predicted numbers have also dropped so I've basically stayed the same. I didn't manage to get a sample (goodness only knows why, chest isn't exactly clear, just stubborn) so had a cough swab instead. Physio went pretty well too, didn't manage to walk as far as last year but there's not a huge change. I got a weird headache half way through which shot my heart rate up and put my sats down a tad, but it resolved and everything went back to normal. I definitely felt more breathless than last year as well. Dietician said the usual really - need to stop losing weight, try and get tummy back under control and do a food diary.

Dr is referring me to ENT again as they said I didn't attend my last appointment, but I didn't get one through :( She's also referring me to rheumatology to see if I need anything stronger for my joints. They're not always bad but they've flaired up just now so she started me on naproxen twice a day as well. I'm getting much better at giving blood! So proud lol. Managed first time and I didn't have a freak out :)

I'm told I need to get better at doing physio. I'm doing enough exercise apparently but just not enough physio. I get a complete mental block with physio, hate it, can't seem to always make myself do it, even when I know I need it. Think I need to do some psychological work with myself lol.

Nothing else really to talk about, life is just rolling on as normal...dunno if that's good or not lol.

Anyway, I'm tired now and have a piano lesson to do for a new student, so I'm gonna shoot!

Monday, 2 May 2011

not a lot to say...

...but I've abandoned you long enough, journal!

It's official, James and I are moving again. Nightmare, but hopefully it'll be worth it. We have managed to land ourselves a cottage with garage and quite a large garden, 2 double bedrooms, large bathroom and an even larger kitchen. Excited! It's not as modern inside as our flat is but what we lose in terms of furnishings, we gain with all the extras :)

Apart from that, nothing much is happening to be honest. I'm tired and emotional, mainly grumpy, have been for a few weeks now. My tummy is causing me so much stress that I have considered stopping eating completely. My chest hurts when I cough and all my muscles hurt too. Sinus blood this morning, marvellous. Annual review on the 17th...would really like to last til then but I'm getting so fed up of still not feeling right. Still so dizzy I could fall over - thankfully, when it's worst I'm lying down so I've avoided lots of bruises!

Body, you are doing my head in!

All that aside, I'm still working, still trying to get more piano students. The weather has been fantastic, I've been enjoying it so much. Hope everyone is feeling good xx

Wednesday, 13 April 2011


I can't even really think where to start if I'm honest.

What a weekend! James' cousin Vicki got married on Saturday to Andy. They are a fantastic couple and it was a really beautiful day, the sun was shining and everyone looked so glamourous! I played piano at the reception and James' sister Ashley sang at the service. She's a great singer :) She studied musical theatre in Guildford and is now living in London and auditioning like mad for shows.

Everyone was asking me if I was getting lots of ideas for our wedding, and if I'm honest, I wasn't really. As lovely as their wedding was, and as perfect as it was for them, it wasn't the kind of wedding James and I want for ourselves. We are hoping to be married outside in a non-religious service (as James is the least religious person I've possibly ever met) and to have a reception a little different from the usual. We shall see!

Sunday was a stunning day again, so James and I took Fudge (my family's dog) a long walk around the woods, after which I was beat! We made some burger rolls and I had a couple of pints of cider and just enjoyed being warm in only a tshirt and skirt. Shame the rain has come back now though :(

Body-wise...I couldn't be more annoyed with my digestion and my sinuses if I tried. I am seriously considering cutting out most fats and seeing if my tummy will settle before building it back up. I'm sick of waking in the night feeling sick from the pain or waking from the noise of it rumbling! I was also wakened the other night by the grating sound coming from my left lung. Good cough and it went away but because I couldn't be bothered getting up to shift it properly it just came back.

I've started using my sinus rinses. So far so good I think. I got really bad earache and headache after using it for the first while, and the pressure at the front and back of my head is really bad still while I'm using it but seems to be reducing thankfully. I'm starting to think that a lot of my troubles might be related to polyps again (growths of tissue which can cause blockage of the airway) rather than excessive mucus, although occassionally I'm still draining some really awful looking stuff down the back...ew. I thought my balance was recovering over the weekend but it's getting worse again - I thought my week of extra antibiotics was helping but now I'm off them again I can feel it getting worse already. Only finished them on Thursday but nevermind! I'm not due at clinic til the 17th May for my annual review so I'm trying to avoid going up there until then.

I also don't suppose that so many people being ill around me with various flu/cold type things is helping much. I'm definitely avoiding the worst of it all still, but I do tend to get ill when everyone else is fine for some reason. As soon as I think I can relax a bit I always get something lol.

I'm sure there are many more things I was gonna update about but I forget now. Hope everyone is well :)

Thursday, 31 March 2011

fungus likes me

Apparently there is no physical reason for me feeling a bit physical reason to explain why I'm so dizzy I fall into things and have to hold myself up. My chest has been angry with me the last week or so too, wheezy, really junky and coughing til I'm sick. My sinuses are killing me all the time, and the "vacuum" headaches that come when I don't get a drink in time (about every half hour/hour) are just unreal. Aspergillus is back too, so think that explains the amount of junk...they're still not treating it.

I had clinic this morning. Lung function was down a bit, but nothing major, sats were 100% but my heart rate was over 110bpm and I was all over the place trying to put my shoes back on after being weighed lol. Weight has stayed the same (woop!) so that's not a worry but had a good long chat with the dietician (she's really lovely) about ways I can try and keep my sugars up, especially while I'm at work. Hypoing between breakfast and lunch, then again after lunch, pretty much every time I'm there is starting to do my head in. She thinks it's possible that my sugars might be climbing then crashing, but they could just be dropping with all the energy needed to stay awake and actually work lol.

Had a chat with the Dr about my work situation too...she literally said "get your work to hang, and I really mean it". I know I want to leave and work on my piano teaching only but I'm not really able to support myself financially with that at the moment...euch. The nurse spoke to me after though and offered to have a meeting at my work to discuss different ways they can keep me there...not sure what I want to do about it though. I don't really feel like facing up to the fact I'm still in a bit of a dip, even if my numbers don't really back it up all the time. I'm glad my numbers are still good but it's been a while now since I've felt really good.

Oh, Dr didn't check my tummy was just a bit of a disaster clinic and think they were just wanting rid of us as quick as possible. Stupid phoning me to go up if they're not actually wanting to go over everything.


Lots of people needing positive vibes just now and really hope you all start to feel better!! xx

Friday, 25 March 2011


I find it strange that even though I was at a friends' house for dinner tonight, I feel very lonely. It feels ridiculous to me that I feel like I don't really have anybody when I know I do. I have James for a start, and lots of friends who I know love me, as well as my how is it possible to still feel like you're so alone at times. No matter how many times I try to convince myself otherwise, I just feel alone sometimes...we all must have times like that though, right?

I know I'm physically alone tonight (James is out all night) and that can make me feel worse, but it's not only that.

My work, for example, is a nightmare for it. Everybody is so two-faced it's hard to know who you can trust. And even the people I feel at times I can trust tend to let me down...I hate how false people can be. I know we're all guilty of it at times, I guess it's just a need to please and be professional under the circumstances...but is it really necessary?

Don't really know where this is going to be honest. I have a few people at the moment I'm  just not's a bit weird cause for a while I considered them good friends, but now I just don't know what's going on. I like to think people can talk to me and tell me if I've done something to offend or upset, and know that we'll all be adult about it and move on...just feel a bit let down and I'm struggling a bit to let it go.

Anyway, my "spoil myself" bath turned into me lying in some hot bubbles for a while and messing about with the cat. No scrubs, lotions or potions were touched, even though I had them all sitting ready, just didn't have the energy to bother, especially in the heat, so I tried to get the cat to come into the bath (just so I had something to laugh at) but he was having none of it - although, he did sport a rather fetching bubble hat for a while. Hilarious.

To bed now, hope everyone is well x

Tuesday, 22 March 2011


Woops! Blog has kinda been abandoned, but it's always a good sign! Things have been busy busy busy lately.

We have been delivering invites for our engagement party on the 21st May and I even have my dress already! Super exciting. We also went out in Glasgow with friends on Saturday night to celebrate. Lots of people turned up (way more than I expected!) and we had a really great time. I did feel a bit rough on Sunday but I guess that's to be expected when you drink all night, even if you do go to bed relatively sober.

On Friday, there was an opening/networking night at the shop I teach from. It was fab! Lots more people than expected again, and lots of business gained. The owners organised a raffle for the CF Trust, and as the night went on it turned out there were 3 people with CF in the shop. One guy I already knew about as we went to paeds together, but the other guy is older than me and although I've seen him in the shop a few times for lessons etc, I didn't know he had CF. The raffle alone raised £200 for the Trust, so that's fantastic.

I'm starting 2 new students on Monday, so that's me up to 14 now! Woop! Hopefully they keep coming and I can kick my other job up the butt. Unfortunately, I'm 1 of the 56 people being ear-marked for move up to junior campus, and if I don't go I'll get paid less! Hate financial black mail, it's ridiculous! Why work hard for a qualification just to be put down for it. So there's a lot of bad feeling at work just now, and I'm, quite frankly, completely sick of it! I only do 24 hours a week there, but if I stay I'd need to up my hours, which just wont be happening. I have no time as it is!

I'm off just now, as I've done in my shoulder. I don't know how, but I have a history of injuring myself in my sleep, so I'm putting it down to be being incapable of sleeping like a normal person. My shoulders do get extremely sore during the night, as I tend to lie on my side, so during the night I have been sliding down the bed, off my pillows, and lying on my back, which results in James waking up cause my breathing gets laboured and he pushes me in the side to make me roll over! Unfortunately the other night, I had just wakened cause my chest was rattling, then he pushed me in the side and it was sorer than I expected. He said I sounded like I was struggling. Yeh, cause doing that is really gonna help! lol.

Anyway, bit of a ramble, but that's why I chose the name of my blog lol. Hope everyone is doing ok x

Thursday, 3 March 2011

sharing the love...

of piano.

I got some new sheet music through this week and I have to tell you all how much I'm loving having a challenge again. I had looked at the pieces a little in my last year at the RSAMD but I was concentrating on accompaniment and chamber music then so never took them very seriously.

Anyway, they are Schumann's "Papillons" and Schubert's "Fantasy in C Major". The Fantasy is 30 pages long and is very difficult, especially for someone like me who has tiny fingers! Damn composers with big hands. Papillons is not so difficult but is beautiful and really fun to play. I enjoyed listening to a girl on my course playing it in a performance class which is why I started looking at it.

I feel now that I am teaching and getting back into my music life that I should be spending more money on sheet music and more time practicing! What's the point in me getting on at students for not doing enough practice when I maybe play once a, it seems wrong to me.

My poor wee Granny passed away a year ago today. Love to you Gran!

Sunday, 27 February 2011

I have my ring back!

I promised pictures, so here goes :)



So happy to have it now, I'd been missing it all week lol. My Dad took these photos on his camera that Mum bought him for his 50th in October, it's an amazing piece of kit.

Engagement/wedding chat aside, my tummy is giving me serious pain problems, it's beginning to really really try my patience. All this messing around with my creon dosage is getting to me because I still don't know what the correct dose is and it's been a year since we started with it all :( I woke during the night on Friday in agony and had to get up for pain relief and lots of movicol, which didn't kick in til Saturday afternoon, and now I'm in a lot of pain again tonight. Pft.

Not really sure about everything else, can't really think of anything interesting to say!

Lots of potential music project ideas floating about at the moment, but I will expand on them if and when they take off x

Monday, 21 February 2011


Ok, so most of you probably already know, but James and I got engaged on Saturday! 6 years and 4 months we've officially been together (with about a year of messing around before that, courtesy of James being a typical 16/17 year old commit-a-phobe haha) and now we're engaged. Excited doesn't even cover it.

It was a total surprise! James had been out in Glasgow during the day and when he came home he told me he couldn't get the book I wanted but that he'd got me something else and to close my eyes. I was standing at this point and felt like a right numpty standing with my eyes closed and my hands out like a child haha, but eventually he told me to open them and he was on 1 knee with my ring and asked me to marry him. I'm pretty sure I said "of course I will, ya dafty" (pleasant) and burst out laughing. When I hugged him I realised he smelled a little of booze, so he must've been nervous, bless.

He hadn't told anyone about it apart from his 2 best friends so we had to phone our parents and that ended up being dinner at my family's house and his mum came over too. Lots of wine and champagne later and I was beat.

I don't have anything really to report in terms of wedding arrangements as we won't really have money until James starts work in August, so I doubt we'll be booking anything until then, but we will be having a party to celebrate with our friends and family :) We both have big families so it'll be busy.

Anyway, I get my ring back on Friday! Woop! It was too big so we had to order a different size. I'll post a picture when I can wear it :)

Thursday, 10 February 2011

music therapy

Feeling a little bit excited so have to post!

This morning I have arranged my first meeting with a "music therapy" client. I technically can't call it music therapy as I'm not a qualified therapist (it's too expensive!) but I can't really think of any other way to describe it. I can definitely take sessions similar to therapy, just can't use the word therapy or the name therapist...kinda like being a nutritionist and calling yourself a dietician, it's not on!

She is 5 years old and has Autistic Spectrum Disorder, attends a special school in my area and loves music. Her mum has given me lots of helpful information to go on about her behaviour and her abilities and it seems we are trying to encourage her to be more verbal. At the moment she has echolalia, which means she repeats exactly what you say, but she also has good understanding, so I think there should be a lot of scope for her school/extra-curricular activites/me to encourage her to use language in the traditional way.

I have been interested in doing music therapy for a long time, but the course only runs in Edinburgh or England/Wales, and costs a fortune, plus I don't think I was emotionally mature enough to do it straight after uni, or maybe even now (they tend to recommend a starting age of 23-25+) but maybe some time in the future I will be able to think more seriously about doing the MSc. It also takes 2-3 years to complete and you have to attend personal therapy while studying/doing placements/working, so it's a lot!

None-the-less, I am excited.

Saturday, 5 February 2011

the way forward... positivity.

It has been brought to my attention (and I do notice this from time to time) that I can come across really negatively. I don't do this on purpose, and it doesn't generally mean that I am unhappy, it's just the way I am.

I don't feel like I'm a victim in this life, and I don't want peoples sympathy, it's just an unfortunate part of being me.

I am trying to change this, but it's a little difficult at the moment as I feel pretty lonely. I have 1 friend in the area I live in and she's busy busy busy being a teacher. I live with James, which is great, and obviously stops me feeling extremely lonely, but I hardly get out on a good night out due to lack of funds and time and various other factors.

Anyway, bear with me as I work on this.

Friday, 4 February 2011

eventful day

Well, if you really can call it that. Normally, eventful makes me think of good things, but not so much today! I'm not gonna dwell on it, there was nothing really that could have been done, happened in a flash. Today, I got my first work injury that needed a trip to A&E. I've been scratched, punched, kicked, had my hair pulled, been chased and nearly had an asthma attack as a result...all kinds of things, but today I got my first hard head butt. God, never again, please. Thankfully, I didn't pass out, I wasn't sick and I only have a mild concussion. It sounds awful obviously, but you have to understand that the people we support don't understand the consequences of their actions, and often when the become anxious or upset they injure themselves or other people. I just happened to be in the wrong place at the wrong time.

Anyway, I've been really tired since Monday. I woke up and couldn't really get a breath in, and after refusing an antibiotic at clinic on Thursday, I wished I'd just taken something. But yeh, a few physio sessions and inhaler puffs later and I felt a bit better, but wasn't great at night. My chest hasn't been so bad since but I've had awful headaches and just been feeling really tired and run down.

On the teaching front, I started another new student yesterday, I have somebody hopefully coming for a taster lesson soon (I think she's too young, just turned 6, but will give her a chance!) and I'm still trying to organise something for the young girl with autistic spectrum disorder :) happy (and busy) days!

hope most of you are well, and thinking about all of you who aren't so well! hopefully you'll all feel better soon xx

Tuesday, 18 January 2011

not much to say really...

but just thought I should really update.

So, I'm now working 3 days a week teaching piano! Well, I say 3 days, but so far I'm doing an hour on Mondays, 2.5 hours on a Thursday and my 1st half hour lesson on a Saturday is happening this week. So, that's 4 hours...great, but it'll hopefully continue to grow! I'm trying to think positive, and all the signs so far are looking good.

Things at my other job aren't looking so great. There are redundancies happening within the education team, meaning that teachers and resources/curriculum coordinaters are all losing jobs, other tutors are having their hours cut, some are taking voluntary redundancy even though they don't want to, purely because they have been lucky enough to find another job (that they also don't want, but money is money!) Our unit managers had to reapply for their jobs as well and 1 position is being closed to them...they found out on Monday who was leaving but I haven't heard yet. We have at least 5 clients leaving senior campus with nobody lined up to take their place, and 1 unit on junior campus is being closed and changed to accomodate a new respite service that's going to be offered. The loss of clients means that there will be full time staff running about with nothing to do, meaning that us punters at the bottom of the chain (bank staff) will have little to no hours made available to us...they have cancelled 2 shifts for me this month already and others have unfortunately had more cancelled. Considering I'm only working there 3 shifts a week, that's a big loss for me, but at least I do technically still have my job.

Many of us are under the impression that the place is imploding...

What a ramble! Anyway, if I lose my hours at work, I really need to build up to about 25/30 students to be able to survive, so quite a way to go yet.

Stressful and completely depressing times at work, the atmosphere is understandably horrific.

Everything else is as was really, except our flat is TIDY!!! WOOHOO!! who would have thought it would take us over a year to really move in lol, and we might be moving again come June/July, depending where James is sent for his probationary year. Sake lol.

Anyway, enough rambling

Saturday, 8 January 2011


I can't believe I forgot to write about the 10k in the last post! I'm shocked and horrified at myself lol.

Anyway, in about June last year my uncle Alistair told me he was going to enter the Great Scottish Run for the CF Trust...and someone suggested I do it (for a laugh) but I took them up on it and started training. When I started, I couldn't run for 2 minutes let alone for 10k, but each day on the treadmill I saw improvements in my time and started to feel much much better I suppose that I didn't even really pay attention to the classic signs of infection and figured I was just being melodramatic, but then landed up on the ward at the end of July lol. Everyone thought that was it for me and not one person expected me to say I was still doing the run. Of course I was! My main inspiration there was Kirsty, who did a 10k in May 6 months post transplant. There was absolutely no excuse for me not to do it.

Anyway, training resumed and that was it right til the 5th September when we did the run. I finished 15 minutes faster than predicted but had a serious episode of lungs closing over and couldnt breathe at all at the end, was a bit scary, but that's what happens when you push to the limit and then some. I wasn't happy at the end either, infact, I cried out of sheer exhaustion, but then obviously I started to feel proud that I'd done it. I've never been a runner, a dancer yes, but not a runner. I couldn't even do the 100m at school without jelly legs and that was when my CF was near enough symptom free apart from my tummy.

So, together my uncle Alistair and I raised just over £1000! :)

That was probably the biggest thing that happened in the year and I completely forgot to write about it.

Wednesday, 5 January 2011


happy new year! I know it's a bit late, but nevermind.

Reading all the blogs I read and seeing everybody posting their hopes for 2011 on facebook and such like has obviously got me thinking about the year to come and the year that has just ended.

2010 was different. My Gran passed away which left the whole family with mixed emotions. She was quite a challenging woman and alienated a lot of people, but she also loved us all...just didn't know how to show it. My older cousins and I all felt guilty about not making more of an effort to have a better relationship with younger cousins and my brothers/sister didn't know her in the same way and I don't really know what they felt...strange and sad times.

I have been extremely lucky healthwise over the years, as will be clear to most, but 2010 saw some unexpected changes for me on that front. Nothing major but some new bugs and a hospital admission, meeting the diabetes team (but thankfully no insulin yet!) as well as a really crappy tummy and chest changes. My last sample of 2010 was clear apparently but it never seems to go with how I feel...each clear sample I've had I've been shocked by. BUT, can't complain!

I also had a couple of nice breaks away with James, got a kitten (yay!) and had some nice social engagements, although there could have been more of them. I met some lovely and inspirational people and also met some right bums. I started piano teaching again and am hoping that this will begin to grow in the coming year, but I'd also like a new job to go along with it. Nothing wrong with my care job really but it's sooooo tiring working shifts!

2011 will see me potentially uprooted when James starts his probationary year as a secondary English teacher. It will probably see us the poorest we've ever been when he leaves uni but isn't yet working...and that's an achievement as we've been pretty damn poor over the last 6 months.

So many things have happened that I can't even pull to the front of my mind at the moment, and so many things have yet to happen that I'm sure I couldn't even try to imagine.

I hope everyone has a great 2011!