Tuesday, 31 December 2013

Festivities and 2013

Well, that's it, Christmas is over and the new year starts tomorrow!

Christmas was nice. It was very relaxed and easy going and really I've not done a lot. We were all spoiled rotten and I think we managed to spoil the people we bought for...I hope anyway!

We've had a busy and fairly eventful year when I think back...although no doubt I've forgotten a million and one things that have happened! We started the year being told we had to figure out what we were doing with the house and get the purchase through ASAP, which went so well it took until September 18th to finalise. Work has been fairly steady for me, even with the usual summer holiday dip, but I've come to expect that now and can at least attempt to compensate. We had a few weeks of unbelievable weather - both beautiful and our freak white out that caused us to have no power/heat for 6 days. Fun! We've been to a good few weddings which were all beautiful, seen our friends get engaged and have babies and all kinds of lovely things so all in all I think it's been mainly a positive year.

For my family it's been a mixed year. The biggest event probably being David going missing and his body being found a couple months later. My uncle and his partner are still fighting to find out what really happened to him and are trying to change legislation regarding pubs and drink spiking.

For James and I, after the house purchase, our biggest event has been finding out about little fidget pants McEnaney. I think that could be his/her new name, because he's certainly living up to it in there! It'll be our biggest event of 2014 too which is exciting. On Sunday I turned 18 weeks and James felt fidget pants kick for the first time. I've been feeling movement for a couple weeks but nothing that he could have felt. I've gained a massive 0.5kg on my pre-pregnancy weight and my nurse yesterday couldn't believe I'm 18 weeks because apparently I look too neat haha. At least I'm not having to be rolled about yet! That said I've a chest infection that hasn't shifted with 2 weeks of oral antibiotics so I've been put on another 2 weeks and to get IVs next week if it still hasn't budged. Lung function didn't even hint at budging. Could really do without being on more than 28 days worth but needs must I guess if it goes that far.

I can't really think of anything else to say at the moment other than I hope everyone has a healthy and happy 2014 and I hope our 2014 turns out to be as good as it's looking!

Much love xxx

Sunday, 17 November 2013

It's been SO long

Almost 6 months to be precise! What a ridiculous state of affairs. It's not that I've had nothing to write about, it's really just that some of the things I've wanted to talk about I've had to keep quiet...until now.

The summer was brilliant. It was very hot (often far too hot) but it made for lots of days spent wearing shorts/dresses and sandals. I managed to stay well most of the time because it was dry (I tend to fair much worse in the wet winter months) and got to enjoy myself! Only thing I will say is that spending an entire day at a wedding in 30C heat was a challenge too far. We were all ready to take a run into the sea!

We were told in July that our mortgage would finally be going through and we would be home owners, finally. That turned into our mortgage going through on September 18th, with only 4 days until the building society cancelled our offer and we were back to square 1. To say that was stressful is a wild understatement. We were constantly on the phone, constantly emailing, and constantly being pushed from pillar to post but THANK GOD it's finally through and we no longer have to deal with landlords. Phew.

A whole 5 days after our mortgage went through, on James' 27th birthday, we found out that I'm pregnant! Yes, I couldn't believe it either. Well, I could, because it wasn't an accident, but it was a bit of a shock none-the-less. I'm now just past the 12 week mark and starting to round out a bit, although I think this weekend it's mainly just my rubbish CF bowel that's making me look round lol. It's hard to tell what's causing it. Since getting pregnant, I've had a sickness virus and now have a heavy cold that I'm hoping isn't starting to descend to my chest, but I was awake during the night wheezing and whistling and just generally sounding and feeling rubbish so we'll see what clinic reveals on Thursday.

I can't really think of much else that's happened to be honest, because these 2 big life events have kind of taken over my memory, but I'm now in the run up to Christmas concerts and dinners out etc which are great fun when you can't drink! I've had 2 sober weddings already and man are they difficult. Not that I get completely plastered every time I go out normally, but a couple of drinks take the edge off certainly and make dealing with other drunk people a lot easier! To make matters worse, I had to use the excuse of "I'm driving" rather than just telling people the truth because we hadn't had all the necessary scans and tests.

Historically, my health has been pretty rubbish for me from January to April/May time, so I'm really hoping that this year things are different. I'll update after clinic on Thursday if I can be bothered.

Hope everyone else is keeping busy and well. x

Wednesday, 29 May 2013

Annual Review

Yesterday was that day. Yes, that day we all hate - annual review day.

I left Arran on the 9.45am boat, sat about in Ardrossan for nearly an hour waiting for a train to Glasgow, then got another train out to the hospital and arrived at 12.50pm. My appointment wasn't until 1.30pm, so I just sat and tried to stay awake in the waiting room.

Clinic was late in starting, as usual, so at around 2 I was sent to X-ray, having only had a brief chat with 1 of the nurses, then told to go straight to physio then straight to lung function before heading back. Well, I sat in physio waiting room for half an hour and no sign of a physio! She eventually came but I only had 10 minutes of my appointment with her left so we did the 6 minute walk test then I left. I think I walked about the same distance as last year and my sats stayed mainly at 96 while walking and didn't drop below 95 which is an improvement on October. My lung function was up another 5% which was good news. All this walking and singing seem to be doing me good. Oh, and I only needed 3 vials of blood taken as I had full blood work done in February. Yay! We managed it in 1 go, which is a miracle considering the nurse just looked at my arm and my veins collapsed lol. It was VERY hot though so I think that helped.

My appointment with the Dr wasn't so great, if only because I don't feel I was listened to properly and didn't get the antibiotics I was hoping for to help my sinuses, just got told to eat ginger. Fine, I love ginger, and maybe they help a bit but my glands are all still swollen and the amount of horrible crap coming from them and the pain, I know I need an antibiotic! I'll give it a week. My chest was half sounded (didn't listen to the lower lobes and did a rush job) but apparently that was sounding ok.

I got a bit of a fright when I saw a letter written by a consultant to my GP about an x-ray taken in March, but having spoken to my GP today about it I feel much better. It said that the radiologist suggested I might have TB and that I should have a CT scan to investigate further, but I'm told apparently he/she didn't know I have CF and thought the CF changes were TB! Doh. Although, it does say as well that there has been deterioration since April 2012, particularly in the left base and upper right lobe. Bummer :/ I'm absolutely convinced that these are the areas I've been bleeding though, so totally not unexpected and having seen the x-ray when it was done in March I kinda knew it was coming, although I thought it might look better yesterday but it didn't.

Once that was all over I was ushered out mid-chat with the dietician because they were concerned I was going to miss my ferry lol, so I left the hospital at 4.45, got 2 trains back to Ardrossan then the 7.20pm boat and I was home at 8.30ish. Long bloody day.

But hey ho, at least that's it over for another year.

In real life, nothing much is happening. I'm practicing my piano a lot because I got some new pieces that I'm totally in love with. I'm still teaching, the invigilating for SQA exams finishes next week (thank god, never been so bored in my life!!) and in 5 weeks it's the summer holidays, wahoo!!

Tuesday, 23 April 2013

Let's get the CF stuff out the way first! Good news is I haven't had a bleed for 2 weeks and 1 day. Woop!! I have, however, come to the conclusion that I hate using seretide. Don't get me wrong, it's nice to be more or less cough free, but when I need to cough I can't and I can't feel anything at all in my chest. As well as the lungs, I'm having trouble with it because of my mouth. My tongue and throat are completely coated and scratchy and behind both my top and bottom lips are all red and white and blotchy. My lips keep splitting and bleeding as a result too and it's making me most unhappy! I haven't taken it since Saturday and although I'm wheezy and tight (which ventolin helps with) I can actually feel where the crap is and get it out...and it's really rather rotten still. To top it all off my sinuses are killing me.

On to real life. My exam kids did really well! One girl (age 12) got 138 out of 150 (distinction) and that included full marks for 1 of her pieces and full marks for aural. Brilliant! The only boy (age 8) got 125 out of 150 (merit) and unfortunately could have got a distinction if he had passed his sight-reading, which he failed by 1 mark. Completely gutted and I know he was a little upset about that but overall very pleased with his grade. They were both sitting grade 1 and did really well. The other girl sat prep test and received a great report.

I'm trying to figure out my work life. I'm totally stuck on what to do, as the piano teaching hasn't taken off as well as I'd hoped on Arran and the people I have keep taking lots of holidays, so I'm skint! I really don't want to stop teaching but I need some financial security, especially after the 3 weeks off over Easter (not my choice, just that everyone else took holidays :/ ) and the resulting bank charges etc. I called a couple of places today for application packs so that I can at least sit down and think about what to do.

My cousin, David, who went missing in January has been found. Or at least they think he's been found. My family are currently waiting for DNA results on a body found near where David was last seen, and wearing the same clothes. It's been a really difficult time for everyone so hopefully this will give them answers and they can put him to rest. I can't imagine what they must be going through, and they have been fighting to find him all this time.

Not sure there's much else to say...I'm sure there is but I can't think.

Oh, turns out that gin is actually quite nice! Just a by-the-by haha

Friday, 29 March 2013


What a mental week!

On Friday (22nd) we woke to our power going off and on every couple of minutes before shutting off completely...and staying off. No doubt most people saw Arran on the news and the absolute state of the place from the snow. Where we live is over the other side of the island from what was shown on TV and is more sheltered, so although we had loads of snow, we didn't have the 10ft drifts to contend with.
On discovering the island still had no power on Saturday morning, James and I decided to head off the island to stay with my mum and dad. We had spent Friday night staying with friends who have a wood/coal fire so we could get a heat and spent the night playing monopoly by candlelight while drinking wine. Delightful haha.

Anyway, we took a visit back home on Tuesday to see our cat (who is being looked after by our neighbours) and found out our power had come back on via generator on Monday night, but that our boiler had given up! ARGH! By the time we left again we had got the hot water working but still had no heating. Fingers crossed it's working again when we go home tomorrow.

My exam pupils sat their exams yesterday and seemed to do really well! Couldn't be more proud of them, they really had worked so hard. I can't wait to see their reports and hope they are pleased with whatever grade they get.

On Wednesday I managed to get an appointment with physio up at the hospital, because despite all the physio I was doing in the 12 days since my clinic appointment, I was still barely shifting a thing and it was really starting to annoy me. On top of that, I was still coughing up blood every few days and seemed to bring one on during physio on Sunday night. I don't know if the bleeding has subsided or not as the longest I've gone without is about 6/7 days since January so I'm keeping my eye on that and hope to at least last 8 days this time. Who knows. Anyway, back to the point! My physio appointment went well even though we didn't manage to shift anything. She said she couldn't hear or feel a thing moving, and I could've been convinced there was nothing there if it weren't for the X-ray telling me otherwise, as well as the weird tickly feeling at the top of my chest. We decided I need to be back on hypertonic saline but because I can't tolerate the 7% I  have to dilute it to 3.5% and hope it works. I also got an AD belt to try but can't decide yet if I think it's worth the bother, considering I'm using PEP and various nebs anyway. I'm finally starting to see some progress since then though and on physio's request sent her a disgusting picture and she thinks I have bronchial casts. Yum :/ Words cannot describe the taste....sorry, but I've honestly never tasted anything that made me want to throw up more.

I swear my life isn't all disgusting!!! Lol.

My sister is coming home tonight so I think we are going to get a Chinese take away and maybe a wee cider or something, but I'm completely knackered and working tomorrow morning so it'll not be a late night.

I would really love to get off to somewhere hot and sunny...

Friday, 15 March 2013

the bigger picture

After spending all of Wednesday feeling anxious about clinic on Thursday it turned out to be the most productive visit I've had in ages.

For the first time in a year I saw a consultant. What a difference it can make having a different pair of eyes.

I was immediately sent for a chest X-ray because of the bleeding which was worse than my pre-IV X-ray. I also had a "bad" X-ray in October so there were a few there to compare it to. My right lung in particular is full of mucus plugs blocking off the lower airways and it's like trying to unstick glue. Even with the help of a physio there was no movement what-so-ever. The weird part, though, was that my lung function was actually up. Only slightly, but still up. I don't know sometimes.

I'm always being told "you're lung function is fine" even though I can clearly see and feel that it's been dropping. Finally, someone took the time to look backwards and see that in fact my lung function, although not horrendous by any means, was not "fine" - I'd lost about 15% in a year. On a good day. So because I complain of tightness a lot and not managing to get anything up during physio but ending up in a wheezy mess instead, he decided to try salbutamol through nebuliser, and although it felt like I'd inhaled water (honestly thought it had been completely useless), it put my lung function up to a figure I thought I'd never see again. Stoked. He changed my steroid inhaler to a better 1 too.

That does mean that I've come full circle on the asthma front - having had it as a kid, for it to bugger off, then come back. I don't mind though, now that it's been confirmed it's there, it can be treated.

As for the bleeding, nobody knows. I'm not allergic to my aspergillus, my bloods were fine, so I just have to hope it was maybe very irritated airways or something.

It was a weird atmosphere...relaxed but intense.

So I left on a bit of a high for a change. I went to visit a couple of very good friends last night for a catch up as I don't see them nearly enough with living on Arran. It was great to get some girly chat, as I don't have anywhere near enough female friends on Arran who are around my age. Or who I know well for that matter.

Anyway, I don't really have much else to say, just wanted to write what had happened at clinic because it finally feels like something good happened.

Monday, 4 March 2013


Frustrated is a bit of an understatement.

Yesterday was a bad day. I don't remember the last time my chest felt so crap. It was like someone had poured glue down into my right lung, I just couldn't get a deep breath in it was so tight. I did everything I could to try and shift the stuff that was stuck - nebs, inhalers, physio, fluids, taking the dog a walk - all of which worked a bit eventually but it wasn't straight forward. Literally 1 minute into my walk with Fionn I started having haemoptysis and coughed so much that I vomited. Nice. The rest of the day I had super gross sounding cough and continued to have blood, in varying amounts, til about 5/6pm (after it starting at lunch time).

I'm annoyed cause it's a big change for me but I feel like I'm the only person taking it seriously. The fact it's "normal" in CF patients doesn't matter to me. I want to know why it's happening and I want it to stop! I don't want to become part of the group of CF patients for whom coughing up blood becomes a regular and normal thing. It's not normal, end of.

I'm also frustrated because it puts me off doing the things I love. I don't want to sing for fear of setting it off again. I don't want to go for a walk/run because it'll probably start it again too. I know I need to do these things to keep my chest in working order, but it seems counter productive if it's going to cause bleeding, after which I'm not supposed to do much physio, and certainly not allowed to use my PEP, and nebs aren't advisable either. Point?

On another note, it's less than 3 weeks til the Arran Music Festival. I'm singing, playing piano solo, accompanying singers, and just generally running about like a headless chicken for a night! I'm hoping it'll be a fruitful first festival for me and maybe result in some more work. Fingers crossed.

So, I'm off to get dressed and take Fionn a walk before going a rehearsal for the festival and taking a few lessons later.

Thursday, 21 February 2013

bye bye IVs!

IVs finished on Tuesday, yay, and got my line out today! My lung function was back up to what it was over Christmas which is good news, and almost up to my best reading in a year. Nobody could shed any more light on the bleeding, as nothing has really changed apart from the return of staphylococcus. After not growing it for around a year and stopping flucloxacillin in August (I thought I stopped it in October, but nevermind!) I have had 2 samples with a heavy growth (December and pre-IV). Sake. Dr was fairly insistent that I don't start back on fluclox though because of the bother I have with thrush, so we're just hoping at the moment that I'll manage without it.

I was really impressed with my numbers today because I've had some pain and a bit of a cold over the last few days but must not be on my chest this time.

I even managed to gain 0.7kg which is unheard of on IVs. I always seem to lose weight on them but I didn't have so much nausea this time so managed to eat like a complete pig and James kept buying me jelly babies and cakes, as did mum!

Next week we are hoping to have our house valued. I'm dreading it because our ability to buy it is based purely on how much they say it's worth :/

Work is going reasonably well. Feel a bit bored again and can't wait for the kids' exams to be over cause I'm sick listening to the pieces (regardless of how well they play them)! I'm anticipating a distinction and a merit for my grade 1s, although if the 2nd was to get distinction too I'd be over the moon! Only other exam this time round is a prep test, which doesn't get graded :)

BTW, stuff getting an epidural put in! I'm watching a midwifery program, apologies, and that looked painful.

I'm feeling pretty good at the moment, emotionally, and I am seriously enjoying seeing some sunshine :D

Tuesday, 12 February 2013

Lots on my mind - bare with me

Sorry for this, it's going to be boring, but I feel I need to write it down because it's taking up too much mind space.

I'm sure you can imagine with having had a few episodes of haemoptysis (coughing up blood) recently it's been on my mind a lot. For the first few days this time it scared me - not because it hasn't happened before but because it was more than I've experienced - but now I'm less bothered. For 3 days I hardly slept, thinking about it constantly, worrying it was going to happen again and just generally freaking myself out. Wondering what it means for my health.

The fact is I still don't really know what it means for my health. All I know is it's just "one of those things" that sometimes happens in the lungs of people with CF and that I haven't had enough blood to warrant an embolisation (woop! :/ )

Anyway, I thought it had come from my right lung because I had some pain/tightness in there, but during a physio session in hospital I shifted old blood from left side, swiftly followed by more fresh blood. That confirmed for me it's my crappier left lung. In particular, the crappiest bit of my crappier lung! Thinking back to the 2 weeks ago when this all started, I remember feeling a pop at the bottom of my left lung when I went to bed during the day, followed by bit of a gurgle. It made me cough but I didn't think much more of it because sometimes things pop and gurgle and that's that.

What also came back to me was the blood from when I had the nasty cold, that I thought was sinus blood, but now I'm convinced it wasn't. I think I had a small lung bleed during the night while asleep, but there was so much gunk in my chest blocking it from rising to my mouth that it just sat there. I know this now because of the amount of crap that came up before the blood! Duh!

Anyway, tomorrow is the start of my 2nd week of IVs. I did feel a bit better before starting them after a week on oral septrin, but I decided just to stick to the plan of having IVs anyway. From Thursday til yesterday I thought I'd made a mistake because I wasn't shifting a single thing from my chest. I was just getting tight as heck and wheezy during physio, barely even coughing at all. I don't like to take any antibiotics unless I need them so I was getting annoyed with myself. This morning however was like a mass exodus from the lungs so maybe it wasn't such a bad idea after all, just needed time.

Friday, 1 February 2013


I'm sorry this video is on its side, stupid phone couldn't rotate it and neither can any of the video programs on my laptop. Anybody got any ideas? Also, I tried to embed it but it was having none of it. Technology does not like me at the moment.

Ok, so that's a quick update that I made on Sunday 27th Jan. On Monday I felt even worse than I did on Sunday and took myself back to bed, only to cough up pure blood after 45 minutes, forcing me to cancel all but one of my lessons cause I didn't want a repeat performance infront of anybody, especially kids! Tuesdays lessons were also cancelled as I trailed my butt the 3 hours to clinic (living on Arran has a lot to answer for!! It only used to take me half hour) to be asked to go back next week to be admitted to start home IVs. I can't go home straight away because of levels and I ain't traipsing back and forward by boat all week.

So, I made it 12 days between clinic appointments lol. In that time my lung function dropped about 10% (not too shabby), my sats dipped a little but the biggest kicker was losing 2.3kg in under 2 weeks. What?! To some people it might not be much but when you're only 4ft 10 it makes you look quite skinny. My mum was so funny "What do you mean you've lost 2.3kg? How is that even possible without trying? They must've measured you wrong!" I think she's forgotten what CF is lol. If I lose another kg I'm right back to where I was in April, which is skinniest I've been since I was 15. Ah well.

So I've not done any running this week. My Dr asked if I think I'm doing too much, and at the time I said no, because I don't think I am, but then that got me thinking about what I actually do. I walk the dog 5 days out of 7, usually for an hour minimum. I sing in a choir and smaller singing group, as well as sing in my own time. I work for myself, which involves long Friday and Saturday every week as I drag my ass 3 hours over to mum and dads on a Friday, and then back on a Saturday, with 15 piano lessons in between lol. There's housework to do and last few weeks we've been stressed with so much other stuff happening. I don't think it's too much but maybe my body thinks would certainly explain why I'm so exhausted.

Hey ho, onwards and upwards as they say! Hope all you lovelies are well.

PS I have good news, but I want to wait til it's absolutely finalised before I share, so keep an eye out!

Thursday, 24 January 2013

My Lagan Love

So, yesterday I joined a ladies singing group called Vivace. I think there are 8 ladies who meet every week to sing with the aim to performing in festivals and at weddings etc. I've recorded myself singing the tune to My Lagan Love which is an Irish folk song. I'm slightly embarrassed about posting a link to it on here as it is terrible quality and not my best singing either (just can't get the first few words of each verse to sound nice!!!) but hey, I need to get over myself and stop being so embarrassed to perform, and you're all a nice bunch so seems a decent place to start. There were slightly better recordings but I had horrible throat clearing and coughing so they're no good! Damn CF has been ruining my performances all my life lol.

I also recorded myself singing and playing Brahms "Der Tod, das ist die kuhle nacht" but it's even worse quality and it goes very high so makes your speakers do that nasty buzzing that happens when a track hasn't been edited properly, or the performer has been too close to the mic (both of which are true in my case because the only place to put the laptop is right next to the piano and I can't remember how to work editing software....naff)

Please send thoughts to my family, and prayers if you're that way inclined. My step-cousin has been missing since 2am on Friday. Mountain Rescue, divers, police, everyone is looking for him and so far no luck other than his wallet. It's a terrible time but people have been so supportive to my Uncle Malcolm and David's mum Donna. It really is awful though, he's only 18 and just started studying at Stirling Uni in October :(

Friday, 18 January 2013

busy doing nothing?

Yesterday was clinic day. I hadn't been feeling my best the last few weeks after the cold from hell, with horrible chest tightness and coughing up lots of icky crap, but ramping up the exercise has obviously done the trick because lung function was only down 1%! yay! It was a very boring clinic actually, but that's usually a good sign that things are fairly stable. I got a new drug for my tummy called prucalopride (or resolor) which is a drug for adult women with chronic constipation who don't respond well enough to laxative therapy. Not a CF drug really but my friend was prescribed it by a gastro doc and the cf team jumped on it when they found out how well she was doing with it. I'm not gonna lie though, the headache is immense, and the dizziness, slightly numb mouth and nausea are pretty yuck so it better work!!

January is definitely the month for trying to get life back on track. This morning I have been on the phone to the bank setting up a payment plan to start repaying some debt. I've also filed a tax return and have nothing to pay (thank god, cause don't know where the money was coming from!) As I said I've ramped up the exercise, given myself a good kick in the butt and made myself get on with it, which is hard when all you want to do is stay in bed. I decided to run another 10k so started training for it last week (it's in 16 weeks, eek!) and it's been tough. Arran is not flat, it just isn't, everywhere you turn there's another hill, so running there is quite challenging, but as I said it's done my lungs the world of good because the more I clear from my chest the less tight it feels and the less I cough the rest of the day. Fionn has been running with me and trying to kill me in the process! The first day out he thought it was a game and kept running at me and jumping right up at me which nearly sent me flying every time, but now he just puts things down ahead of me and picks them up again just before I land on top of him. He obviously likes the thrill of nearly being stood on...weirdo.

We are still trying to find a way to buy the house we are living in, which is causing no end of stress, but think we might be getting somewhere after I had a meeting with a mortgage advisor yesterday and should start reapplying on Monday. All it means though is that I need to become a domestic goddess and get the house tidied for a survey...I am no domestic goddess, no matter how much I try and kid on I am...our house is a tip (apart from my teaching room, cause I'd die if people thought I was as messy as I actually am lol) so I'm gonna need to get cracking on that.

Next week I am judging Arran Young Musician/Singer of the Year....kill me now lol, and in March the Arran Music Festival is happening. I have a young singing pupil and a piano pupil both wanting to enter competitions taking place during the festival and James is making me enter (although I hope to enter the only non-competitive class). I have had some interest from people wanting lessons just so they can enter the festival competitions too, which is a bit weird but fair enough I suppose. My Saturday teaching sessions are starting to cause bother for pupils. They all want the early slots so they have the rest of the day but I can only teach 1 person at a time and the morning sessions are all gone! I think I'll be losing 2 in the next few weeks probably because they come from 1-2 and having tried it for 6 months are not happy with staying at that time. I can't take them another day unless they want to get the ferry to Arran, and actually to be honest I think the young boy wants to stop his lessons anyway. He keeps telling me how much he hates coming and how he wants to be at home lol. I just keep telling him I feel exactly the same and if he doesn't sit down and get on with it I'm gonna cancel his lessons for him. We definitely have a love/hate relationship, but it's quite entertaining.

Anyway, that's all for now. Hope you are all fine and dandy :)