Monday, 31 December 2012


2012 has, like most years, been a mixed bag. It has been amazing at times, but rubbish at others. I've been ill, people around me have been ill, even died from illness, but at the other end, I got married, more or less stabilised my work and turned my health around through hard work and refusal to let it stay bad.

There are people no longer with us who I will truly miss forever. They were lifelines when things were bad, offering support and comfort (from a distance, seen as we couldn't mix!) and just being there to listen to me moan and I hope I was able to do the same for them.

James and I had a fantastic wedding and really loved our honeymoon (take me back!) followed by a house move which wasn't so much fun and new work loads etc. We got a new rabbit after my wee sausage Coco passed away :( We also got our first dog, who is hilarious and just loves his wee life.

As for the end of 2012, it's been good. Christmas was lovely. We spent it with family and just chilled out. James and I have both been ill though. James woke up with a heavy cold on Christmas eve, followed by me on Christmas day. Mine is on my chest, with viral bronchitis, and I can't smell a thing! Boo! I have to go back to hospital 17th Jan for my normal clinic so it better have cleared up with the extra steroid inhaler doses and antibiotics to keep everything else at bay. My sinuses have been rubbish with it, really painful and bleeding while I've been asleep, leading to me coughing up a whole load of old blood when I get upright again. Yum :/

My mum has been coughing since October so my sister and I have been badgering her to go to the doctor for tests. Every excuse under the sun from her, but she better go because it's not just a wee pathetic cough, she says she can't get a breath in and ends up barking and gasping. Not cool, mum, get it sorted.

Today is new years eve. I'm supposed to be in bed still so I can last the night (cannot be bothered, but hey ho) but my stupid stomach woke me up and I caught Fionn chewing my mums new fat face scarf. Now I need to buy a replacement. Great.

I hope you all had a great Christmas and have a good start to 2013 when it comes. I doubt this post makes a whole lot of sense, but thought I'd just pop by to let anyone reading know that I'm still about and still just doing what I do.

HAPPY NEW YEAR when it comes :)

Thursday, 15 November 2012

Yoga Cures?

Not sure about that yet, but after trying a few "flows" today for the first time in donkies ages, I'm able to say that it helps at least.

I tried yoga for a stiff neck and back, for hip flexibility, and for all over flexibility. The hip flexibility exercises are rough and I know I'm gonna be in agony tomorrow, but the neck and back exercise was best for me as my lower back always needs cracked out (well, "clunked" might be more appropriate) and instead of just lying on the floor and twisting my lower body as I usually do, I managed to "clunk" it out mid exercise and it's helping my muscles as well. Win. The only drawback is the pressure/pain in my wrists when I've been leaning on them a while.

I found videos on youtube of an American woman who makes it really easy to understand and isn't all foo-foo as a lot of instructors are. Her name's Tara Stiles, so check her out if you're interested. I've been reluctant to do yoga/pilates again for ages cause I didn't like the last instructor I went to (who was terrified of my CF and thought I'd die in her class) so this is a great find. The other thing is that I'm not interested in the spiritual side, I don't want to spend half my time doing hand gestures to the gods etc, and so far she's steered clear of all that. I'm doing it open up my body and hopefully create a happier mind due to having less physical pain to drag me down.

I'm quite confident to do lots of the exercises at home because of my dance history. I know how to keep my hips in line, I know how to tell I'm tense etc, but I doubt I'll be trying any handstands or anything on my own!

Anyway, I'm hoping to do some yoga each morning before I take the dog out, so I'll report back soon with how I'm getting on :)

Tuesday, 6 November 2012

On a mission

Can't believe this blog now has 100 posts! Most of them are complete and utter pants but heyho!

As the title suggests, I'm on a mission. It's obviously coming to that time of year when the weather is mainly rubbish, it's getting darker, colder, wetter, and more difficult to remain optimistic about life and everything involved in it. After my journey into the deepest darkest corners of my mind at the start of this year, I have decided I need to take steps to make sure I don't end up there again. There was the added complication of being unwell at the time and being given drugs which make you feel even worse, but there is always the possibility that could happen again anyway. As a direct result of feeling so crap I lost friends and wasted day after day wallowing in my own sadness.

I already feel a bit better now I'm walking with Fionn every day. We generally walk for between 1 hour and 2.5 hours each day, which is a lot but is starting to feel good. I think I've now managed a whole week without needing to sleep in the afternoon. My annual review lung function was done last week and had gone up by 3% (20% since April) so my lungs are feeling pretty good. My tummy is feeling better now my creon is sorted (1 creon for every 5g of fat) and although my sinuses are infected, I'm so used to them being painful that I barely notice any more unless they're particularly bad.

I have a set up a pinterest and I'm using it at the moment to store things I can look at to keep my mind in a positive state. I generally don't go for the "inspirational quotes" type stuff, I find it all quite sickening at times to be honest, but I'm choosing some that strike a chord and remind me that I'm not actually useless, worthless or any of the other things that we can all feel at times.

Work is pretty steady. I'm up to a ridiculous 22 pupils: 4 on a Monday, 3 on a Tuesday, 7 on a Friday and 8 on a Saturday. Friday and Saturday are all on the mainland, so I still have a way to go to get busier on Arran but it'll happen (and thankfully I've filled the gaps left when 2 or 3 pupils left). I have 4 kids working towards grade 1 at the moment, although I'm anticipating only 2 of them will be ready for the March run.

Tomorrow I'm going to the choir conductors house to "audition" for solos. It's more a "come along and sing some stuff" and if I'm good enough I'll be added to the list of people who are willing to sing solos. The only solo available at the moment is no use to me because of the style, but I'll be keeping my eyes and ears open for 1 that would suit me.

Thursday, 27 September 2012

So since last time things have been much the same to be honest!

I still feel I'm suffering the effects of the cold after nearly 4 weeks, although no where near as bad. Only difference is instead of the phlegmy horribleness being non stop and "viral" looking, it's looking more like infection and tastes awful. I've managed to get through most days this week without a nap though, so that's progress!

I fell out with creon. I stopped taking it, after over 2 years of trying to get my dosage right again. It's been driving me completely insane, and to be honest I just reached the end of my tether with it. However, after enjoying a lovely steak dinner on Sunday night for hubby's birthday, I spent all of Monday is serious pain and all the other things that go along with no creon, so I emailed my dietitian (Diane) and posted on the CF Trust forum to get help to start back on them. Diane and I decided to start again, as if I'd never taken creon before, and we're going to buid up based on symptoms. So today, I have had 6 creon - 1 with breakfast, lunch, and 2 snacks, then 2 with dinner. Nowhere near enough, but better than nothing I suppose. I'm sending her a food diary via email tomorrow so hopefully I'll be on the increase over the weekend.

CF rubbish aside, Fionn and I have been having great morning walks. I started walking him last Thursday, starting at about an hour. Now we're up to 1.5/2 hours, depending on where we go. We have walked through Lamlash - on the beach, grass, roads, pavements - and have twice down to Glenashdale at Whiting Bay. Yesterday we did Glenashdale Falls and out to the Iron Age Fort, and today we came the opposite way, hitting the Iron Age Fort first, then the top of the falls and up to Giants Graves. It's been quite tough on my chest at times with a few steep hills I thought I was going to have to crawl up, but I made it and I didn't kill myself in the process lol. I'm using it to get myself into a better meds routine as well though, nebbing DNase before I go (I've been pretty bad at getting back into taking this properly since the move).

I've joined a choir as well :) It's predominantly elderly people, but that doesn't really bother me. They sing mostly light hearted stuff like Richard Rodgers (Bewitched, My funny Valentine etc) and a medley of songs from Guys and Dolls (love) but there are also a couple of more serious numbers so it's good fun.

I hope everyone is feeling well, much love

Wednesday, 5 September 2012

bad timing

Ever feel like your body is taking the piss out of you? Lol, that's how this week feels.

I got our border collie pup, called Fionn (Fin), on Thursday which was great. With each new day he gets more and more crazy so I can't wait til he's had all his injections and can go for walks instead of tearing through the house, jumping up on the couch and pissing off the cat.

Thursday my appetite was shocking, Friday was the same, then Saturday came and my chest went nuts. Come Sunday I was asleep practically all day, and when I was awake it was like my limbs were lead and just moving was so tough. Yesterday brought a full blown cold into the mix, blood streaking and just generally feeling lousy, so I gave in and phoned the CF team. I'm not gonna be seen unless things don't get better or get worse, but I started on a couple of orals that I have in the house in the hopes that it'll stave off any time off work. In the past I would just have gone up to clinic, but now it's such a hassle and I can't just go without telling anybody now either (as in, family etc).

Looking after a 13 week old border collie is tough work at the best of times, but my patience is wearing extremely thin cause I'm so tired and feeling poo that I just want to go back to bed.

Here are a couple of pics of Fionn when I just brought him home. He was such an angel that day lol


not many border collies in the world with black, white, tan and grey/black spots.


sleepy wee dog


he has such a cute little face

PS I've decided after much discussion that the rabbit shall be called Gandalf. He has the coolest long grey/brown hair so it's quite fitting haha.

Thursday, 30 August 2012

Best. Clinic. Appointment. Ever.

So, the title says it all.

Lungs were stable, weight was up, tummy was a bit rumbly but nothing major. To top it off, they've taken me off flucloxacillin. I feel a bit weird about it after being on it every day for about 15 years, but I haven't grown staph for about a year now and they think it should help with my "candida problem". It better! I'm getting sick to death of the constant low grade pain and the taste and all the symptoms that come with candida in other places. Delightful.

It was also a great appointment because I took along some wedding pictures which distracted everybody enough that there was nothing to moan about haha. Clearly this is the answer to getting through clinic appointments!

Well, we've been in our new house just under a month now (next Friday we hit a month) and today I am going across to the mainland to get a DOG!! We're getting a 12 week old border collie :) It's gonna be a nightmare to start cause he hasn't had any jags so can't do big walks, but we have both had dogs (James had a border collie) and we got Fudge as a pup, so I think we're fairly confident we know what we're doing. We also have the added bonus of a sheep dog trainer who lives next door. As you can imagine, he mainly works with border collies, which is even better.

Work is picking up, slowly but surely. I have 14 pupils on the mainland and all but 1 of them have been with me since before the summer. I even have 1 who has been with me since my very first day, which is brilliant. She did amazingly well in her prep test and is preparing now for grade 1 :) As for Arran, I have 1 singing pupil and 4 piano pupils, and I know I will have at least 1 more of each in the next few weeks once they have returned from holidays. I don't really want to do singing to be honest, it's embarrassing when things start shifting in the lungs and make me cough and splutter all over the place, but there has been demand for it so I can't really turn down the opportunity for more work.

I will post a pic of puppy once I've picked him up. Excited. And James is even more excited! lol

Hope you're all keeping well, and love to Gem who's having a rough time xxx

Thursday, 16 August 2012

little Scotland

Where to start? So much has happened in the last month or so that it's hard to know...

Well, first off, our honeymoon was fantastic. I don't have any of the photos on this computer (I'm on James' laptop cause a whole row of my keyboard doesn't work, and the pics are on my dads computer anyway!) so can't post any on here, but there are lots of them on facebook :) We were in Vallehermoso, La Gomera, and it was relaxing, very interesting, traditional, and just great really. We both enjoyed it so much. You know when you go somewhere and really feel a was like that for both of us. The people were extremely nice, although they spoke very little English which was a challenge for me as I have never learned any Spanish. We did a few walks, mainly in the National Park (Garajonay), ate out, BBQed, went to beaches, museums, sun bathed, read lots and spent lots of time chilling.

On the Saturday before we left there was a festival on called "Atlantic Sound" (or Atlantico Sonoro) where they had lots of activities on during the day. James had a lesson on the didgeridoo, we both learned how to use the local "clay" to make a dragon tree each (mine was rubbish!) and there were other things on like yoga, pilates, African drumming etc etc. It was basically a hippy festival, it was great fun. That night there was a concert in the main square of Vallehermoso which was awesome! The first band were Spanish and had lots of percussion, including a tap dancer who was used as part of the rhythm section, it was very cool for a music geek. The 2nd band were African and also very cool, lots of drums and strange instruments I'd never seen before. We spent the whole night sitting outside 1 of the bars in the square eating pizza and drinking wine and Gomeron (the local grape brandy mixed with palm honey) and the most hideous shot ever which we could taste for at least 3 days after drinking it. Ew.

Our very last night was spent on Tenerife to make our journey to the airport home easier. Turns out Tenerife is a bit mad and they put lots of alcohol in their drinks. I didn't feel hugely drunk, or certainly not the drunkest I've ever been, but I had the most awful night. It felt like my lungs and sinuses had filled to bursting with mucus and I couldn't breathe properly in my sleep. James woke a few times worrying about how much I was struggling, and the next day I was very sick, which was no fun as half the day was spent in the airport. I was genuinely worried that I'd done damage thanks to not knowing exactly how much I was drinking. At least if you go out in the UK they have specific measures and you know exactly how much you're taking in.

Anyway! When we got home we started packing up the whole house for the move 6 days later. We moved last Tuesday and seem to be settling in quite well. James started back at work yesterday and my mum and sister visited me for a few hours as my sister goes back up to Dundee today and I won't see her again for ages!

As for the title of the blog, as most of you know we have moved to Arran, which is nicknamed "little Scotland", as it's mountainous at the north end and mostly farm land at the south, which is pretty much what mainland Scotland is like. We are living in Lamlash, which is only about 10 minutes drive from the ferry terminal in Brodick, and if you keep going on through Lamlash you hit Whiting Bay, which is nicknamed "little Yorkshire", which I don't think I need to explain lol.

Next week I have my first clinic appointment since moving which is gonna be a complete pain in the neck. It's on Thursday morning at 10.30, which means I need to be on the mainland on Wednesday night so I can be there on time. The other clinic option was Tuesday afternoon, which would be fine for getting off Arran and there on time, but there's no ferry to get me back! It's rubbish to be honest. Means I'm gonna be staying with mum and dad from Wednesday night til Saturday because I'm teaching on the mainland Friday evening and all day Saturday.

I also managed to freak out my new Dr surgery a bit, well, the sister anyway. She admitted herself that she doesn't really know much about CF and was a bit overwhelmed I think by my medical history. So today I'm going to meet my new GP because apparently they like to meet their new patients who have repeat prescriptions. Yawn.

This is a bit of a long blog, apologies, I'll try and update a bit more often so you don't have a book to read!

PS. James and I were very upset to find out that La Gomera has had serious forest fires since we left and that 25% of the National Park has been destroyed and will take at least 30 years to recover. Thousands of people have been evacuated from the west of the island, including from Vallehermoso. Gutted!!!

Sunday, 15 July 2012

Mrs McEnaney!

It's official, I am now a Mrs! lol

This is just a quick post cause I can't really be bothered to write about everything and post pictures yet, I will do that after honeymoon and, lets face it, probably after we move house!

We had a fantastic day, everyone has been commenting on how fun it was and how much they enjoyed themselves. We got a lovely day (it only rained at about 8pm when we were all inside) and the castle was absolutely beautiful. I didn't see how it was decorated until I walked down the aisle, but it really was more than I could have hoped for, thanks to our friend Deborah who did all the flowers and setting up of the castle.    

I was picked up in a 1947 Rolls Royce, previously owned by the Princess of Monaco (mad, I know), so the drive to the castle with my Dad, then on to the reception with James was extremely comfortable! Was practically a leather sofa on wheels lol.

I knew absolutely nothing about the piper we had (one of James' pupils from Arran :) ), and although I knew there was a car coming for me, I had no idea what it was. I also didn't know for certain what the first dance song was going to be...

The evening wasn't the traditional set up. We didn't have a table plan, we didn't have a 4 course dinner, we had about 130 dinner guests and they all heard the speeches and ate from a buffet of haggis, neeps and tatties or jambalaya (actually in most cases they had both). The speeches were absolutely fantastic, kept above the belt apart from 1 joke by the best man which had everyone in knots.

After that we cut the cake then had our first dance to John Martyn - Couldn't Love You More (utterly beautiful) which was performed by our friends Ciaran and Ian. The band (The Tatties) did an amazing job! I'm sure they enjoyed themselves too, and 2 members are our very good friends so that made it much more personal. They didn't play any Queen on James' request lol, but more soul and motown than they normally would. We also had another friend DJ for us, as we thought he did an amazing job at our engagement party.

It's been so nice to be able to pull friends in for jobs here and there, and I really don't think we could have done it without their generosity. My Aunt Rosemary made our cake as our wedding gift as well so that was excellent and looked great!

As I say, I'll post pictures another day, but I wanted to write something just now while it's more fresh. Our friend Sharon videoed the whole ceremony (which lasted 13 minutes btw!) and the speeches, as well as other parts of the day. She also drove James and her partner/best man to the ceremony lol.

I couldn't have asked for a better day. I danced my ass off, feeling like I might die off a few times in the process, and drank too much white wine. I was hungover yesterday and only started feeling better after a roll and sausage followed by a chinese, oh, and a sleep.

I'll report back after the honeymoon. We're off tomorrow night to stay at James' Nana and Papa's house as it's close to the airport, then Tuesday morning at 8.30 we fly to Tenerife South, before hopping on a ferry to La Gomera for 2 weeks! Woop!

PS not as quick a post as I thought, but not exactly an essay either! lol

Wednesday, 11 July 2012

Almost Mrs McEnaney

Tomorrow is my last day as Miss Ruth McDougall. By 3pm on Friday, I'll be known is Mrs Ruth Jay McEnaney. Weird!!!

Everything is all set. I have my beautiful dress, my bridesmaids are stunning as ever, and we're all beautified and ready to go. As is my mum, who is new to the world of spray tanning and visiting a salon in general lol. I think she's been enjoying being pampered though :) James' kilt is ready, as are the other guys' and I think they're all feeling ready now too. Although since yesterday, James has become quiet and is adament he isn't nervous...I think otherwise!

My hen weekend was great! We went to the Stirling Highland Hotel for a spa day, had a 3 course meal in the restaurant then out for cocktails in Stirling. We stayed over in the hotel and spent Sunday outside the castle then in a bar watching the tennis with more cocktails! I had a back massage and a manicure and felt very relaxed after about 3 hours in the spa pool. It was far too hot and made me struggle to breathe at times, but it was worth it lol. We were lucky to get there though, after my friend's brother managed to beach his car in my garden! Hard to explain, but he had completely blocked the driveway and couldn't move forward or backward. That was pretty stressful, but thankfully my neighbours were having work done and the guys came and jacked the car up about 5 times onto a pile of breeze-blocks so he could get out.

James and a couple of his friends went camping to Tighnabruich and had a great time! Came home stinking and knackered, as you would expect. He's having a BBQ tomorrow with all the guys, provided the rain stays away long enough. 

Speaking of rain, the forecast isn't great for Friday. Who'd have thought you'd have a washed out wedding in July....*ha*, but hopefully we'll get a window of dry to take some photos outside then we can get on with the party! Woo!

So, seen as it's my last time, I'm gonna sign out properly

Miss Ruth Jay McDougall  

Thursday, 14 June 2012

Busy busy

I've been off my 3 months of orals now for about 3 weeks and have felt pretty crap since about 3 days of being off them. Lungs are not cooperating how I want them to and I've been tired to the point I've been bursting into tears over nothing and just generally being a bitch to be around. This hasn't been helped by the addition of crazy hormones, and it would appear I'm sliding over into "hormones make me feel soooooooooo much worse than normal" territory which I've managed to avoid in my chest so far. I'm used to it now with my tummy, but if I could've got away with sleeping constantly for 3 weeks there I would have.

However, I have so much to do that I'm just having to get on with it! Next week I have 3 ABRSM exams to accompany then the Arran high school show to do for 4 days, then back on the earliest ferry and straight into  teaching last lessons before my own pupils exams and then accompanying another 2 exams the next week. All that, and then the next week is hen do, and the following week is wedding bells!

I'm excited now. Yesterday, mum and I confirmed the hair appointments and all the stuff at the salon, like waxing, nails, possible tan, make up...the list goes on, but I STILL don't have my dress. Phoned the shop yesterday and they basically fobbed me off and told me they'll contact me when it's in. My personality doesn't do well with this, I want it to be in now and that's it. But mainly because I know I'm not here next week so that only gives me 3 weeks to do 3 fittings.

Anyway, what else is happening? Oh, we managed to organise a house on Arran, yay! We get back from our honeymoon on Tues 31st July, then move over there on Mon 6th August. I'm gonna need another holiday after it. That gives us about 1.5 weeks to try and get semi organised before James goes back to work. Role on October holidays.

I would imagine I won't be posting on here much in the next couple of months, but I'll try and update when I can, and when I can think of something to say. Hope everyone is doing well

Monday, 14 May 2012

All change!

I'll start with the biggest news, and most of you have already heard, but James got a permanent teaching position on Arran, so we are moving! AGAIN. How many times can 2 people move house, seriously, it's ridiculous. This will be the 4th move in 3 years. Nightmare, but hopefully we will be able to settle when we get there. A bit of concern over where we're going to live, and whether we will need to rent at first rather than go straight for a mortgage, and property on Arran is super expensive. A 2 bedroom ex council house would be under £100,000 anywhere else in Ayrshire, but on Arran you're talking £150,000.

Only 8.5 weeks til our wedding! Exciting.

Today I had another appointment with psychology. It was good, we always laugh our way through it, but really that's more me laughing out of nerves, but it's actually nowhere near as bad as I thought it would be. Today she actually put a name to what's going on - Generalised Anxiety (with obsessive-compulsive tendencies). Fun. Basically when my levels of anxiety are higher, my obsessive behaviours get worse, but they don't take over enough for it to be classed as obsessive compulsive disorder, and they don't necessarily happen every day. Next session will be interesting because she's going to talk me through mind games and techniques to help me cope when I can't get to my piano (as any time I feel myself starting to stress I go straight to the piano as a distraction).

Don't think I've got a whole lot more to talk about, so I'm off!

Monday, 16 April 2012

life in general

This is coming a little sooner than planned, but I've only slept about half an hour so far tonight (it's 3.45am) and can't see me getting back down any time soon.

So, James was home for 2 weeks over Easter break, which was great, we were really busy catching up with friends, organising wedding related stuff and trying to enjoy our time together. We went out for dinner to Ichiban and ate sushi etc which was lovely :) We ate takeaway a couple of times and just chilled out. House is  a complete disaster zone as a result but hey, who cares. On Tuesday we ended up getting through 2 bottles of wine by accident and I ended up crying for ages after trying to keep the emotions of the week under control.

I had my first appointment with clinical psychology last week. It went quite well I think, but I'm told I have a significant amount of stress in my life and I worry about so much at once, so I'm going back next week to chat about coping mechanisms. She thought I might only want to see her a couple of times, but you just never know what could come up, so I'm just taking it as it comes.

I gave in on Thursday and phoned CF team to be seen on Friday as I was knackered, in a bit of pain and just generally feeling pants. Lung function was down a fair bit, crackles, blah blah, you know the deal, so was sent to xray which was MOBBED and completely insane. There were people in gowns all over the place lol. Anyway, Dr said xray was much better than Feb, that the antibiotics for the pneumonia are obviously working. The inflammation has reduced but a whole bunch of "fluid" has taken it's place. My chest hurts a lot when I cough and keeps getting really tight and wheezy so I can't get the stuff out, so after a chat with physio we came up with a new routine and I might go and see them again this week. How I'm fitting this routine in twice a day (or lets face it, once and then a shorter session later on) I don't know!

So I need to work hard this week if I want to stay off IVs.

I feel this could start getting boring and my brain is switching off. I'm off to doss infront of Big Bang Theory again seen as my tummy won't let me sleep.

Hope everyone is keeping well x


After the loss of another friend this week, it's feeling a little more difficult than normal to stay positive. CF can really be a nasty piece of work at times. The feelings I wrote about in a previous post just come flooding back when the life of a friend ends. I suppose it's only human nature to want to suffer for your friends and family instead of watching them fight for their lives.

Alan Crowther, you will be sorely missed by so many. You have made such a big impact on peoples lives and we all feel proud to have known you. Breathe easy xxx

I'll post an update about me and life in general another day.

Tuesday, 10 April 2012

gone but not forgotten

This morning I attended the funeral of my good friend. After spending 4 months in hospital it all became too much for him, and after fighting so hard he passed away on the 31st March. It still feels somewhat surreal to me, even though I was there this morning and saw his body being put into the just feels like it's all happened far too quickly.

If anyone reads this, please do not say anything publicly on facebook about his death as that is not what he wanted. 

James Hunstone, 17th April 1979 - 31st March 2012. Breathe easy now xxx

Thursday, 29 March 2012


This has kinda been sparked by a topic on the Trust forum, but it's also something that's been on my mind more and more as I get to know more people with CF.

I have always felt guilty for managing to stay "well". Always. It's not something that has just come all of a sudden. Ever since my first friend at paediatrics died from CF I have felt that guilt and it's still going strong.

I feel guilty for the people I know who are waiting for transplants, or who can't have a transplant and are waiting for the inevitable. It makes me extremely sad to see 1 of my good friends so poorly that he has been in hospital since beginning of December and doesn't have a clue when, or if, he'll get home.

I feel guilty for being "well". Something has got to be wrong with that, surely? Someone said to me in the past that I don't appreciate what health I have. I do appreciate that I am well, when compared to a lot of people, but I am more than aware there are people more well than me. I absolutely do appreciate where I am with my health and in my life, I don't want to feel myself decline any more than anybody else, but the guilt of being where I am is very real and I often wish I could take the place of people who aren't as fortunate as me.

There's no doubt in my mind that if I hadn't done all the things I did in life to keep my lungs healthy that I wouldn't be in the position I am now. My lungs are diseased, they are damaged, I've seen the scans and heard the surprise in my Drs voice when he realised that they aren't as good as my numbers would like to suggest. My lungs are trained, very well, in how to get the most from them. Vocal training, trumpet lessons, all these things have strengthened the healthy tissue and no matter what state I'm in I can get good blows. My LF didn't even drop when I had pneumonia, but it was clearly there and I felt bloody awful for it. I have more problems with other CF complications than my lungs and for that I am glad, but I have the potential, just like anyone else, to decline rapidly if my circumstances change.

I don't like to feel judged by people who don't know me. I'm a harsh enough judge myself, I don't need other people jumping on top.

Anyway, this post is a wee bit too serious for my liking.

Tuesday, 27 March 2012

Just had to post this cause I thought it was amusing. I did a blow on the piko6 I was given as part of the run in study (gene therapy) in Edinburgh (which I was allowed to keep as not going on to drug trial), and it said I blew an fev1 of 4.71 litres and an fev6 of 9.36 litres! LMAO. Nice try, piko, but you're a complete liar. Even if my lungs were perfect the predicted fvc is only about 3.1 litres lol.

Anyway, as for me, I'm LOVING the weather and dreading the weekend cause it looks like it's to go back to "average" temperatures for March. Boo. So yes, dug out a maxi dress yesterday and a wee playsuit today. Why not make the most of probably the only decent weather Scotland will see this year.

Health wise I'm alright I think. Been battling 4 weeks of oral thrush which seems to finally be calming down. Don't think I could handle many more weeks of antifungals but needs must. My chest is a lot more productive than my normal but it's mostly white/yellow apart from the odd plug. Although, having said that, I still think of my normal as not productive because I was clear for so many years with all the exercise and singing/trumpet I did. I've been productive most days for about 2 years now but not really to this extent. Cough is sounding gross.

Kinda takes away from feeling sexy when you end up bent double trying not to puke lol.

Anyway, bitch moan, can't be bothered typing any more, going out for some sun!


Wednesday, 21 March 2012

the heart wants what the heart wants

and mine wants to rewind to this morning when I was feeling pretty good, everyone was cheery and well and all I had to think about was how I was gonna cash the money the jobcentre sent me as a cheque instead of paying into my account like they have done since November.

My little bundle of fluff, Coco the rabbit, is no longer with us. I'm absolutely devastated. She was bright as a button this morning, ate all her food, jumped up as usual for a rub when I went in with her morning bowl. I came home tonight, after being out shopping all day with mum, and she was barely clinging on to life :( I just knew that she was dying and unfortunately when I got to the out of hours vet, she agreed with me and we decided it was best to put her to sleep. She wasn't going to live til the morning, her breathing was poor and she could barely move. Normally, she would've kicked up a fuss about me picking her up, but I picked her up, wrapped her in a blanket and lay her on the passenger seat of the car and she didn't move :(

She was 6 years old and just the most happy, cute little drama queen. I'm so gonna miss her grunting from behind the couch.

Love you wee darling xx

Tuesday, 13 March 2012

first private blog...

I was hoping that I could choose individual posts to make private but can't seem to find an option that does it so I guess it's all private now! Hopefully you'll all remember my blog is here seen as it won't show in your feed and I probably won't be posting on facebook.

Nothing really to say today. I heard someone talking in clinic today who I have recently parted ways with thanks to my own stupidity and since then I've felt really crap. Hate it when you do things you regret and there's nothing you can do to make it right. Idiot.

Hope you're all good x

Wednesday, 7 March 2012


I'm getting so excited now!

Honeymoon is booked, I've nearly finished making the invitations, the application for temporary approval of our venue is almost complete and sent off (not that that means it'll be approved...but it better be!) and I spent this morning looking at shoes for the bridesmaids, jewellery for me and organising who needs hair appointments and the list for hen do (whatever we're doing, apparently I'm not allowed to know! nightmare).

I've basically just spent the last week or so completely throwing myself into planning, and my Mum and I are taking part of each Wednesday to organise things because we are both off work.

Everything else is just kinda as it was, nothing much to report to be honest.

The only thing I will say is that Booiaka is much more demanding on the lungs than Zumba...either that I am just a lot more used to Zumba. I went to a brand new Booiaka class, which is run by my Zumba instructor, and it really was great fun, but very long, not technically difficult for me because of my dance background, but boy did I find it a struggle. It frustrates me because I used to dance 5 or 6 days a week and found it easy. Obviously I was breathless but that's normal during exercise. It's fairly obvious that I'm a heck of a lot more breathless than everybody else but thankfully I can still recover fairly quickly. I think though that it's probably a combination of things, like having crappier lungs, pushing myself to my limit and beyond (cause I'm stubborn like that) and the hot sticky air in the room.

But, I would highly recommend it. It is nothing like Zumba really, but is similar in the sense that you get out of it what you put in. Both could be a walk in the park to somebody who is fit, but if you really give 100%+ then you will feel the benefit and hopefully find it really fun. I have pain in muscles I barely knew existed, or that I thought only existed to aid my coughing lol.

So...I haven't got round to making this private yet, I have the list of email addresses I just can't be bothered getting it from the living room, so next couple of days I'll get it done. If you want to stay and haven't already done so just send me your email address.


Wednesday, 29 February 2012

time to be honest

The last time I felt as down as I have recently I got into a pattern of behaviours that felt like I was on self destruct mode. I pushed away the people closest to me, almost losing the most significant relationship of my life, and I actually hated myself for the things I was doing. In order to make myself feel better, I would do something stupid, which I would then feel bad about and ended up hating myself even more. It was the only time I've actually felt relief at going to work because things at home were so tense. There are few times in my life that I regret more than making James' life hell for the months that I was unreachable (not physically, but mentally).

The last couple of months haven't been good for me. My head has been a mess of loneliness, low self esteem (almost so low that I'd go as far as to say I really didn't like myself), frustration, and various other feelings, as well as feeling ill which was just a massive cherry on top. I broke my heart every day in hospital, and was utterly inconsolable on my discharge day at the thought of coming home to an empty house. I hated that, I don't cry in front of people, and ended up with a nurse, physio, cleaner, bloody everybody seeing me upset. Not cool.

James living away is really taking its toll on me. I spend at least a few hours at my mum and dads every couple of days, which takes the edge off, but it really is very lonely at night, and living in the middle of nowhere just emphasises that fact. If you don't have a car, and can't walk the mile and a half along a busy road (with no pavement) from the train station, then you can't get to my house. The only people who ever come here are my mum and dad, and even that doesn't happen often. Occasionally my 2 best friends come over, but 1 is living in Holland now and the other has a very busy life and lives in Glasgow.

What I'm trying to get at, is that I can see certain patterns of thought and behaviour returning. I have lost people I was fairly close with in the last couple of days, and it's all down to feeling like everyone hated me anyway, so what did it matter what I said? Yet another thing to add to my list of regrets. What an idiot.

A few things have been said to me in my life, that hopefully weren't meant, but have stuck with me, including "well, I never even liked you anyway" when I was being ditched by my best friend for absolutely no reason. We didn't have a fight, argument, anything, she just found somebody better. I think this may have contributed to my difficulty believing that people actually like me, and that it's possible some could even really like or love me.

I have a lot of self loathing at times, and I know we all do, but I find myself stuck there for such a long time that I wonder if I'll ever come back up for air again. This time round I haven't abandoned treatments or medication though, which is good, but it's bloody tempting at times. I guess that's just a less obvious form of self harm, which is something I choose not to engage in anymore.

I think that's as honest as I feel like being just now.

Tuesday, 28 February 2012


I am making this blog private in a few days, so if you wanna stick around can you send your email address please.

I will delete any addresses that are left in comments once I have approved you.

I have been considering this for a while and feel I will be able to be more open if it's private, and that it could help me more to deal with things that are happening in and around my life.


Thursday, 23 February 2012

wedding and work

James and I received some disappointing news about the wedding today. His sister won't be able to be a bridesmaid anymore as she just got word of an amazing job offer. She lives in London, works in theatre and has been offered the lead role in Saturday Night Fever, leaving for Florida in April, onto cruise ship in June and not home til December. She can't get leave for our wedding because she's on the ship :( Don't get me wrong, we are very proud of her, and think she is absolutely doing the right thing by taking the job, who knows where that could lead her, but we are gutted she won't be there.

Aside from that, it's only 20 weeks!! OMG!! so much to do.

Work was interesting today. I managed to get 2 new pupils, and both are going to be a challenge. The first is a boy, age 12, who learned to play piano in a music school in Romania. From what I can tell his English isn't great, and he is around grade 6 standard, but his teacher in the UK has taken him back to grade 4....which makes me wonder why? I guess I'll find out next week. Kinda nervous lol, especially seen as Diane (the shop owner) was biggin me up, giving promises I'm not sure I can deliver.

The other is a girl, age 5, who has Dorsal Stream Dysfunction. This is a visual impairment caused by damage in the brain. She sees people in profile, has very poor peripheral vision, can't see anything if she looks down, and has difficulty with coordination. But she has a great love for music. She learned to speak through music. Her mum told me that she conveys how she feels about the world through her eating and sleeping - if she is upset, she won't eat or sleep, and sometimes won't speak.

I love working with young people who have additional support needs, but this is the first time I am going to be attempting structured piano lessons with someone with such complex needs. I have taken lessons with a girl who has epilepsy, but I had lots of training in epilepsy while working as a support worker so I knew the signs and was able to work around it (she had absence seizures, as opposed to other types which involve convulsions etc). This will be very different, and I hope she takes to me OK and we can build a good relationship.

I'm also still working with a young girl who has Autistic Spectrum Disorder, and we are going to attempt to learn to read music in the next few weeks. I introduced her to the book on Tuesday and we listened to the recordings of the songs, but she is very keen on doing her own thing at the keyboard so I'm not sure if we will be able to translate it into playing, but it's worth a go! We have been working together for a about 8/9 months now and have built a good relationship. Her sessions really seem to calm her down when she is anxious/hyper.  

Doing work like this makes me wonder whether I will ever go back to uni to do MSc Music's something I've thought a lot about over the years but it's expensive, ridiculously time consuming, and the only course in Scotland is in Edinburgh (and takes on about 12 people a year). I do think, however, that it would be an extremely rewarding job and I'm sure I would love it.

Anyway, I think I've rambled enough. Hope everyone is doing well x

Tuesday, 21 February 2012

let's all laugh at...

you guessed it. Me!

So I mentioned in my last post that I hadn't been sleeping too great, and this has resulted in me doing some stupid things which have been amusing to everyone around me, but most embarrassing for me.

I'll start with Sunday. My car was making the most awful noise and after taking a few speed bumps, a heat cover from my exhaust fell off. I was pretty raging about this and asked Dad to look at trying to fix it. When he asked me to "give it some revs", I did and nothing happened...and again...and again. Nothing. By this point James and Dad were exasperated, my car was running, how could I not rev. Bit hard to rev when you're pressing the break pedal. Nice one Ruth...they laughed a lot and I felt embarrassed.

Today, I put about 25 quid of shopping through self serve only to discover I had no purse. The lady was kind enough to suspend the transaction so I could drive home, get my purse and go back and pay. What an idiot.

I actually tried to drive away without starting my car the other day. I put the key in, car in gear, took the handbreak off and sat wondering what on earth was wrong.

To say it's not been my cleverest few weeks is an understatement, and with only 3.5 hours sleep last night, today was a bit miserable, so I felt extra specially embarrassed having to admit to no purse in front of a queue of shoppers.

Anyway, just thought I'd post something a bit stupid, cause last few have been awfully health focused.

Here's to a better sleep tonight *fingers crossed*

Friday, 17 February 2012

we have a plan

Bit of a ridiculous time of day to be posting a blog, but I've not been sleeping too well and have been up since 5.30am...

I went up to clinic yesterday (and yes, that means I've been there every week for the last few...boring!) to get my treatment plan for this steno that's decided to make my lungs it's home. They told me they don't really know what affect it has on CF lungs and that they don't always treat it, but considering I'd had marginal improvement on IVs but still looked (and felt) a bit like the walking dead, they decided to treat.

That means 3 months of doxycycline and septrin, as well as being put back on colomycin nebs. Fortunately I've had colomycin before so didn't need to get a test dose...although after my first dose I was so tight and wheezy that I thought that might've been a huge mistake, but the 2nd dose wasn't too bad.

Surprise surprise, my weight was down again. Thank god my BMI is still within range at a pretty decent 21.5 or they'd be going mental. I suppose that's the only advantage I can think of to having been a bit overweight 2 years ago.

I've decided to speak to liason psychiatry, not for a diagnosis (as they were keen to point out yesterday) but for coping mechanisms. This is not all related to CF, there are some other issues I think it would be good for me to get off my chest, but I don't like to be a burden and hate talking about things that will have me and/or other people upset. I spoke with a few people about it before making the decision, which helped put my mind at ease about asking, and actually it wasn't as bad as I had imagined it would be.

Which brings me on to facebook. I said goodbye to it again last week, after only starting it up again 2 weeks before. I feel better being rid of it...something about it when I'm not feeling good, and it's just easier to delete it and get back on it when I feel better.

I hope everyone is feeling well x

Wednesday, 8 February 2012

the culprit!

I went up to Gartnavel today for a repeat chest x-ray and to get my line out.

I was moaned at for losing half a kilo. My lung function was fine and chest sounded OK. Apparently the x-ray wasn't exactly perfect, but showed a small improvement. Seen as I started feeling a fair bit better over the last couple of days we decided just to stop IVs and see me back up in 4 weeks. If I need to be seen before then I'll be less than happy.

I saw my microbiology report from my samples when I was in. They grew aspergillus as expected, but also a new 1 for me - stenotrophomonas maltophilia.

Bit of a mouthful! Glad to finally know what was going on though.

I think I must've grown everything in my time apart from B. cepacia!

Anyway, bugger off steno, I would like to avoid a repeat performance.

Friday, 3 February 2012

how quickly things change

Well, I'm home! Got home on Tuesday after being admitted to Gartnavel on Wednesday.

I had been in a lot of pain since the Wednesday before, and had made an appointment with my GP for the Tuesday (as I was working on the Friday at the only time they could offer) to check it wasn't an injury as I didn't fancy trailing my butt up to Glasgow if it wasn't CF related. Anyway, GP said I had pleurisy but that he wasn't giving me anything because the pain wasn't as intense. A sign, he thought, that I was getting better. I think deep down I knew I'd have to go to CF clinic because I was spending all day in bed, apart from getting up to teach, then coming home and going back to bed. I had just hoped to avoid seeing them for a bit longer.

Anyway, this didn't sit very well with me so I went up to clinic that afternoon and was x-rayed straight away and told I had a chest infection (which I later found out was a pneumonia) and sent home with 3 oral antibiotics and strict instructions to phone them if I wasn't getting better.

Next day the pain started to migrate so I phoned and they took me in. Boo. I've been on IVs just over a week now, due to finish on Wednesday, so I'm going back up for another X-ray to make sure chest is clearer.

Since getting home on Tuesday I've been using enshakes so that I don't have to force feed myself, as IVs make me feel sicky and very tired so I don't eat as much. However, they sent my blood sugars sky rocketing so I was told to go to clinic yesterday for an OGTT. It was fine, thankfully just my usual, so it must just be the drinks.

I had a bit of an uncomfortable conversation with 1 of the consultants about how I felt I wasn't being fully informed about what's going on with me. I got the impression he felt I was questioning their work practice, which I wasn't, I just wanted to know more but kept forgetting what I needed to ask, as they came into my room mid nebs etc so I wasn't fully concentrating, and they didn't say much other than "how are you feeling now?". Anyway, he explained that I'm on all the treatments I need to be on, that I'm not allergic to the aspergillus but that there had been a change in my blood work that showed I'm fighting it harder. Apparently it shows in my sputum more than they'd like but since I'm not allergic they are happy to leave it. I don't have any allergies at all so that doesn't surprise me, but I wanted to let them know that my chest has definitely changed symptom wise since this appeared. I have made this clear in the past but depending on which consultant I see, I'm not convinced it always goes in.

I also have managed to clear the pseudomonas. This, however, left me wondering what on earth infection I actually have. He didn't have any answers to that, just that my most recent sample was negative for pseudomonas, but said that seen as I had pneumonia they felt they had no choice but to have me on IVs and extra physio.

I saw a CT scan of my chest that was taken in August at the run in study in Edinburgh, which showed bronchiectasis and some scarring, and he said that my weakest area is the bottom left, where this damn pneumonia is.

The long and short of it is that my CF is kicking my butt a bit more than it used to. So I need to keep working at kicking its butt.

I know I'm still very well in CF terms, but a lot of things have changed in the last couple years and it does take a lot more effort to stay well, and I've lost the feeling that I may actually be invincible. Not literally, but I always felt that I was gonna be fine forever. Maybe I will be, maybe I won't, but Dr reckons that I should be fine provided I keep the pseudo away. Fingers crossed.

My boring life aside, I found out yesterday that a very close CF friend has been assessed for transplant and can't be listed due to the amount of scarring in his right lung. Freeman think he will die from blood loss during the operation. To say I was devastated doesn't even cover it, I was shaking all over when he told me over the phone and cried for ages. I'm close with his fiancee too and am really hating the feeling that there's nothing I can do. I hope he gets home to her soon, as he is going back onto the ward today when he gets back. He is very poorly now and we all hoped that transplant would be an option and he would have something to look forward to.

Hope you are all well x

Monday, 9 January 2012


I'm late, again! Happy new year everyone, I hope the first 9 days of January have been good to you so far.

I've not really got much to report tbh. Christmas was good  :) We visited my family in the early afternoon to exchange gifts before heading up to James' Dads house to do the same. After that it was off to his mums house for our dinner. We nearly always have dinner there as his brother gets home for Christmas eve night and Christmas day. He has severe Autistic Spectrum Disorder and is a resident at the National Autistic Society residential centre I worked at for 4 years (Daldorch). He was on great form and we had a really nice relaxing time. Only problem with the day was that I was driving everywhere so was ready for my bed by about 8pm.

Boxing day everybody came to us for a buffet. It was really great and I ended up feeling a little drunk by the end of the night (clearly I as compensating for having driven everywhere the day before).

Um....New year's eve was basically the same as always. I got stupidly drunk and don't remember the bells (my memory comes back at about 1.30am), then was put in a taxi shouting about how I didn't want to go home get the picture. It gave James' mum and his sister a good laugh when we got back to their house though. New year day dinner was with my family. I had offered to make the soup, but was so tired and coughing all over the place from the drink the night before that it felt like a much bigger task than it actually was lol.

James was home for a full 2 weeks, which was great, but I felt really low when he went back over the Arran last night...euch.

Yesterday, the oldest of my 2 younger brothers crashed his car. He skidded and hit a verge then rolled a few times, smashing nearly every window. The CD player dislodged and flew about inside the car, also hitting him on the head. He was 1 very lucky guy being able to walk out of it, as it landed right side up. Anyway, we reckon the car's a write off cause it isn't worth an awful lot, and had obviously spent some time on it's roof! Scary times.

Not a lot to report health wise. My tummy is still being seriously rubbish. I had more kleanprep on the ward on the 23rd Dec, and am heading that way again! It's infuriating. I did, however, blow my best lung function in a good while that day so can't really complain chest wise.

I hope you all had a wonderful Christmas with the people you love :)

PS It turns out that the Liszt Etudes are REALLY hard...not so much the originals but the Grande and idea why I asked for the scores for my Christmas lol...