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