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!

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

Loss

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.

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 ground...it 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

thoughts

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.

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!

x

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