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

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

wedding...

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.

xxx

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.

private...

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.

x