28.11.12

On the up

Heya Blogland,

26-11-2012

Well Great news on all fronts.

I woke up at 4am, not ideal, but I feel SO much better I woke up feeling just a lot better my chest isn’t hurting anymore which is awesome, I’ve still got a constant headache but that can be dealt with easily with just a bit of Calpol. I’m going to start to wean myself off of the oxygen but if I do start to feel worse for doing so I will go straight back on it. I’ll still be using it at night because that does seem to be making a difference but just so pleased to be feeling semi-normal again so woop.

I will still call Hammersmith today at some point and see what they have to say but I have a feeling they’ll just tell me to wait till my appointment in January if I’m feeling better unless I get worse dramatically.

But in other news my Cousin had his baby! She was 10 weeks early which was a shock to everyone but she seems to be doing okay, she weighed 3lb 7oz and is still in hospital but I think she’ll be fine. They called her Aurora Lily which is just the loveliest name. My cousin didn’t actually know Aurora was from sleeping beauty but I think it’s just the cutest name, different without being weird, unique and I don’t think she’ll find anyone with the same name when she goes to school. So pleased for him and I can’t wait to meet her :).

Also getting in the Christmas spirit and I bought Michael Bubles’ Christmas album which I will be listening to whilst I am doing my essays. Cannot believe how fast this year has gone I feel like I barely got a chance to appreciate being 21 lol.

COUNTDOWN:-
18 DAYS TILL BIRTHDAY
29 DAYS TILL CHRISTMAS
   
27-11-2012

I think I am officially better, maybe it was just a underlying bug that my body was fighting but wasn’t presenting itself in usual forms Hmmmm… I don’t know but I am just happy whatever it was it’s gone. I did ring up Hammersmith and they told me unless I was feeling horrible still they would just leave it until my appointment in January when I will be having an exercise test, lung function, echo etc. etc. The usual, but if I start to feel awful again that I should ring them immediately.

 I would love to just quickly say a massive HI to all my new followers this week; I never expected to get many followers because it really is just an outlet for me, and also a way to raise awareness for my condition and organ donation. I also have quite a few PH friends who read this and it’s good for people who are newly diagnosed to read to know what they are going through is normal and they aren’t alone. But it’s really lovely to know that I’m reaching people.

I’ve made some enquiries with the organ donation people because I really do want to do some either campaigning or simply getting the word out there, I did some for PH back when I was 16 and that felt so good and maybe I can kill two birds with one stone by raising awareness for PH and organ donation, I don’t think it’s something that will happen before Christmas but something that will probably happen after Christmas but definitely is something I want to do :)

There is likely going to be a massive haul post soon because I kind of went on a make-up binge last night and bought a few MAC bits and a few Benefit bits and tonne of Barry M nail varnishes so look out for that, if I reach a 100 followers I may even do a give away just to thank you guys :-).

COUNT DOWN:-
17 DAYS TILL BIRTHDAY
28 DAYS TILL CHRISTMAS 

28-11-2012
Picture source

Well today has been spent basically me trying to get my politics essay done which can only be described in one word, Boring! That and sleep. I really should try to not do essays on my bed because I sort off start of really well and then I’ll get maybe 30 minutes into it and then my eyes start to shut and then I’m like “Oooo, I’ll just take a 10 minute nap” those ten minutes turns into about 4 hours LOL and then I wake up too groggy to do anything and just can’t be bothered LOL.

 Overall my health seems to be on the up still which I’m more than happy with, still have the headaches but I’m used to them so all I can say is I am thoroughly pleased.

There have been two transplants recently on the Facebook groups I am a part of, which I’m so chuffed to report. One was a little boy who got the heart he has been waiting for and then a lad of similar age to me who got the lungs he had been waiting for. I’m so chuffed to hear of people getting their transplants because before this there was quite a lot of deaths happening within the transplant community because of various different reasons so when I hear people who are actually getting their transplants it gives me hope especially when they have blood group O because those of us with that blood type are in for a LONG wait.

So everything is on the up!

There will definitely be a haul blog soon because my deliveries are starting to arrive I just got my 7 Barry M nail varnishes so woop woop!

COUNT DOWN:-
16 DAYS TILL BIRTHDAY
27 DAYS TILL CHRISTMAS

Thanks for reading and see you again soon blogland

24.11.12

Decisions

Hey Blogland,

Well I thought I had started to get better, and I did, but I went to work today and I had to be off of my oxygen for, I think it ended up being 6 hours, and I literally was in sooo much pain, my breathing is now laboured whether I’m doing nothing or not.

It’s a really unusual feeling for me because I have never felt as awful as I currently do and this is saying a lot. I’m not sure what it is because the cold I have is really minor literally it’s just a little sniffle and I don’t think that, that’s what is causing this. It’s a little worrying because my entire life I have been able to tell what it is that is wrong with me and I know how to deal with it and what to do and this is why I have never had any impromptu emergency A&E visits because usually I know my body and I know why something is happening. But at the moment I have no idea. I’m trying to persevere and hoping that it passes and it’s just a little blip but it’s just a bit disconcerting.

I’ve got a sinking feeling that its got something to do with my pills and medication because when I do my Iiloprost now it hurts my chest and I’m not sure how much longer I can carry on doing that one but I know the only option after it is the Flolan and just cannot bring myself to even contemplate that reality.   

My sleeping pattern is way off, last night I went to bed at 1am and got up at 4am and I’m taking like weirdly long naps in the day and I’m generally exhausted all of the time.

At the moment I’m having to seriously debate whether I can carry on working because today I just was in so much pain I don’t know whether its worth it anymore, it makes me anxious to go to work now knowing how I will feel at the end of it, I think that in itself adds to my chest pains but I do love my job and I’m sort of grasping to that sense of normality, because if I say I work it sort of, in my mind says, I’m okay, I might be waiting for a transplant but I’m still okay and as soon as I make that decision to say no I can’t work anymore its like admitting that I really am that ill that I can’t do it anymore.

A lot of my PH friends have said that it would probably be best to not work because I really do need to focus on staying well and fit enough to get my transplant when it happens but there’s just this small part of me, the childish part, that really desperately wants to be normal like everybody else even if it is for just 3 measly hours a week.

I’m going to ring Papworth, to let them know how I’m feeling on Monday just to let them know I’m not feeling quite right and then ring Hammersmith as well to let them know to. Lets see what they have to say.

I've just had a really good Saturday evening though in amongst all the feeling rubbish lol. I do love a good Saturday evening tv night. I love the lead up to christmas I get to watch, "I'm a celebrity get me ot of here", "The X Factor" all my lovely "crap tv" as my mum calls it :-)

I’ll keep you informed blogland
and have a great weekend    

23.11.12

My week in pictures

Hey Blogland,

I have been feeling pretty awful this week and I didn't really want to do a totally 'woe is me' post so thought I would show you my week in pictures, although not all that exciting, sometimes its nice to see pictures rather than have someone describe the whole thing too you :-)
Monday;- Trip to Lydiard with Mumma, Candice and beautiful nephew
isn't he the cutest little person in the entire world? I think so :-)



Monday;- Trip to Lydiard with Mumma, Candice and beautiful nephew
This is the Poppy display for the rememberance sunday thing they did
This was taken Monday but this was pretty much my entire weekwhen I wasn't sleeping

Tuesday;- got caught in the rain after my monthly blood test, on the oxygen yet again I kind of took a turn for the worse this day and felt completley awful!
Wednesday;- I was apparently a cat bed for all my cats this day LOL, which I don't really mind because I love my babies
Thursday;- the oxygen man came and Gilmore Girls has been my constant companion this week, it's something I can put on and still fall asleep, then wake up and still know whats going on because I have seen it so many times. When your ill you have to time to watch as much tv as you want. This probably explains why my DVD collection is so large LOL. 
This is Kerry



One of Kerry's beautiful bracelets















On Friday I decided to buy one of Kerry's bracelets which are lovely and look very similar to the pandora ones. Kerry has been having a awful time as of late, with pneummonia, the flu, fractured wrist and cracked rib, she's waiting for a double lung transplant and needs it pretty sharpish, but like me she has a common blood group and is in for a long wait. Here's her blog if you want to check it out and here's her facebook group if you wanna check that out. She is such a lovely girl and really deserves the lungs she needs and thats why I think it is sooooo incredibly important for people to sign up to the donor register, people like Kerry deserve to live longer than 21, so please if you aren't signed up yet please do it only takes a few minutes and its not like you need them if your dead.

Ooooo there was a prograamme on, on Thursday and it was called "waiting for a heart" if your interested go and read my friend Kath's blog post on it, I agree on pretty much everything she says about it. After watching it I felt really downhearted about mine and my friends, who are also waiting for heart and lungs, chances of getting them I think I may have to adjust my perspective, it was always a certianty in my mind that I would get them because having a negative attitude just isn't an option for me but apparently I may have to realise that I may not get them although I will always keep my hopes up that it will happen, because I am  still okay my rate of decline isn't really fast so hopefully I'll last long enough even if it is longer than the 18months they said -_-

See you Sunday Blogland

16.11.12

Breaking Dawn Part 2

Heya Blogland 

Well today was Breaking Dawn Part 2 day. I actually cannot believe how amazing a job they did on that movie. I knew it would be pretty good because if they managed to fuck it up even after they spilt the last book into two then they would have been idiots, but No they surpassed themselves, they managed to do make it even better than the book.

Don’t get me wrong the book is amazing but sometimes a movie interpretation can be good but it just doesn’t get you like the book can because how can they possibly fit in as much detail as a book has when they’ve only got 2 – 2.5 hours to fit it in. But OMG the ending of it was so amazing I won’t give it away for people who haven’t seen it yet, but it will shock you, not just because it’s different from the book but because it’s just an amazing scene to watch. Also I actually found  the end of the book to be a bit of a let down because literally nothing happens at the end, there’s basically a staring competition but the movie just made it sooooo much better :-O.

Loling and megan :-)
Waiting for the movie to start
Please excuse how awful I look
I think I may have overdone it a bit today I went to the cinema, and although that doesn’t seem like much for some reason that can make me very tired and then me and Megan and James went to town where I picked up a few bits and bobs, but that little expedition just absolutely knackered me out. I plan on going to work in the morning and then just hitting the oxygen and going to bed all day tomorrow I feel a little drained. Ooooo and for those that are interested I’m going to be doing a little countdown for Christmas and my birthday now lol.

Birthday 27 days
Christmas 38 days

Have a wonderful morning, afternoon and evening wherever you are in you day :-D