I'm loathed to write this blog as it knocks my last one off top spot, and lets face it my last post was simply the best! But life goes on and i do enjoy writing so here I am.
I've been kept very busy with my OU work as both courses are now up and running. The new one is quite hard to get to grips with but hopefully thats just teething problems and will sort themselves out.
I had a lovely day, it was my best friends day off today so she took me out to lunch in a quiet little pub. We had a yummy lunch(quite alot of lunch if im honest,4 plates between 2 people!) and a long gossip which was great. I have just had a long hot bath and am snuggling down to watch the telly.I find the simple things are always the best.
I feel like I had something else to blog but can't remember now! Hope you're all keeping well and keeping smiley!
XXXXX
PS. As requested photos of me and Ramin coming soon.....if i can work out how to do it!

Wow!
Yesterday was a very special day for me as I had a very special visitor. Thanks to some wonderfully lovely individuals who know how much I love Phantom and a happy set of conicidences, I spent the afternoon sitting on my sofa talking to THE phantom of the opera. It is not even worth me trying to describe how much this meant to me and how happy it made me because I could never do it justice, but suffice to say if i could have my pick of anyone in the world he would be top of my list.
The Phantoms name is Ramin, and he is my favourite actor in the role. He is particularly special as his childhood dream was to be the Phantom and now he has achieved this. I have spoken to him via email before and when my friend approached him he offered to come and visit me. It seemed unreal when he walked through the door, and gave me a big hug and a kiss.
I sat very quietly, (it has to be said like a bit of a moron actually), while Ramin told me everything about being the Phantom and how he got there. He was the most charming, kind, friendly and interesting man (not too mention handsome) who had taken time out of his very busy schedule to pay me a visit. I can't begin to say how much that means but it was a treat I could never have imagined and completely made my year!
He left about 2 hours later, leaving me with some Phantom memorabilia and posing for some photos (sitting next to a grinning idiot!) and promising to stay in touch.
If you're reading this Ramin, thank you for an absolutely perfect day, it meant the whole world to me and words can't describe that. Even now I can't stop smiling.
I think another visit to her majesty's will be on the cards soon....
xxxxxxxx

Well, I'm feeling abit calmer now. After my blog I got in touch with the tutor for my current course telling her exactly how I felt and admitting that i couldn't cope. This is quite a big thing for me as i find it very hard to ask for help. I dont like to be treated any differently,unfortunately with the situation i'm in now i find myself having to ask for help more often, which if i look on the positive side is a good thing, there is no shame in it.
Anyway back to the story, i went to sleep feeling worried and disheartened. When I came online next day my tutor had got back to me. She was so supportive, i immediately felt better. She has told me that she will help wherever possible and we discussed how best she could help me.
As i did well with my current essays, i can afford to miss one out which should give me the time i need. This way even in a worst case scenario i should pass my course.
Even though it will still be rough, hopefully it won't be impossible now! Feeling much better about the whole thing and am trying to get as much done before the course officially starts on friday.
Thanks for all the messages of support i recieved hope your all well and ill post again soon,xxxx

Yesterday I went back to the primary school I used to work in. I've avoided this like the plague for months as i've been so worried about catching a virus or cold etc. I needed to do an activity in order to write my current essay so carefully picked my time to go. It was great seeing everyone and seeing the building developments that have happened since I was there last.
I really enjoy my OU work, its so satisfying to know i'm doing something worthwhile and although I can't do much physically at the moment, and alot of avenues are closed off to me this is something I CAN do.
You may remember in a previous post I explained that the next course I need to do has an overlap with my current one. It was a choice between an overlap or waiting 9 months without any course till the next start date. I decided to go with the overlap, it would be tricky but how hard could it be? the answer is VERY!
The new course materials were sent to me today and, in short I dont think I can do it. It is such a massive workload to run both together, even for a few months. At the moment I honestly think I'm going to have to quit the new course before its even begun. People who know me have heard me panic before and then after I've calmed down, managed to work things out but in this case I really can't see that happening.
The amount of work is just unfathomable, I cant make any sense of it. Despite this, I'm loathed to give up. I feel that my life is already full of so many compromises that why should I be prevented from doing yet another thing?
On the other hand, I want to have time to go out once a week to do something, and I dont want to make myself ill from taking on to much. Its a difficult one.
I'm looking into possible ways forward and will let you know what happens. Watch this space.
xxx

I've had a fairly uneventful few days since my last post. Yesterday was a bit of a scare. Ive been keeping well chest wise and everyday like this is a huge blessing, my breathing doesn't improve, but while it can remain stable I am more than happy. Anyway, I had been feeling a bit odd chestwise the last few days but not ill or showing any signs of infection so I wasn't overly worried. On saturday morning though, I felt very dry inside and couldnt put my foot on how to describe how I felt. I was struggling to get my breath and the feeling of dryness was getting worse plus my muscles were getting sore from the effort. I was getting increasingly worried by now which wasnt helping, and becoming frustrated as I couldn't describe what was wrong. Infection and the odd days when I feel funny are commonplace, I know how to deal with them and what to expect but when my lungs pull something unexpected out of the bag its disconcerting and scarey.

I had a nebuliser using my old system so I could sit and breathe it slowly and decided (more persuaded) to go out for a stroll. I was dubious about this as I get a bit panicy after my collapsing incident but thought it might help and I would be in my wheelchair so no worse of to sitting indoors. Thankfully this seemed to make all the difference. The only explanation I can deduce is that I hadnt been out for a while and maybe my lungs were a bit stuffy and stagnant. The fresh air definately helped and I feel much better today. Fingers crossed and touching wood etc it was just a blip and maybe a request by lungs to go out a bit more?

I've also had quite a few headaches this week making me a bit annoyed so when I speak to my team I'll mention it.

I cant complain though, had a nice day looking round the shops and saw my two adorable nephews.

Hope everyone is keeping well xxxx

Hi everyone, I hope your enjoying 2008 so far.
I haven't really had much to update with lately but my friend facebooked me yesterday asking if i was ok as i hadnt written a blog for a while and I'd scared her a bit! So just letting you know not to panic!
I have to admit that I found Christmas and New year hard. I hadn't expected it to be difficult but in hindsight i probably should have. Its my first year on the list and while feeling liberated that things could be so much better next Christmas, there are also feelings of sadness that I've got to this stage of decline, and fear for what could be in store this year, what will happen if I get my transplant and how I will feel if, in 12 months time I am still waiting.
Thats not saying that I didnt enjoy the festive season because I definately did, but those thougts were lurking about too.

I'm now back into writing essays for my course and trying to get ahead for when I start my second one at the end of Jan. Keeping up with 2 will definately be tricky but I'm much worse without anything to do. Having something to occupy my mind is very important for my wellbeing.

Anyway just wanted to check in
Tor x