Its been a bit of a mad week so far but then that's nothing new in my world. I had a lovely weekend with my girlfriends at Center Parcs. From city living to a woodland haven, we decided to have a relaxed, low activity based time so...
we got pampered...
we ate... and we posed...a lot!
The air was so crisp and fresh that my breathing became so much easier. The girls were very patient with me as ever. Waiting as I stopped and started every few metres. I like to try my best to do things, even if it means a little pain and lots of breathlessness! I did forget to take an oxygen cylinder as a back up (naughty Lu!) but I was ok. There was not as much wildlife as I had hoped. I think most of the rabbits have hibernated now! I'd quite like to join them!!!
The freezing weather change has upset my mood and made me more breathless. I know I can't complain after a glorious long summer but I just want it back. I have mood lights in my bedroom...one is an alarm clock and I'm finding that helps me to settle and keep calm. This is especially true when having an afternoon nap when I sometimes find things to do and fidget!!
Another bodyshop party is being organised for next week so that should be fun! My very dear friend will be the party consultant. I know she will rock! I need to think about nibbles and bits...last time we had loads and loads leftover!
I did receive some sad news yesterday about two friends who passed away. I literally found out about both within a half hour time frame. It was dreadful and I was trying to find a way to make sense of it all. My thoughts are with both their families at this very difficult time. Both friends were under 30. Their lives were cut short because of a lack of organ donors.
I'm exploring different forms of photography at the moment. My mum and I explored some interesting angles and thought a lot about mise-en-scene whilst in Cyprus. I just find that time is consumed with work and organising my life. The services that are in place to support me keep letting me down, which means I spend a lot of time chasing people and appointments. Its very exhausting and daunting. My breathlessness means I have to conscientiously note all my activites and ensure that I reserve energy for important things. This is difficult to do. Sometimes I feel like a monitor as I have to account for my fluid intake, my weight, my temperature and assess my breathing daily. It's ok, and yes, I have got used to it but sometimes its just plain boring! Oh well, its a small price to pay for my life extension. Thats what I always bear in mind!
Wii fit has been an intrinsic part of my daily routine although I am absolutely rubbish at most of the games. One or two I have improved on slightly. I am not looking to diet but would like to shift a couple of pounds so the system is monitoring that for me through goal setting.
I have been receiving the most wonderful messages from those of you that have voted for me as top blogger (see right hand icon at top of page) or click here. It is really nice to read that some of you enjoy reading about my musings and how you perceive me. Big thanks and please pass my link on to your family, friends, colleagues: . It would be nice to be acknowledges but to be honest the messages and support that I know I have had means so much more!
I have cards to make this evening and a tidy up of my room if I can find the energy. Mum will make the bed for me as this is one of several tasks that I simply cannot do. It is just too much exertion and I feel my heart practically wanting to jump out of my chest. It is annoying relying on mum still but its much less heavily than pre-transplant. I always try and participate so that I have some autonomy. For example, I will change the pillow case covers and tuck the little corners of the sheet whilst sitting on the bed. Of course, I get frustrated but I am learning that this is me and the way its going to be so I have to accept that I do need help daily. The handpickers that are placed strategically around my flat have been used more often as I discover that I don't win prizes for over exertion. I just get so dizzy and breathless when I bend down. It can be quite frightening as it can be a while before I feel better.
Luckily there are a number of things I can do independently and so this helps me to balance it out in my mind. The carer situation is soon to be resolved as I will be interviewing candidates next week. I'm hoping I find someone nice, punctual and hardworking. I think I may have my work cut out, though we'll see...
I am looking forward to the weekend as I will be spending time with a great friend whose coming over from Holland! I know we're going to have a great laugh and catch up. I need to check out the weather as we may just chill at mine it its dodgy!
For some reason, the other night, I got really concerned about my tacrolimus levels. I have been told I don't need my blood test as regualrly now which is great in one hand. In another it just makes me anxious that something may have changed and its not being monitored. I think I am just being a bit silly as the docs know what they're doing and I have to put my trust in them.
I am starting to feel very drained and sleepy. I think the hydrotherapy wore me out again. Today we added on exercises too so that was a bit streneous, but in a good way. I've discovered that one of my legs is quite dramatically weaker than the over thus affecting my balance. I need to work on this a lot.
Soon I will be reviewed again at Freeman which will be interesting to see what is happening with my little body. I know that the PTLD is in my liver and lung and I am hoping that the tumours have shrunk more or remained the same. My lung function was 25% last time so I am hoping for an increase. I am not too hopeful though. Not because I'm pessimistic, but because I know that my exercise tolerance and parameters haven't changed much really. I might be surprised though!!
Holly's abseil event for LLTGL took place on Saturday 7th November 2009 and from what I hear, it was a great success. It's not too late to show some love so please head to her justgiving page here and give even £2 that could make a big difference to someone waiting for transplant. For example, part of Robyn's Rainbows aim is to enhance the life quality and experience of pre and post transplant patients. Balloons can be delivered to those having a difficult time in hospital or a hospice from the charity. They have a special way of bringing a smile to your face :-).
Right I will go and sort out some bits for charity shops and eBay.
You can now list items on eBay to raise money for LLTGL (Live Life Then Give Life). It was a bit of a battle with a certain company, but we made it in the end! Woo hoo! Why not clear that junk and unwanted good to make space for your new bits @ Christmas? Just follow this link and get listing!!