I have a real bad headache tonight but I am certain about the cause: central heating. It literally zaps any room of oxygen and makes my breathing extremely difficult. Today, I had to give in as the temperature outside was totally freezing cold. I couldn't even type. I think its time for my fans to go back on full blast before I get really fog headed.
Today was also one of those days that I skipped my nap and as usual, this does not bode well. I get really irritable and whingy! My poor mum had that to contend with this afternoon until I eventually crashed on the sofa in the early evening. I'm sure I heard a sigh of relief from my mum as I entered dreamland!!
Mum and I work well together most times which is great as this journey would be far more difficult if not. She is so patient and altruistic.
Last night I was treated to a special evening at the Royal Opera House to see 'The Nutcracker'. It was totally beautiful and mesmerising. When the curtains came up I was on the brink of tears. I think the discipline and sheer precision of every movement just takes my breath away. Being transported back to memories as a child ballerina was fabulous. There was glittering gold stars floating down onto the stage, the sugarplum fairy dance, the snow!! My friend K and I couldn't stop beaming and gushing all the way home! Just before I hit the duvet, I had a sneaky look last night at a pair of pumps and leotard that still remain in my old ballet bag!
It also reminded me whlist watching of a really fab friend I worked with at French Connection who was a male ballerina who studied at the Royal Ballet School. He was the funniest man I've met and although he'd always joke around, he was the most dedicated dancer. I even searched the programme to see if he was in it. I am sure he will be doing fabulous things wherever he ventures. I wish him well!
It does make me a little sad that I am still not and unlikely to be strong enough to persue some of my interests that I had put on my 'post-transplant' list such as ballet and tap dancing. But at least I am priviledged enough to watch world class performances and appreciate the music and synchronisity of the movements. Being a Londoner too makes it so easy to access such beauty and talent. I am a super lucky chick!
This week is gonna be a busy one as I will be out with the girls at, you guessed it...Here Comes The Girls. Chaka Khan, Lulu and Anastascia are amongst the acts at an all girly, all singing, all madness ultimate night out! I cannot wait. I think I have an outfit in mind though it might change...its got a kind of grecian/disco diva thems (odd, I know) but I reckon twill rock once I 'juush-up' with a cute bag and belt! I do love my nights out but it always required diligent planning...time for a good nap before, packing my medication, ensuring I have water, car parking facilities, disabled access inside venue, locations for the bathroom...it can sometimes put a bit of a 'grey cloud' over an event that should be pure fun. But I am so well supported by my friends that I can often take a little back seat with many of the little annoying things which is nice! :-)
My christmas card making has taken a bit of nosedive since last week's stint up at Newcastle and my desperate attempts to return home. My case is still unpacked and I have laundry mania happening all around me. I do need some time to dedicate to housework organisation. I need to get back on track but I have had family staying with me a lot over the past month which meant I got out of routine a bit and dare I say, a tad lazy!
Well, its back on track now especially with Christmas around the corner. I have quite a few plans...mainly to have a fab festive time! Last Christmas was still a major struggle as I was seriously unwell, in and out of intensive care. I remember feeling so poorly that I could hardly stomach eating on Christmas Day. It was painful to swallow and I couldn't even taste anything. I hope this year is much happier and I hope that friends Racheal Wakefield, Victoria Tremlett, Jessica Wales and many more people waiting for transplant get their best ever gift! I am also thinking at this time, as the countdown to Christmas begins that there are so many families that will be touched by organ donation and transplantation due to their loss of a loved one. It must be so terribly difficult at Christmas.
My thoughts are also with all the little children around the world who are suffering whether through illness, malnutrition, loss of parents. Their Christmas will be very different to the one that you and I know. The important thing to remember I suppose is that we can all make a difference...if we really want to.
Tuesday, 1 December 2009
Friday, 27 November 2009
Calm, collected and cool...
Just when I thought I was behaving and doing quite well I felt a crushing blow yesterday when the Professor looked at me for 2 minutes and then the next thing I was being admitted urgently with suspected problems with the PTLD(Post Transplant Proliferative Disease) in my liver! I remained calm and unalarmed, but at the same time so many things started running through my head: does this mean more aggressive chemotherapy? Its not really possible to reduce my immunosuppression any further as I am already on an infant dose. I looked in my mums eyes and I could see the worry in her although she is very good at not letting it show.
Yesterday I was also a bit cross because my plans were all out of the window! I have quite a hectic timetable and this literally meant cancelling on a number of people and events which made me cross. Particularly because I have had this complaint for a number of months now and it has not really been addressed by a range of doctors. Why now? I moved on from the anger and made all the calls and texts and re-arrangements I needed to make. I think the added uncertainty didn't help and the idea of being bored stiff in hospital all weekend whilst the docs are away also filled me with dread!! I did 10 minutes of meditation and that helped a bit?!
I just needed to get home and quick and hope to then make some of the events I had thought I wouldn't make. In particular, one event next week where I have all the tickets so it would have been a nightmare to try and get those to the girls in the event that I couldn't make it.
You can imagine how pleased I am to hear now that I can return home with some medication and the adoption of a low sodium and ultra strict daily fluid allowance. I think I can manage that. Anything to be back home to be honest. I made sure I added the extra bronzer today to make sure the docs see just how well I am, lol!
So, I am waiting for my prescription and discharge letter and off I trot down the M1. I really cannot complain now that I look back, the docs are doing their very best to help me and I am ever so grateful. Sometimes my plans will be somewhat disrupted but this is my new life now and I have to adapt and accept that. My gift is so precious, it must always come first and everything else is secondary really. I think of my pre-transplant friends, waiting for that call and I really feel for them. I know what its like, that waiting game. The unknown? The uncertainty? The pause button. But then I also remember thinking, blow this! I am going to make the most of my time and do as much as I possibly can without causing myself damage. Its the same approach that I have now and it just makes life so much less stressful. I anticipate the bad days and then they are never so bad. Its gonna happen so it doesn't surprise me when it does! Yesterday did get to me perhaps because its the first time really post transplant that I feel most like my old self, spiritually and I just felt totally crushed yesterday. I am glad that has passed and I know I am myself again as I've been chatting incessently. This is often characterised by big red rosy cheeks that stare back at me in the mirror.
So its game on...I continue with my medications and monitor myself on the new treatment plan. Some of the nurses commented on the amount of medication I am on post transplant. I think by now, I would be taking say a quarter of the amount I take but with my other conditions I have quite an exhaustive list. To be honest, its an intrinsic part of my life and I am often unaware of how many I take. I think thats a great thing, especially now as I wish to do more vocationally and immerse myself into 'usual' living. It is very difficult when I am in constant pain, sleepless nights and breathlessness but I am determined. A vast amount of time has been spent lately looking into options so I reckon I will find my niche soon...all I need is the doctors permission and then its go, go, go!
Christmas is just such an exciting time and I cannot wait for it to come around. I am sure that as it approaches I will get a bit stressed and tired. But, this year, I have been starting early with making gifts, decorations...I saw a wonderful Christmas window at Fennicks in Newcastle. It was totally mesmorizing and everyone young and old were glued to the window pane. Such care and detail had been taken which enhanced the quality and magic of the displays. I thought what a great job it would be as a window dresser for Christmas!!
Tiredness just creeps up on me so often its crazy! If I miss a nap, I do feel very disrupted and unbalanced. I may speak with my GP about it and whether I should cut down my nap time?!? Its hard espcially being on so much medications that can cause drowsiness and the fact that I am quite active when my eyelids are open!! I think if I was getting exhuasted and had done absolutely nothing, then I would be more concerned.
There is a course I hope to enrol on next week and also I plan to do some trips around South London to take photographs. I want to collate a portfolio of images which are probably not going to be good at all. I want to create a starting point and get some critical feedback so I can enhance my photography. I would like to get acquainted with various recommended software for manipulating photos as I haven't dedicated as much time to it really.
My final hydrotherapy session is next week and then I am homefree. Well, not quite. I will be following up the exercise programme at my local pool which means equipping myself with some floats and bits. I think I will feel a bit like a pleb at first, but knowing the long term benefits will help me to persevere. It will be better as I can choose times that suit me and allow enough days for recovery. I have a little pool bag ready every week with all my toiletries, towels and clothes change. I make sure there is an energy drink and water too as I get ever so dizzy during the session and after getting showered and dressed.
I think I feel a power nap coming on and so I am going to give in to it! I will then start a little sewing project that I have been wanting to do for the past year but have never got round to!!
Before I dash, I just want to say how pleased I am that Holly Shaw won a Vinspired Shout Award last night and also that I am pleased to hear that Emily Thackray is on the mend from her scary lung function problems. I think what I have learned the most in the past week is that post transplant life is not a permanent fixer. Like a plaster, it will come unstuck and fall off sometimes but it will often heal or can last a bit longer with monitoting, care and patience.
Yesterday I was also a bit cross because my plans were all out of the window! I have quite a hectic timetable and this literally meant cancelling on a number of people and events which made me cross. Particularly because I have had this complaint for a number of months now and it has not really been addressed by a range of doctors. Why now? I moved on from the anger and made all the calls and texts and re-arrangements I needed to make. I think the added uncertainty didn't help and the idea of being bored stiff in hospital all weekend whilst the docs are away also filled me with dread!! I did 10 minutes of meditation and that helped a bit?!
I just needed to get home and quick and hope to then make some of the events I had thought I wouldn't make. In particular, one event next week where I have all the tickets so it would have been a nightmare to try and get those to the girls in the event that I couldn't make it.
You can imagine how pleased I am to hear now that I can return home with some medication and the adoption of a low sodium and ultra strict daily fluid allowance. I think I can manage that. Anything to be back home to be honest. I made sure I added the extra bronzer today to make sure the docs see just how well I am, lol!
So, I am waiting for my prescription and discharge letter and off I trot down the M1. I really cannot complain now that I look back, the docs are doing their very best to help me and I am ever so grateful. Sometimes my plans will be somewhat disrupted but this is my new life now and I have to adapt and accept that. My gift is so precious, it must always come first and everything else is secondary really. I think of my pre-transplant friends, waiting for that call and I really feel for them. I know what its like, that waiting game. The unknown? The uncertainty? The pause button. But then I also remember thinking, blow this! I am going to make the most of my time and do as much as I possibly can without causing myself damage. Its the same approach that I have now and it just makes life so much less stressful. I anticipate the bad days and then they are never so bad. Its gonna happen so it doesn't surprise me when it does! Yesterday did get to me perhaps because its the first time really post transplant that I feel most like my old self, spiritually and I just felt totally crushed yesterday. I am glad that has passed and I know I am myself again as I've been chatting incessently. This is often characterised by big red rosy cheeks that stare back at me in the mirror.
So its game on...I continue with my medications and monitor myself on the new treatment plan. Some of the nurses commented on the amount of medication I am on post transplant. I think by now, I would be taking say a quarter of the amount I take but with my other conditions I have quite an exhaustive list. To be honest, its an intrinsic part of my life and I am often unaware of how many I take. I think thats a great thing, especially now as I wish to do more vocationally and immerse myself into 'usual' living. It is very difficult when I am in constant pain, sleepless nights and breathlessness but I am determined. A vast amount of time has been spent lately looking into options so I reckon I will find my niche soon...all I need is the doctors permission and then its go, go, go!
Christmas is just such an exciting time and I cannot wait for it to come around. I am sure that as it approaches I will get a bit stressed and tired. But, this year, I have been starting early with making gifts, decorations...I saw a wonderful Christmas window at Fennicks in Newcastle. It was totally mesmorizing and everyone young and old were glued to the window pane. Such care and detail had been taken which enhanced the quality and magic of the displays. I thought what a great job it would be as a window dresser for Christmas!!
Tiredness just creeps up on me so often its crazy! If I miss a nap, I do feel very disrupted and unbalanced. I may speak with my GP about it and whether I should cut down my nap time?!? Its hard espcially being on so much medications that can cause drowsiness and the fact that I am quite active when my eyelids are open!! I think if I was getting exhuasted and had done absolutely nothing, then I would be more concerned.
There is a course I hope to enrol on next week and also I plan to do some trips around South London to take photographs. I want to collate a portfolio of images which are probably not going to be good at all. I want to create a starting point and get some critical feedback so I can enhance my photography. I would like to get acquainted with various recommended software for manipulating photos as I haven't dedicated as much time to it really.
My final hydrotherapy session is next week and then I am homefree. Well, not quite. I will be following up the exercise programme at my local pool which means equipping myself with some floats and bits. I think I will feel a bit like a pleb at first, but knowing the long term benefits will help me to persevere. It will be better as I can choose times that suit me and allow enough days for recovery. I have a little pool bag ready every week with all my toiletries, towels and clothes change. I make sure there is an energy drink and water too as I get ever so dizzy during the session and after getting showered and dressed.
I think I feel a power nap coming on and so I am going to give in to it! I will then start a little sewing project that I have been wanting to do for the past year but have never got round to!!
Before I dash, I just want to say how pleased I am that Holly Shaw won a Vinspired Shout Award last night and also that I am pleased to hear that Emily Thackray is on the mend from her scary lung function problems. I think what I have learned the most in the past week is that post transplant life is not a permanent fixer. Like a plaster, it will come unstuck and fall off sometimes but it will often heal or can last a bit longer with monitoting, care and patience.
Wednesday, 11 November 2009
Happy vibes=happy times
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 chilled...
we got pampered...
we strolled...
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.
Great news!
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!!
we chilled...
we got pampered...
we strolled...
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.
Great news!
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!!
Thursday, 29 October 2009
A small window of the world...
In my local town today was a parade of brave soldiers back safely from Afghanistan. But many of them are injured and sadly many young men have died. I wanted to go and show support but knew I wouldn't be able to handle the crowd. I wanted to say thanks! I think a lot of people forget that they are out there fighting for us whilst we waltz around Primark looking for a dress for a night on the tiles...
Sophie Atay is a little girl waiting to have her life saved. Her parents need to raise £500,00 to get her there in 12 days time or else she is most likely to die. She's not even two years old. I am hoping some rich footballer or celeb could spare this little girls' life which so far has been filled with suffering. Poor little might, she hasn't even had a chance yet to see her dreams come true. Her justgiving page is here.
I will be doing some twittering and facebooking later for her...who knows? Half an hour of tweeting might make a bit of a difference. She is on tonights News At Ten so hopefully that will get people acting too. The success of the Save Jess campaign just shows the power of social networking and the speed in which messages can get across. In Sophie's case, like Jess, time means everything!
I didn't intend to start this entry on a sad note but for me, its impossible tobe untouched by reality and to try and do something about it.
Today was 'me' day. I woke up and decided that today would be about all the things I like doing, and nothing about things I dislike! Woo hoo! So, although I didn't get through my entire list, I managed to slowly cook myself an evening meal, sit up on the rooftop reading a couple chapters of Marley and Me, had a hilarious sesh on the Wii fit and made some christmas cards.
Last night was such a blast. Kat and I went to HMV Forum and sawthe wonderful Calvin Harris! He was supported by the talented Mr Hudson and we were very lucky to nab a couple seats when we arrived. The whole venue rocked and the atmosphere was electric. He had his lil synthesiser decks out and was going for it. We remenisced on uni days, carefree and full of passion. Fashion was high on the agenda...everyone rocking tees, leggings and shoots! Perfect for a hot venue! I think some people were a little possessed but they were having a good time...you can't knock that now can you?
Each tune just got better and better and it was great to be united with other fans. We left just before the final track to avoid the crowds and drove back to South. The evening ended with a little Happy Meal @ my local drive-thru!
I am very aware that Swine Flu cases are on the up and so I am very cautious about where I go and when. There are a couple of 'meet ups' this week that have been cancelled because of colds and sniffles. In the long term its for the best but it is a shame. With a number of my friends teaching, the only time we can meet is in the holidays!
I had fun plastering on my make up today with my fab new body shop brushes. I really need a good holder for them though to keep them neat and clean. I think I've settled on a bronze look that I have as a staple 'mask' and then sometimes I will adventure with purples and greens for my eyes. I have always loved make up but never found the time to really induldge in the art of applying and creating effects. It is nice now to allocate time and play around with colours. Talking about makeup, im a bit miffed with my new GP surgery that have lost my prescription for camoflague makeup! This resulted in me ringing the hospital on their behalf to get a replacement from my file!
I am very upset with the occupational therapy team who I need to come and re-assess my living conditions. Its a matter of some minor and maybe one major adaptation and I am not getting anywhere. Its so frustrating that people just simply do not do their jobs, even at the most basic level. Its disgraceful and it seems they never get pulled up on it?!
I did want to ring for any available hydrotherapy sessions this week but things have been so busy it just doesnt seem possible. Depending on how things go tomorrow I might give them a buzz just to see if there's an available slot. It is very beneficial and I don't want to lose momentum.
There is a rather radical haircut that I am after but its gonna involve some saving. I am a bit worried as it will require around 5x maintainence daily than I have now and it will tire me out. I may have to adapt it a bit so I can just pile it up when I can't be bothered (which will probably be everyday, lol!)
I think I will do my nails after finishing a few more cards but I just want to remind everyone of Holly's LLTGL Abseil event taking place nr Manchester on Saturday 7th November 2009. Here is a link to her justgiving page if you have any spare change to support the charity.
Think I might sort my grocery shopping list incase I get a chance to ask a mate to grab some bits for me from the supermarket before the weekend! I have a taste for some Caribbean food after a lovely treat from my friends R and L last night before I made my way to Kentish Town.
Sophie Atay is a little girl waiting to have her life saved. Her parents need to raise £500,00 to get her there in 12 days time or else she is most likely to die. She's not even two years old. I am hoping some rich footballer or celeb could spare this little girls' life which so far has been filled with suffering. Poor little might, she hasn't even had a chance yet to see her dreams come true. Her justgiving page is here.
I will be doing some twittering and facebooking later for her...who knows? Half an hour of tweeting might make a bit of a difference. She is on tonights News At Ten so hopefully that will get people acting too. The success of the Save Jess campaign just shows the power of social networking and the speed in which messages can get across. In Sophie's case, like Jess, time means everything!
I didn't intend to start this entry on a sad note but for me, its impossible tobe untouched by reality and to try and do something about it.
Today was 'me' day. I woke up and decided that today would be about all the things I like doing, and nothing about things I dislike! Woo hoo! So, although I didn't get through my entire list, I managed to slowly cook myself an evening meal, sit up on the rooftop reading a couple chapters of Marley and Me, had a hilarious sesh on the Wii fit and made some christmas cards.
Last night was such a blast. Kat and I went to HMV Forum and sawthe wonderful Calvin Harris! He was supported by the talented Mr Hudson and we were very lucky to nab a couple seats when we arrived. The whole venue rocked and the atmosphere was electric. He had his lil synthesiser decks out and was going for it. We remenisced on uni days, carefree and full of passion. Fashion was high on the agenda...everyone rocking tees, leggings and shoots! Perfect for a hot venue! I think some people were a little possessed but they were having a good time...you can't knock that now can you?
Each tune just got better and better and it was great to be united with other fans. We left just before the final track to avoid the crowds and drove back to South. The evening ended with a little Happy Meal @ my local drive-thru!
I am very aware that Swine Flu cases are on the up and so I am very cautious about where I go and when. There are a couple of 'meet ups' this week that have been cancelled because of colds and sniffles. In the long term its for the best but it is a shame. With a number of my friends teaching, the only time we can meet is in the holidays!
I had fun plastering on my make up today with my fab new body shop brushes. I really need a good holder for them though to keep them neat and clean. I think I've settled on a bronze look that I have as a staple 'mask' and then sometimes I will adventure with purples and greens for my eyes. I have always loved make up but never found the time to really induldge in the art of applying and creating effects. It is nice now to allocate time and play around with colours. Talking about makeup, im a bit miffed with my new GP surgery that have lost my prescription for camoflague makeup! This resulted in me ringing the hospital on their behalf to get a replacement from my file!
I am very upset with the occupational therapy team who I need to come and re-assess my living conditions. Its a matter of some minor and maybe one major adaptation and I am not getting anywhere. Its so frustrating that people just simply do not do their jobs, even at the most basic level. Its disgraceful and it seems they never get pulled up on it?!
I did want to ring for any available hydrotherapy sessions this week but things have been so busy it just doesnt seem possible. Depending on how things go tomorrow I might give them a buzz just to see if there's an available slot. It is very beneficial and I don't want to lose momentum.
There is a rather radical haircut that I am after but its gonna involve some saving. I am a bit worried as it will require around 5x maintainence daily than I have now and it will tire me out. I may have to adapt it a bit so I can just pile it up when I can't be bothered (which will probably be everyday, lol!)
I think I will do my nails after finishing a few more cards but I just want to remind everyone of Holly's LLTGL Abseil event taking place nr Manchester on Saturday 7th November 2009. Here is a link to her justgiving page if you have any spare change to support the charity.
Think I might sort my grocery shopping list incase I get a chance to ask a mate to grab some bits for me from the supermarket before the weekend! I have a taste for some Caribbean food after a lovely treat from my friends R and L last night before I made my way to Kentish Town.
Wednesday, 21 October 2009
Time to press the pause button!
If you knew how many times last week I intended to paint my nails and I've still not got round to it. Crazy times! I just feel tired and quite overwhelmed at the mo, though I have got terrific support. I admit that last week I got a little carried away with my perception of my true ability and really did push that bit too far...o dear!
Last week was a bit of a blur really but involved a lot of smiling and laughter and music. So it must have been pretty good?!?!? I caught up with my friends during the day and eve. My lovely friend 'L' was a superstar and took me to collect some log seats from someone on the freecycle forum. Bless her, she did the drive which can be awkward as you pass through around 6 towns and there can be a bit of weaving. Its my old stomping ground so I could direct...thing is...as usual...I get a wacky idea in my head and hadn't factored in the manouvering of the logs from the garden to the car boot. Luckily L and the lady successfully transported my chosen logs and then we began our quest for some yum food. We ended back near my home @ Pizza Express and it was the best tasting meal ever. Thats what being over hungry does to you. I ate far more than I would across two evening meals!!!
Oh, do I know when I feel ropey. My tongue gets extremely sore and I feel like I am in the deepest sleep when I wake in the mornings. I have been surviving on around 2-3 hours sleep a night for nearly 3 weeks. Its scary now and I have tried a variety of interventions but...I have not been consistent admittedly with the milky drink b4 bed routine. I think it might make me nauseous but I will give it a bash again.
My weekend was fun as a '+1' with my mate sampling a very very nice hotel in Eastbourne. We were spoiled with the largest hotel room Ive ever stayed in my life (think Paris Hilton, seriosuly). There was a separate lounge room bigger than my kitchen and lounge area together and a stunning large bedroom. So much space and light...amazing!
Last night I had a great time with the girls and had a lovely makeover and trying lots of Bodyshop products. I wasn't 100%, but after a day under the duvet I really needed 'perking up' and it was fab! Laughter, wine, games and makeup...perfect ingredients for a girly night in. I loved last night even more because it was on my 'to do' list post transplant so I am well chuffed that I managed to do it! I did end up buying lots but its nice to pamper yourself. Like a friend said, its great being girly and I think we all ended up buying a vitamin E face spritzer for when on an aircraft and hotel rooms with air con!
I am a bit concerned about my hair at the moment as its very very thin and lifeless?!?! I seem to go through cycles of excess hair to no hair!! Weird! I might talk to my new GP about it though I reckon they'll just say its a potential side effect of my medication.
I am looking forward to hydrotherapy this week as I sadly missed it last week because I felt so poorly. I reckon I will benefit from it especially if I can eventually go to a lesiure centre to do it. I think I am getting more exhausted not just from the insomnia but there are parts of my new home that could be adapted to make my life easier. I have liaised with my old occupational therapist and going to get the ball rolling so that I am not so so tired. I do get a bit scared when I get so breathless and tired...I am keeping my eye out for further signs of possible rejection. Being on such low immunosuppression means that this is a realistic possiblity.
I am going to take a little nap now as I feel myself shutting down. I think when I wake I will make some soup...I fancy a bit and as I can't taste anything I can chuck in all my veggies that are waiting to be used.
I have got myself a new phone, but I'm wondering if it was such a smart move. Getting my head around it is proving somewhat difficult, or maybe I'm making it difficult. There is a good apple website, I just need to be in the mood for it I reckon?!?!
Right Im going to dream of my next holiday...
Last week was a bit of a blur really but involved a lot of smiling and laughter and music. So it must have been pretty good?!?!? I caught up with my friends during the day and eve. My lovely friend 'L' was a superstar and took me to collect some log seats from someone on the freecycle forum. Bless her, she did the drive which can be awkward as you pass through around 6 towns and there can be a bit of weaving. Its my old stomping ground so I could direct...thing is...as usual...I get a wacky idea in my head and hadn't factored in the manouvering of the logs from the garden to the car boot. Luckily L and the lady successfully transported my chosen logs and then we began our quest for some yum food. We ended back near my home @ Pizza Express and it was the best tasting meal ever. Thats what being over hungry does to you. I ate far more than I would across two evening meals!!!
Oh, do I know when I feel ropey. My tongue gets extremely sore and I feel like I am in the deepest sleep when I wake in the mornings. I have been surviving on around 2-3 hours sleep a night for nearly 3 weeks. Its scary now and I have tried a variety of interventions but...I have not been consistent admittedly with the milky drink b4 bed routine. I think it might make me nauseous but I will give it a bash again.
My weekend was fun as a '+1' with my mate sampling a very very nice hotel in Eastbourne. We were spoiled with the largest hotel room Ive ever stayed in my life (think Paris Hilton, seriosuly). There was a separate lounge room bigger than my kitchen and lounge area together and a stunning large bedroom. So much space and light...amazing!
Last night I had a great time with the girls and had a lovely makeover and trying lots of Bodyshop products. I wasn't 100%, but after a day under the duvet I really needed 'perking up' and it was fab! Laughter, wine, games and makeup...perfect ingredients for a girly night in. I loved last night even more because it was on my 'to do' list post transplant so I am well chuffed that I managed to do it! I did end up buying lots but its nice to pamper yourself. Like a friend said, its great being girly and I think we all ended up buying a vitamin E face spritzer for when on an aircraft and hotel rooms with air con!
I am a bit concerned about my hair at the moment as its very very thin and lifeless?!?! I seem to go through cycles of excess hair to no hair!! Weird! I might talk to my new GP about it though I reckon they'll just say its a potential side effect of my medication.
I am looking forward to hydrotherapy this week as I sadly missed it last week because I felt so poorly. I reckon I will benefit from it especially if I can eventually go to a lesiure centre to do it. I think I am getting more exhausted not just from the insomnia but there are parts of my new home that could be adapted to make my life easier. I have liaised with my old occupational therapist and going to get the ball rolling so that I am not so so tired. I do get a bit scared when I get so breathless and tired...I am keeping my eye out for further signs of possible rejection. Being on such low immunosuppression means that this is a realistic possiblity.
I am going to take a little nap now as I feel myself shutting down. I think when I wake I will make some soup...I fancy a bit and as I can't taste anything I can chuck in all my veggies that are waiting to be used.
I have got myself a new phone, but I'm wondering if it was such a smart move. Getting my head around it is proving somewhat difficult, or maybe I'm making it difficult. There is a good apple website, I just need to be in the mood for it I reckon?!?!
Right Im going to dream of my next holiday...
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