I thought this might make people smile, this is my rabbit Raina (a German Lop), she found out she could jump up on the patio chairs and now does so frequently sitting there for about 30 mins at a time before getting bored and going off to dig yet another hole in Nick's lawn. If she carries on with the Great Escape routine her days could be numbered! She already made 2 attempts at freedom but only got as far as nextdoor and then came back!! As you can tell from this she isn't the brightest of bunnys.

I can't sleep! It is infuriating. I have talked to other renal patients and a significant amount of them said they had disturbed sleep patterns. Mind you I have been an insomniac for years -probably as many as I have been a renal patient but remembering that far back is difficult :) lol.
The not being able to sleep doesn't necessarily bother me as I can always find something to do, read or watch on telly - believe you me with the number of Open University programmes I have watched over the years I should have earned degrees in subjects ranging from Art History to Quantum Physics (although I have a sneaking suspicion I would have failed that one!). It is often amazing what you can learn from late night/early morning telly.
Most commonly these days I knit; at the moment I am attempting my first ever pair of socks much to the amusement of Nick who asked why I didn't buy a pair for £1 in Primark. MEN! They just don't appreciate the feeling of satisfaction that I will achieve on completing my socks (probably by 2010!!!) and every time I wear them I will be able to wear them with pride. If there is anyone out there with similar projects or just loves knitting feel free to join in as next to the time spent on the dialysis machine knitting takes up the majority of my free time.

It was a dialysis day yesterday and I felt really washed out afterwards and went to bed by 8.30pm. Unusually I slept 12 hours straight. This is highly unusual for me as I am one of life's insomniacs.
With Nick going away for such a long time I have been lucky enough to have friends who are willing to learn how to put my needles in and work the dialysis machine. Hopefully I will not have to go into the hospital for my dialysis and stay as a home haemo patient until Nick comes back and takes over again. Yesterday our first volunteer came and put in one of the needles for her first time (she is a nurse so has had lots of experience). It went really well and she was brilliant so I have complete confidence in her.
I don't feel very well today. It is difficult to describe how I feel on a day like this; I just don't feel well. No energy and the thought of eating ... It is days like this that I have to force myself to eat something so I don't loose too much weight. Oh well I'm sure I'll feel better tomorrow.

It should be dialysis tonight but Nick is away with work and so I have had to take two days between sessions (just like the weekend for hospital based patients). It might be something I have to get used to as Nick is going away for 4 months in November.
I am not looking forward to him going away; he will be away for Christmas, New Year and my birthday. This would be bad enough but I won't only be losing my husband for 4 months I am also losing my carer. It is a scary thought that I will have to manage without him. People like Nick provide hours of unpaid care every day.
I am lucky enough to live close to my family and when I need extra help they are always there to support and assist. I know that I am extremely fortunate to have such supportive family and friends around me and my life would be poorer without them.

Dialysis day comes round yet again. Some weeks seem to pass quicker than others and this week has flown by. The passage of time has weighed heavily on my mind this week. My eldest nephew was 17 on Friday and it shocked me to think how much has changed in my life during these intervening years.
I was already living with renal failure when Michael was born but I had not yet started undergoing dialysis. I don't think I appreciated then how much my life would change when I began dialysis; or that a transplant is not a cure - just another form of treatment. Some people I have talked to believe that a transplant is like a magic wand that will solve all my problems. Life with a working transplant is wonderful! Your life doesn't revolve around a machine and you can go away from home without having to plan for weeks ahead. After my first failed transplant; I was in hospital for 6 months, lost count of the number of biopsies and underwent 6 operations attempting to save the kidney. So I knew that there were no guarantees with a transplant and so when my second kidney worked so well I was grateful for each day it gave me.
Now I am back on dialysis waiting for my third transplant and attempting to live as normal a life as possible. So in the last 17 years there have been some major changes in my life, great highs and drastic lows.
I wonder what the next 17 years has in store?

It's a dialysis night tonight so I thought I'd try to type my diary with just one hand! It isn't all that easy and might take me much longer to post my blog.

Yesterday's launch meeting was fantastic. I was pleasantly surprised at the number of AM's and civil servants that attended the launch. There was cross party representation which is the most important thing. I believe it is vital that the PLUS campaign is political in it's aims and objectives but it should never become a party political issue - many people may disagree with me and I welcome any comments and discussion on this subject.

Once again I was impressed with Edwina Hart's positive reaction to the issues that were put before her. When asked a direct question she gives a direct and honest answer. You are left with the impression of her being a formidable woman and it is a pleasure to meet a lady who is so passionate and dedicated to her role within the Welsh Assembly.

I would like to take this opportunity to express my gratitude to all those people who have backed the PLUS campaign in their official capacity and to remind anyone who has not yet signed up to DO IT. Particularly patients - even those who aren't feeling well at the moment (you may not be able to do the walk for life or the 10K race) but everyone can pick up a pen and get lobbying.

Today is the big day, the official launch of the PLUS campaign. I am hoping that the press will pick up on the story in earnest for this evening's Welsh News. I saw a short interview with Alison on this morning's news and hope the coverage goes on all day. To succeed this campaign needs public support and to get that people need to first know what it's all about.
People need to realise that it is People Like Us that this disease affects; I could just as easily have been their daughter, sister, wife or mother. It doesn't just attack the very young or the elderly, I was 17 when I first started having problems. People of all ages and from all walks of life can have their lives turned upside down by the diagnosis that the have End Stage Renal Failure. Disease is no respecter of wealth or status. Please support this campaign to raise awareness of the needs of renal patients in Wales this isn't just about money (although it is always good to raise funds!) this is about word of mouth and people power. Getting the issues talked about and raising the profile of patients who need your support.

Hi there,
Not such a good couple of days, I felt really tired and everything was such a effort. Someone once asked me to describe what it felt like when I had a bad day. When I had my transplant a bad day would have meant sleeping late, getting stuck in traffic or burning my dinner. When you are a dialysis patient having a bad day can take on a whole new meaning; from feeling listless to being nauseous and not feeling like eating anything. Then at other times feeling exhausted and not even being able to make yourself a cup of tea.
To cap it all last night during dialysis a large blood clot formed in one of the machine's tubes and I had to come of the machine an hour early so I didn't get a good dialysis session which means I'll have to have a really good session Tuesday evening to hopefully get me back to my correct weight and feeling better.
I don't like myself at times like this because I think I look and sound miserable and moaning. Oh well as she said in the movie - after all tomorrow is another day.

Last night was a dialysis night and luckily the machine only alarmed a few times which meant I could catch up on some sleep. I still didn't want to wake up this morning though. I don't know about other patients but I have a real mixture of reactions to dialysis. Some times I could fight the world and other times I couldn't fight my way out of a paper bag. Unfortunately today is one of the latter! Oh well world domination will just have to wait until tomorrow.

Hi my name is Melanie and this is my first ever blog. Until this afternoon I would never have imagined becoming a blogger - to be honest I thought the only people who wrote blogs were teenagers and I am certainly not a teenager!

I am really looking forward to getting more involved with the People Like Us campaign and I hope that more patients take this oportunity to set up their own PLUS diary's.

PEOPLE LIKE US CAMPAIGN

This is the first posting on Melanie's blog from Kidney Wales

PEOPLE LIKE US CAMPAIGN