Update

Just a quick update to say clinic last week went suprisingly well and my consultant was extremely pleased with me. He couldn't tell me why I felt yucky as there was no obvious reason for it, so I think it may have been a phase or a leftover from the cold I had. All seems to be picking up a bit now and my appetite is returning a bit-it is never good as anyone reading this who has fed me will know, but it is better than it was.
I have had a lovely weekend as I attended my nephew Benjamin's second birthday party on Saturday. The party was for his immediate family and it was really nice and chilled out-well as chilled as you can get with two young boys on the go. Then on Sunday my friend was up for the weekend from Cornwall and it was lovely to catch up with her and her family.
All this has made me feel much more positive although I have a way to go yet as there are a few health niggles which are ongoing and although not serious they may need some attention in the future. I also don't particularly like writing down all the particulars of my life and that last post was rare for me but I just needed to get it off my chest. What does amaze me is the array of health blogs out there where people will literally write every detail on them and not really consider what they are putting. I know some are private for them and that is ok-but then is it private if anyone can read it? Some are raising awareness about certain illnesses which although the motive is good I have reservations about putting everything that happens to them down on a blog. I guess it isn't exploitative if they readily agree to it, but I am generally a very private person where my health is concerned and share aspects of it only if it feels right. I suppose I have wondered lately if the way I approach the issue is wrong as I don't want it all out there on the web, which is my choice I know. However it seems almost the norm now to lay it all open, but maybe it is because I belong to a few web forums where it started and it's become a fad and it isn't the norm as such.
But to end this post I am going to talk about the worse thing that happened to me this last week. There was a big sale on at Silkweavers for classic linens and I love their hand dyed stuff but I obviously haven't quite got to grips with their new ordering system as I managed to order four pieces in 18ct Cork Linen which I can't see myself using. I am only glad the big piece I ordered I did manage to get right but if anyone thinks they can use the linen leave me a message and we can talk. They are all fairly neutral colours and are the smallest size they have on the site.

Life

I wasn't sure how to title this post so a simple word will have to do for now. I know it takes me a while to catch on but just lately I have started to become a bit confused about the direction my life is taking. I think it is because I am at an age where many of my friends are moving on with their lives by settling down and having children and I am starting to realise how restricted certain areas of my life are. It is weird as I don't feel I have lived enough to settle yet so in that sense I am happy, but I am not sure I am ever going to get the chance to really live whilst I depend on dialysis to keep me alive. And that is the rub-it keeps you alive but it is also a terrible tie in and of itself, not to mention some of the side effects I seem to now have. I am much more nauseous and tired than I have previously been and yet my results are very good so we are not sure why that is the case. But it puts me off my food-which I eat because I have to rather than because its enjoyable otherwise it would lead to more problems for me. Anyway the answer is a transplant and although it is now no longer out of the question and I am on the waiting list, the years not on it have left a lasting legacy. My chances of a match have decreased since the surgeon wrongly said no and I have a remote chance of getting a new kidney and even if I do the worst dialysis complication of low BP I have got gives it a lower chance of success. To stand a chance I would need extra care in ICU and all that goes with it, so the thought of a transplant is at the same time a blessing and a curse. And yet it is the only thing that can help my quality of life so it is a double edged sword and in many ways not to be taken lightly.
In the past I always got on with things but for some reason time seems to be slipping away and I all I can do is carry on and try and get the most out of life as I can. So although the OU keeps me busy and I am loving the new course I am going to actively try and do stuff that might improve my mood and feelings of frustration at what I can't do and embrace those I can. I want to try and think about going on holiday but I have been told it may not be that easy as my BP is scarily low for those who don't know it is normal for me and even if another unit agree to take me it may not be a good idea if they get freaked out by it. I also have clinic this week after my last appointment was cancelled and there is alot to get through as apart from the above I have been picking up infections and need a jolly good sort out I think.
I feel a bit selfish for thinking all this as I know I am so much better than many other patients but I am also alot younger so I think that makes a small difference. We have also lost 8 patients at the unit in as many weeks and 2 of them I had known for awhile and in particular one of them was especially upsetting. But one of the things I am finding hard is not having many contemporaries to speak too as most patients my age have had transplants and it changes the dynamics of the relationship and it is also very suprising how quickly they forget what dialysis is like and can't relate to the situation in the same way. When I think of things like this I wonder if things would have changed in my friendship with Sara if she had lived and got her transplant. But somehow I am not sure it would as we clicked on so many levels and many away from our shared illness, but I could be wrong and living with rose tinted spectacels which is all to easy to do. So I leave you with some lyrics that remind me of her:

"There You'll Be"

When I think back
On these times
And the dreams
We left behind
I'll be glad 'cause
I was blessed to get
To have you in my life
When I look back
On these days
I'll look and see your face
You were right there for me

[Chorus:]
In my dreams
I'll always see you soar
Above the sky
In my heart
There will always be a place
For you for all my life
I'll keep a part
Of you with me
And everywhere I am
There you'll be
And everywhere I am
There you'll be

Well you showed me
How it feels
To feel the sky
Within my reach
And I always
Will remember all
The strength you
Gave to me
Your love made me
Make it through
Oh, I owe so much to you
You were right there for me

[Repeat chorus]

'Cause I always saw in you
My light, my strength
And I want to thank you
Now for all the ways
You were right there for me
You were right there for me
For always

[Chorus:]
In my dreams
I'll always see you soar
Above the sky
In my heart
There will always be a place
For you for all my life
I'll keep a part
Of you with me
And everywhere I am
There you'll be
And everywhere I am
There you'll be
There you'll be

Mammoth finish

After a very long time in the stitching I have finished Chatelaine's MVI:





The only change I made was to the center as although I bought the embellishment pack, the leaf I received didn't look right and I also wasn't keen on the monogrammed center. By looking what others have done I got inspiration and managed to come up with something I liked using beads from the kit and embellishment pack.