Saturday, October 18, 2008

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

2 comments:

Gina said...

{{{hugs}}}

Gina

gemmak said...

You might think you are a bit 'selfish for thinking all this' but from where I'm sitting you sound amazingly upbeat considering all that you have to contend with. I can't begin to imagine and I applaude you for coping so well.

I have a close friend who is a transplant recipient, albeit not a particularly succesful one and you are right, things do seem to change, she now gets very miserable about the down side of her current situation but no longer remembers 'how it was before'...by he own admission. I think it's just the human state to forget those things to some degree and maybe thats a good thing...if frustrating for someone in your situation. Hang in there, hopefully things will work out for you before too long :o)