As i was 'prettifying' this blog, i thought i ought to update some content also, it is long overdue.
This blog was initially a vehicle to communicate with friends about my health issues, whilst removing some of the awkwardness and energy sapping rambling explanations. I found it nurtured a degree of silent understanding and unquestioning acceptance, that i hadn't experienced before. I know people read it, and never said another word. Since I was told (on Christmas Eve!) that i didn't need to be listed for transplant yet I have been riding a rollercoaster of emotions. I found myself despairing at being told I wasn't going to be listed, in contrast to my family's happy delirium. This may, to many, appear ungrateful, confused and an altogether odd response. In my defence, I have been assured I am not the only one to have reacted like this.
I felt that being told i was 'too well' to be listed was cruel, and left me hanging. Holding onto the thought of transplant assessment, and the process and support network which surrounds it, had been what i had been holding onto for some time. The process of being referred for the transplant assessment took almost a year from when it was first mentioned, and as time went on it became more and more consuming.
Having this outcome sprung upon me, after such a build up felt like having my hand-rail removed whilst i'm still unsteady.
I feel this has been something of a guilty secret since i received the outcome, as those friends who are involved in the transplant world and are desperately, torturously waiting for their call will feel they would do anything to be in my position and be 'too well'; and outsiders from this strange and surreal world appear to see it as an 'all clear', rather than a delaying of the almost inevitable.
To be continued...
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4 comments:
Fantastic post, and so true to my own feelings at that time. I spent months forcing myself to accept the fact that I was ill enough to be referred, that my lung function was low and my quality of life defined by them as "poor".
Then to be told I wasn't quite ill enough...was a smack in the face to say the least. Predominantly because you still feel as you did when told you needed to be assessed!
So yes, excellent blog. And a very large hug. xx
ps - gorgeous prettifying! x
I felt exactly this way late last year, I am glad you have posted about this, its hard because you feel you have to carry on in a state of struggle whilst knowing that you still have a huge challenge ahead of you at some point, it leaves you in limbo.
I have chosen to look at it that a trnasplant needs to be 'just in time' and it just isn't my time right now. All I will say is keep a very close eye on things and don't feel akward about continually asking and keeping your name in the frame.
big hug xx
also i think your blog is rather gorgeous...how did you get such a nice background
Thanks for the supportive comments girlies.
Jen, the blog backgrounds are available if you click the link in the top left hand corner of my blog page. You'll be spoilt for choice!
x
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