All I want for Christmas...

It has been such a long time since I last posted that I had to check the blog to find out when it was. A lot has happened in that period, all of it ripe for blogging, yet I have not quite managed to write anything down...at times it has been enough just to live it without having to reflect upon it, and oh how my therapist loves it when I do that. I will save you from the endless and exquisitely dull back-and-forth that has characterised my Dad's work-up for transplant so far, but currently the situation is thus: he is healthy enough to proceed with further tests to determine whether he can donate, but at this stage it remains unclear whether he will be able to donate to me. A second, and potentially more beneficial option, advocated by my Consultant, is to enter into the Paired Scheme: Dad would donate to a stranger in lieu of another stranger donating to me. Upside? I would get a better match than I might do from Dad, and it would still be a highly prized "live" donation. Flip side? The hospital only screen the pool for positive matches once every three months, and seeing as it does nothing to negate my tricky cross-match requirements, it would certainly involve yet more waiting. There was once a time when every third sentence of mine began with, "When I have a transplant..." but those days are long gone: transplant, you are dead to me. Now, the holy grail for which I quest is home dialysis and the prospect grows more appealing with every phlegm-hocking, geriatric-shrieking, blood-spurting session I attend at the hospital. It was described to me as, "the closest you can get to not being a dialysis patient - if you are a dialysis patient" which sounds pretty good to me right about now, as I am feeling very dialysis patient-y indeed. The best outcome would be that I begin home dialysis whilst waiting for a kidney in the paired scheme, but the hospital have been reluctant to let me start whilst Dad is in work-up so we shall have to wait and see whether this is feasible. Starting home dialysis also means buying and moving into a new flat - not impossible, but an added complication and one that will eat up yet more time. Sharing my bedroom with a dialysis machine might not be quite what I had envisaged for myself at 26, but the reality is that this is the bestest, most amzingest thing that could EVER happen to me right now, bar Dermot O'Leary appearing on my doorstep bearing a Decree Nisi. This is how pathetic / desperate / bizarre things have become.

 I was also diagnosed with anorexia. There - for all of you who have noted with concern my inability to say the word, I have at least written it down. I look horrendous and my sense of identity has been completely obliterated. I do believe that in the last couple of months things have improved and I am currently trying to put weight on after I somehow managed to lose another kilo, but this condition is sly and difficult to shake. The problem is that my weight is so inextricably bound with my condition and my treatment that to consider one is to factor in the other, and every time I think about the hospital I feel a sense of dread which then translates into my relationship with food. Ingesting food and drink has such uncomfortable physical ramifications that have grown ever more fearful of consuming anything at all. Home dialysis will relieve me of fluid and dietary restrictions; nutrition will no longer be a source of pain and I am certain I will re-discover the joy inherent to eating.

The only thing about which I am certain is that 2013 has to be the year in which things change and improve. There is no negotiation about this; continuing on in this fashion is simply untenable. I have so, so many plans, from foods that I yearn to eat to jobs I want to undertake when my time and energy aren't sapped by an arduous dialysis regime. I feel like a firework, primed and begging to be lit, so that I might soar and unleash the potential that has been pent up inside me for five long years. I doubt I can convey in words my sense of anticipation and excitement at finally being able to be spontaneous, to be carefree...to just live. I would settle for being able to drink some water without having my face and hands swell uncomfortably up. I had hoped that transformation would begin at 12:01 on January 1st 2013, but I know I must be patient still. I have set my sights on my 27th birthday in June.

 Christmas is just days away now. I look forward to Christmas every year, but it evokes such sadness too and it is a physical feat to keep the nagging anxiety at bay. This year I am sustained by two thoughts: 1. This will be the last Christmas I spend like this and 2. Despite everything, I am so lucky to have a loving family, supportive friends, a roof over my head and, most importantly of all, hope that things are going to get better. Merry Christmas one and all, and may the year ahead bring as much happiness to you as I hope it might, just might, also bring to me.