I'll start off on a positive note, the response of you lovely people to my article in the Guardian. It is so fantastic to read all of your inspiring comments, they have kept me going over the last couple of weeks. I really hope the article has made some people think and sign up to the donor register. I must thank the wonderful Caroline who wrote the piece and was fantastically caring from start to finish, she also lent me her PDF so you can view it online here and in the awareness section.
Since I last posted I haven't been feeling great nothing major just the little things that wear you down, from continuing to pain, to sicky, nauseaous days, to sleepless nights, bloating, body draining exhaustion and all the little things that add up to make things a little bit worse. My hospital visit was ok, breathing slightly worse although not worryingly so, I was given another prescription for pain relief and discussed palliative care massage which might help with pain too. I have had terrible nights with little sleep lately and although I was given sedatives they didnt help much. I am now back into a slightly better sleep pattern but been told there isn't anything else I can have for sleeping, which isn't incredibly helpful. When your not sleeping till 4am then getting through each day on very little lung function its very draining and not good to my overall health.
Anyway none of this has made me particularly cheery, and I've been having a few hard times during the last couple of weeks. I dread these times as its so difficult to drag yourself out of them. To cut a long story short today I have reached a low point. It's devastating to face the end of another year. As many of my friends battling serious health conditions will tell you, Christmas is a milestone and when you are very ill sometimes milestones aren't so good. I loved (and still do) Christmas always have done, but it makes me desperately sad not to be involved as much as I want. Believe me I am the queen of "things will be better next year", and adjusting tasks to accomodate my health but this is my 4th year not being able to be properly involved and I can't brave face it at the moment. Yesterday I managed to put 3 baubles on my tree before getting breathless and giddy. It makes me intensely angry and upset to hear promises that next year I can do the whole tree myself and everything else I long for, I have said the same thing for the past 4 years, maybe things will never be better than this. Every night lying in bed I imagine having a call for transplant, and it breaks my heart that the phone doesnt ring. I don't want another year of worry, constant struggle, and being scared out of my mind. The hardest thing to bear is that someone could change this for me, someone could literally give the chance to achieve all my dreams and wishes. Thats all I want, a chance.
I have always said I will be honest, how else can you know what life waiting is like? Today my christmas tree broke, a silly thing but it just opened the flood gates of woe. I am sad for my uncertain future, my perhaps futile hope of a better life, the fact that Christmas my favourite time of year is not as happy as it used to be, the pain, struggle and breathless exhaustion that will accompany any festive cheer, that most people will take so much for granted without realising how much I would give to spend a day in their shoes and having to keep trying every minute of everyday for no reward. Today I spent most of the morning in an angry rage and most of the afternoon sobbing, until my eyes were puffy and I was enveloped in a cold sweat. Watching Les Mis concert DVD and allowing it to squeeze every ounce of suppressed emotion from my body and soul. Do I feel better? Not really, I just feel numb. I don't have a choice, today has been self indulgent tomorrow I must try to pick up the pieces and carry on. If you haven't signed up to the donor register please consider it, you do have a choice and you could change a life in more ways than you could ever imagine http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp