Control

It's the first time I've had chance to write a proper blog since becoming an ambassador, many thanks to Rachy for getting things started!

The reason for lack of writing on my part is that I've had an essay due in for Uni. I've always wanted to get a degree but wasn't well enough to go to uni when the time came. When I had to give up work due to my health I decided I needed something to replace it, I'm the sort of person who copes by being kept busy and I wanted something to fill up all my spare time. So while I wait for my transplant I am studying for a BA with the Open University. It has been a real godsend to me as my work gives me something to focus on and makes me feel like I'm working towards life after transplant. At a time when almost everything in my life is consumed by my illness, constant treatment, controlling symptoms or attending hospitals, it is the one thing that remains "for me", me working for myself, and any results I get are down to my own ability. Studying has become very important to me, even though 2 and a half years down the line waiting for lungs, it is becoming harder, with the ever increasing regiemes of treatment and times when I feel too ill to do my work.
I do find it stressful but in a weird way its nice to have something "non medical" to stress about!

Another reason I enjoy my study so much is that it is something that lies within my control. Waiting for transplant can often feel like virtually everything is outside of your control. Life has changed dramatically, how you feel bodily, the things you can no longer do at all like going certain places or being independant, constantly having to have assistance with tasks a 5 year old could manage and the fear of what will happen next. It is a very tough ride to put it mildly. I have been waiting for 2 and a half years now and I fully realise that statisiticaly I shouldnt even be here now. Things have *touch wood* remained more stable than i could have hoped for, however while outwardly things seem ok, inside I can feel them changing. As someone said to me recently " You're doing 3 times the amount of work just to stay the same". Slowly I am seeing things I used to be able to manage getting more and more difficult, I'm often exhausted and breathless from doing very little. It is very hard not to be frightened by this and worry about whats going to happen. Sometimes I feel as though I am trapped and theres nothing anyone can do to help me. The last few weeks sum that up, I have been trying to get something to help me out with how I'm feeling but realistically there isn't much that can be done right now.
Thats why my other form of control is to speak out where ever I can to get people thinking about organ donation. It is the only thing I can do to help myself and others get nearer to that life changing call. I'm so honoured to be able to work with LLTGL and the wonderful Rachy to tell our storys and get people signed up to the organ donor register.
Hopefully one day very soon I'll be rnjoying the fruits of my labour in more ways than one.