Saturday, August 27, 2011


Yesterday was fun.

I had a speakers training course run by the wonderful charity Live life then Give life.
It was basically teaching us how to talk to people about organ donation and how to space out any talks we have to fit into time frames.

It was interesting. Not only to learn the things that were taught, but also to hear other peoples stories and even to speak to others who have had transplants.

There was a lady sitting next to me though, who had had a l liver transplant (same hospital and consultant as me) 15 years ago, she is now on the list for a second one. I guess that is kind of scary, but not as much as I feared. I think, having spent so many years feeling negative towards my liver, that perhaps this is why the thought of an organ expiring does not bother me so much.

Applying the whole expiernce to my situation now, what strikes me the most, is that, even when people were struggling or really ill, they were able to carry on. They had hope and a plan. I think that is where I am struggling now. I dont know where I stand, I dont know what the future plan is. I want to do some course, I want to travel, I want to work. But I dont know when, if ever will be a good time for this. Each month things are reviewed. Each month, I make the 3 day round trip to London. The journey adds on and makes it even harder to recover. I know its nesscary and I am not complaining, but each month, two weeks are taken up by hospital really. I need some long term plan putting in place.

This week has been hard,today has been draining.
Thursday night, my sisters car broke down and so my dad and I went to help her. That was fine, but we didnt get home till 11. It was to late for me to shower and gone midnight by the time I ran my treatments and got into bed. Again, no big problem. But the next morning, I had to shower, dry my hair, run treatments and be parked and in the hospital in town for 12:30. By the time I got there I was drained, by the time I got home, I was zombified and did not do much but stare into space.

This morning, I promised to take mum shopping, but every step felt like I was wadding through water. Every part of my body longed for sleep. I did end up napping for 3 hours in the afternoon, but waking was difficult once again.

I know I need to push myself and I dont mind doing that, but my body keeps complaining. The aches and pains are getting annoying, the difficulty in waking gets scary. To be trapped in limbo, awake, but unable to move. I find that I am pursed lip breathing more often. I sat on the floor with my niece earlier. When I stood, I got off the floor no probs, but it then took me another 5 minutes to catch my breath after it.

Things at home are difficult, this entry is long and boring enough so I wont say much, but it involves lots of crying from my mum, who, before this year, I hardly ever saw cry. It also involves lots of frustration and raised voices as well random objects being thrown across the room.

To sum it up, right now, there is a heck of a lot of frustration going on.
But, on the plus, my face has stopped hurting enough to wear my humidifier again tonight and I finish my antibiotics tomorrow.

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