No trial. It has been closed and the drug withdrawn due to the side effect it was causing. More disappointment.
I had a fall when Andy was out today. I fell whilst going to the toilet and really scared myself. I thought that I was going to die. I fell down the side of the toilet and got stuck with my forearm over my face. I couldn’t breathe and I was suffocating. I was there for about an hour, calling out and shouting. I was so stuck that I couldn’t move, couldn’t breathe. I prayed to God for help and felt that he was with me. I prayed not to die; I’m not ready yet. I moved a little and then I had an air pocket and could get some air. After this I have made the decision not to try to walk anymore. It’s too risky. I was finding it so stressful with the walking trolley, now that I’m so dizzy all the time when I stand up. In a way it was quite a relief to stop trying and give in.
The kids are back at school and we have a new dog! He’s a bit of a rescue from another family member who has just had a baby. He has made such a difference to our family and brought fun into the house for the kids. They laugh a lot and play with him in the garden. It’s so good to hear. He’s a Rhodesian ridgeback called Cofi. Matthew is a lot happier at school. They say it’s like having a new boy in class! We have told both the kids about MND now and I think that has made a difference. It takes away the anxiety of not knowing or understanding, even though it’s horrible. Emma is doing really well and has a lead role in the school panto, and is playing in the football team. She seems really happy. Their world is full of school and friends and activities. They almost haven’t got room for my illness. To them it’s just how I am now.
I’m attending St Luke’s Hospice fortnightly now for therapies – reiki, reflexology, church service, mindfulness and lunch! I always have the chips! I’m going to have hypnotherapy soon. I don’t really like sitting around with all the ill people though. I’m not comfortable with that.