I’m scared about my breathing. That’s what will kill me and it’s getting worse. It was okay when I was on the trial and was regularly tested. Now I don’t know. It’s only monitored when I go to Walton every four to six months when they test my forced vital capacity. It’s the not knowing that’s difficult; but then again, I don’t know if I want to know. I only want to know if it’s okay.
I am getting so frustrated that I have no stair lift. The occupational therapist says it is dangerous and won’t authorise one, but I think what is more dangerous is me falling down the stairs on a regular basis. It takes me at least half an hour to go each way on the stairs. Such a lot of time for Andy to spend helping out of his day. I can tell he is so fed up sometimes.
We have just been away for a few days to Derbyshire. It was good – a real break for the kids and Andy. We stayed in a lodge and I managed to watch the kids doing sports, which was great. I saw a lot more of them because at home Matthew especially is out all the time. Having the dog now keeps them closer.
My mobility has worsened slowly, but does seem to have plateaued a little at the moment. My speech though is worse and it is beginning to be uncomfortable to speak. It’s hard to keep coping when you know it is only going to get worse. I now have carers in the morning – two of them for an hour. They help me get dressed and showered. I was dreading it at first, but now am getting used to it. The house always seems to be full of people; it’s not our own any more. The carers aren’t allowed to lift me so Andy still has to be there to help, but it does give him a break. I have been surprised at how I have got used to it. It helps that they are such nice people.
I’m starting to plan for Christmas as I want to make it really special. I’m really proud of myself as I’ve got some presents already!