The palliative care nurse came to see Chris this morning too. She is always really helpful, though she did ask Chris if he needed a hospital bed yet at home and his answer was a definite no and I agree. He said he still needs his hot water bottle, me. This damn disease isn't taking us sharing a bed away from us yet. We love our cuddles before we go to sleep.
We also had a call from the physio and she said that the wheel chair people will be in touch within the month. That seems an awfully long time to me. I guess he will then have to wait weeks for a wheelchair to be sorted. Cornwall is very hilly and it is hard for me to push Chris around in his manual wheelchair. He will get his independence back once he has an electric one. They told us though that Chris isn't eligible for the voucher scheme to put towards a wheelchair of his choice. Not sure why. We are probably going to have to start looking for a wheel chair access vehicle too. Something else Chris isn't keen about doing.
It is quite obvious now how much weaker his legs are getting. We went over to his dad's bungalow this afternoon and he could hardly lift his feet up the step to get in the door. We are going to sort out the access before we move in.
Prior to diagnosis and for a while after, Chris used to get really bad cramps in his abdomen and the back of his thighs. They seemed to settle down for a bit, but he has started to get them again. I think he can be prescribed something for them if they get bad as they are really painful.
Sometimes I feel we are led into a sense of false security because things seem to be going along with little change and we think 'This is OK, we know where we are and how to cope.' but then something else deteriorates and we have to face up to the fact that this disease is progressive and we don't like it... not one little bit.
