Friday - Busy and Exhausting Day
My carer came later this morning which was lovely to get a lie in. Then my friend who I worked with and is now training to be a health visitor came to see me. She helped with the washing and made tea etc before we could sit and chat. AJ had an inset day but was also due to be seen by the Bowel consultant today so Pete took him quite early up to the hospital.
A lot of people visited inbetween Pete and AJ leaving and returning again.
My friend was about to leave when the occupational therapist from the social services arrived to look at the staircase to see about a stair lift. She thinks our stairs are suitable but it has to go to panel to be discussed because of needing funding.
Then my friends from Surrey came to see me. He had been to a conference about anaesthesia here and my friend had come down too so she could see me. She has a chronic illness but you wouldn't know it by looking at her. You might think she looks a bit tired but apart from that you would think she was fine. We discussed how people's perceptions of an ill person was and how difficult it was to get people to understand when you were out, that you were not being lazy or difficult but when you ask to sit down, it is because we feel genuinely ill.
After asking Pete for 3 nights to make AJs bed and it not being done (he's been sleeping on a sleeping bag), my friend's husband did it for me so thank you very much. AJ and I both appreciated it.
Just as they were about to leave, the occupational therapist and assistant arrived with the electronic bathseat. It is an extremely interestingly affair. The motor has to be recharged and obviously that part stays out the bathroom as water and electricity don't mix. The bath seat sits on giant suckers and the sides of the chair fold in and out. You have to sit on it and swing your legs round and then push the button to go up or down into the bath. Will have to give it a try out if the bathroom gets warm enough.
They just about left when Debbie came with the ironing and then Pete and AJ came home.
apparently, they saw a different consultant this time and AJ was much more relaxed and could talk about his problems more openly so hopefully in January, he can be seen by the team at the Behavioural unit and he can get some help.
I had planned to go into town in the afternoon but I was exhausted by all these people so just sat and rested and did a bit towards my memory stuff.
The weekend passed without much incident. I helped all of them with their homework. AJ's seemed far too easy for him as it was fractions which he understood perfectly and must have taken him about 30 seconds to do the 10 sums. I helped the twins with their maths and history projects. It seems to me that they are not taught how to format or present their work neatly. We seemed to spend quite a bit of time sorting that out.
Near enough rained all weekend and was very cold so was in no hurry to go out once I knew that. I did some cooking with Woody and Laura and a bit of a puzzle with AJ.
On sunday, I helped with the sunday dinner again. Ican not get the timing of the yorkshire puddings and the roast potatoes right!! Baths/showers for all of the children in the evening. The problem I had all weekend was that it feels as if my spines are rubbing together and as if I've been kicked in my sacrum. I don't know if that is to do with me not having the transfusion of bone strengthener for about 8 weeks now as the onc said I didn't need it as the drug stays in your system for about 3 months or longer so think Iwill have to discuss that as well.
I really don't like being cold and seem to have been cold most of the weekend. The week's forecast looks horrible though