Today I have a meeting with Johanneke, my occupational therapist to assess how I sit in the wheelchair.
It will be good for her to assess this; as it could be that there are some adjustments needed.
The wheelchair seat was adapted in November 2009, so I might need some additional support now.
Johanneke will also talk with me about my problems with using my laptop, right now this maybe difficult to assess.
In the mornings my fingers work ok, with problems, these are caused by not being able to control my fingers.
By the evening I can hardly do anything, my left index finger can not click on anything and using the mouse is impossible.
Because my capabilities come and go, it maybe difficult for Johanneke to judge what I need right now.
I have tried the Head Mouse, which seemed to cause problems with my neck hernia, voice recognition, not bad but does not help navigate between applications.
Now I am using the pre –emptive keyboard, which is frustrating, as it selects all the letters that I come near.
It would be brilliant if Johanneke recommends software that allows me to keep writing my blog.
This afternoon Marianne came by to visit me at 14.00, she looked lovely as usual, it is always so good to see her.
Soon she is off on holiday; she and a friend of hers are going on a group holiday to Vietnam for three weeks.
Looking forward to seeing her photos when she is back and hearing what she thinks about the country.
She left just before 15.00 when Harm, an engineer from Welzorg, the mobility aids company came by with Michelle, my mobility aids advisor to take measurements
These are for a Perspex table over the wheelchair; it took ages to measure and work out how best to place it.
Harm told me that when he had been here for the last time,on the 31 May, he had done everything he could to get my arm support organised as quickly as possible.
But he had not counted on other departments within his company messing up so badly so that the arm rest did not get sorted out until the end of July.
He wished that he could get the table made as quickly, as possible for me, but this was sadly not in his power no matter how much he would like to do so.
They were here for two and a half hours and left once Harm was happy with the measurements he had made, it was tiring but a very positive appointment.
My post yesterday was the story of my life and the situation and constrictions of the past two years in bed
It has been very difficult being in one room all day and night; lying down so much has been extremely bad for my torso muscles.
The way it happened is horrible; it is a catch 22 as I had to lie down because the wound could not take the pressure of being sat on.
I have a mattress a Nimbus 3 which constantly adjusts the pressure so I am not lying on a static bed which would also cause pressure sores.
The mattress’s noise is a very low humming noise that does not disturb me at all in fact it often helps me to sleep just by listening to it and not thinking of anything.
Not sitting was bad for my torso muscles which became inactive and no longer hold me up; the adaptation of the wheelchair seat has made a mould for my body which holds me in place.
Richie has to place me in the chair just so otherwise I need lots of adjustments; some days he gets it right first go.
Yesterday it was quite a sticky muggy day with thick clouds and no sun and all day the threat of a downpour.
It was very close and for awhile I thought it was just me but turned out that Richie was also quite wiped out.
Because it was so sticky it meant that I needed constant adjustments in the chair and in bed too, this got to me yesterday.
Richie explained that it was the weather knocking me out not my MS doing nasty things to me.
Once I realised this was all influenced by the weather I felt much better and could enjoy the day and evening sitting in the wheelchair.
Got a call from my auntie Sigrid in Canada, lovely to hear her voice so full of life in her late 80’s.
When I told her that I was out of bed and in the wheelchair she was happy and asked when I would be walking again with a cane.
She just does not want to accept the truth that I can not walk and will never do so again, she knows people with MS that walk so why can’t I ?
Been trying to explain this to her since 2007, sometimes she understands but then the next time she will hopefully ask if I am walking again.
I try to keep patient and sweet with my favourite auntie but its difficult also for her, I am her favourite niece.
She came to Trinidad in 1952 on a goods steamboat, when I was just becoming one to help my mother who had a tough post birth depression.
Auntie Sigrid became my happy mum the one who took me around and helped and encouraged me.
She so wants her favourite niece to be well, I think she is frustrated that she can not do anything to help me.
Because of this my, only option is to answer all her questions gently and carefully and let her know that I love her very much.
My favourite auntie Sigrid is a priceless treasure, she always has brought sun and fun whenever she visited.
Even now it makes my day hearing from her.
The singer Charles Haddon jumped to his death after a concert in Belguim on Friday.
