Thursday, June 04, 2009
Really hope that on June 10 when Ton, the nurse from the RCA is here with Doctor Stolwijk that they will have some good news for us.
Starting to get very concerned about the strange posture that my body has adopted.
Really hoping that despite this I will be able to go outside as I am getting quite fed up with spending so much time in one room.
It is abit like being locked up, luckily for me I am not in solitary confinement not with my darling Richie here with me and visits from friends.
Nevertheless this would not have happened if Arca ( advisors to Amsterdam City Council)had actually listened to me when I told them time and again that I could not sit properly in the power chair.
This is now in the past and I actually do not want to talk about it, apart from to make a point to the relevant people that their penny pinching has been very expensive for me.
I have lost 9 months of my life that I will never regain.
Additionally being confined to bed has exacerbated my condition and given me some new problems as my body has become even more sensitive because of the prolonged lying in bed.
The muscles in my back are incredibly weak and of course make it more difficult for me to sit well.
My posture can best be described as sitting like a crooked banana, my hips go one way and the top of my body the other.
With abit of a corkscrew effect round the waist, this tips me slightly to the right and my left side tries to keep the balance which results in a strained left shoulder.
All of this has given me a lot of extra pain and discomfort; really hope that this year Richie and I with the support of a good friend will do our best to get a well adjusted power chair so that I can go out.
Really want to go out and enjoy being outside feeling the air and hopefully this can happen before not too long.
Would love to enjoy the summer and see something of this lovely city, shall do my best to remain positive and optimistic.
Not easy to do but will do my best to remain optimistic although at times that is difficult to do.
Shall stay as optimistic as possible first take the baclofen and drink sufficient water and get on with the day.