Wednesday, December 30, 2009
It Is Life But Not As We Knew It.
Compared to Monday, yesterday was so much better and today I am typing using both index fingers.
At the moment my other fingers are not catching the keys, recently I have been spelling good as godo and thanks as thankos and a few other thigns like that.
I always add a fair amount of 0 in words as well as 7 and occasionally a few 2’s, weeding out all the letters I did not mean to select is often a hell of a lot of work.
Keep telling myself not to moan so much, and then I think why shouldn’t I occasionally vent my frustrations.
This is after all quite a fucked up situation, here I am, totally handicapped, my movement restricted to my shoulders, arms and head.
I am not going to ever get better again; nothing is going to restore my body to what it was, and all that has been taken from me now.
Used to be a fit woman, loved walking, enjoyed going to the gym and dancing, especially when Desmond Dekker played at the Melkweg or the Paradiso.
All that is gone now and now I am happy I still can use my index fingers, I really am happy about that.
Terrified that my index fingers will stop functioning, so Monday was extremely worrying for me.
My index finger keeps me connected with the world and that has been very important, to be able to be in communication with so many people is wonderful it really is.
It keeps me well and truly in the here and now, gives me the chance to contribute, allows me to speak and to communicate what it is like for me.
And it allows me the chance to see what it is like for others, it is good to exchange information and support each other.
It is very difficult coming to terms with such a life changing event as a diagnosis as MS and then one of Primary Progressive too.
And still I sometimes feel slightly apologetic if I moan or cry, got reminded by a friend yesterday that I need to cry that it relieves the tension and that I do not need to feel bad about that.
Mort was right to remind me of that fact and I thank him for that.
Of course I did know that myself but sometimes I do need to be reminded not to be so hard on myself.
Staying the here and now is not easy as looking to what lies ahead comes so naturally to me, think that I learned to do that at home out of self protection.
I am going to do ym best to not jump ahead to stay in the here and now and to enjoy what the moment brings me.
Looking out of the window on a very cold and cloudy day, a lid of grey clouds has settled over the city and the snow that came down last night is till there, it is snowy and icy here today in Amsterdam,