Saturday, July 04, 2009
Sitting here feeling like half a woman, it is a strange feeling for me, after my life with my parents I have always had to be in control.
MS has rather derailed everything so it amazes me that despite having no physical capabilities I am still so mentally capable.
Nothing wrong with the mind which was one of the reasons I wrote about other things and not just endlessly about the progress of my MS.
So important for me to know that despite my physical disability I can still write about the things I believe in.
And the other important thing is that I have MS but it has not got me, I am not totally defined by MS.
I am more than the MS we all are.
It really is so very difficult to come to terms with this debilitating disease and needing everything done for you.
Was very aware yesterday after my shower that Richie has to do it all as I can’t even apply cream to my body or face.
Try to accept that plucking the black hairs on my chin is a thing of the past and cleaning and filing my nails also not possible not by me.
My needing personal care was at first a very upsetting and intrusive thing; happily it is not like that with Richie.
He is so very sensitive and careful in all ways which is very good for keeping me reassured that I am safe.
Know Richie often feels that he is being very intrusive and heavy handed which could not be further from the truth.
But how can it be anything but strange to have been in bed now for close to 11 months, am aware I am constantly right now on the verge of sobbing at the horror of it all.
Horror certainly at the loss of movement, the enforced isolation at home, mainly in one room, the missed opportunities to interact with my immediate outside environment is all very upsetting.
Really miss my trips around the block with Richie and the dogs, and trips to the market, used to go at least twice a week.
For me a market is a meeting place for the people from the neighbourhood and can’t be replaced by supermarkets which are so incredibly impersonal.
Looking forward to being able to go there soon, had hoped that I would be starting to sit again in May.
But then it became in June and now it is already July, seeing as the month has only just started have to be very patient.
Am very torn on whether it will happen or not, concerned that I will have to wait until August and by the time I get out the weather might have gone from hot to cold and wet.
Getting really concerned how it all works out, sometimes totally doubt that it is going to be possible for me to go back outside ever again.
Starting to believe that a life in bed is all that I will have, if that is so have to make the best of it.
What would that be like, when all I really want is to get out and about and roll up the street in my electric wheelchair smiling and talking to neighbours on the way to the market.
Oh well for now I have a dream of getting out soon going to keep it alive.
No matter what happens have to keep hope alive always have to do that to make life bearable to keep from getting stuck in negative thoughts and feelings.
Really no point to negative thoughts they just drain out all joy and that is not good; with a handicap you need more not less joy.
Hope the weather does not go bonkers and get all our MS symptoms going mad this weekend.
Intend to put all my questions and worries to one side and concentrate on right here and right now.
That is after all what we have The Here and Now going to enjoy it now.