Wednesday, September 02, 2009
Sunshine and clouds.
Pictures for Robert's son Stefan in Greece.
Last night just before I drifted off to sleep I shed a few tears and this morning not long after I woke up I started crying because of the pain in my legs and back and arms and the pain of my emotions.
Thought I had come to terms with this shitty disease but how can I come to terms with a disease that is visibly nibbling away at my capacity to do things and be part of the community.
Feel like I have lost so much, sometimes feel I have lost myself, but know this is not true as I am very much me still.
Even though it is difficult to accept that I have this debilitating disease but it would also take away things such as touch and sensitivity.
I can’t be touched as it feels unpleasant, instead of a light touch it feels like fiery electricity.
I can’t even touch myself as it does not give me any information, one part of my body feels like the other to me, can not distinguish one from the other.
Remember that in January 2007 I tried to masturbate and nearly flipped right out of the chair as it seemed to trigger a painful and violent spasm.
It was so scary that I never repeated the experiment again; it had not been a pleasurable experience.
Don’t know what I thought would happen, but certainly not what happened, my fingers felt like they were wrapped in Velcro and hurt me and the spasm was truly horrible.
At the end of November I came home on my first weekend leave from the RCA, the Rehabilitation Clinic Amsterdam.
On the first weekend we both wanted to make love, we started ok but then it was too painful for me, it felt like I was being rasped open with sandpaper.
I tried to relax but it did not help one little bit, I started to cry softly and Richie scooped me up and held me very tenderly.
That was the last time we made love, we were both shaken, neither of us had expected this to happen, we could both see that it was affecting my ability to walk. .
But that MS would mean it was too unpleasant and actually downright intensely painful to make love was a devasting discovery.
One which I have not come to terms with at all, in April 2007 I had to loan a hospital bed, one that goes up and down.
This meant that we no longer can sleep together as they only provide single beds, did ask if we could pay the difference but that was not possible.
Really miss sharing a bed with my darling and going to sleep next to him and waking up in his arms and sitting up and drinking cups of tea and discussing a myriad of topics.
We still drink tea and talk about many things together and we still laugh a lot together, that has not changed and neither has our love of each others company.
Even now we can be together and it be 2 pm one minute and the next it is 4 pm just like that and we never know where the time has gone.
Still feel very emotional after waking up crying like I did this morning, could not stop very easily, until I shouted that seemed to release a huge bit of tension.
Shouting out ‘’ I have been robbed’’ seemed to do the trick a my tears dried up
Been very aware just now that I need to stay focussed on the here and now, crying releases the stress and tension which is good.
Prolonged crying does not seem quite as beneficial so try to not get into that but it can be difficult.
Have to try to manage it so I get the release from crying without the grief of prolonged crying.
Today is not a pretty sunny day, not yet but can see it could happen as a cloud layer becomes thinner and the sun breaks through.
It is a unique day which I will enjoy, and especially after a shower and haircut and all the trimmings such as a foot and hand soak and when I am done 30 minutes exercise and back to bed to enjoy rest
of the day