Another Saturday.

Jorge Damiani
b. 1931 Uruguay.
 

This morning I woke up early again, this time Richie noticed and got me some thc vapour which helped me to sleep for a few more hours.

Made all the difference for both of us as otherwise I would have ended up not being able to sleep and feeling every cramp and every spasm.

Hate that happening as it makes me moan with the pain and that of course disturbs Richie and wakes him up too often.

Really wish that I did not disturb him so much, there is however nothing that I can do apart from try to relax and stay calm and quiet, not always possible with pain.

I do try my best as I am aware that Richie needs his sleep after being busy with me all day and evening, sometimes even into the night.

Nice surprise tonight when John, a good friend of ours from Glasgow phoned, lovely to speak to him again after a year.

He used to live in Amsterdam but left here in 1996 and moved back to Scotland; think we saw him for the last time in 1999/2000.

Be very nice to see him again, he says he may come over and visit us soon, even sooner if he gets work over here.

Hope to see him, still miss him being in Amsterdam, funny really considering how many years ago it is since he left.

Guess that a good friend’s absence is always missed, there are plenty of other friends that I miss here, and most either went to new places or like John went home again.

Good to be in touch with friends, hear how they are doing and catch up with their news, nice to get John’s call tonight has cheered me up lots.

Since Thursday my catheter problems seem to have stopped for now, should be getting an appointment with the Urologist next week.

Be good to get the supra pubic catheter done as soon as possible so that I will be able to go to the Drive by Truckers concert on the 17 November without worry.

Looking forward to not worrying about my catheter anymore soon, in fact hope very soon now.

  

Enjoy this beautiful day.

Just realised that I seem to have tinnitus, you know where you hear constant noise in your ears, it is not a deafening noise, it is a strange soundless ringing noise.

Became aware of it on Friday night, before that I have never noticed, so Friday it was strange that when the music stopped I was still getting the sensation of sound in my ears.

Took me a few minutes before I realised that what I was hearing was in my ears not sound coming from outside going into my ears.

Think if this had happened before getting the MS diagnosis I would have been devasted, I am really upset, but not devasted somehow it does not surprise me.

MS seems to affect every part of the body so why not the ears too, I deal with it like I do the pain, the sensations of burning, tingling, electric shocks, pins/knives, the spasms and the cramps by keep reminding myself this is the MS.

These are the nerves sending out mixed signals, the signals are all confused and malformed.

It does not make it go away, if only it could, but it does make it more bearable to think this when I have a violent pain travelling around my body and it does not have the power to affect my mind as well as my body.

If I thought that what I was experiencing was real I would be very upset and worried, now when it happens I know it is what this disease does.

This extremely shitty disease that takes so much away: mobility, being able to work, being able to do things with your hands.

It changes the shape of the body and the sensitivity, skin becomes super sensitive and impossible to touch.

The whole body is too sensitive to touch and at that same time has no sensitivity whatsoever, hands do not transmit any information.

Everything feels like sandpaper on the skin even the softest of touches or towels would still feel unbearably harsh.

Hands constantly drop things; hands can’t hold glasses anymore and can just manage to hold a light plastic beaker with handle with both hands.

Try not to spend any time speculating what new horrors lie in store for me, luckily I can not know what it will be until it happens.

I do find myself hoping that I can carry on communicating for as long as possible, if possible right to the end of my life.

Hate to be alive and not able to communicate at all, no words and no text and no sound and no vision.

Would not be able to do anything anymore.

I am crying now, tears pouring down my face, feels like tears that needed to be cried.

Obviously I needed to get rid of some pressure that had buildi up since Wednesday, when I knew about the Friday meeting.

Hope Richie and the dogs get back from the park soon, so I can ask Richie to clean my glasses which are difficult to see out of.

It is another lovely sunny and very warm day, now I have cried I feel so much better and can and will enjoy this beautiful day.