Enjoy Every Moment.

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Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

The weather today is nice, blue skies, sunshine all day which is lovely for me to see, I like looking out of the window on days like this one.

It's been a very relaxing day, we are both taking it as easy as we can, having said that Richie still had plenty to do.

Showering me is not as easy as it used to be, as my hands are not functioning well.

Up to recently I could hold on to the armrest on the shower chair to give me support, I can't do that anymore, this makes me feel like I'm not sitting securely.

Which is not true, as I am sitting securely but it doesn't feel like that to me, to me it feels like I'm wobbling about and I could fall out of the shower chair.

Richie has to constantly adjust my sitting position, which must make showering me like wrestling for him as well as for me too.

This afternoon was another difficult session in the shower; up to recently I was able to cooperate with Richie dressing me.

Now all that my hands not functioning well and I can' lift my arms and place them around Richie's neck, in order for my bra top and top to be put on me.

I can just about get my left arm up around Richie’s neck but I can't move my right arm anymore.

So now Richie has to get my arm up that I can try to hold on while he pulls me forward, this afternoon is was very difficult, it was a relief when it was over.

As soon as it is over I can forget about it until the next time, I'm not even going to bother worrying myself with questions how we will cope when my disability gets worse.

I've learned not trying to second-guess the future, it is a pointless exercise and a total waste of my time which I prefer to use to enjoy every moment I have.

Keepng Me Doing Well.

Josef Sima.
http://en.wikipedia.org/wiki/Josef_%C5%A0%C3%ADma

Waking up this morning was pleasant, then my body stiffened up, trying to relax only got it cramped up, very painful and my arms couldn’t move.

It took ages before my left arm begin to move, then luckily it moved, slowly but it was movement, I was happy.

Once that worked I tried to move my right arm, it wouldn’t move, so I had to ask Richie’s help to move my arm above my duvet, it wasn’t easy as my arm was very stiff and wooden.

Richie had to massage it for sometime before he could lift it up to the handle, by holding my elbow to stop my arm from cramping up.

This worked, what didn’t work was me holding onto the handle again on my own, apart from once I needed Richie’s help each time I started a new set of exercises.

Not something I like, but as long as I can do it, even with help I am happy that I still can do my arm exercises, today I needed more help,

Tomorrow could well be different, I might even be able to do more, it happens often, if it happened tomorrow I will be happy.

 If it doesn’t and I need help, I will still be happy, if I can do my arm exercises, help is not the ideal situation, but if it means doing the exercises, then that’s good.

Keeping my arms being active for as long as possible, that is my intention, keeping my arms functioning will keep me doing well too.

Small Achievements.

One Way Ticket To Hell.
Mark Wilkinson.
http://en.wikipedia.org/wiki/Mark_Wilkinson
 

I was aware of my mortality, but lying in bed this morning; I am becoming even more aware of the finite nature of my life.

Not surprising as my arms are getting weaker, my right shoulder is stiff, as well as at times extremely painful.

I can’t start my arm exercises now without Richie’s help, some days he just needs to lift my arm by my elbow.

Other days, like today Richie had to massage my arms and shoulders for about 10 minutes before he could successfully lift my arm, and I could grasp the handle above my bed.

Each time I begun a new set of exercises I had to get Richie’s assistance to carry on, he also needed to stretch my arms during one exercise

I already need help to eat, I can’t use cutlery, now I can’t hold my cup except briefly first thing in the morning.

These days I can just pull the top of my shoulders off my bed, I can also move my midriff, as well as my waist a little.

Small achievements but big to me especially right now when it feels like I am starting to lose all the functions that I still have.

It is scary feeling that things are slipping away from me, I hate it.

                             

Just Not So Soon.

 

Dark Fire 1980
Oil on canvas
©National Trust/Ithell Colquhoun bequest
Courtesy of Royal Cornwall Museum

Ithell Colquhoun
http://en.wikipedia.org/wiki/Ithell_Colquhoun

When I woke, I was not sure that I would be able to move my arms, for a minute it felt like no movement was possible.

I had to face the facts and accept that my arm movement may stop and scarily this seems to be starting to happen now. 

I was relieved when I managed to get my left arm clear, then I could slowly get the right arm out from under the sheet.

Doing this took minutes; luckily I managed to move both arms without my arms or body totally tensing up.

Difficult to describe what happens when my body tenses up and becomes cramped up, it’s very painful; it takes awhile before my body relaxes again.

I am trying to take these developments calmly, this is not easy, I am finding it very difficult.

Not surprising as being able to move and use my arms is something that like everyone, I took for granted.

I am realising now that this function will stop working, horrible to know that this will happen soon and become my new reality.

I am scared about this, I have been aware for awhile that my arm function would get worse, then stop totally, just not so soon.