It Really Is Here And Now For Me.

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

Yesterday I said I would put this whole situation with the support cushions out of my head until next week.

I wish I could, but I can’t because I can no longer sit with the improvised support structure Richie has constructed around me.

This has worked very well but this last week it has become impossible, for me to sit upright for more than a few minutes.

Richie has adjusted me many times already but within a minute I am hanging to the left, this hurts me alot, it particularly hurts my neck.

That is because it feels like my neck has to stop me totally collapsing to the left; this puts a terrible strain on my right side.

Difficult to put it out of my mind when not having the support cushions has now become a big problem for me.

Doing anything while hanging to the left becomes pretty impossible typing is easier than eating or drinking.

It has been suggested that I contact the local newspapers or TV, sadly I  don’t think the local paper or TV would be interested.

They were not interested when we were waiting for so long for a new accessible apartment, and I was stuck indoors on the second floor without a lift.

I was only able to go out if I was carried by a couple of people from the mobility bus, twice a week I spent a few hours at the rehabilitation clinic.

From June 2006 until we moved in May 2007 I was spending most of my time indoors, by the time we got a place with a lift I could not go out alone anymore.

Waiting has become a central theme of my life, I have to wait for everything and I do not have the time, not with a progressive disease.

It really is here and now for me.

Brilliant Gig Last Night At Paradiso.

 




Druids Bringing In The Mistletoe.

Edward Atkinson Hornel.

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

We had a brilliant time at The Drive By Truckers gig in Paradiso last night, was so good to be there again.

http://en.wikipedia.org/wiki/Paradiso_%28Amsterdam%29

Enjoyed the drive there in the mobility bus tremendously, was good to drive down streets that I had not seen for two years, since I have been in bed.

Realised once again what a lovely city Amsterdam is, all the lights were on and in the centre the trees were illuminated which is very pretty to see at this time of year..

It has been five years since we went to a concert, so was excellent to be there last night, really enjoyed myself and so did Richie.

It went by so quickly, they played a nice long set from 20.30 to 22.15, then they went away for a few minutes and were back to do an encore at 22.20.

Sadly we had to go then, as the mobility bus had arrived and was waiting for us outside, shame as Richie thought they would play a favourite track.

After managing to get out of the tricky doors, helped by two nice men holding them open we managed the tight and scary turn at the top of the steps and the even tighter turn into the lift.

Once outside we were met by another friendly mobility bus driver who soon got us into the bus and whisked us home.  

Was pretty wonderful to be there, had a huge grin on my face the whole time even when we were back home at 22.45.

Take My Inspiration From Our Dogs.

The Temptation by Danny Sillada.


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

Yesterday I took a 2 mg diazepam 30 minutes before Richie transferred me to the wheelchair from the shower chair.

After organising my posture and making the necessary adjustments, Richie sprayed me with perfume and put in my choice of earrings.

Then I tried to hold the joystick and turn the wheelchair around and leave the room, and it worked.

Was a most glorious feeling to feel myself steering the wheelchair with no problems into the front room.

Happy days indeed, felt very good about that, very good indeed, so today will try without the diazepam and see what that is like.

If it is too difficult then I may have to take 2 mg of diazepam to facilitate my steering, certainly will take it this Thursday, for the hospital appointment, when I have to get into the lift and down to the mobility bus and into the bus.

Also on the 17 th to the Drive by Truckers gig, I sent them a mail telling them I would be at their concert and my worries that being in a wheelchair I might not see them well.

Got a lovely response from Jenn, the bass player, who gave me the name of their tour manager and sound man, for in case we needed assistance at the gig to see them properly.

Really nice of her to respond am very much looking forward to the gig next week Wednesday, the one bus trip I am looking forward to 100%.

The one good thing that is happening, after the sadness of Richie’s father dying weekend before last.

Sadly Spike’s condition is getting worse, we hope the clinic in Utrecht can help if not we will have to make a difficult decision; just thinking about it has made us both cry alot today.

We can’t leave our little chum to deteriorate, especially if there is no prospect of a recovery and only of him getting worse and being in pain.

So we will have to let the vet put our little friend to sleep, that will be very difficult for us both and for Marleen too who will miss her little pack mate.

Will miss him so much, he is such a lovely little fellow, he has been such a lovely playmate, and m ‘big’ protector, our Spike.

Also the progression of my MS is not good news right now and it is a cold and grey November day too.

For now we are going to stay hopeful and optimistic and enjoy Spike’s company and face up to whatever needs facing when it actually happens.

Going to take my inspiration from our dogs and live for the moment, the here and now.

Typical procrastinating pen pushing burocracy!

 

Kathe Kollwitz.

http://en.wikipedia.org/wiki/K%C3%A4the_Kollwitzhttp://en.wikipedia.org/wiki/K%C3%A4the_Kollwitz

Yesterday was a strange day after the appointment fell through because of the mobility bus leaving without us.

Suddenly everything went flat, we were so up and ready to go to the important hospital appointment, once that was taken away so cruelly we felt deflated.

Shame that happened, especially after all of Richie’s good work, getting me up showered and dressed ready for 09.30.

I put in an immediate formal complaint and was informed right away that the driver was in the right, and we were in the wrong as we should have been ready 15 minutes before the time booked.

I was told that it was the rule to be ready 15 minutes before the booked pick up time, when I asked if I could see the rules, Rinie Isselman, from Stadsmobiel sent me the link to their website.

Went there but could not find much in the way of information and certainly no rules, e-mailed her asking where the rules were.

Rinie promised to send me the rules, my comment was that was nice of her but surely if there were rules they should be on the website for all to see, not hidden away secretly,did not get any response.

           

The amount of times I have had to wait for this bus in the past was too many to mention, been totally forgotten for hours outside in freezing weather.

But whatever they, the Stadsmobiel, are never in the wrong despite keeping people waiting for hour’s grrr!

Here is there e-mail address:

Stadsmobiel: klantenservicesmb@gvb.nl

Felt very tired and washed out yesterday afternoon and evening and noticed how badly my hands and arms were functioning well at all.

So depressing thinking about my arms and hands, hate the feeling of paralysis which is slowly creeping up my arms.

Horrible to feel this happening and so soon but not surprised that is MS, typically I am to get the Perspex table for the wheelchair next week just when I am starting to lose my hand and arm functions.

Typical procrastinating pen pushing burocracy!

Better To Stay Cool.

Landscape Near Dresden 1910

Erich Heckel.

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

Today was not the day I had been expecting, Richie got me up very early and had me showered and dressed and in the wheelchair by 09.10.

The mobility bus phoned at 09.13 that he was on his way; he arrived at 09.25 as Richie was struggling to get my fleece jacket, winter jacket and leg protector/leg bag on, we said we will be downstairs in 5 minutes..

Just as he had done it, the mobility bus drove off at 09.30 and without calling us otherwise I would have said we were just coming down.

Tried to organise another mobility bus but they could only send one at 10.30 which was the time of my appointment.

So it stopped there for today, now I have a new hospital appointment for next week Thursday at 11 am.

We have both been a touch shattered by this morning’s mobility bus drama, hopefully next week I will actually get there.

Feel very tired now and so is Richie, expect it was all the adrenaline for the appointment this morning.

One good thing was that despite the shock and disappointment of this morning I did not get angry and waste any energy on getting upset.

Much better to do what I did which was not let it get to me too much and drain my energy, it was better to keep cool.                    

Sunday 1st February 2009.

When I was diagnosed in 2006 I was so shocked felt my life had ended did not expect to wake up the day after but I did.

Then slept loads over the next few weeks and was abit of a 'hermit', also because I could not walk any distances.

The 'hermit' period was soon over and was soon researching the acessibility of the city for handicapped people.

Amsterdam is not very accessible, where the buildings are very old ok but new buildings.

Public transport in the city is dreadful and the trains only accessible if you call in advance then you get helped in and out so you can't travel just like that.

It was quite a shock to find out the reality of life for so many yet little is done to solve the problem.

In 2002 Amsterdam spent millions on new trams that are only accessible when a metal ramp is put out and this can't be done at most stops as there is no room so handicapped people can't use the tram.

Yet millions were spent on the new trams ditto the trains where they also spent millions but are not independently accessible maybe by 2020 they will be accessible who knows.

The trams and trains were bought a year or two before the European law on accessibility was passed.

Meanwhile we have to make do with booking the mobility bus which sadly means more planning and even less spontananeity, except they are always very late so all your planning goes haywire.

Well have learned to keep calm and almost can do it now, glad when we moved to a flat with a lift and did not need to book the bus and be carried down the stairs.

Only good thing about being stuck in bed is how much I appreciate what I have and my darling Richie and his love.

It's done me good enjoying what I can enjoy, there is more than I thought.

Keep warm and happy!