All Set to Sit Again.

Frogs and Lizards.



Slept pretty well last night, shame that I tend to wake up early and then can not get back off to sleep again.

And today was no exception, woke up when I coughed which triggered as always a big spasm.

I was now officially awake although did try to pretend I was still asleep, did not work, so lay here moaning quietly.

I was very happy when Richie got up and closed the window and put the heating on briefly to warm up the apartment.

As soon as it was warm I did my arm exercises and Richie did the leg exercises and massage.

Then a delicious fruit smoothie and later on oatcakes and Wenselydale cheese with Branston pickle and a couple of spicy pickled onions.

In between my new red winter jacket arrived, it has zips up the arms which make it easier to put on.

Also got a warm black protective bag (like a sleeping bag with zips) for my legs and up to my hips, nothing under my bottom which makes it easy to put on in the chair so no extra transfers with the hoist.

Looking forward to testing them out this Thursday when my adaptation will be fitted onto my electric wheelchair.

I am all set to go out and enjoy myself, first have to take it easy and slowly build up the length of time that I can sit.

But soon I will be out and about in my new red jacket all snug with my legs well protected.

Feels good to me.

The Rich Tapestry of Life

Trinidad Art.



It is amazing how time flies by these days; a day is over so quickly especially now it is getting dark sooner.

Can smell the delicious aroma of mince pies wafting from the oven, mince pies full of currants and raisins and mixed peel.

Feel in the mood to eat a few, they are particularly nice warm out of the oven, hope that I will be able to hold them ok.

Hope I do not smash them to pieces, which do happen as the feeling in my fingers is bad, often grip too hard.

Mathilde, my physiotherapist was here at 2pm to supervise my exercises, after 20 minutes hard work, I am happy for her to relax and rotate my arms and massage when needed.

I always notice the benefits of a session with Mathilde, and it is not just the exercises.

We get on well and she teases me mercilessly, which I enjoy, so does she, we usually have fun doing the exercises.

This Thursday there will be no physiotherapy, as it is the appointment for the important fitting of the adaptation on to my electric wheelchair.

I am excited about the idea that I can start to sit up again, am very aware that it will be extremely tiring.

Will have to build up the time that I sit bit by bit, do not want to do anything that would cause the reopening of the wound.

It so0unds very obvious that I need to be careful, but it is not obvious enough that pressure sores can happen easily.

Really need to be aware of how long I am sitting and hope that I will not be tempted to extend the times because I am too impatient.

The reason the pressure sore healed is because I did not sit up, this would have put too much pressure on my bottom.

Even the Roho cushion would not have been able to cure the open sore; once it is open you can not sit up until the sore has healed.

Last year my pressure sore first showed itself as a red patch, then it opened, but each time, about 3 x that it opened before last year August it also healed up.

Then in August last year, the pressure opened again and this time it was a deep wound, one that I did not want to see, eventually Ton, the nurse from the RCA stopped showing me the photos.

Well my new resolution is to be optimistic about sitting upright, it feels a wee bit scary but that is because it is so long ago that I could sit up properly.

The idea of sitting and going outside is overwhelming, hope that I can cope on Thursday, will try to concentrate on the important aspects.

Which is the feeling that my life will be richer if I am not physically isolated in the bedroom everyday and all day.

Here ‘s to life in all it’s variety and wonders and even the downsides are all part of what a friend once called ‘ the rich tapestry of life ‘.

A Bright Sunny Day.

Trinidad.


The clock went back last night, so we are now living in winter time, not my favourite time.

Not much that I can do about it so this year I will not bore everyone plus myself with going on about how much I hate winter daylight saving time.

In the past I would not change the time on my watch preferring to work out each time what the time really was.

Perhaps finally I am coming to terms with the idea that things that I can not change will not get my attention.

Could be good for me if I have learned this, as I do use up valuable energy on things I can do nothing to change.

Think that someone like Dorthe would have her card well marked these days, she was an example of a friend who one ends up tolerating because of a vague memory of friendship.

When I first knew her my self confidence had taken a nose dive, this did leave me open to peoples abuse

My self esteem has taken quite a bashing from the MS but I have managed to get to grips with that and really have understood that MS does not define me.

I am alright; I am still quite a woman even if my body won’t cooperate these days, it is not easy to be so handicapped.

As soon as I wake up in the mornings I am confronted with my bodies inability to move and the first spasms happen and my arms clamp shut as I yawn, and again I am aware of the pain.

I do my arm exercises, when I get my arm straightened out, which does seem to help, am sure that the exercises have helped me retain the use of my arms and hands.

Today has been a bright and sunny day, nice to look out of the window on sunshine and birds hopping about on the bird feeder.

Have to relearn to love this time of year again and I will once I am back outside and able to feel the wind and smell the outdoor scents.

Looking forward to the prospect of being liberated from my bed and tasting the delights of the outside world once again.

Me and Dorthe in Trinidad.

Surrealist Art.


Yesterdays visit and post brought back other memories of 1997.

Later on after Richie moved back in March 1997, Dort he seemed to have stopped trying to steer my life.

Thought at the time that she had finally understood that she must not meddle with other peoples lives.

Later on in the year she came to me with her plan, she wanted to visit the Caribbean, she knew that I was in touch with my cousins in Trinidad.

They wanted me to visit and I found this a very exciting idea if a little bit scary too as it was so long since 1962 when we had left.

Dort he’s suggestion was that she pay for my ticket, if she could come out with me, that way she would get her Caribbean holiday and I would see my cousins and Trinidad again.

I let her persuade me that this was a good idea, and my cousins were delighted so the tickets were booked and paid for.

Dorthe was told how important this visit was to me, by myself, Richie and other friends and she kept saying she would be on her best behaviour.

She also promised that as she had a credit card, should I need it she could pay with her card and I could pay her back when we were back in Amsterdam.

We flew out in November 1997 for three weeks and stayed with my cousin Aileen in San Fernando.

It was amazing being back in Trinidad again, sadly Dorthe did not keep her word, and she was very difficult the whole time.

Afterwards I wish I had not done my best to avoid arguing with her, but had not wanted to spoil the atmosphere.

But that I guess was already badly compromised by Dorthe herself, she never once managed to show pleasure or say thanks once.

Very strange way of behaving, most people would be doing their best to let their hosts know that they were enjoying their stay.

She never did that, my cousins and their families were puzzled by Dorthe, I told them repeatedly that Dorthe's English was not very good.

Hoped this would explain things for them.

On the day we left Aileen and her lovely daughter Susan Christine drove us to the airport and bought coffee and sandwiches and cakes.

We sat and ate and talked before we had to go through to the Departure Lounge, we said our goodbyes, me in tears.

Heard Aileen saying ' Ah I see you are enjoying yourself' she always says this when people cry, while giving you a box of tissues.

Dorthe and I went to the Departure Lounge and right away she told me several things about Susan-Christine, Aileen's daughter that I did not know.

Before I could ask how come she knew she told me with a grin that she had read her diaries.

So that is what she had been doing every afternoon when she had been having her afternoon siestas.

She had not been sleeping she had been looking through the young woman's things, I was so angry with Dorthe.

Also for telling me now, luckily we had to move from our seats in the front row of the small plane, which was needed for mail and bottles of coca cola for Tobago.

We were seated at the rear of the plane, after the first landing Dorthe returned to the front, but I stayed in the rear of the plane.

I was only too happy to have nothing to do with her until we boarded the plane home in Barbados.

That gave me a couple of hours to regain my composure after the news Dorthe had read Susan-Christine diaries.

It seemed to work and in Barbados we had to sit together in the seats reserved for us.

I had decided that when we got back to Amsterdam I would not seek Dorthe out and instead would let the friendship go.

Could not be friends with Dorthe not after she had been so rude all through the visit and never said thank you once.

My cousin Aileen and her husband Philip and their kids had given us a brilliant visit.

We had been taken all over the Island, had been to a wonderful street party, been down the Islands and to the beach, visited Port of Spain.

It was an incredible time, we had eaten out regularly in top restaurants, all paid for by my cousins.

Dorthe had also refused to pay for things like cricket books and magazines for Richie, which I had wanted to bring back for him.

It was really dreadful that each time that I asked for financial help she would quiz me as to what the money was for and then refuse.

So deciding that once we were home in Amsterdam I would let the friendship go, this made it easy to sit next to her on the flight home.

Even then right at the end when we had come through baggage check and customs and I was waiting to see Richie, she tried to sow seeds of distrust.

She told me several times that seeing as I had such bad luck with men I should not expect to see Richie, as he was surely long gone.

Then just as it seemed he was not coming, Richie and Anja appeared and I blurted out to Richie ' oh wasn't sure you would be here' and Dorthe left right away for her train.

So well had she got to me just before Richie and Anja had arrived.

I burst into tears and Richie who had realised that Dorthe had got to me gave me
a bunch of flowers and said welcome home.

As it turned out I did not have to do anything, as the book saga finally terminated our friendship.

Dorthe promised me a C.L.R James book she had bought in Trinidad and did not want to read, she started to promise the book in February but 3 times she came round she forgot the book.

She promised I would get the book at my Birthday drink down at Cafe SAS on the Marnixstraat.

Again she forgot and eventually on Good Friday 1998 she phoned to say she was working in the bookshop and could I come down and fetch the book.

I went and we had coffee and she passed me the book and I started to remove the book markers.

She queried this and when I said that I was removing the markers now the book was mine she laughed and said ´give you the book, don’t be silly I am only lending it to you.

I nearly swore at her but decided not to and to leave quietly, which I did saying I am going before I let myself go.

This seemed to trigger an attack of rage in Dorthe; she started screaming abuse at me.

The customers in the shop looked on startled as she followed me through the shop screaming obscenities while I said nothing at all.

I cycled home very quickly and told Richie what had happened and said I wanted to phone and scream abuse at Dorthe but would not do this.

A week later just when I nearly called her I got a letter which started off by saying ´´Who do you think you are´´.

Got Riche to read the rest and he did and said it got worse and I decided to throw it away and never got in touch again.

A year later I got a call from someone whose voice I did not recognise, the voice told me that Matauk´s Trinidadian pepper sauce was available on the Albert Cuyp market.

When I asked who it was I heard it was Dorthe and when I asked why she was phoning me now.

She told me it was because she had decided to forgive me, when I said nothing she asked me why I said nothing.

I responded that I had nothing to say, and if I did I knew where to find her and became silent again and after a few minutes of silence Dorthe hung up and we have never spoken again.

This was in 1999 and I have never missed her once in all that time.

Great Visit From a Good Friend Today.

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

Grayson Perry.


Last night neither of us got of to sleep easily as we were both too tired, weird would have thought that being tired would make sleep inevitable.

It was eventually, but it took us both hours, I finally drifted off between 4 and 5 this morning and Richie after 5.

We did catch up on a little sleep by sleeping until midday, it was 13.30 by the time Richie had done my leg exercises and massage and I had done my 30 minutes of arm exercises.

An hour later, a good friend Anja came to visit, she brought us bagels and humus, sadly my directions were not too good so she went in the wrong bagel shop, Bagels and Beans who do not make real bagels, they make bagel shaped bread rolls.

Real bagels are chewy, these were very nice light bread rolls, but it did not matter, it was so pleasant to have a visit from such a good friend as Anja.

Realised today that we know each other quite awhile now, first saw her in 1983 and got to know her the year after.

Something really good about getting a visit from someone who knows you so well, like Anja knows me.

Remember how in 1997 when I told her and another friend that Richie was moving back to Amsterdam to be with me, their reactions were so very different.

Anja's reaction confirmed again that she was a real friend, whereas the other woman, Dorthe showed she was not a real friend by shouting out 'That is a bad plan'.

Anja on the other hand said 'If that makes you happy then I am all in favour'.

Think poor Dorthe was quite confused by my reaction, she had not expected me to disagree with her, so when I told her that her opinion had not been asked for, and she was stunned.

Poor thing, funny how you can sometimes suddenly see who really is a friend and who not.

Anja showed by her comment that she was in favour of what made me happy and Dorthe, that
she obviously did not care about my happiness.

It was sad to have this confirmed but that is life isn’t, sometimes you get disappointed but there is usually a silver lining my silver lining in 1997 was Richie moving back to Amsterdam.

I came back in the summer of 1996 to work on my final dissertation and stayed on after I finished my Masters degree in Criminology.

My silver lining is still with me now and I am happy each day that Richie is here in my life.

April 1989 will always be my favourite month, that is when we met for the first time, amazingly that is twenty years ago now.

Quite incredible that it’s 20 years already, does not seem like it at all, but then the saying is ‘Time flies by when you are having fun’.

And I really do have fun with Richie, even now time flies when we are together and we can always see the funny side of things.

Life with Richie is good, despite the MS we still have good times together, and long may it go on.




http://www.guardian.co.uk/artanddesign/2003/nov/21/art.turnerprize2003