New Case Manager.

Tuesday I got a call telling me that an appointment was possible this Friday so that a speedy start can be made to adapt the chair.

The appointment was going to be in the afternoon, right away the disappointment was that Ludwine and Jenny, from the RCA would not be able to be present at such short notice.

Jenny will measure how the pressure is distributed and Ludwine evaluates how I sit and what my posture is like.

I immediately rang Jeanet, a friend of ours, who wants to be at all the appointments to make sure that everything goes well and everything is done correctly and with my best interests in mind.

Organised with Jeanet, that I will let her know when on Friday afternoon and she will make sure that she is here.

Wednesday early evening I got another call from Michelle about the Friday appointment, only problem was that Friday was ok but it could not be in the afternoon.

She proposed to come here at 9.30, saying that she hoped their visit would not conflict with my routine.

When I said it did conflict she said they could come by abit later, 30 minutes later, at 10 instead of 9.30.

That was the best she could offer me, so I had to accept, as I wanted the wheelchair to get adapted as quickly as possible.

Really hated that this was happening, especially when initially it seemed things could be managed so we had Jeanet’s support.

Sadly this new appointment meant that Jeanet would not be able to be here at that time, which really rattled me a lot.

Hated the fact that the new appointment would be exactly when I start to do my arm exercises and Richie does my leg exercises and massage and tablets and THC before, during and afterwards.

Wednesday night had quite a problem getting to sleep, worrying, finally got Richie to get me some THC vapour between 5.30 and 6 am.

The thought of the appointment was already getting to me, especially as these were the people who I hold responsible for my having been in bed for a year.

I hold them responsible for not making sure the chair was the right size, the seating is 10 cms too long and it is also too wide.

As soon as I got the chair I said it was too big and I did not sit comfortablly in it, their response was ‘’What would you know, you have only just got it’’

Every time I repeated it I was met with the same refusal toe deal with my complaints.

Last June I had an appointment at the RCA, the Amsterdam Rehabilitation Clinic for an evaluation of how I was sitting.

The appointment also had the goal of finding solutions to support me sitting properly.

The Zit poli, the polyclinic to assess my needs found that all my weight was concentrated on one side, this is where the huge pressure wound occurred.

They recommended that the seat be drastically altered, that the length should be made shorter and the width.

They also recommended more padding so that I could tilt the chair as well as lie down in comfort.

It was recommended that I intersperse sitting upright with tilting the chair as well as periods of lying down.

The consultant from ARCA, council advisors, Michelle was called to join us so that the team could explain what needed to be done.

The first thing that happened was nothing and I had to wait until the end of July before a start was made.

Straight away it became apparent that they would not shorten the seat, they would instead just try to alter the back rest.

This they did by screwing a wooden backrest onto the hardened plastic backrest, and then they started building a layer of foam rubber against the backrest.

During the whole process I was sitting next to them on the shower chair being put in the chair everytime they needed to check the changes.

At the end they arranged that I test the chair and Michelle would call back in a day or two to see if the alterations were suitable.

They were not suitable as they did not give me the support that I needed to have, there was another attempt to adapt the wheelchair.

This too was no good, sadly just before the third appointment Ton, the nurse from the RCA came by to check how I was doing.

He spotted that the wound was not only open but very wide and deep, he immediately said I would have to stay in bed fulltime for 2 to 3 weeks while the open wound healed.

At the time 2 to 3 weeks seemed an eternity and I was in shock after Ton had left, I started to cry and cried for a couple of hours.

Then I realised that I would be hurting both of us, Richie, as well as myself if I carried on crying too long.

Had the realisation that getting too submerged in crying could also jeopardise Richie, had a sudden intimation that too much crying could be harmful for us.

Could see that that it could kill us, it would certainly take us right down,

That was when I realised that despite being so handicapped and the pain and the frustrations of not being able to do anything for myself, I was nevertheless an important part of the team.

I also had something very precious and that is my relationship with Richie as well as our friends and the dogs and the ability to research and analyse and understand.

Really proud and pleased with myself that I got through the appointment so well today, Michelle did seem to be trying to tell me that she was taking it all seriously.

Her aim is to get the adaption done as quickly as possible; additionally she has suggested a change of Case Manager for me and a new review of my situation.

Apparently the Case Manager I have has been off sick for a long time and was just making a start to slowly return to work for a couple of hours a week.

This news was welcomed by both myself and Richie who hope that my new Case Manager will be able to give me the support that I need, that I did not obtain currently.

Think that I will take it very easy today, especially after the appointment this morning.



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