Friday, February 22, 2008

Thursday, February 21, 2008

He actually asked how I had managed to end up in a wheelchair so quickly?!!

As predicted the appointment with the neurologist was a waste of time.

As usual got there before time only to find that as always the doctor's shedule was

in a mess.

Only one other couple were waiting and exactly at 13.30 when I should have been

called they were called.

The receptionist told us that the appointment would only take 15 minutes and then it

would be my turn.

Told her that was not a problem, what might be a problem was the fact that the

mobility bus would be collecting us at 14.10.

At 13.50 we were called in to see the doctor.

It started as usual with dr. Tiessens getting my notes out to brief himself once he called us in.

We always ask ourselves why he is not briefed before he sees me, but he never is

He has no ' bedside manner' and seems quite unaware how tactless he is.

He actually asked me how I had managed to end up in a wheelchair so quickly?!!

As if it were my choice!!

I then suggested he ask me again in Dutch to check that maybe it was a language

problem but it was not.

Then he mentioned that he woud pass my details to the MS nurse at the main hospital

who would be in touch with me.

This is the first time he has mentioned the existence of such a person and I

wondered why he had not organised this for me in July 2006 when he first told me the

results of the MRI's.

Instead I have been left for nearly two years with no medical support or medical

supervision, apart from my G.P (general practicitioner).

Bloody hell what a horrible experience.

And this is the doctor I should see regularly!

This is the doctor that took 5 minutes to tell me I have MS in July 2006, when he

showed me the MRI photos and said "see those white spots that mean you have MS,

don't read or research on the web wait until our next appointment" when he promised

he would tell me more.

He never told me anything and the last time that I saw him in October 2006 he gave

me a book ten years out of date and sent me to the VU to get a second opinion from

dr. Prof. Polman.

Saw dr.Prof. Polman in December 2006 he could not give his second opinion as he

wanted another set of MRI's.

These finally were done in OLVG hospital in June and July 2007.

In August, September and October I had three telephone appointments with


Each time I hoped to hear the rsults of theMRI's and his second opinion.

Each time he had not received the photos and finally in October he asked me if I

could phone the OLVG, the hospital the MRI's were taken and ask them to send them

asap to him.

Finally got the second opinion in November 2007 when dr. Polman called to tell me

that he could confirm that I had abit of MS!

The whole experience on thursday depressed me lots, I got very down and depressed

for the rest of the day.

Could not possibly see dr Tiessens again, he may be a great doctor but he can't

communicate with the patients.

I shall discuss this with my G.P next week and hopefully it will be possible for me

to see another neurologist.

Can't possibly go through with another appointment with such an unsympathetic


There is no treatment for me as I have Primary Progressive MS but surely it should

be possible for me to be seen by a doctor who can treat me properly.

Wednesday, February 20, 2008

Football and neurologist appointment.

Feeling shit tonight cos I am seeing neurologist tomorrow.

He won't be saying anything new but hate those appointments.

Too much stress and for what.

Must try to use that to keep me calm.

Difficult when my team Arsenal are playing AC. Milan.

Saturday, February 16, 2008

My Stalker

My Stalker

MS likes it anniversaries
it comes knocking on the
door every ten years.
Then it kicks the door in.

These first shy fumbling visits
you don’t know why you
are getting a visit.
Then it kicks the door in

And then you know
what the first visits
were about.
MS loves it anniversaries.

Friday, February 15, 2008

Happy Valentine's Day!

It was a very happy Valentine's Day yesterday.

We got a letter telling us that my PGB- Personal Care budget had been agreed to.

This means that I can now pay Richie to look after me so he càn give up his job.

Richie is very happy, alot of tension has been taken away with that letter.


Neil Young & Waylon Jennings 1984

Monday, February 11, 2008

Johnny Cash - Hurt

UK SUBS from 1982


That I am cheerful despite this horrible MS is thanks to my darling Richie.

I am in pain all the time now it's slowly moving up my body. Has now got to my lower back just around my waist.

Also get these horrible shooting pains in my face and jaws that come and go and to make it even better get woken up despite sleeping pills during the night with a nasty pain in my upper right arm.

Hate having to take sleeping tablets, hate all tablets but it seems the only way I can get some sleep. If I am lucky I get about 6 hours sleep and if I am even luckier I can doze off again

Am amazed that I am keeping so positive, would never have thought it possible, especially as I stopped smoking grass on 4 january.

Use a vaporizer now but apart from a floaty feeling in my head its not the same as smoking grass. Smoking helped as a painkiller, took my mind off how horrible it is and how quickly I am detriorating. Plus it relaxed me and gave me an appetite.

Of course its thanks to my darling Richie's love and support and all his help and care that I am cheerful and happy despite all this shit.

Worry alot about my darling Richie, looking after me fulltime plus working has been too much and he had a burn out at the end of November and its a slow and rocky recovery. One step forwards and two backwards.

Wish I could make my angel feel better. Wish we had the money for my darling to stop working. Wish I could make the MS go away.

All I can do is love and appreciate him, which I do.

Wednesday, February 06, 2008

Shame the building is not accessible for all.

The architect obviosly likes the industrial look and never considered what it would be like to live in it.

Monday, February 04, 2008

Sunday, February 03, 2008

Painful times

In lots of pain but despite that keeping optimistic.

Keep telling myself that its just the ms.

Sounds weird but it keeps me able to cope with it and keep my mind focussed on the important things which are Richie and our love for each other and our life together.

As well as our good friends and our neighbours and our two jack russells.

Most important our deep love and affection for each other which helps us through the horroible ms.

Twenty years next year that we met each other and I love him more every day.


Saturday, February 02, 2008

Cold saturday!!

Had a good day even ventured out to the market despite it being very cold.

Very nasty last night high winds and hail.

Looked like it was going to be an unpleasant day but it stayed dry and snow free with bursts of sunshine.

Love going to the market, the stalls, the people, the fruit and veg and the lovely smells.

And most of all the friendly people.

Very touched by how nice people are to me. We go so regular we always get greeted by heaps of people and these days Richie gets served very quickly once stallholders knew we were together.

My electric handbike attachment is popular loads of people call it my ferrari!

My body is really crappy cos of the MS and I am in constant pain but my mind is cheerful though often I do have to howl it all out. Hate not being able to do anything and being o dependent for help with everything