Tenant's Association.

AT5 will be filming here tomorrow, our building is one of ten of the best new buildings.

We, the tenants all agree that its a lovely building, but there are certain things which infringe on our enjoyment of our tenancy as well as on our quality of life and safety.

The electric gate is always broken and hangs half open for anyone with a handicap or in a wheelchair impossible to move across.

Next to this there ia a gate to the steps you can open by putting your hand through the bars.

The open metal galley's are impossible to move across for wheelchairs and there was no thought about escape routes for people in wheelchairs, there is no fire proof 2nd lift.

The open metal gallery's stop the handicapped from socialising with their neighbours. I have lovely neighbours but can't visit nor can I go there if I need to.

The open metal steps are also a hazard for those using the steps, people catch even flat shoes in the metal grids.

Tomorrow at 11 am AT5 will be filming there is a banner outside which says:

AANGEPAST? suitable for the handicapped?
VEILIG? safety?

After waiting about a year to get a new flat I was told by the housing company that perhaps I should not have taken this flat. This was astonishing as this flat was on the Dienst Wonen ( council housing department) site for flats for wheelchair users.

And they got a big grant to help build this building plus they do not need to fit bathrooms and kitchens the council do that.

If you are in the neighbourhood at 11 am come and show your support.

We are setting up a tenant's association and hope our landlord will take us more seriously then.

First time in 2 years in the Vondelpark at night.

Cannabis does help.

This morning Iwent out with Richie and the dogs as soon as my darling had got me up.

Straight outside after a quick wash and dress it was great to be out together but I soon noticed the effect of not smoking a joint right away.

All round the block I was having non stop spasms and pain it was horrible and in total contrast to last night when we went to the Vondelpark.

Then I had a couple of spasms crossing the tram lines, this morning has convinced me that cannabis does help me.

Last night I had fun this morning it was not so pleasant but still good fun to be out together on a sunny saturday morning.

That's why we moved here so I could go places and after last night I feel my horizons have been stretched abit further. Lovely!!

It's been a quick trip from able bodied to disabled.

Been sitting here thinking about this past year and how quickly I have become disabled. Just sat here and realised it was only at the beginning of May this year that I could not drag myself up out of the wheelchair and onto the shower chair.

Bloody hell a quick year ago I could still hobble the length of the Basjoe, best coffeeshop in Amsterdam, without too much problems and now I can't move my feet even a tiny fraction.

It's been a quick trip from being mobile to not being able to move around without the wheelchair and Speedy.

Have discovered a few things like Richie and I really love each other deeply, he is brilliant (knew that before too), life is good despite restrictions and I am a very positive person.

Also found out that I am a happy person and I love people, love talking to and being with people. Don't know why but I am so surprised about all these revelations especially about myself.

Almost as if I had thought for years that I was miserable, negative grump of a woman!!

Going round the block.

Busy week

Blimey a cripple's life is a busy one!

Luckily managed to organise another home care organisation at short notice to come and take over from the Osira people.

Now I have two people looking after me and not a team of ten and that makes a big difference!

Two very nice women from Surinam, feels very down home.

Mind you not sure how it will go, think they are better but may have to organise something else soon.

Every day is mega busy lots of phone calls to faceless burocrats trying to find out where various things are.

Like my shower chair, wheelchair, electric door opener for front and balconey door?

Why did they agreed in May to making the nessesary changes here so this house is really adapted for someone in a wheelchair and then do nothing for months.

In May I thought they may have done everything by now, its nearly September and they still have not adjusted the doorstep onto the balconey so still can't get out there! at this rate it will be winter before they do anything.

Nor have they adjusted the entrances to the bathroom always just get caught halfway in the door and need help to roll in.

Lovely on the drawingboard but not to live in!!

Because the architect never thought about how it would be to live in his wonderful building.

Can just see it there he is at his pc creating this wonderful hi tech industrial look andd never gave a thought to what it would be like to live with balconeys, steps and landings made of metal grids.

Never thought about little children wanting to run and play on their balconeys and how it feels to fall on metal grids. Never thought about people catching the heels of their shoes in the grids.

Never thought about it being slippery when it rains or there is ice and snow and people falling down the steps.

The housing company (formerly council, until they were split up privatised) never thought about anything apart from profiting from subsidies when they decided to allocate four flats for the handicapped people and 5 flats as sheltered housing.

The flats for the handicapped are supposedly specially for people in wheelchairs but apart from wider doors there is nothing they have provided or us. All adaptions are done and paid for by the council.

So a big whack of subsidy for the company and all they had to do was provide the flat the council had to install bathroom/kitchen etc. Wonderful for them less so for us as it takes ages to get all the things you need.

Took 7 months for them to put 2 strips down to make it easier for me to roll into the bathroom on my one. This mamoth job took one man 5 minutes, two months before two men came round to install to extended tap handles it took them seconds, took 5 months of waiting!

Finally got one electric door opener for our front door after 6 months took two men all day, one did nothing apart from smoke and watch his colleague and worry us as we heard him ask the one installing the door opener "Ever done this before?" To which he responded "No, never, have you? "No said he. Brilliant and so confidence inspiring!

As is the fact that cos they only decided after the building was completed to allocate four flats to people in wheelchairs they did not make a fireproof lift so if there is a fire there will be no chance of a quick escape.

Mind you where would you go? Out onto the balconey and on to the metal walkway I guess in an emergency I won't mind the grids triggering off spasms!

Left sitting in the shit.

Still not got over what happened on friday, no one came round at 8 am and at 10am when someone finally came round she passed on the message that from friday i would only get one visit per day.

She then told me that I should not be so cross and stressed as that caused the spasms, as she said it was all in my mind!

She then hurriedly washed under my arms and face and neck put my top on and left without bothering to do my bottom half.

Just about managed to sit me up ok before rushing off again and having no time to see if I needed anything like food or more important water.

This left me literally sitting in the shit as I had shit myself but of course their hectic care schedule does not allow for care.

Four hours later Richie came home and rescued me and washed and dressed me in clean knickers and trousers.

Sitting in shit for four hours caused constant spasms, which meant I could do nothing for 4 hours but hold onto my chair to stop me flipping backwards.

Not my best day!

Blimey!

Well finally it happened I got my first catheter yesterday, something which has filled me with panic.

That is until I heard from someone else how easy it was and how much more freedom I would have.

Still I was scared and when the doctor and her assistant arrived I began to talk and talk and talk and had loads of questions.

Finally all questions were answered and there was nothing left to but to let the doctor do her stuff.

I had taken a pill to relax the uretha and the doctor inserted the catheter in seconds.

Strangely enough the insertion was nothing like I thought it would be all the anticipation was worse than the reality.

A few hours after getting the catheter inserted I started getting very sever spasmes which is not so nice especially as I was hoping to be more mobile.

These spasmes are worse than I have had up to now these flip me over the back of the chair in a second.

In fact I just about managed to phone my neighbour Willes in the nick of time as I was flipping over backwards.

Scary stuff, have to always make sure that there is someone around who can pull me up again.

Saturday is market day!

Had a great saturday, woke up feeling great also because I had a shower before going to bed friday night, which gave me a very relaxed nights sleep.

How lovely it will be when I get the Carendo shower chair then showering will become a pleasant, relaxing pain and exhaustion free experience again.

Can't wait but I have to wait and have been waiting since June to get one of my own. The trouble is its summer so all the burocrats are on holiday so I will have to wait until September.

We went to the market and met some friends which was real nice, funnily enough the local shop knew we were going to barbeque with the neighbours on Sunday! Its a real neighbourhood and we love it here.

Happy podcasting....

Can't believe how difficult it is to try to record my podcast for http://www.msbpodcast.com/
been trying all week either the dogs howl or the bell gets rung furiously or its the wrongly timed phone call!

Or a horrible spasm ruins it all!

Oh well who knows I may get it recorded later on.

happy thursday

had great fun today doing my podcast for

http://www.msb.podcast.com/

well i had several attempts, three times when i was nearly finished something happened which meant i had to start again.

one time just playing the last track and the dogs went mad barking at a dog on the street.

the next time i was just thinking this is going well when the phone rang and twice someone came round.

one thing is for sure i am well rehearsed and hopefully tomorrow it will go smoothly.

A very quick week

blimey already wednesday night seems to be reasonable this week been great getting physio at home.

after three times it has made me feel alot better already.

used the stand up wheelchair twice today really very exciting and also very scary too!


all my carers have arrived not all on time which stressful but at least I have not been forgotten.

a couple of things went wrong like being scratched on the backside plus knickers not put on good resulting in another little injury also on my backside. not really good care!

tomorrow is already thursday which surprises me perhaps its to do with having had a good weekend.

next weekend looks like it will be good too.

A proper weekend.

After the drinks with the neighbours on friday evening the weekend turned out really nice too. On Saturday Richie and I went off to the market, I zoomed alongside him up the pavement on the Speedy and it was great fun.

As ever talked to lots of people and of course said hello to everyone else in a wheelchair or scootmobile.

Came home laden, well Richie was , one of the things we bought were 3 kilos of mussels which we planned to cook in garlic and white wine and take up to the neighbours on the 4th floor.

Very relaxed saturday night nearly slept all through the night. Woke up late and had brunch and Richie made fresh bread and cooked the mussels. AT 16.30 we went upstairs to sit on the neighbours balconey. It was hot as hell really felt like being in Spain.

Great fun to have pleasant neighbours and lovely to take food up with us and share with our nice neighbours. Brilliant, a proper weekend.

Yesterday in total contrast to the weekend was busy, too many people in and out and heaps of telephone calls, had the back of the foot rest modified so my feet can't jerk back when I spasm and knock me back over the wheelchair.

Great to see that being in constant pain does not stop me enjoying myself.

Friday evening drink with the neighbours

Not too bad during the day today, just a couple of wobbles and one moment of panic when I thought this it I am going to fall backwards over the chair again but it did nt happen.

Apart from that I only had to ask Willis to pop down once to put my feet back on the foot support. It was 13.30 quite quickly and my darling was home which was wonderful.

The afternoon improved immensely when a good friend popped by for a cuppa and came bearing chocolats. Lovely.

After she went I popped across the road to join the neighbours from the bycle workshop at the Fijnhout theate, for a drink. Two of them were celebrating their birthdays and there was plenty to eat and drink.


A proper friday evening.

Lifestand wheelchair

was a very busy day today. lovely Karen, my ex neighbour from the Passeerdersstraat came by which was great. She was here from 11.00 to 17.00.

the physio plus the man with the lifestand wheelchair came by and left the chair for a week.

plus lovely Willes and Miriam and Wilfred were here too. It was not boring.