Today is a beautiful sunny day,

Best Wishes


Today is a beautiful sunny day, Richie says its warm in the sun, but the wind is cold, there is quite a stiff wind today.

The plants on the window ledge by my bedroom window are blowing around like crazy, Richie has assured me that they are ok, apparently it is as windy as out the back where they were previously.

Like them being here as there are some very pretty strawberry flowers amongst the other flowers.

It is nice to eat a sweet little strawberry everyday, they have a lot of flavour and are very satisfying.

Had quite a rude awakening this morning, when everything seemed to happen outside at once, somehow I managed to get back off to sleep again which was brilliant.

Mathilda, my friendly physiotherapist will be here in 15 minutes to put me through 30 minutes of arm exercises.

At 3 pm Anne will be round with a bottle of proseccio, and Darren will come by too, looking forward to hearing how they both are doing.

Just saw Anne’s holiday photos, from her trip to Thailand, that her father treated her and her son, Ookhai to.

Looks like they had a great time.

Any moment now my friendly slave driver will be here saying no that is number 2 you have another 4 to go.

Getting nervous about Wednesday and Thursday, Wednesday is the catheter change, and Thursday the big day when I will get put in the Summit chair for the vacuum bag to register my posture.

That is the first real step happening, will be really happy when the WMO department gives the ok for the mould to be made which will be used to make the back and the seat of the electric wheelchair.

Really happy that the money Anne and Lisa raised will pay for the extras, like getting the better cushion that I need in order to protect me from further pressure sores.

Just had a very good session with Mathilda, my arms feel good now, very relaxed which is pleasant for a change.

Also had some good news from the landlord, that they are going to give a contract to the GGGD, the public health people to place anti pigeon devices around the guttering to prevent the pigeons nesting in our building.

Going to post this and await my visitors any minute now.

The sun is shining very brigthly, hope it is shining wlsewhere.

Have a good day.

Social Care

Since they opened up the Health Insurance market here, which they called liberalising the market, this has meant that a public service has been re-designated as a profit making enterprise and the franchiches were up for grabs.

The health insurance has gone up considerably in price and has been cut back even more considerably.

Up to 2005 the basic cost per month was aprox. 30 guilders, for which you got good care, also regular dental checks by the dentist.

And then they turned public companies into private companies and opened up the market and health became a commodity and now we pay 250 Euros each per month and get less than we did previously.

Plus everyone has to pay 150 up front at the beginning of the year.

It is also very frustrating here, a new law the WMO came into force in 2007, up to then local council carried out the governments guidelines which was organised and administrated centrally from The Hague.

Now the new law which administers the provisions for the sick and handicapped is administered locally and has variations depending on location.

Each city and town has the right to specify what they will provide; in Haarlem it is easy to get a hand bike attachment for the wheelchair, but not in Amsterdam.

I applied for one in 2007, on the advice of the ergo therapist by the RCA, after several months where it seemed the outcome would be good; I finally got word that I had lost.

But had I really lost as instead of a nothing I was a going to get the Speedy, the electric scooter as soon as I handed in my scooter.

This was great news as I could not use the scooter as I could no longer walk at all b y the time I was given the scooter.

Had I been given it right away when I needed it I could have had 6 months use of it, as it was it went to the RCA with me when I became an in patient and the scooter sat in the hall and was only used once when I had a test drive in the park.

The WMO is a frustrating law, while the law states what you have a right to mobility aids, what you actually get is a different thing altogether, as it is up to the individual councils.

Sadly it is run on a cost cutting model, so they do not look for the best for you and your situation, instead they will look for something that gives the minimum and is cheap.

This is not a good way to run a support service, it results in strange rules, and for example I had some facts to back up my appeal against the hand bike decision.

I pointed out to them the health benefits of being able to effienctly move yourself around in the wheelchair with a manual hand bike attachment.

I was informed that medical reasons were not grounds for appeal, that they looked at it purely on administrative reasons and I had none so my appeal was dismissed.

At the RCA I also noticed that week after week people were being given the same type of wheelchair, seems one size fitted all.

Obviously they had bought in bulk and were giving them to everyone who needed a wheelchair, even
Though they were big, clumsy and heavy.

Spoke to two people, she unhappy in a chair too heavy for her to move independently in; he with heart problems and asthma had to push her, he had to sit every few meters, which is not possible everywhere in Amsterdam.

Or there would be huge delays getting replacement bits for a wheelchair, met one man at the RCA, who needed new wheel guards so he did not get splattered every time it rained, he had been waiting for a year.

He had many appointments with an advisor from Welzorg and each time the wheel guard was not ok, it would generally not be the right size, eventually a year later he was the proud recipient of a set of cheap plastic wheel guards that kept him dry.

In Amsterdam it is difficult to get about in a wheelchair, the accessibility law means all premises open to the public like shops and cafes and restaurants are accessible.

Here you can still see new premises that have big thresholds and so no way you can get inside without a lot of effort and assistance.

The City Council should refuse shops and other business their operating licence until their premises are accessible to all.

The City Council bought new trams; they spent millions, just before the new law on accessibility came in here in Europe.

The trams do not facilitate smooth access, instead the conductor has to bring out a two small metal ramps and try to get it set up so the prospective wheelchair passenger can roll on.

Sadly the tram stops do not provide enough room for this manoeuvre and tram conductors were endangering their health trying to lift people sideways onto the ramp.

That means that trams are not accessible and if you do manage to get in there is a small space which you share with bicycles and prams.

The Government has done similar with he trains, buying trains that are inaccessible without the assistance of the train conductor.

You have to phone and book in advance inclusive of your return journey and station you will arrive and leave from.

The trains should be accessible now but somehow they have managed to wriggle out of conforming to the law, until they can buy new rolling stock, think aprox. in 2020.

I have noticed that there are alot of incompetent people out there masquerading as people who care and they are frittering away money that was earmarked for mobility aids and adapted housing.

Shame that the people that are good and do put your interests first are not those involved in advising the Council as to what you need.

They are using their skills to help and support people who are vulnerable because of sickness and progressive diseases.

They are the jewels you meet as you progress through the labyrinth that is Social Care.

Jeannette's house in New Zealand.




Gareth's garden in Wales.





Jaya's balcony in Edmonton,Canada.


Woke up early too early almost managed to drift off again but just at the moment that I was drifting off, the lorry that empties the bottle bank arrived and started to heave the container out in order to tip the contents into the lorry.

Lifting goes on for what seems like forever followed by a huge crash as all the bottles crash down into the lorry.

Got Richie to close the window halfway through hoping the combination of less sound and additional warmth would result in resuming sleep.

Should have asked for a bag of THC as shortly after the window was closed felt all the pain once more.

Sadly could not get back to sleep that just did not happen as my pain levels shot up as I became only too aware of the feeling of being burned all over.

Plus a horrible fizzing tingle which is really nasty, best described as some sort of electric shocks.

It is bloody frustrating getting these sensations and not being able to do anything about it, can’t even shift on to my side or in any way alter my position.

Really upsetting that I am at that moment made so very aware of how much I depend on Richie for everything.

Felt quite marooned here in bed in a body that can not do anything that I want it to do, it is strange.

Remember watching a Charlie Chaplin film where a young woman can’t walk anymore and her despair at being so dependant.

Remember that I was very taken with her situation and for the first time became very conscious of what that might be like so really empathised with her situation.

Then years later not only can I understand, but I am in a worse situation where I can scratch my nose if I want just best not to as when I touch myself it results in red blodges and sometimes bruises.

Not really what I want to do especially as I have enough aches and pains without creating more.

May have accepted much about the way this shitty disease has affected me and therefore my life but can not totally accept it.

Have problems seeing the effect the MS has had on me, I am literally half the woman I was in weight and size.

I was relatively fit before the diagnosis which may have helped me to keep walking abit longer.

Now of course realise others knew and could see that I would not be walking for too much longer.

It had been weird that after making such good progress initially after breaking the cartilage in my right knee that I started to regress.

This was noticeable on my birthday on St Patrick’s Day 2006 when it took me about 45 minutes to do a short walk to a wonderful baker for some cake.

The shop was at most 8 minutes from our apartment noticed that apart from making strange movements with my right leg suddenly my balance was very bad.

After that it got progressively worse and in April was shocked to bits that I could not get to the Paradiso for a punk gig.

Tried to walk there but only managed to get up the road and round the corner when that was it, the batteries were running on empty and there was nothing left, we had to abandon the project and I dragged myself home with Richie’s help.

I kept working until a few weeks after seeing the neurologist and having the MRI on 23 June 2006, when one Monday in early July I could not get further than the top of the road when I collapsed and sort of crumpled up on the street.

A helpful neighbour helped me up and got me back to my front door and I dragged myself up the stairs and rang my work to tell them that I could not get in.

Then came the diagnosis on July 18 2006 where I managed if incredibly slowly to walk to the hospital on the Prinsengracht using the Nordic sticks.

After that my walking became more erratic and my range became smaller until in November 2007 on arrival at the Rehabilitation Centre Amsterdam I was immediately given a wheelchair.

Probably wrong of me, but wish they had given me a walking aid so that I could have walked for as long as I could, and then use a wheelchair.

As soon as I had the use of the chair after just three days my steps became extremely wobbly and on my first weekend visit home I had to use the wheelchair indoors.

Felt like I was giving up, but nothing of course could have been further from the truth as I threw myself head over heels in to trying to get the correct equipment for myself

Very difficult finding your way through the maze of funding and regulations wonder if anyone is totally successful.

Certainly does not happen without quite a fair bit of stress, which won’t happen this time as I am more aware how to tackle things.

Know now that I have to tweak my responses, so I am not too assertive as that will result in nothing happening, as the professionals like to make the decisions.

So must never ask for anything directly, have to put if forward for their opinion, ask what their advice is and then maybe it will get considered.

That is how I got the Carendo shower chair which is a great aid for both me as well as Richie.

http://www.arjo.com/uk/


It’s strange that everywhere else you are encouraged and have to be assertive except when you have a handicap then you become the deserving cripple who needs to leave decisions to those that can…… walk!

That really became apparent when dealing with the local government workers who administer the WMO which is the law which regulates what each local council has to provide people who become handicapped.

Try telling someone like me that now you are handicapped you have to become invisible well it has not worked and it will never work.

I can’t walk down the road and physically claim my space anymore but I will not stop telling my story.