Life is getting harder, but still it's my life.

hello dear People,

hope you are well?

had a pleasant christmas with my darling Richie, I do love him so very much and he loves me.

and now he does everything for me.

he needs alot of support now, we both do and we could not do it without our friends

I am so worried for him as this is such a horrible situation to watch your partner lose mobility and become totally disabled so quickly.

a year ago I could still stand up, could wash and dress myself, put my earings in and turn pages and write and roll great joints and now I can't do any of that.

now typing is a struggle which I do with one fingernail or a knuckle and eating is a struggle, so is just sitting upright in my wheelchair.

I still laugh alot and enjoy all I can but it's hard and getting harder, feel now I need to go out as much as possible as I feel now that I won't be able to sit up for very much longer.

sounds abit dramatic but just noticing my bodies decline and being realistic., but no way am I giving up as I am still totally alive and full of it.

just sometimes it all overflows and I cry as much as I laugh.

its bloody hard especially not being able to sleep together, we miss the closeness.

I miss snuggling up to my darling. but since april I have to sleep in a hospital bed and you only get a single bed apparently cripples do not need intimacy!

bloody hell we both need it more than ever but thats how it is when you need the states help, you only get the cheapest equipment.

seems its always the cost that is important not the quality of life. shame as right now I/we could do with alot of quality of life.

seems we will have to make the best of it which we do.

well thats all I can manage tonight.

take care of yourselves.

and enjoy your life now!

thanks for your love and support.

best wishes for 2008.

love,
Herrad

I got lucky!!

Yippee next monday at 13.00 the new lift will be delivered!!!!!!

Really amazing to get a piece of equipment that works.

That means that almost seven months of pain is nearly over.

Fingers crossed!

Thanks Merelyme for your comment that my blogging was missed. I missed it too and additionally missed the supportive comments and friendship of you and the other lovely people who have taken the time to read and comment.

Been feeling very down lately guess also to do with the cold wet windy weather and the dark nights which start too early. Can't wait for the evenings to get lighter!

Meanwhile there's Christmas and New Year to enjoy. And who knows I could get lucky and get an early present and get my lift soon.

I could get lucky!!

If I get lucky the local council will say yes and I could get this lift which would end 6 months of pain with the Wendy lift/hoist from United Care that I have now.

Good times and bad times

Apologies for not writing my blog recently not easy to type anymore fingers/hands pretty bad. Have strength but no direction/coordination/sensitivity.

Reading not either easy cos of problems turning the pages. Frustrating about not being able to type as I have heaps in my mind to write.

But to tell the truth have been abit down since September. Since I have been needing and getting more help, have someone here from 10.00 to 14.00 every day and then I organise friends/volunteers to visit me from 14.00 until 16.30 until Richie is home.

These days I am rarely alone, perhaps the odd 30 minutes and once for an hour, since I hung over the chair for an hour on 18 September.

Hope this explains the lack of blogging. Need to get myself back up and writing really need to motivate myself and hope that I can.

Sadly have been using sleeping tablets again, had a few months off but since I have been feeling discomfort when I lie in bed all night I have needed to use them again.

Also need the sleeping pills cos of the hum of the motor on the mattress, which is kept full of air so that my body floats and does not sink.

Most worrying are my heels, they suddenly developed blisters, Richie did his best to keep them from bursting finally they dried and just as we thought they were healing Richie discovered the skin had been rubbed off.

Now the doctor is here to change the dressing every two days. My legs are not still at night, as violent spasms make the knees move up and down and drags my heels around. Need somehow to pack the legs in so when they move they won't bash the heels to bits. It's all very worrying,


Richie has slept very badly recently worrying about me. Bloody nuisance is we can't find the wee sheepskin I was sitting on since the move, the big one is still doing great likewise the sheepskin slippers though they had abit of wear as that was all I had to put on to go out and to sit around since the blisters as they are soft and protect my feet well.


Been looking out for a wheelchaircushion that vibrates, apparently its good against sores. Can't find anything like that here did hear they have them in the US. Wonder if anyone has heard of them?

And just to add to it all finally my cut in pay, now I only get 70% of my salary is noticeable plus next year we have what they call our own risk in health insurance which means the chronically sick have to pay the first 150 euros before the health insurance pays. Great stuff!

This last is an ordinary daily annoyance my feet are by comparison really worrying. Although there are loads of other things one big one is feeling unattractive and like a patient, feel often like a bundle in my chair and all my clothes are old and much of it is not suitable for sitting in a wheelchair.


But again all that is trivial compared to the good things. And when I look at what I have got its alot. A great partner, Richie is an absolute darling, my love, he looks after me so well. And good friends who give me alot of love and friendship and support, it means alot to me. Don't know if I can send them cards this year as I can't write much these days, will do my best as I love christmas.

Take care of yourselves and enjoy all there is to enjoy.






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Fire by Welzorg in Almere.

Big fire by Welzorg on 8 October in Almere. During the night a huge fire burned down Welzorg's central depot in Holland. Apparently there were aprox. 3500 scooters and 3000 wheelchairs burned as well as other mobility aids. The building is gutted and now they will have to work out whose mobility aids were there.

Welzorg?

From Welzorg website http://www.welzorg.nl/

“Link to Welzorg website:

Welzorg has centralised its refurbishment activities in its Central Warehouse in Almere. Yearly, more than 17.000 mobility aids are refurbished and prepared in Almere.


Introduction
Welzorg is the specialist company in mobility aids for the elderly and handicapped. Welzorg aims to increase the independence of the elderly and handicapped at home, in society and at work. To achieve this we provide services and mobility aids at a price that is convenient both from a social and a business economical perspective.”

Source Welzorg website.


Very interesting reading that and you would be forgiven in thinking that people with disabilities were well looked after. But nothing could be further from the truth, just within my own group of friends and acquaintances I know of 5 people plus myself who have been badly let down by Welzorg and not at all helped to stay mobile.

One waited for 9 months for the correct new tyres, he had numerous appointments in that time and heard a variety of excuses such as a couple of times that the wrong tire was sent from the U.S or he had brought the wrong one or it was the wrong size and a couple of times the advisor was sick or on holiday.

Another one found that after numerous meetings with the Welzorg adviser in January this year and many meetings for fittings. Finally after months of eagerly waiting for her desperately needed new wheelchair it arrived but was not the right size and therefore totally unsafe and unusable for her. Now more than nine months later she still has not got her new wheelchair and is being limited in her mobility.

Another two had constant problems with their mobility scooters problems that were never properly resolved and meant they were constantly phoning the helpdesk. Even a simple situation such as a puncture which needed mending can take several phone calls and at least a couple of failed appointments before its mended and they could leave their homes and get out.

And finally the friend who also had constant problems with his mobility scooter problems that was never properly mended and perhaps could have been resolved quicker by giving him a new scooter. They will be now, as they took his scooter for repairs in July and somehow mislaid it and did not tell him. Him they told a couple of times it was taking longer, once they even brought the wrong scooter then said isn’t yours?? After another period of silence they said Oops we can’t seem to find yours! And finally they admitted they knew it was lost for ages and they had not been honest with him.

And I have waited a year to get my wheelchair for daily use. The whole process started in October 2006 and now many appointments and fittings later I finally got my wheelchair for daily use on Thursday 25 October 2007. Hurrah, hurrah!! Sadly I still can’t use it as the Welzorg advisor did not adjust the brakes for me so I can not put the brakes on independently.

He also did not adjust the backrest so its not giving me any support. Additionally I need longer brake handles as I can’t reach these at all well but apparently this is not possible likewise its not possible to get a broad strap on the frame at calf height to stop my feet falling into the space under my chair through a bad spasm which can cause me to flip out of the wheelchair.

First tennants association meeting yesterday.

We had our first tennants association meeting yesterday. Nine people showed up and were very enthusiastic and thanked us for our iniative. One person arrived as we were leaving but we stayed long enough to brief him.

They all backed up our call for action on a variety of points such as the metal walkways and the over heavy and cumbersome security gates as well as the metal stairs.

It totally confirmed for us that joint actin is good it brings people together and forces housing companies to take action.

All in all a sucessful first meeting.

open metal walkways

Great monday.

Had a great monday, thats a nice start to the week, woke up happy after a good nights sleep.

Brilliant visit from Paula today we talked about everything, laughed and cried together the afternoon went by in a flash.

We feasted on bakkeljauw broodjes, saltfish rolls very nice with lots of peppersauce and hot peppery olives and mini doughnuts, mandarins washed down with raspberry and echinea tea and pomegranat juice lovely stuff!

Lovely visit from Paula

Had a great afternoon, Paula visited bringing fruit, baclava, chocolate buttons and 99 ice creams
which we feasted on.

A very nice visit.

How handicapped is handicapped?

Been more aware recently of being really handicapped as I am rarely on my own able to think my and develop any thoughts maybe write maybe do some podcasting but no none of those as I feel more internal and less able to share thoughts because of being too anxious at having a spasm and hanging over the chair.

What great neighbours we have.

An Iftar meal.

Last evening two of our immediate neighbours came by laden with treats from their Iftar meal, these are the communal dinners which take place after dark during Ramadan.

Wonderful pastries filed with a variety of ingredients, both savory and sweet and all on a beautiful plate heaped with dates and covered with a cloth.

We all had tea together and Richie and I ate some pastries And then they told us of their plan to pass our spare key that our upstairs neighbour has around five of them who are mostly home so that someone will come and visit when I ask otherwise they would check on me regularly from 14.00 til 17.00 till Richie is home.

Absolutely stunning neighbours, really wonderful people, we were both very touched by their their thoughtfulness and generousity. What a great community spirit we have in this block.

Wonderful world beautiful people!

Just another tuesday.

Been trying to work out how to deal with my new care routine. Difficult to write when my carer is here, she is here from 10.00 am til 14.00.

I find it particularly hard to write with someone hoovering near me it really puts me off. Mind you I also realised I was finding it even harder not to write. Really missing it and doing the podcasts.

Realize that its not just the new routine that is inhibiting my writing and the podcasts as I can easily write like crazy as soon as my carer has left at 14.00.

Problem is I often have spasms that scare the shit out of me so end up spending the time alone just concentrating on remainng sitting upright in my wheelchair. Often bending over holding on to the front of my chair for in case a nasty one flips me over the back of the chair.

Last night I decided that fear of spasms would not stop me writing and so at 15.20 I had rolled over to the pc to do just that. Meant to write til a good friend, Toos came round and then I hoped we would go out.

Sadly those plans did not happen instead I had a horrible spasm seconds after I nearly phoned Richie, as I had a funny feeling I might have one.

Didn't phone thought forget the feeling and shrugged it off and tried to get on with writing at that moment a spasm thrust my pelvis up out of the chair and before I could say or think anything I was hanging over the back of the chair.

Shit, shit shit there I was it was 15.30 my phones had fallen off my lap so I could not phone Richie and my friend Toos would not be here til 16.00.

Tried to remaiin calm easier when I have been able to phone Richie and know he is on his way. Today I kept a sort of calm broken by the odd shriek of help help help.

Toos was here 16.00 on the dot, sadly she does not have a key so she called Richie and left an urgent message on his voicemail.

Soon as he heard he called the house phone and left a message telling me he was on his way! What a relief to hear his voice and to know that he would be here within 15 mins.

By the time he got here there was a group of neighbours plus the police all milling around outside our door.

All in all I hung over the w/chair for 1 hour during which time I vomitted due to the horrible way I hang over the wheelchair. Getting skilled at vomitting in such a way as not to inhale the vomit and choke to death.

Finally my ordeal was over and my darling picked me up and got me sitting up again and Toos washed my face and got me some water to drink.

Now 2 hours later I am still in shock cos it was such an intense spasm as well as how scary it was to not be able to phone for help.

Really worried me not being able to phone so glad that Toos and I had a date to go out for coffee as Richie was not due back until 17.00.

New wheelchair for 30 minutes.

Last friday finally the wheelchair I have been waiting for since february arrived my happiness was short lived as soon as I sat in the chair.

The seating is adjusted so you sit slumped back with legs stuck out in front at a strange angle, bad for me as it causes spasms.

The wheels are too far back which makes moving round in the chair impossible plus its a heavy chair.

So all in all useless, but I did tell my case manager and the advisor in february that it was not the chair for me but they would not listen.

According to my advisor it was a great chair and she thought it was very comfortable. I told her to order it for herself and get me a chair I could sit in without pain.

My five seconds of tv stardom did not happen.

Well in the end I was not on the tv last week friday. And I learned something too, never agree to something when you have not made the appointment yourself.

I thought the appointment was that the tv. crew come to my door, I roll out and tell them what the resident's think of the building and the various things that are not working well.

Like the security gate being constantly broken and hanging half open, the lift not working and worse of all the metal stairs where people catch their heels.

And last but not least the open metal walkways which people in wheelchairs can not go over.

So there I was all ready with my script and finally the bell goes and instead of them being by my door they were by the front door.

The next surprise was being told that 10 councillors were waiting to come up with the camera crew and view my house.

Right away I said no way that was not the arrangement and I would not cooperate. Later in the afternoon a letter arrived, too late, to tell us our house was one of the 10 best new building projects and they were looking for volunteers to allow their flats to be filmed.

What a badly organised and sneaky way to get people to agree to be used like that.

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.