So far so good

Well here I am sitting occasionally in sunshine then a dark cloud rolls over and vanishes as quick as it came.

At 10.00 all went well, my carer came on time and after she left I finished my breakfast toast and drank tea and read the old newspapers.

The 12.00 person came late at 12.25 just too late, half wet myself and by the time she lowered me on the toilet plus all the wrestling to get me in position meant by the time I sat I was too stressed to do anything. That means tha I am desperate now and will have to wait another hour til the 14.00 woman comes, one I know who is not so confident using the lift.

She always tries to be too quick and ends up getting it all wrong and getting totally flustered. I shall do my best to be positive maybe that will help her remain calmer. It seemed to work mind you by the time the lifting harness was wrapped round me it was too late again and I wet myself as the lift raised me out of the wheelchair.

All went well she got me down on the toilet ok and all went well but getting the new nappy on me was less successful and she broke off the sticky bit on one side hope it all holds together for another hour and a half til my darling comes home.

We will see.

Not bad for a monday.

Gradually getting over the shock of friday really got to me it did. Feel scared shitless and totally calm at the same time.


Friday evening smoked several j's to get over the fright and for the pain in neck, shoulders and back.


Saturday we were not as bright as the weekend before but still went down to the Ten Kate market for fruit and vegetables.


And a couple suriname rolls at Surina my favourite Suriname takeaway. Richie had two tempe rolls and I had one with pom (suriname curried chicken and cassave baked in the oven) and one with saltfish.


Saturday evening we tried our best not to worry too much about how to cope with the latest development of me hanging over the back of the wheelchair.

Richie wanted to give up working and stay with me to make sure nothing happened to me. Persuaded him for now that even if he watched me all the time he and I can do nothing to stop the spasms.


The weekend was pleasant but we were both worried about today, what would it be like for me being home alone. Well it turned out well, my carers came at 10.00, 12.00 and 14.00, Richie
called me at 11.00, 13.00 and 15.00 and inbetween our neighbour Willes called from upstairs to check I was ok.


Rona from Zorgthuis called to say she was glad I sent her a set of keys, I also gave her all the important telephone numbers. Told her we were getting an alarm installed on the 23 of August, its mainly for burglary, fire but I get an alarm button to hang round my neck.

If I press it the call to check I am ok. If I am not they call Richie or if appropriate an ambulance.
Feel very reassurred after today that we have covered all the bases we can.


SO not a bad day today plus my new phsyio came by, she will be coming by twice a week which is brilliant. And on wednesday someone from the CIZ will come by to discuss other aids I may need and if I am lucky they may advise the council to give them to me.


Wednesday the stand up wheelchair for a weeks trial, hope the company can help me get one from the council would be great for limiting the sopasms, circulation and general good health as well as prevent sores from sitting down all the time. Fingers crossed I get one.


So got through Monday and better than I thought great stuff!

Another horrible shock

My 12 noon carer came and as I was rolling backwards to make the turn into the hall to open the door, I had a strong spasm which pulled me backwards.

Tried to pull myself upright right away but too late was already beginning to flop backwards over the wheelchair.

Fucking horrible and very scary. Could do nothing to get back upright could just see Melitta through the window in our front door.

She did not seem to understand that I could do nothing to change my position as she was trying to encourage me to open the door.

Would have loved to open the door but there was no way that I could move as the chair was tipped back

Called out Richie's mobile tel. nr to her and asked her to call him and tell him to come home right away.

What seemed like centuries later Richie got home and pulled be back upright in the chair. I was running with sweat totally boiling from the exertion of hanging backwards over the wheelchair.

A nasty surprise for such a beautiful summer's day.

Oh well tomorrow is another day and it's bound to be better.

Happy days!!

A better day

A better day today, my 10.00 and 12.00 carers arrived without any problems with the bell.

My new doctor came for her second house call, once a month ago to register me and today to see that I am ok as well as to take a swab to check for a possible yeast infection.

Very sympathetic doctor, seems keen to be supportive of me which is great. Sadly as she was taking the swab the doorbell rang before the doctor could get to the door whoever had been there was gone.

Cos I suspected it was my two o'çlock carer I called the office to tell them there had been no attempt to check I am ok.

At three the woman who should have come at 14.00 called to say she had been and could not come again. However she promised she would in future call me on the phone to check I am ok.

Hope they all do would make us feel better especially my darling Richie and of course me cos it was not so nice sitting in wet clothes for hours.

Today has been joyous since my darling came home despite everything we love each other very much that's my ray of sunshine. That and my lovely friends.

What a day!!

Today started good the sun was shining and summer was back in force. At 10 am Melitta from zorgthuis came to help me go to the toilet and get washed and dressed.

All went well except just as she was leaving I said I think I need to go to the toilet again, but she had no more time, we agreed the incontinence pants would absorb it all very well should I get caught short.

And it did and had the 12 noon person come at the agreed time there would not have been a problem. No one came at 12 so I phoned the coordinator, she told me that someone would be round between 12 and 12.30.

And just like last week and in fact all the other times recently when no one turned up we had a conversation about my bell, and again I told her that my bell was not broken, noone else seemed to have a problem ringing the bell.

Could not believe it when she mailed me last week that it had been a shame for Ingrid that I had not opened the door!

A shame for Ingird? What about me then? She is not the person getting the help and care that's me. Surely if she does not get a response she should ring me as I could have had an accident.

Fancy that eh, you work as a care assistant/nurse and you arrive at a client's home and no one answers the door so you just go away knowing the client is in a wheelchair and can't do anything for themselves

So I sat here patiently waiting and noone came at 12.30 so I called the office again but no one was there all out to lunch.

Then at 13.00 I suddenly started to piss there was nothing I could do about it, it just happened. I had no control and how could I when I had been waiting deserately for hours to go to the toilet.

Called Willes on the 4 th floor and left her a frantic message along the lines of help please bring some old newspapers to put on the puddle on the floor. She was down in a flash with an old sheet.

At 14.00 no one turned up again, this time Willes phoned for me and enquired why no one had come at 12.00 and why no one was ere now? Rona said she can be along any minute if no one shows by 14.30 ring me again.

We did and 14.30 she promised to get someone round as soon as possible. At 15.00 someone came, in fact the person I had seen monday morning and had thought
to see twice on monday but who monday too had just missed me out at 12 noon. Luckily Richie had been here all the other times recently when I had been let down.

Today was horrible, my lovely neighbour Willes's company made it more bearable and at 15.00 a good friend Jeanet turned up as well which was lucky as I had to explain again how to put the lifting harness around me safely.

Poor thing got it wrong time and again, luckily Jeanet was there too and although she had never operated a hoist before she worked out how it all worked and between them got me airborne and washed and dried and wheeled through placed on the bed and between them dressed me.

Glad Jeanet was there and between them it went well. Was recovering in the front room with Jeanet when Richie came home.

After we both recovered abit over a cup of tea and a medicinal j we set off in sunshine for the Vondel park with the dogs. An excellent way to end what had not been one of the better days.
Really enjoyed seeing the dogs run, jump,swim great stuff and suddenly the day got a different character.

Going up the Kinkerstraat

despite the rain had a good day went out briefly for an hour on the speedy, just up the kinkerstraat and over the ten kate market.

fucking brilliant to be able to move around without being pushed. it was all very damp from the downpour which looked like it was going to go on all day.

had lots of pretty painful spasms as we went along but great to see that they did not stop me going.

Spike and I

Since I have been getting bad spasms poor Spike can't jump up on my lap anymore for a cuddle as that sets off the spasms.

As he is a dog I can't explain why his daily cuddle sessions had to stop result depressed dog.

Recently discovered that when I am on the bed he can jump up next to me and we can have our cuddle session back.

Spike is back to being his usual happy self now his cuddles have been reinstated and I am happy too.

re lovely neighbours

hello mdmhvonpa was really sad i had also removed your comment as well when i accidentally removed the post 'lovely neighbours''.

in your comment you said the only way to get your neighbours attention where you live was by being aggressive.

in this city its not usual to have such good relations with your neighbours, people are very insular here.

amsterdam is in fact well known for its rude and aggressive people, Emma Goldman records this famously in her book 'Living my life'.

Wow! Not bad this going out.

Last night was great going round the block for the first time with the Speedy. Blimey it was almost too exciting, as well as being totally scary.

We only went round the block but it was as eventful as going on safari all those kerbs to be negoiated.

Was pretty glad to get back inside and celebrate my huge journey from the safety of the second floor.

Today we went out about 17.30 only meaning to pop over to the Xtreme (coffeeshop) in the Huidenstraat. The very idea of going what seemed a huge distance had me going quite rigid with fear. All those hump backed bridges and would my left hand be able to use the handbrake?

As it turned out the further away from home we got, the happier I and Richie became. Once I had braved several bridges and we had got to the Xtreme we said lets go further lets go to the

Basjoe.

And we did but I won't go via the bridge by Freddie's bar again the kerbs are dreadfully high a really nasty bump down after quite a high bridge.

Got to the Basjoe feeling quite euphoric, our first time since 6 th of October 2006. Had a lovely reunion with James, hugged and kissed, it was very emotional. So long since we had been there, seems unreal now how long it was. 6th of October I could still hobble abit and could drag myself out of the chair and into the shop.

Later on when it was less busy Leo came out to say hello, he thought the Speedy was great, he loved the colours red and black, as he put it just right for me. Boy how he laughed when he heard I had only just got it on thursday and here it was three days later I was already at the Basjoe

Tonight I sat outside with my Speedy feeling quite the thing I had got all the way to the Basjoe had braved the pain and the traffic and the bridges and all those big kerbs and had a real good Sunday bloody marvellous feel really happy. Can't believe the difference it makes to be able to go outside. Beginning to feel alive again.

yipeee first trip round the block with the speedy

Me and my lifting machine called wendy

Thought I would post a couple photos of me dangling from the hoist above the toilet.

I get to do this lots just like having an amusement park attraction in your bathroom lovely!

Anyone can comment

discovered thanks to a comment on my dutch blog that my comment settings were on registered users only, have now changed it to anyone.

Lovely neighbours (first posted 17/7/7 deleted accidentally)

We have really lovely neighbours, today Rachida who lives down the landing and whom I had met for the first time on Sunday when I popped up to see Willes, came by to ask if it was ok to put some new plants in our plant pots and generally tidy up the balconey for us. Then she said I could roll out and sit outside when I felt like it.

Really amazing anyway after a wee while I could not contain my curiosity and had to go out to have a look at what they were doing. Found Rachida and Deborah both had cleaned the balconey and were potting up plants to replace all our dead plants.

It looked really lovely, its abit odd someone else doing that for us but its so very nice of them and well meant.

Later went down the landing to have tea with Rachida, Deborah and Willes, it was very pleasant indeed. They are three amazing neighbours, the sort I have been wanting for ages.

The only problem is that only the balconeys themselves and from the lift to the front of the building has a wooden surface everything else including the landings and the steps is open metal grid which is quite dangerous. Shoes get caught, dogs can't use the steps, people with sticks also have problems.

Luckily there is wood outside our door otherwise I would not be able to come and go without the most horrible spasms. That for me is the real problem the fact that rolling over this open metal grid triggers off horrible spasms which causes my back to go totally rigid which can flip me out of the chair. So that means I have to have someone with me who can get me sitting properly in the chair again.

Just rolling down for tea with neighbours caused a huge wave of spasms really glad my darling was with me otherwise it would have been more horrible. Bloody frustrating for me not to be able to go where I want when I want. Even more frustrating now I have met the neighbours.
They all agreed that we have to contact our landlord and ask them to come up with a solution.

Good old Welzorg

Today my speedy electric handbike arrived I was really excited all week about today and so was Richie. The man from Emcart went to the old address luckily he phoned the office who rang us and not too long after he turned up.

At first it seemed I would not get the attachment fitted as I don't have my own wheelchair yet.

Phoned Ferry who lent me the chair and he said as long as it can be removed he does not mind. Then had to check with Welzorg, Ruud (the extremely friendly engineer from Emcart) said he thought it would be no as it would mean two installations and that costs money.

Five mnutes of pure nerves, all three of us thinking it would be no when the answer was yes go ahead. Yippee I could keep it today and not have to wait for another month till I get my own sport wheelchair.

Good old Welzorg today they made me very happy. Finally something nice, I think I deserve it as I have been waiting for equipment since last August 06.

Getting out and about

The days have gone by quickly since last week tuesday, the day after we went to A's birthday party I spent sitting around here with a happy smile on my face. I intended to go out thursday but by the time we were going out the weather had changed dramatically from summer to thunder and lightning.

Friday a good friend visited so did not get out either but Saturday I did go out to the market with my darling Richie. He was amazed when I suggested we go to the market, turned out cos I did not mention the market he just assumed it would not be a good going out day.

Well it turned into a great going out day, we had fun on the market visited all our favourite stalls and bought great fruit and veg and beautiful flowers, big pink and orange gerbers. Look brilliant on the kitchen windowsill.

On the way home from the market we visited the coffeeshop for us and the petshop for the dogs. As we started back to the flat I got a call from a friend, Anne to say she was waiting by the front door with a bottle of proscecio. Zipped home to see her and soon as we were home another friend, Cecile and another bottle turned up. Wow it was turning into a party. My darling produced bowls of nibbles and we toasted each other happily.

Our neighbour, Willes from the 4 floor came by as well as two other friends Paula and Lin so it turned into a very pleasant saturday evening pleasant company, good wine, great food brilliant evening.

Sunday was equally good we had a gentle start to the day and in the afternoon popped up to visit Willes and Henk on the 4th floor. Loved her red living room really great room. Nice to meet her bloke and we had a pleasant visit, wine for me and mineral water for my darling and then before I knew it one minute we were talking about blonding my hair and the next she had mixed and applied it to my hair and within an hour I was super blonde.

Today started not so nice with a huge thunder storm and torrential rain just when the mobility bus came to take me to the OLVG hospital for the last MRI. It all went ok even though the diazepam had not knocked me out by the time I went in the machine but I did not have a panic attack. Brilliant for me as I am so claustrophobic.

I fully expected to be too zonked this afternoon to go anywhere but surprise surprise off we went and did the shops as we had planned and got home before the next huge deluge. Feel very happy seem to have cracked it. So ok I am in pain and discomfort but I am in pain indoors too, so I might as well go out and get involved with the world.

Feel much better now glad I dared to break the cycle which seemed to be happening when I did not go out for a month. Happy days!

Really happy

The day got even better at the dentist where I got a real demonstration of human solidarity when I desperately needed to go to the toilet. Nice to see that people will help and are happy to do so. Real good makes me feel happier also about going out.

A wee blip trying to get home the bus made us wait for an hour then turned up just as we were leaving to get the tram. It's always unreliable and especially after 15.00, real relief to see it. Got home later than expected and ate quickly had to we were going to go to a dear friends Arletta's birthday party.

When we were invited I had wondered whether I could get there would I be up to it. Well I was up to it up two very steep sets of stairs. Bloody scary I took off my glasses and closed my eyes still felt the acute angle of the stairs.

The team who carry people up stairs are brilliant and do everything very well its reassuring. They are a great bunch. Brilliant going there tonight good for me and for us all. Nice to go to a good friends party, Arletta made great food and it was good fun. Nice to get out see people.

Home now after a great evening first one in ages. Extremely happy days. The big O playing softly in the background while I dream of happy tomorrows.

Not a bad day today

Can't be bad despite the shitty weather I am feeling good. Already updated my dutch blog and had a shower it was almost a pleasure.

Got the stadsmobiel (mobility bus) coming in 10 minutes to take us out to the dentist.

Oh well happy days!

Life is a pain.

My life is full of pain and discomfort now but I must live with it. Finally today after getting more and more upset over this last month at not being able to go outside I have been able to come to terms with my reality of pain and discomfort. Have had to say yes that’s how it is and I have to live with it. Its not going to stop me going outside, I need to get out and smell the air, feel the sun and see people and my darling Richie quickly says spend some money.

Still really shaken up about being thrown backwards over the wheelchair by that sudden spasm which thrust my foot back and my body backwards. Scared the shit out of me especially as there is nothing that you can do to pre-empt spasms happening, can’t be aware of something that happens so unexpectedly and unpredictably. Certainly can’t take any precautionary action not with spasms, certainly not that I know of.

Had a huge howl today and told my darling how desperate and low I felt since I had not been out for a month and we both concluded pain or not I had to go out so we did there and then and it went ok really switched my mood from gloomy and depressed to happy and looking forward to going out again tomorrow to the market for cheese and to buy a birthday present.

Did have to take a 2mg diazepam to reduce the spasms and it seemed to do the trick. The last time I went out a month ago the spasms were so bad we only got about 50 meters from the house so today has been a good day and I an looking forward to a few more this coming week.

Happy days!