Wednesday, November 30, 2011

Not ThisTime.

Joan Miro.

Today has been a day where the only thing I could do was wait and hope that Herman had successfully resubmitted his bid.

If he did then I should get the news quite quickly, Frans was here on 15th November, he sent his bid in right away, and he heard on 25th that his bid won, he got the sale.

Then I heard the customer could choose the supplier, so I made my choice known, Agis informed me that while I may have the right to decide the supplier.

However because I see an occupational therapist, I could not speak for myself; my OT was the one to explain.

Brilliant, so because I am handicapped and see an O.T suddenly I can not speak for myself, what a thing, not really surprising as they are so sexist and discriminatory here.

So I should not be surprised, Maurits was the one to do the talking; this reminds me of when I worked as an agency worker at Euronet, I had completed a network plus course, my ambition was to become network engineer.

Euronet were looking to train up network engineers, my misfortune was to have a manager who didn’t think women could do the job.

He actually told me that men were born engineers; they had it in their genes, shortly after I got another IT helpdesk job.

I never got another opportunity then, this time I will not let myself get bullied by another ignorant bully like Frans

Tuesday, November 29, 2011

Calm And Positive.

Joan Miro.

Well the good news is that Maurits my occupational therapist has spoken to Agis; they have said that Herman needs to send them a new bid asap.

He needs to write clearly on it, that, the application had already been agreed; I was merely changing the supplier.

That’s great news, it really is, only shame is that it will take some time, maybe a few weeks says Maurits, surely if they already said yes, why can’t it happen quickly.

The answer is no, because they are burocrats, they could not possibly give a quick response not when they can take their time.

I have suggested Herman should remove the voice recognition and any mention of the Home Servant.

Once Agis gives the green light, then Herman can add the voice recognition, the Home Servant for which we will pay, it will be well worth it to be able to keep communicating.

Today I also got the annoying news that Aquarius had only just sent in their bid, for the bed support to Agis, Kees was here on 5th November, he knew i need this urgently, yet took 24 days to send the bid.

Welzorg have recently taken over the company, and immediately the quality has gone, shame for Aquarius and their employees who had such a good reputation.

After getting upset at how annoying it is to have to constantly put up with such treatment it is intensely frustrating and rather annoying, I decided to keep calm and positive.

Monday, November 28, 2011

Hijack By RTD Het Dorp.


Joan Miro.

It seems life is not going to get easier; on the contrary, it’s got more complicated, last Friday I got told my requested software had at long last been agreed by Agis.

I heard at the same time; I should let them know who the supplier would be, I did this right away, through the website, their phone lines were just too busy on Friday.

This morning, I phoned, in order to be sure my message got to the correct department, sadly
Agis’s computer system was down, so I got asked to phone again this afternoon.

Melissa said to phone back at 15.00, she thought the computers would be working by then; she was pleased when I commiserated with her about having to start her week like that

Apparently I was the first person to be sympathetic to her; this was at 11.00, when I called
back at 15.00 I could finally leave my message; an hour later I got called back.

I was told they only had one bid for the contract, it wasn’t HEServis, it was RTD Het Dorp, who I thought were giving the second opinion not hijacking the contract.

Two weeks ago when Frans was here to give his opinion whether I should get it or not, was I handicapped enough, I was led to believe he backed the application.

It seems he left here, went away to draw up his own bid, seemingly undercutting the other bid, so  I do not get the excellent package put together by Herman from HEServis.

Instead I get an old system, with fewer possibilities, only one language, I speak three, I use all three. I hope my occupational therapist will be able to sort this mess out soon I need Seetech right now.


Sunday, November 27, 2011

Puppy Fun.

Enrique Tabara.

It’s been a week full of puppy fun, Tina has been a wonderful addition, Marleen and Cyril are noticeably happier since she got here.

Her coming to live here has rejuvenated both dogs; they are playing much more exuberantly than before she arrived.

The other thing that is wonderful is how well the dogs are getting on, Marleen was good right away, and the two of them slept together on the second night, Cyril got worried but soon bounced back.

Especially when on the third day, Cyril found out that playing in the park with her was great fun, better then before her arrival.

On Thursday, it was just one week, but it feels almost like Tina has been here much longer, so well do the dogs get on, it really is good to see.

We did have three dogs until one, our Daisy died in June 2006, just before my ms diagnosis, which shocked us; then we had other things on our minds than getting a new dog.

When our lovely dog, Spike died last December, we decided to give another dog a new home, Cyril joined us in January, happily Marleen and Cyril got on very well.

We recently decided to look for another dog to join our two darlings. It took several months, and then last week there finally was just Th dog we were looking for, tine

Three dogs seems to work very well for dogs, makes them very happy, dogs prefer to live in packs, so our three dogs are happy with their pack.

Saturday, November 26, 2011

Pandora's Box.

 Amazing scenes of incredibly brave people who despite many being shot by the police and the army are still demonstrating in Egypt’s Tahrir square.

 This time against the military who have been in charge there for 60 years, the Egyptian people rose up, in January against President Mubarak’s regime.

He went, the military didn’t, they are still there ordering the tear gassing and shooting, to kill, maim, frighten the population into submission.

The reasons there are so many brutal, corrupt governments, is that so called ‘’democratic’’ governments, our governments have kept them in power.

Countries seem to find these dictators easy to do business with, regardless of the desperate situation of the people.

Russia supports Syria, it gives them strategic ports, and Syria is supported by Iran so China supports Syria too, USA supports Egypt its an important strategic ally, they support Bahrain who gives them ports, which is why they do nothing to stop the brutality there.

Tunisia was the spark that ignited the struggle for self determination, for Mohamed Bouazizi in Tunisia; self immolation was his only way to protest against the extreme corruption.

For the rest of us this is a dreadful situation which will explode one day, protesters in Tahrir square have already noticed that the teargas is made in the USA.

Friday, November 25, 2011

Good News And Bad News.

James Gleeson, 1980.

Today I heard that the application for Seetech software has been given the thumbs up by my health insurance.

Good to know that this has now finally been agreed to, not before time too, feels like I have been waiting forever.

It just feels like centuries, everything does when you apply to burocrats for it, and this is when I wish I were rich.

The good news is, I will get Seetech, and the bad news is that Frans, from RTD Het Dorp will be supplying it.
I am astonished, had thought he was just giving his second opinion, not hijacking the order.

The thought of Frans installing the software and giving me instructions how to use it was too horrible, that upset me even more.

I wrote to Herman to express my disappointment, that his company wouldn’t be the supplier.

He wrote back, telling me, I could still choose the supplier, which I thought I had done, but the second opinion obviously disrupted this.

When I heard that I could chose who delivers the software I immediately contacted Agis, my health insurers via their website, phones too busy on Friday.

To let them know Herman’s company HEServis is the supplier I chose, I will check with them on Monday.

Thursday, November 24, 2011

An Embarrassing Subject,

Laurie Lipton.

Bowel movement problems are not easy to talk about, but I think, seeing as I find it such embarrassing subject, that it is good for me to do so.

Yesterday morning Richie got me out of bed so I could go to the toilet, this was successful, and so Richie put me back into bed.

We both thought that the job had now been done; I was back in bed, enjoying thinking about writing my post, while answering my e-mails.

When after just one brief hour, out of nowhere, like a bolt of lightening, without warning, I started having horrible cramps in my guts.

Immediately called Richie, who got the hoist and the shower chair, I was hoisted out of bed, the action of sitting then being lain down, then sat up again facilitated the bowel movement.

By the time we had reached the bathroom I had crapped in my leggings, glad we went when we did, would not liked this to occur in my bed.

Luckily Richie got me over the toilet before the rest happened, which must have been the biggest bowel movement I have ever had.

What seems to happen is that i do have some bowel movements everyday, just not everything, there seems to be a backlog, which is ‘’saved up’’.

Then every three days, sometimes more, there is a huge bowel movement, what Richie charmingly calls ‘’ my python effect’’.

Wednesday, November 23, 2011

Welzorg Keeps Customers In The Dark.

Kris Kuksi.
Welzorg surprised us, by calling me at 09.00, to tell me they were coming to collect my wheelchair, to fit the new two handed steering for Richie.

I wonder how they could phone me Thursday last week; to inform me it could be done here in Amsterdam, but couldn’t also tell me when.

Seems now it could be back the same day, not the week they previously insisted was needed, why didn’t they let us know their intentions on Monday.

Then we would have been organised, as it was Richie couldn’t do the things he wanted to do, he had to be home for when they brought the wheelchair back.

The pickup happened at 11.30, a big relief for the dogs, who needed to get out, Richie couldn’t go, before the person from Welzorg had collected the wheelchair.

I am very glad that we have at last got the correct steering for Richie, we should have been given this last November, maybe then I wouldn’t have fallen out of the wheelchair in June.

Amazing, finally it happened, shame it didn’t happen in October, when the weather was so warm for that time of year.

When Arjan, from Welzorg phoned last week Thursday, he let slip that they had the steering available to install since mid October.

That’s Welzorg, no wonder they lost their monopoly, I feel sorry for their staff that do their jobs well.

Tuesday, November 22, 2011

Happy Tuesday.

Eric Thake,Bathing Boxes.

A very Happy Tuesday tonight; we will be able to see later with Jools Holland on BBC 2 TV that was, a wonderful surprise reading that it was on.

Sadly it will be the last live show this year; Friday will be the last time until the big New Year’s Eves show, always sad when it is the last one.

Brilliant when there are new shows, they happen three times every year, in April, October as well as on 31st December.

Since so many record shops no longer exist, Jools has become an important showcase for bands, a good place for new talent to be seen.

Not long until the Hogmanay show, to see the New Year in, I was not sure about my future recently, did I even have one, and how long for, again much too many questions.

I always had too many questions, other people often could not cope with them, no wonder as they were too many, even I can’t cope with my questions’

So best to stop, relax, maybe even really enjoy relaxing, there are no obstacles, no deadlines, no work or boss, just my life to enjoy, finally it has sunk in that this is it.

There are no constraints, no one except myself to please, this has taken a long time to penetrate, now it has, I won’t spoil it by reproaching myself.

Monday, November 21, 2011

Foggy Monday.

James Gleeson.

 It’s very good to see how Tina’s arrival has had such a positive effect on Marleen and Cyril; during my physiotherapy session, they had an exiting game of tug in the bedroom with Richie.

Another extremely foggy day again today by 14.30 it was so thick I couldn’t hardly see people on the street until they were right outside, now at 17.43 it’s an even foggier night.

Richie and the dogs have just got back, rushing round, still full of excitement from the park, playing together at top speed, especially Cyril and Tina

Richie told me the dogs have become energised by Tina coming to live with us; she is a wonderful little dog, who has made going to the park even more exciting.

I enjoyed sitting in the front room watching the fog getting thicker, very funny noticing how the end of the street slowly disappeared into the fog.

Later on at 20.00 the fog lifted and the temperature has dropped considerably, this is now winter,

Because Cyril and Tina went swimming Richie had to take the dogs to the dog toilet, on their return, Richie’s hands were like lumps of ice, so we had to wait until they had warmed up.

When Richie’s hands were warm he took me to the bathroom and then back to bed, which was so much better with warm hands.

Back in bed we ate delicious lasagne while watching University Challenge on BBC 2, now I am enjoying listening to the Choir and writing my post,

Sunday, November 20, 2011

Life Is Like That.

On The Verge Of Becoming.
James Gleeson.

This morning I woke to the sound of happy dogs, so I called out hello doggies and Tina immediately jumped up on my bed for a cuddle and a hand licking session.

I have missed a dog doing that ever since, my special little friend, our lovely Spike died of spinal nerve cancer on 18th December last year.

Spike reminded me so much of my dog in Trinidad, my Peggy, a gorgeous Dalmatian, a wonderful nutty dog who was always there for me.

Just like Spike was there for me, when I had to stay in bed so suddenly in 2008, Spike was my constant bedside companion and entertainer.

First thing in the morning he would leap up to say hello, every morning begun with him licking my hands, then a cuddle before he would go off for toys, for me to throw for him to catch.

A great arrangement for Spike, he really did try to fill my days playing with him that dog was my therapist, keeping me busy all day and all night if he could.

Such incredible determination, he wouldn’t give up easily he never did, he was an incredible character, a 100% unique personality, glad we had the pleasure of his company for 8 years.  

We both still can’t believe that he died last December, we had hoped he would be with us for another 4 to 5 years, poor little fellow was only 9 when he died, which was really not fair.

That’s illness for you, everyone can get ill, that’s what fascinates me about the burocrats, I have to deal with who arrogantly patronise me, ‘’the poor little disabled woman’’.

They should remember that anyone can be in my situation, it just happens, life is like that.

Saturday, November 19, 2011

Puppy Love.


Daniel van Nes.

Today I woke up in quite a lot of pain, because my body had moved alot during sleep, so much in fact that it had got twisted up.

No wonder I cried, instantly Tina was by my bed, trying to comfort me by licking my hands, what a sweet little puppy she is, we are both happy we found her.

Its day three with our lovely new dog Tina, she is fitting in so well, seems funny that she has only been here for a few days.

Richie told me that today in the park the dogs were all playing together like old friends; he said they were a happy pack.

That’s brilliant news, good to hear they had such fun in the park, playing with a puppy brought out the puppies in Marleen and Cyril.

Richie said he had not seen Marleen and Cyril playing so much at such high speed as this afternoon, apparently it was a wonderful sight, three dogs having fun.

The dogs are doing very well getting on with each other, its nice to see them working it out between them, we supervise but don't intervene unnecessarily.

Cyril because of his previous bad experiences at his old home is a more worried dog, he is the only one who every now and again, gets anxious and starts to protect his toys.

But he is also starting to like Tina, getting her to play tug with him, I think they will all be fine together; they will soon be a fine pack.

Friday, November 18, 2011

More About Tina.


Day two with Tina, she is a delightful little dog, even though its early days, yet already the three dogs seem to be working things out between them.

Marleen has let Tina know she is the top dog, Cyril had a wobble yesterday, he got worried and insecure, but a visit to the pet shop for tripe, dry tripe chews as well as new toys soon cheered him up.

This morning Richie got up early, to take the dogs to the park, when they returned Marleen, Cyril and Tina were very happy dogs.

They ran around jumping into dog beds, and then back out again, all at top speed, almost like whirling dervishes, they kept this up for more than 30 minutes

Tina had to be introduced to dog beds, yesterday she immediately wanted to sit on the sofa and chew her smelly tripe chew, she didn’t understand, she does today.

The next thing is to get her totally house trained, at the moment she has not made the connection between going out to the dog toilet and peeing or pooling.

This afternoon she came back from the dog toilet and had a pee, then a poo under the table in the front room.

I am sure Richie will be able to help Tina make the connection soon, she is a clever wee dog, will soon be house trained.

The good news is Tina likes us all, she has started to defend the house by barking at potential intruders, I am so happy she has made her mind up that this is her new home.

Thursday, November 17, 2011

Tina, Our New Dog.


Today is an exciting day, Richie went off to the local pound to meet our new dog, on Monday evening I spotted her on the website.

I sent an e-mail requesting that they reserve Tina for us, the next day someone from the pound rang and we chatted about Tina.

They said they couldn’t reserve her; however they suggested we visit with our dogs to see if the three dogs hit it off together, Richie was busy until Thursday.

I phoned yesterday t 15.3 to see if Tina was still there, luckily she was so I arranged that Richie would go there this morning with Marleen and Cyril  

It was difficult for me waiting to hear what happened, whether it went alright, did we have a new dog or not.

Richie left at 09.30 and returned at 13.00 with three dogs, so now we have three lovely dogs, Tina is a sweet playful dog, and the three of them are alright together.

Lovely to see them all together,working it out between them, for now it’s already good between them, so that means it can only get better.

Once they go to the park and start playing together they will have even more fun together, which will help them start to bond and become a pack.

I am very happy that we have finally have found our third dog, she seems to be a good addition to our lovely Marleen and Cyril, so now we have a trio of beautiful dogs.

Wednesday, November 16, 2011

Empathy And Understanding For Disabled People.


Laurie Lipton.

Glad I managed to handle the appointment yesterday so well, it gave me a boost; I am pleased that Richie and I made it clear how we felt about never getting aids on time.

It was rather annoying to have that arrogant man, Frans, from RTD Het Dorp, telling me what I am experiencing, and what I should be able to do.

He told had me that I needed a smaller joystick, that would work well, and I should be able to steer my wheelchair without any problems, but he was not here to discuss my wheelchair.

I pointed out that my arm muscles are much shorter now so I can’t stretch my arms out to hold the joystick, so a smaller joystick wouldn’t be any use to me.

He had no idea, so was surprised when I mentioned how my arms get so tense, cramped sometimes they get forcibly folded across my chest, not good if trying to steer my wheelchair.

He was here to give his second opinion on why I needed the Seetech software, but being ignorant about MS, but also very opinionated he had to start telling me what I was experiencing.

I told him that he had no idea, that I know exactly what I am feeling and what I can do and what I can’t do, and I did not need him to tell me amazingly he listened and was gratifyingly quieter afterwards.

Astonishingly for someone who has been supplying software for the disabled for years, it was clear he had no idea; and not a shred of empathy or understanding of what it’s like to be handicapped.

I hate to think of what he must be like with other handicapped people who are not able to speak up nor have support from Richie like I have.

Tuesday, November 15, 2011

Time To Be Proactive.

Laurie Lipton.

Today I had an appointment with Maurits, my occupational therapist and Frans, from RTD het Dorp, to give his second opinion, whether Seetech, the software operated by eye movement was justifiable for me.

 I saw Frans once before in February, when he dominated the room, loomed large over me, he stood just behind me, almost shouting in my ear.

Patronising me in a bellowing voice, not listening for a second, to why I needed what I needed, if he had he would have understood that in February I needed Seetech.

It would have been good to have been able to learn how to use it, before my index finger finally stops functioning; which is happening now.

Today Frans tried to patronise me again, started lecturing me again, after awhile I couldn’t handle sitting there having him tell me what I could do and what I needed.

So I told him that I knew exactly .how my condition was, I could feel only too well how my arms were getting very heavy, difficult to move, that I recognised paralysis was happening

Basically that I needed the Seetech software now, Richie backed me up saying that it was time that I got what I needed on time.

Richie said that there have been too many aids given too late that I could not use, that were no longer useful as my MS had progressed again, he said it was time to be proactive.

After that Frans finally got down to business writing down all the things I had tried, that he need to use in his second opinion backing up my application for Seetech.

Monday, November 14, 2011

Dreamy Afternoon.

Head of Spring, 1941/1942.
Pavel Tchelitchew.

Mathilde was here on time, for our physiotherapy session, we got started right away, when she lifted my right arm it triggered off an extremely painful spasm.

She massaged my shoulder, as well stretching exercises with my arms; I also inhaled THC which helped me relax and do the rest of the exercises

Now, I am feeling quite dreamy, it looks nice outside today, but having felt Richie and Mathilde’s cold hands I know that it’s freezing outside.

A day when I am happy to stay in and enjoy being warm while seeing people wearing a lot more layers of. clothes than at the beginning of the month when it was mild weather.

Noticed again just now during my Monday appointment with Mathilde, that lifting my right arm is a big effort, impossible to stretch as far as my left arm.

This week touching my nose with my right hand was quite an effort, lifting my arm was almost herculean; it felt good when I had finished.

Really good, so good afterwards, that I am sure that I have been sitting here smiling since Mathilde left.

The sunshine has started to fade away now, as its 16.00, it will be dark by 17.00, and then Richie will make pasta Carbonara for me, which is delicious.

I am looking forward to this evening; I have been sitting in our front room sine 12.00 which has been delightful.  

Sunday, November 13, 2011

Peace And Harmony.

Spiral Head, 1952.
Pavel Tchelitchew.

Yesterday, Richie and I were talking about how my MS diagnosis in 2006, has had a big impact on our lives, how it has totally changed our lives.

Our lives as we knew them then, was over, one thing it has no effect on is on us, on who we are, before my diagnosis I was looking forward to getting old with my darling Richie, now I look forward to seeing him again everyday.

That is why my blog  is not just about ms; it is about the things that I can't do any more, things I encounter, like the frustrations of dealing with companies like Welzorg, but also of helpful  people.

My blog is my daily diary of the pain and discomfort of ms but it’s also about the pain and suffering that I read abut in the newspaper and see on the TV screen.

Like seeing the man covered in blood running up the middle of the road in Syria shouting they are killing us, and in the next moment he was killed on TV, we saw this on Dutch TV.

He looked like someone I knew, called Hassan, who owned a falafel shop, he used to give us squatters extra, seeing this man killed cold-bloodedly on the TV was upsetting, I shall never forget him.

O n the BBC TV we saw the desperate lives of a group of people in Zimbabwe, small children, who should have been at primary school.

Doing everything to earn money to feed their families and to pay for themselves to go to school, everyday they did n ot succeed,   it was heartbreaking viewing.

The desperate situation in Bahrain, where doctors and nurses have been tortured and sentenced to long prison sentences for practising medicine.

Hopefully their sentences will be repealed as other countries express their alarm about the high level of state repression, other African dictators are quite rightly worrying about maintaining their status at all cost.

Wouldn’t be good if people could finally be able to live in peace and harmony, without manipulation by dictators who are kept in power by our ‘’democratic’’ governments.

Saturday, November 12, 2011

Welzorg Have No Care For Customers.

Firebird Suite, 1942.
Pavel Tchelitchew.

No sooner had the Welzorg engineer Tijl left, when I got a call from Welzorg, about when they will be collecting my wheelchair, so they can install the new steering.

Instead of the promise made by Percy Bouman, that Welzorg would be collecting my wheelchair at lunchtime one day and returning it at the end of the next day.

That is what was agreed on 5th November, they now want to remove it for a whole week, which is not acceptable, especially as its not a big job

The man from Welzorg tried to persuade me to say yes, so did my case manager, I explained to both, that this is not an option for me.

I won’t be pushed or persuaded that something that causes me so much discomfort would get my agreement.

Well there was no contest, I won’t put up with week in bed, I told them both, they were not happy.

They are trying to work something else out; I hope their new plan will be communicated soon.

Hate the way one is always left wondering what is happening, Welzorg never inform their customers, they like the profit nothing else seems to matter. 

Friday, November 11, 2011

Wish I Could Stop It.

The Juggler, 1931.
Pavel Tchelitchew.

Today has been a quiet dreamy day, it is much colder as autumn is becoming winter, and we have had the heating on several times already in the morning, that’s how cold it is today.

We have both noticed that Aud has had a very good effect on Cyril, who seems happier today, he is more confident after getting so much attention from Aud.

Today because he enjoyed playing with Aud for 3 days, he is very playful and has been demanding games as well as lots of cuddles from Richie, nice to see Cyril so relaxed.

Ten months ago, on 5th January Cyril was brought home by Richie, then he had virtually no muscles, he only weighted just 4 kg, now he weighs 7 ¾ kg and has muscles, glad we could give him a new home..

I am looking forward to Cyril getting even more confident and happy, apparently it takes one year for a dog to get used to a new home, and I wonder how he will be in January 2012.

What will I be like in January 2012, right now my arms are getting extremely painful, they feel so heavy, I never thought how heavy they would feel as it becomes more difficult to move. .

I know that I have been good recently at not spending valuable time speculating about the future, but when I became aware of my arms becoming heavy it got me thinking.

As I have no answers I decided to stop thinking about what will happen next, I prefer not to do that as I don’t want to get myself upset, maybe even depressed.

I would love to pretend nothing was happening, that is not possible as I am all too aware that my body is slowly shutting down, weird to be recording this happening, wish I could stop it.

Thursday, November 10, 2011

A Brilliant Visit.

Pavel Tchelitchew.

I was pleasantly surprised ait lunchtime today when the bell rang at 12.20 and surprise, surprise  it was the Welzorg engineer, as promised, to mend the broken arm rest.

Even better still Tijl, the engineer managed to get the new part fitted, it took him quite awhile to finish the job; he got here at 12.20 and left at 13.20.

He was busy for the full hour trying to work out how to best install the new bolt, finally he succeeded and Richie could put the books back on the bookshelves.

After Tijl left, it was suddenly 14.30 much too quickly and Mathilde was here for our Thursday physiotherapy session.

Then far too soon it was 16.30 and very sadly Aud had to leave, Richie took her up the road to the tram stop, the dogs are cross with us, especially Cyril who wants his new best friend back.

Cyril was obviously in love, he enjoyed playing with Aud, he slipped into Aud’s room last night and snuggled up under the duvet, and we missed him but thought it was very sweet.

It has been brilliant having Richie’s sister here to stay for three days, she like Richie is a fulltime carer for her partner, so it was very fortunate that. a friend could help.

 Hopefully Aud will be able to visit again soon, it was very good to spend time with her, it felt like we knew each other for years, a good visit which will be remembered fondly until the next visit.

Look Forward.

Pavel Tchelitchew.

Wonders never cease, my mails seem to have been effective as this morning at last I received a telephone call from Welzorg to give me the long awaited information.
Marlon told me that tomorrow Welzorg would be sending someone to finally mend the arm support; however I still had to ask what time, then he told me between 12.00 and 16.00.’

Spending so much time sending e-mails these last two weeks did eventually pay off which has made me happy.

Of course I won’t believe it, not until the repair has been done; certainly not after the last time when i was promised that an engineer would be here, sadly noone turned up until evening.

I shall put it out of my mind until the morning, what would be very nice is if the engineer got here ait 12.00 and departed by 12.30 so that Aud’s last afternoon won’t be totally disrupted. 

I am glad, that the arm rest will be mended, it is just a shame it didn’t happen last week Thursday, and then I could have been mobile last Thursday as well as the weekend.

How typical of Welzorg to keep me hanging around waiting for them to come here and mend the broken arm rest, then finally come, when I wanted to keep free because of Aud’s visit.

Oh well as long as it gets mended so that I can go out again, this was not possible because the right arm rest was propped up by two books’

Hopefully by tomorrow afternoon this latest problem will be thing of the past, better to look forward rather than back, I intend to focus on that.

Tuesday, November 08, 2011

Pleasant Visit.

Pavel Tchelitchew

No news from Welzorg today, so I sent an e-mail asking for information, shame they could not be proactive and let me know when my wheelchair arm rest will finally be mended.

Amazing that a company like Welzorg can’t seem to find something as simple, as a replacement bolt for the one broken on 28th October.

Words are beginning to fail me where that company is concerned, I can’t believe that they manage to stay in business.

If I read they were going out of business I would feel sorry for the employees, who I also feel sorry for having to work for such an uncaring company, who can’t be good to work for.

Today despite the Welzorg saga has been a pleasant day, Richie’s sister arrived at 10.30, really lovely to meet her, and I am enjoying her company very much.

Luckily today was the pleasant day I hoped for, cold, sunny and blue sky, just right for Aud’s visit; I hope it stays nice for the rest of her stay, shame she can’t be here all week.

It’s nice to have a visitor, someone else to talk to, a different point of view, opinion, nice to have someone else here, good to get another perspective on life.

We have just watched a wonderful music program, Later with Jools Holland on BBC2 TV.

What a show, so many stars, like Steve Earle & The Dukes, Lou Reed and Metallica, Soul Rebels Brass Band. Ron Neville, Reb’ Mo’, Hollie Cook, Various Cruelties.

Monday, November 07, 2011

A Pleasant Visit.

Pavel Tchelitchew.

Amazingly this morning an e-mail arrived fromWelz org, wow, my first ever mail from them in 5 years of being let down, left waiting and kept uninformed.
The mail informed me that Ms Bloom had phoned last week and told me that the new arm rest would arrive on 11.11; I was extremely astonished to read this.

As I hadn’t spoken to anyone from Welzorg although I tried to, and I certainly would have remembered one of their employees giving their name and letting me know what’s happening.

Informing their clients is not what they do; they seem to prefer to keep their vulnerable customers in the dark.

I am surprised that a new arm rest has been ordered, when all that is needed is a new bolt to hold the arm support in place.

How typical, hopefully they will have a new bolt that holds the arm rest securely in place, so that I can sit well again.

Shame Welzorg couldn’t have mended it last week and I could have gone out while the weather was so mild it was 20 degrees on Thursday, Friday, lovely with no cold wind.

Since Sunday it has become much colder, I think the temperature has dropped considerably.

Hopefully tomorrow will be nice day for Richie’s sister Aud’s visit, looking forward to seeing her.


Sunday, November 06, 2011

Welzorg = We Don't Mind And You Don't Matter.

 Hide And Seek, 1942.

Pavel Tchelitchew.

Sunday evening, I am sitting in the front room looking out on a dark street outside; the street lights give a lovely cosy feel to the neighbourhood

I am getting quite used to the dark nights, actually enjoying them this year, I don’t usually like the nights being so very long.

And the days being so short but it seemed pointless to get upset about yet another thing that I can’t do anything about, better to go with the flow and enjoy.

Just sent an email to Welzorg, describing my situation, which is that I have been waiting since the 28th of October, for a simple repair to my wheelchair.

The man that came out then, could do-nothing but report that a new part was needed, he left saying they would be in touch in the next week.

They weren’t in touch, yesterdays because of my mails, I was phoned by Welzorg, a quick call, not long enough for me to be able to pick up, no name given, just asked me to call their helpline.

I did, spoke to yet another anonymous employee, who neither knew, nor was interested in knowing what the problem was, he sent someone who also could do nothing but report back.

More promises from Nick, the engineer that I would be called back next week, sounds like I have been here before.

Tomorrow I will phone see what happens, every time I phone there I get a different person who knows nothing, oh well that’s tomorrow, let me enjoy the here and now, tonight.

Saturday, November 05, 2011

Stay Being Myself.

Enrique Tabara.

Had literal a crappy day, luckily no accident in bed, apart from feeling warm I did not have any stomach cramps or any warning.

Guess I should have realised I needed the toilet when I continuously could not maintain my position, except for a mere minute or two.

I hate having to always be asking Richie to adjust me, but that is my reality these days, I got Richie annoyed when he found out that I was trying not to call him too much.

Richie wants me to call him right away, rather than trying to cope with typing half lying on my side.

I agree it’s better to be corrected right away for both of us, it is nicer for me not to lean over to the left, putting huge strain on my back as well as side.

Need to ask for help when I need it, better that I don’t try to be brave, when it’s actually the opposite, its foolhardy as making do is not good for me.

Too painful for me not t ocall help, really hoping that Aquarius will have a solution soon for me, I need one pretty quick too.

Tonight I am quite tired after all my discomfort, glad despite it all I still managed to keep reasonably ok, though I m sure all the stress I was feeling probably me irritable.

I hate getting like that, not how I want to be, not easy to keep sweet tempered, not when feeling so much non stop pain, discomfort, all I can do is try to stay being myself, which is optimistic.

Friday, November 04, 2011

People First Not Profits.

Jacques Andre Boiffard

Trying to keep being optimist and positive, is not easy when dealing with the band of local council mobility advisors, therapists, suppliers that I have to deal with.

This last week I have been left waiting for Welzorg to come back and finish the job they couldn’t mend last week Friday.

Instead I have not heard from anyone, no one has bothered to reply to my mails and I am trapped indoors with my right arm support propped up by two books.

A big shame, as the weather has been mild this week, I would like to go out but can‘t not until my wheelchair arm rest is mended.

 Today is a beautiful sunny day, no wind, quite warm for November, but I have to put going outside out of my mind for now.

Not easy but I will do my best to stay strong and not get too upset by this dereliction of Welzorg’s .duty of care to their clients, from whom they make alot of money.

Richie found out recently that Welzorg was bought up by a European investment company, which explains much.

They are no longer the national company but venture capitalists, who only care about profits not people.

I wish, that they will experience what I have had to put up with from their companies representatives, I bet they would hate to get MS and be treated so badly, shame on them all..

Thursday, November 03, 2011

It Takes Time.

El Sueno.
Angel Planells.

It’s amazing how much time it’s taken me to come to terms with my diagnosis of Multiple Sclerosis in July 2006, what a shock that was.

July 2006 I walked 15 minutes down the Prinsengracht, to the hospital, which was at the end of my street, for the result of my MRI, probably the last time I walked anywhere.

 On 20 November I became an inpatient at the Rehabilitation Clinic, the reason they admitted me, was because I had been stuck indoors in virtual isolation for months.

On entering the Clinic on a Wednesday I was immediately given a wheelchair, after 3 days using the wheelchair I could no longer use my walker on my first weekend at home.

Being at the Rehabilitation Clinic for a month was good as it took me out of my isolation; sadly I went back to that isolation again after a month of being among people.

Then it took another 6 months for us to finally get an apartment with a lift, in May 2007, we took it, but sadly when we moved in, it became clear that I could no longer use keys’

That meant I would not be able to come and go independently, now I needed an escort to go out, who would open the door.

I also needed help opening my bag, purse, followed by help in pushing me up the road, my arm muscles had weakened after a being shut up at home for so long.

I had not been able to go any where since April 2006, although I had somehow managed to get myself to and from work until June 2006.

Wednesday, November 02, 2011

View Life Positively

Angel Planells.

Funny how I am always slightly amazed at how quickly the days go by, as if it were magic, which of course couldn’t be less true, there is nothing magic about calculating time.

‘’A simple definition states that "time is what clocks measure.’’

‘’Two contrasting viewpoints on time: 

One view is that time is part of the fundamental structure of the universe, a dimension in which events occur in sequence. Sir Isaac Newton subscribed to this realist view, and hence it is sometimes referred to as Newtonian time.[3][4] Time travel, in this view, becomes a possibility as other "times" persist like frames of a film strip, spread out across the time line. 

The opposing view is that time does not refer to any kind of "container" that events and objects "move through", nor to any entity that "flows", but that it is instead part of a fundamental intellectual structure (together with space and number) within which humans sequence and compare events. This second view, in the tradition of Gottfried Leibniz[5] and Immanuel Kant,[6][7] holds that time is neither an event nor a thing, and thus is not itself measurable nor can it be travelled.’’

Time is very interesting not just to measure it, as a child, I found that time behaved differently depending where I was, at school time was always slower.

Playing with friends meant time seemed to fly by even quicker; time at school never went by as quickly, mathematic was the slowest, longest hour ever.

How often I wished it were the only way around, the maths should have been shorter and time with friends should have been much, much longer.

But I guess its all really how time is perceived, something that I enjoy always goes by faster than things I don’t like such as time at the dentist or in a mathematics lesson.

Examinations always seemed to last longer than my birthday, these days now I am older time flies by, again that is just my perception.

Time like life is all about perception, being positive gives everything a different look than being negative; I prefer to view life positively.