If Only Dreams Came True.

 

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

Today I've been quite introspective which is not surprisingly given my situation of having multiple sclerosis and curvature of the spine.

Right now I don't want to be involved solely with my thoughts, that is why writing my blog has been and still is a very important part of my daily life.

Writing my blog has been crucial for me, I think it has helped to strengthen my resolve to enjoy everything that I can while I can.

It has put me in touch with lovely people from all over the world and that has been wonderful, it is so good to be able to get to know other bloggers.

The support I've received has been quite phenomenal and I appreciate all of it very much, I also enjoy being able to support other bloggers too.

I think that being able to support each other is absolutely essential for us as human beings; we need a society where mutual aid is central.

That would be much better than the society we have right now where everyone is competing against each other.

We all do so much better when we cooperate with each other for our mutual benefit, if only this were possible what a beautiful world it would be for us all.

Right now this is my dream hopefully it is one that is shared by others and it will be reality someday soon, for now I'm going to keep the dream alive.

Sunday, 10th November, 2012 The Reality Of My Life.

 

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

It is good to have many distractions as I do, however it does not mean that I have forgotten my severe handicap.

I just do not want to concentrate purely on writing about my multiple sclerosis and how it is progressing.

As I've always been somebody who is interested in the world around me my blog reflects this aspect of my personality.

Sometimes I wish that I could forget the fact that I've become severely disabled since my diagnosis of MS in 2006, if only I could forget.

I wish I could totally forget it but I can't because it's ever present and it is becoming more and more obvious that my spine is getting badly malformed.

Even if I could walk I would not be able to stand up straight, instead I would be very crooked and I wouldn't be able to make eye contact with other people.

The de formation of my spine is making me feel a lot of pain and discomfort; I was naive enough to think that I would not have to endure anything apart from the MS.

How wrong I was, my spine is making me bend to the left, when I am in bed I don't notice it but as soon as I'm either in the shower chair or wheelchair I notice it.

Last night it was making me quite miserable thinking about my deformed spine, I hate having not only to cope with this shitty multiple sclerosis but also with my spinal de formation.

There are moments like yesterday when it all become just too much for me, last night watching the football on Match of the Day on BBC one took my mind off my situation.

I am not going to simply let myself be distracted without remaining totally aware of my current situation, but I'm not going to let my handicap rule my life.

I am more than this nasty progressive disease and my deformed spine, I am a brave resolute woman who is determined to make the best of everything and enjoy the moments.

Good Intentions.

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta  

Tilting Against The Windmills Of The Bureaucracy.

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta  

 

Finally action, after winning my appeal the 15th of May, against my application for air conditioning being turned down three times by Amsterdam Council.

Tomorrow morning at 08.00 Andre, the man from the air conditioning company will be here to start installing our air conditioning unit

How typical of Amsterdam Council to keep me waiting from the 18^th of May when I received the official letter from the Amsterdam court.

Which informed me that I had won my appeal against Amsterdam council’s refusal of the air conditioning.

Which is absolutely vital to make life bearable during the summer months for me, as well as anybody else suffering from multiple sclerosis.

Making me wait until October to get this vitally necessary equipment installed, does indicate that Amsterdam Council has no interest in the welfare of its handicapped residents.

It is very worrying that the council department responsible for handicapped and disabled city residents is so negligent in carrying out its work.

I first applied in April 2011, it is taken me one year and six months to achieve a result, and I recommend taking action to everybody in my position.

It is good to let the authorities know that just because I am handicapped it did not mean that they could push me around without a fight.

Even though I can no longer physically stand up anymore, I can still stand up for myself and fight my corner against the insensitivity and apathy of the bureaucrats.

I recommend that everybody do the same and fight for their rights, and don't let anybody push you around.

Be assertive, they don't expect disabled and handicapped people to be assertive, they think we are a pushover.

Enjoying The Present.

 
Roberto Matta.
http://en.wikipedia.org/wiki/Roberto_Matta

Friday it was 21st of September which is the Autumn Solstice and right away it looked and felt like it.

It is only 21.00 now yet it feels so much later already, the other thing that is very noticeable is how much colder it has become within a couple of days.

For the last week I haven't had to use my mosquito net during the night and day we had been central heating on this morning because it was so cold first thing.

Richie is going to look for some warm trousers for me so I don't have to spend all day covered by duvet or blankets.

It's much nicer to be able to lie on top of the bed rather than be lying in bed covered; I think warm trousers is a very good idea of Richie’s.

We are both looking forward to seeing Aud on Wednesday next week; it is really special to have her staying with us.

What's even nicer is the fact that it's not a brief visit, as Aud will be here until 6 October, and I hope she will be back quite soon after that.

Looking outside it really looks like it is the end of October and nearly November and not the 23^rd of September.

I seem to spend too much time worrying about when my old pressure wound would heal, if indeed it would ever heal and would I ever be outside again.

Too many questions none of which I could possibly answer, in fact the only effect of these questions was to upset and demotivate me.

Once I noticed while was doing to myself, I've decided to stop trying to guess what this horrible disease Multiple Sclerosis will do next.

There really is no point in my wasting valuable energy in trying to predict the future, not when I want to enjoy the present, which I do.

I'm going to leave the future for what it is something that will happen in due course, instead I'm going to concentrate on enjoying the present.

Amsterdam Council is callous and arbitrary to the handicapped.

 Jan Muller, 1957.

http://en.wikipedia.org/wiki/Jan_M%C3%BCller_%28artist%29 

Yesterday I sent an e-mail to Hans de Graaf from Mozaak, the investigator for Amsterdam Council.

In the e-mail I asked for an explanation why I had heard that he apparently sent me another e-mail on 12^th of June asking further questions, which I never received.

Apparently on 19^th of June having not heard anything from me and not being bothered to telephone me or send me an e-mail.

He decided to give a negative advice and close the case, which was then sent to the council’s legal department.

I received a brief response from him today with no explanation whatsoever just telling me he had completed his investigation.

So much for his so-called sympathetic understanding of my position as an MS sufferer.

Which he mentioned in his e-mail of 12^th of June, he even said it was not his intention to give a negative decision, but he had to make an inventory of all the information.

Today he told me that in due course I would receive a letter informing me of the Councils decision, and that was all the explanation he gave me.

Amazing given that he had told my friend more when she telephoned him, that he'd sent additional questions in an e-mail on 12^th of June which I had not replied to, so the investigation was closed by him on 19^th of June.

He also told my friend that there had been unanswered questions about our apartment, he wondered whether there was something structurally wrong with the apartment.

Apparently this is the responsibility of our landlord; I am really amazed that this is an issue, as I had answered a question about this, saying that the only problem was my having multiple sclerosis and not the apartment.

However seeing as I am communicating with bureaucrats, I shouldn't be surprised at their callous and arbitrary manner of dealing with vulnerable people such as myself.

I really wish I could expose this, but it really is difficult to get support here in the Netherlands, it is not encouraged.

When I was trapped for one year while I waited for a new apartment on the second floor of our old apartment.

 Because I could not walk the stairs I tried to get newspapers interested in my situation so that they would write about it but nobody was interested.

It was quite a shock for me to discover this, the only time there was some interest was when I could not use a newly built swimming pool which supposedly was accessible for handicapped people, but wasn't.

Then the local paper printed a small piece about it and I was in a radio programme by telephone, 5 minutes of publicity which never resulted in any action.

The only good thing to come of it all was that I started my blog in August 2006 because I needed somewhere to express how I felt about having multiple sclerosis.

Interaction With Friends.

              

Anthonio Carneiro

http://en.wikipedia.org/wiki/Ant%C3%B3nio_Carneiro 

Luckily for me today is another changeable day with loads of clouds and a cool breeze, amazingly it's already the 1^st of July.

Quite unbelievable given the cool weather we've been having since May, it really is either April weather or autumn, not summer which it’s supposed to be.

Still feel quite mean hoping for cool days, hot and humid weather like on Wednesday is quite catastrophic for me.

On Wednesday I couldn't do anything apart from look at my blog as my index finger could not function in the heat and I felt terrible.

All I could do was to open posts and save as drafts so that I could write up my notes the following day.

On Thursday there was breeze which helped me to function better than the day before, it was quite a relief for me and I'm sure for many others too with Multiple Sclerosis.

I really hate looking forward to it being cool and overcast, that really is not me I'm somebody that loves sunshine and still do as long as the temperature does not get any higher than 24° with breeze.

Our good friend Anja visited us on Friday, which was lovely it really is nice to have friends around; sadly her visit was short.

Visits with her are always too short and no wonder as it always such a pleasure to see a good friend like Anja.

We discussed the council and we agreed that if I had not heard anything on Wednesday, I would let her know and she will phone the council to enquire.

On Friday Anja’s partner Erik and their son Bosse came by to pick her up, it was really nice to see both of them again.

It is noticeable how few people we see on a regular basis, but that's how it has been for quite some time, especially since I became less mobile.

It was not so obvious when we were both still could go out to work and after work we could stroll around and enjoy this beautiful city and see friends.

Then I became handicapped and had to stop work, ever since then our world has become smaller, which we try our best to ameliorate as much as possible.

These days any interaction with friends is so good for us, it really is enjoyable spending time with other people and engaging with different ideas.

The Reality Of My Situation.

Alice Rahon 
http://en.wikipedia.org/wiki/Alice_Rahon

Right now I'm feeling pretty good, after a very productive visit with our friend Cecile.

Who came to assist me with answering questions from the councils department which investigates all applications for assistance.

It was brilliant timing that she came today, as I did not get the e-mail from the investigator until yesterday.

The questions were all about whether the air temperature was warmer in our apartment than in other apartments.

I was also asked whether we had the windows open, and if we had the ventilation vents open above the windows.

There was also a question as to whether I used earplugs to stop being bothered by street noises.

They also enquired if I had approached my landlords about my problems with the warmth in our apartment.

With Cecile help, the questions were answered very succinctly, which should leave them in no doubt about the reality of the situation.

Which is that my problems with the warm weather all stem from the fact that I have Multiple Sclerosis; which deregulates the nervous system.

Multiple Sclerosis is the problem, not whether our flat is warmer than the others, or anything to do with ventilation or earplugs.

I also reminded them that the court had found in my favour, they had accepted my arguments that the only solution for me was air conditioning.

The court had instructed the council to go away and assess how to install air conditioning not to start a new investigation.

Now I have to wait to see what the reaction from the investigator will be, fortunately Anja, who represented me in court, will be here on Friday, with a bit of good luck the response should be here by then for us to deal with.

Having Cecile reading the court letter and confirming yet again that the decision had been totally in my favour has given me a big boost.

I'm now feeling confident about the whole matter, I'm glad I decided to fight against the councils flawed decision.

It's good to take on these bureaucrats and show them that they can't get away with their actions, I hope that more handicapped people will benefit from this precedent set by my wining my appeal. n                                                                                                                   

It's Amazing How Time Flies By.

Karel Teige 

http://en.wikipedia.org/wiki/Karel_Teige

It's amazing how time flies by, it did seem like it was 15.00 1 min and the next it was 17.25, so Richie has taken the dogs for an hours play in the Rembrandts park.

They were very excited and it was awfully difficult for Richie to get their collars and leads on them, because they were jumping around barking for the joy of going out.

I'm sure right now, the dogs are running around having a brilliant time and soon they'll be back demanding their dinner, it's their favourite tonight, tripe.

Amazingly now it's 18. 31 the sun has come out and it looks very nice outside in a total contrast to the rest of the day.

The last two nights I've gone to sleep relatively easy, only to be woken on both nights by loud noises.

On Saturday it was Cyril, who started barking, Richie reckons it was a bad dream as he was still fast asleep while he was barking.

Last night it was a couple people outside, at 03.30 in the morning they, had to have a shouted conversation right outside our bedroom window.

Both nights I could not get back to sleep again, so regretfully I had to wake Richie and ask him for some THC vapour to help me sleep once again.

Both times it worked excellently and before I could count any more sheep I was asleep again.

I slept through very well, and was only woken many hours later when my arms were suddenly both very tightly folded on my chest.

And to make it worse my fingernails were stuck into the palms of my hands, this happens every day as soon as I begin to wake up.

Sadly there's nothing I can do about it, apart from trying to relax and hope that that will have an effect, eventually the tension eases, and my day can begin.

      

A Beautiful Dream

Jean Arp 

http://en.wikipedia.org/wiki/Jean_Arp

I slept very well last night, in fact we both slept so well, that we didn't wake up until gone 13.00 this afternoon.

It was quite a surprise to find most of the day already gone, and the afternoon went by very quickly too, especially because Richie had to shower me.

Still very upset about reading the article in the Guardian recently about the King of Spain going on an elephant shooting safari in Botswana.

What a moronic idiot he seems to be, but not surprising just another example of the arrogance, as well as stupidity of these inbred elites, such as the long established royal families.

Not only has the King shown a remarkable lack of judgement, but has also revealed himself to be an astonishing hypocrite.

Just before it was revealed that he'd broken his hip, while on safari, he had let it be known that he couldn't sleep at night because he was so worried about what was to become of the youth of Spain because of the economic crisis.

Yet days later it was revealed that he was on a £10,000 day safari, which was paid for by the Syrian businessman, there have subsequently been revelations of corruption and sexual intrigues to make him even less popular with the Spanish people.

Maybe the population is so angry with the monarchy that they will try to get rid of them, and revert to being a Republican country.

There was some very good news today, in the Dutch papers that the coalition government of VVD and CDA with the PVV had collapsed.          .

Which is brilliant news as the coalition was only kept in business because it was shored up by the PVV and a couple of other far right parties.

The coalition partners could not come to an agreement as to the cuts and the policies they would adopt.

We shall hear any day that there'll be new elections soon, when once again ‘the musical chairs’ will begin and whoever is sitting when the music stops will be the newly elected government.

Isn't democracy wonderful every four or five years the illusion gets played out for us all to get caught up thinking that our votes will really matter this time.

Personally I might believe that they did matter if there really was visible proof that the rich would share their wealth by paying all their taxes and the world’s vast natural resources will be shared equally among the populations of the world.

It is very important to me, that while I started my blog, to write about how my diagnosis of multiple sclerosis has affected my life, I also write about other things.

I've always been someone who is very interested in a wide range of issues, and in world affairs, having MS does not mean that suddenly my whole focus is going to be about this horrible disease and nothing else.

I refuse to be identified by only one aspect of my life, just as I've always refused to be identified by purely the work I did, I just like everybody else, have many facets to my personality.

If only we could get rid of this capitalist system, which has no need for any of us to be anything other than workers, who make the wealth of the rich to live at the expense of those that actually do the work.

Then we would not just be identified by the work we do, we could also be identified by our many skills and talents, and allow us to become fully rounded human beings in touch with our communities and the world we live in.

Right now it's a beautiful dream which I hope will happen one day, so that this wonderful world can finally really be a paradise for all of us to enjoy freely.

Maybe Not Patient Just Realistic.

Jean Arp.
http://en.wikipedia.org/wiki/Jean_Arp

It’s getting colder now, very noticeable that autumn is well underway, the last days of warm weather has gone until next year.

Funny how I hate summer ending, the long dark nights starting, and especially the clock going back, at the end of October, which always makes me feel robbed of the beautiful autumn sunsets.

This year I am enjoying the dark nights, I will even try to put up with the clock without much fuss, who knows this year it may actually work.

Writing that makes me laugh, I can’t see me suddenly not getting annoyed at losing an hour, everyday until March next year.

Can’t see myself not having a rant at some point about burocrats making decisions which have such big affects on our lives.

Maybe who knows and I have really become a patient relaxed and laid back woman, I wish that were true, I almost believe its true, but I know that is make belief.

Having Multiple Sclerosis has forced me to be something I thought, I would never be, which is patient.

Amazing for me to experience being patient, I think that is a big achievement for someone as impatient as I am.

I realised that it was pointless being impatient as I am not able to move, I can’t be like I used to be, better for me to take it as easy as I can, to adapt to my situation now, maybe not patient just realistic.