Tomorrow Is Another Day.

 

 Roberto Matta.

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

The weekend is flying by as it always does; it is nearly 20.00 on Sunday already which given that time is flying by feels like it is going at double speed this time.

Last night we were up late to watch Match of the Day on BBC with all the football games from the Premier league.

Following that was the Football League Show which shows all the football games from the Championship as well as League One games.

Afterwards we got talking and totally forgot track of the time so we stayed up much longer than we would ever have intended to do so.

Consequently we slept until quite late today as we were both very tired, it was a shame as both of us had planned things we wanted to do today.

Never mind tomorrow is another day so I'm not going to reproach myself about today, what would the point be in that.

would be no point and the only thing it would achieve would be to make me feel miserable and Richie too.

Instead of wasting my time beating myself up I'm going to look for some artwork after which I will publish this on my blog.

Then I'm going to relax and enjoy the evening, tomorrow I will get on and do the things I'd planned to do today, right now I'm enjoying the evening.

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.

Concentrate On Enjoying Life Now.

Marleen, Cyril, Tina

        

 Here it is another grey day, the weather in England is dreadful, they are experiencing high winds and torrential rain.

We are getting some high winds and rain, plus it is cool enough to have the heating on in the mornings and evenings.

Last night I got woken up several times each time finding my arms clenched tight over my chest and my fingernails digging into the palms of my hands.

No wonder that I woke up, and each time it took ages to get my arms back down by my side.

My spine is getting more deformed, it is more difficult to get me sitting straight; I did not notice it is as much in the wheelchair.

That’s due to the excellent support I get in the wheelchair, which I don't have in bed so I need regular adjustments.

I've been enjoying the football; it has taken my mind off my situation and given me something else to focus on.

Which is good as the stress of having to fight for everything has been getting to me.

I'm constantly either pushing for something to happen or I'm waiting for it to finally happen.

For example I've been waiting for Kees van Roekel, from Welzorg to come back since the beginning of March.

Plus I'm waiting to hear how the new application for the eye operated software is faring at the health insurers Agis.

It was made after an appointment with Dr. Janneke Stolwijk and my occupational therapist, Maurits, to discuss why the first application did so badly.

The advice they had previously included with the first application for Seetech was not up to date so they promised another.

They wrote a new advice, that I needed to be able to operate the IPaq with Seetech, as I could no longer use either the touch screen or the button.

My health insurers do not see the necessity of my having three dictionaries included, I will have to buy the German one myself.

I was amazed to be informed by the salesman from RTD Het Dorp that the German language dictionary only cost €158.

I thought it was going to be more, strange that my health insurers objected so strongly to this, major expenditure.

What is especially strange about the objections is the fact that they say they will assist people to maintain their quality-of-life.

In my case this means being able to communicate in three languages, as I was brought up speaking German and English, and I taught myself Dutch when I moved here in 1981.

In my case this did not count, all they were interested in was spending as little as possible.

They also objected to voice recognition, I guess this is also too expensive for them, strange as voice recognition only costs just €150.

They were quibbling about €308 which is why they turned down the application ‘from HES, last November.

I still haven't heard from the council when they will install air conditioning that I need so desperately.

The best thing I can do is to try and put it all out of my mind and concentrate on enjoying the here and now.

A Harmonious Neighbourhood

Thomas Bak
http://en.wikipedia.org/wiki/Thomas_Bak

Today is another pleasant day, the weather is very changeable one minute the sky is blue and the next it is full of clouds.

Then a few more moments go by and the clouds are gone only to come back again.

It's been nice seeing sunshine and once again hearing happy sounds of children playing outside.

What is also good is that Mentrum; the people across the road seem to have decided that it would be better to have a friendly relationship with the children on the playground.

This is much better then a few weeks ago when Richie and I witnessed one of the workers literally screaming at the kids because a football bounced against the door.

It was not nice to see, she actually told the kids that they should play somewhere else, which they did.

The place they found to play was the road, not a safe place for children to play, which is why there is the playing area, is there specifically to keep the children from harm.

I'm glad that a friendlier attitude is now being shown to the children; I was planning to get in touch this week, to let them know what I thought of the children being chased off their playground on to the streets.

The other thing I was going to mention is that all day long there is a group of people hanging around on the children's playground smoking.

Not a very good example for the kids, this is something I may very well still ring up and speak to them about this, I'm sure that there must be somewhere else for the smokers to congregate.

It must be possible for everything to be organised so that all the people are happy, much nicer for people to cooperate to achieve a harmonious neighbourhood, it is better for everybody.

Spain Won The World Cup OLE OLE OLE.

]
Max Ernst.

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

Well Netherlands lost the World Cup 1-0 to Spain, 200 + neighbours were out on the street to enjoy the event.

They were making a lot of noise with their vuvuzelas; but went very quiet at various points in the first half when Spain totally controlled the game.

The Netherlands could not get the ball and when they did have it they gave it away again.

Spain played good football whereas the Netherlands seemed to rely on kicking lumps out of their opponents.

Real shame was hoping that they would play well as a team and play good fluent football with imagination and flair.

Instead of playing football, it felt like a nasty fight with Dutch players only having one tactic which was violent tackles.

One player got sent off but there were two others that should have also been sent off, they were lucky to stay in the game.

While Spain is enjoying their victory, I hope that the Netherlands team are reviewing their performance last night.

What they need to is to get back to playing beautiful football with flair and imagination like they can do if they try.

After the defeat the street party really got going until 2 am, it would have been until 4am if they had won.

Today it is grey and overcast and it has been torrential rain and no sun now, yet it is still quite warm.

Wonder if that is the end of summer like in 2000 when The Netherlands lost the European Championship to France and what had been a glorious summer ended abruptly.

Just asked Richie to turn the fan off so I could check out whether it was cooler today and it is a touch cooler.

I am hoping that today is an easier day for me as the last week really took it out of me.

Especially Thursday and Friday which were very muggy days, each night Richie had to take my drenched t-shirt off.

Then he sponged me off and dried me and put a clean t-shirt on me, which was good.

Despite the grey sky it is a pleasant day, nice to have a day where I am not struggling to sit up and am not floppy due to the extreme heat.

Lovely not be dissolved in sweat and unable to do much like this past week, feel much better today and my index finger is working again.

It is raining again a deluge, with a lovely breeze which is a pleasant change, am enjoying it.

Pleasant Saturday.

Welsh Art.


It has been a glorious sunny day here in Amsterdam I actually felt very warm when I woke up.

So warm that my first thought was that the catheter was blocked again but Richie reassured me that everything was fine and it was the weather that was warm not me.

The temperature really has gone up now which is nice, just hope it does not become too hot too quickly as there is nothing worse than sudden huge changes in the temperature with MS.

Think we need to get a better fan, so when it gets as hot as it did last year we can keep cool; found out last year that ventilation is a big priority for me.

Noticed that I was both excited and quite worried when I heard on Wednesday that I could sit in the wheel chair again.

After my shower this morning I sat for the second time in the wheelchair which was good, it was the anticipation of sitting again that had worried me and not the event itself.

Sitting in my wheelchair to use the Motomed was much better than sitting in the shower chair which gives me no support whatsoever.

In the shower chair I lean very badly to the right, Richie tries to make this better for me by putting a pillow between me and the arm of the chair which helps a little bit.

The wheelchair is better for me as the back has been modulated to give me the support that I need

Enjoying sitting in the wheelchair even more this time than last October, guess the extra time in bed has made me very keen.

I sent yet another mail to Online yesterday, with an overview of all payments that I have made since the beginning of the year.

They insist that every month they try to get the subscription by a direct debit on Richie’s account, which is weird as they have not had a penny since 2006 from any other account but mine

Spent the afternoon relaxing, did not start writing this until about 9 pm after enjoying watching the football.

It is nearly the end of the season so all the games were fast and furious which made for good watching.

Found myself hoping that Manchester City would beat their big rivals Manchester United, it was a huge battle and looked like it would end in 0-0.

Then in the last minute Paul Scholes got the winning goal for Manchester United, their fans were very happy, while the City fans looked gutted.

It really was a tremendous game which was good as so often local Derbys can be dull as one team will get hold of the ball and effectively shutthe game down.

Brilliant that today was different, not looking forward to my team Arsenals game tomorrow, as there is alot riding on these last games
.
Hope that I will be able to watch tomorrow, as quite often I use the laptop screen to hide behind but not tomorrow.

Well time to find pictures and post this before Match of the Day on BBC 2 which I am going to enjoy without the laptop in front of me.

Spring Flowers.

The flowers yesterday really brightened up the room; they are doing the same today.

Darling Richie made my day getting the mini daffodils.

They are a flower that I am very fond of, love seeing daffs in March; they are for me the personification of spring.

He put the spring flowers and the lavender by the window in the front room so they could catch the morning sun.

That was successful, even though there was not much sun when Richie opened the curtains at this morning.

There was a glimmer which was the first signs of the daffodils in the trough starting to bloom.

Think the daffodils should be flowering by Wednesday next week which will be charming for Easter weekend.

That reminds me of Easter two years ago, when I wanted an Easter egg, but kept saying to Richie ‘ach don’t worry about Easter egg as a bar is much better value’.

What I did not realise was that I kept telling Richie this and he quickly came to the conclusion that I desperately wanted an Easter egg.

If I had said it just the once, Richie may have believed, but after he heard me say this more than 5 times, he thought it was abit of a giveaway.

So he got one, a Green and Black’s egg which was very pretty and looked good and tasted even better.

What I especially like is the fact the chocolate is fair-trade which means workers and not slaves.

Before I take a bite into a chocolate bar, I do stop to think about who grew the cacao that made my chocolate bar.



If it is not Fair Trade chocolate then it is possibly one of the more than 15,000 child slaves who work on cacao farms in West Africa.

Does that chocolate still taste good? No it won’t, certainly not for me, so I will not buy it.

Lucky for me there is a whole food shop 5 minutes away from our apartment so I can enjoy a couple of cubes of chocolate daily.

Looking forward to watching the football later on the TV, it is getting very exciting now as the end of the football season approaches rapidly.

Hope that my team, Arsenal do very well, but will have to wait and see.

In the meantime I am enjoying today.

Occasional Brilliant Flashes of Sunlight.

Feeling a bit better, my nose is not running nor have I got a thumping headache or an added tightness round my chest.

Nice to be rid of that 'I feel like I'm dying' sensation, good to not have to be taking paracetamol regularly through the day.

Think it will be this time next week before all the symptoms of the cold have really gone and I am ok.

Nice that I can breathe better today, it was dreadful trying to breathe through my mouth and eat or drink.

Have never had to give this much thought before, what a nasty shock when I had such problems breathing and swallowing at the same time.

The only way to cope is to do everything slowly, which is no big deal, but did take me a moment to get the hang of it.

Weird to have to swallow so carefully but the alternative was not pleasant, noticed that getting a drop of liquid in the lung takes ages to clear.

Sleeping was also not so easy either, again breathing was not easy, could only take small breaths through my nose before I would have to breathe though my mouth.

Getting very fed up of hearing about Cheryl and Ashley Cole on radio stations and reading about them in the newspapers.

These shock horror stories about what celebrities do when they are away from home such as John Terry, Tiger Woods and now Ashley Cole really are so boring.

Shock horror young over paid and over pampered stars have sex with willing participants.

Who cares as far as I am concerned all I am interested in is the sport and not what they do in their own time.

Golf to me is not a sport that I have any real interest in, not like football, used to love playing hockey at school.

Playing in a team, operating well and being able to use the skills and abilities of the members of the team is what makes team sport so interesting.

Liked that aspect in my work on the Service Desk and at the Help Desk both jobs were as part of a team.

Good to know who your fellow team members are and what their qualities are, the team now is smaller.

But nonetheless effective, I know that Richie will always find a solution to most problems that is very comforting indeed.

Love to see him look at things very holistically and come up with solutions, this is so very reassuring for me.

Going to stop now so that I can find pictures and then popst this piece for today, nearly forgot to mention that my friend Toos will be around for a quick visit of 30 minutes.

Be nice to see Toos at 15.30.

The weather is changeable today, mainly grey and misty with occasional brilliant flashes of sunlight.

Sunny Saturday.

This cold has me feeling pretty crap today; notice my index finger is already not working too well.

Also have been noticing that my body is slumping even more, this is as a result of spending so much time in bed.

It is a double edged sword, have to stay in bed until the tiny tear in my skin has healed over, can’t sit in my wheelchair until then
.
Really need to sit soon as it is not good for me to spend too much longer in bed, have been in bed since August 2008.

From 29 October I could finally sit again and move around in my wheelchair, and typically just as I was hoping the weather was getting milder and I could to get out Richie discovered a tiny tear in my skin.

Now I am trying to wait patiently while my body is noticeably deteriorating, it is very difficult to see this and to keep being positive.

Doing my best to do both, some days are easier than others, this cold has wiped me out, luckily I slept well last night thanks to thc and eucalyptus oil.

Managed to go to sleep and stay asleep until the rubbish containers were being emptied into waiting trucks.

This always happens at 7.30 to 8 am on Saturdays, was pleased I went back to sleep again until 10 am.

We needed the extra sleep because we stayed up late to watch the Skeleton Bob Sledge, Amy Williams gold won very well.

All the skeleton bob sledge competitors were excellent, what surprised me was that I enjoyed this sport when the Luge Bob Sledge really worried me.

Going take it very easy today, must remember to take paracetamol and drink lots of liquids and eat fruit, hope to be better by Thursday next week.

Well the clouds have blown away and the sunshine is back, it makes everything look so munch better.

I intend to relax and enjoy he sunshine and the radio, as soon as Richie is back from he market we will be watching football on the TV.

Have a good weekend everyone.