Tuesday, May 31, 2011

Tuesday At The Market.

John Banting.

We were supposed to get visitors this afternoon but they did not come by which was a shame.

I hope to see them soon, glad I phoned to see if they were coming, once we knew they were not coming we went out.

Today was very changeable weather, sunny then clouds would come over and cover the sunshine.

Luckily the clouds came and went, we went out, and I wore my fleece top, big scarf and hat and gloves so I was fine.

The brisk wind was actually pleasant especially as I was well wrapped up; the market was good, nice to see the activity.

I love being at the market, it is lovely to see so many people and to look at all the stalls, we bought a couple of things from the Greek stall.

Taramasalata and small stuffed peppers as well as a packet of flat round bread, we will get some more tasty treats on Saturday.

I am already looking forward to going to the market again on Saturday; hope the weather will be good then.

Just watching the TV now, a disturbing Panorama documentary about people with learning difficulties being badly mistreated by the staff who I hope will all be arrested and imprisoned.


Monday, May 30, 2011

Exciting Games.

The Glasgow Boys.

Today is beautiful, lovely to wake up to blue skies, sunshine, shame it was so cool, rainy while our friend Nur was here.

Last night we watched two playoffs, one between Peterborough v Huddersfield for a place in the Championship.

The other was Stevenage v Torquay, playing for a place in League One, both teams wanted to win.

Both games were good, the footballers played with passion as well as commitment, as if they were playing in the final of the Champions League.

Two exciting games, which were great to watch, Peterborough beat Huddersfield and moved up to the Championship  Stevenage won against Torquay, for a League One place.

This afternoon was the playoff between Reading v Swansea, another good game, Swansea won, they will be in the Premier League again, for the first time in 28 years.

Very exciting for Swansea, this will give a big boost to the people as well as the economy of the city and the area.

When Blackpool got into the Premier League last year it earned the local economy over 40 million pounds.

This would be so good for Swansea, they could do with the money, visitors to the city will be good for local economy.

Hopefully Swansea will play entertaining football which should make the next football season starting in August very exciting.

Sunday, May 29, 2011

Staying In Touch With Friends

Abdul Hasi Al Gazzar
We watched the final of the Champion’s League between Manchester United v Barcelona at Wembely, it was a good game.

Manchester United were totally outplayed by Barcelona, they were clearly the much better side.

Barcelona had total control of the ball from the start of the second half, so Manchester United had no chance of scoring more than the goal they got in the first half.

Barcelona went onto score another two goals, which made it clear that they had conclusively won.

After the game Alec Ferguson showed what a fine fellow he is, as despite being totally shattered by losing he went straight over and congratulated the Barcelona manager.

Sadly Nur has gone, it was an incredibly short visit, it was really good to see him again, who knows he may even find a job here.

He has promised to visit us again soon; I hope he does as it is always good to spend time with him.

We met 11 years ago, when we both worked for an internet provider called Euronet, there was a great bunch of people there.

I am still in touch with 5 of them, all via Face Book, and three also via e-mail, which is very nice all these years later, I do like to stay in touch with friends.   

Saturday, 28, May, 20011. A Pleasant Visit.

Dolfi Troost


It is great seeing our friend Nur again even if it is only from Friday late until tomorrow, Sunday, early afternoon.

Very good to talk with him and enjoy his company, he is working in Portugal right now, it sounds like a nice place for him to live.

Good weather, also food as well as friendly people all of which sounds better than where he was in England.

Especially the weather, I like the sound of a temperate climate all year round that sounds like my sort of country.

Apparently the lowest temperature is 8 degrees in January/February and never hotter than 28 degrees in august.

This sounds gorgeous to me, no wonder so many English people moved there to enjoy the mild climate.

Last night we were up too late talking to Nur, also listening to the bands on Later with Jools on BBC TV.

Today we have all been feeling tired, I can hardly tell the difference between feeling tired because of a late night or my MS.

Feeling constantly tired means that late nights feel no different, I am always tired, we all felt even more tired as the weather has become cold and wet since Thursday.  

Friday, May 27, 2011

Being Positive About My Life

Marcel Janco.

I do my best to stay cheerful, be positive about my life, I like life and seeing people, being involved.

Last thing at night; before I sleep and first thing in the morning, when I am just awake I have scary thoughts.

Where I contemplate what will happen next, as I am once again conscious of all my pain, discomfort as well as all my limitations.

These are very unsettling moments, but once the day starts I am fine, it’s the nights and early mornings when these thoughts come.

When I lie here in bed, extremely scared at what the future holds for me, then my life seems pretty unpleasant.

I am in lots of pain which I have almost become accustomed to now, what I find even worse is that my arms are so much weaker now.

Really hate that happening, not walking or being able to move is horrible enough, but feeling my arms getting weaker is even harder to cope with.

I have learned to accept my limitations over the last five years; recently my arms have become too weak for me to feed myself.

Even that I am learning to accept as long as I still have enough arm/hand function to steer my wheelchair.

Also hold my beaker, and most important of all keep typing and putting my arms around my darling Richie.

Thursday, May 26, 2011

A Quiet Day.

Paul Paun.

A quiet day today, just my physiotherapy appointment with Mathilde afterwards a late lunch, then Richie went to the shops.

He returned with a couple of bags of potting soil so he could put the rest of the plants he bought yesterday into pots.

I thoroughly enjoyed watching him doing this; it was lovely seeing the windows and the gallery by the front door as well as the balcony being transformed.

We now have many window boxes and pots full of herbs, strawberry plants as well as heaps of pretty flowering plants.

A very enjoyable afternoon today, shame the weather has become cooler and rainy, probably good it’s raining as I has been a dry spring.

Tomorrow is my appointment with Ruud from Summit to make a few adjustments so sitting will be better in the wheelchair.

Around midnight Nur, a good friend will come to stay until Sunday; he stayed with us last year while he looked for work.

Sadly he did not find a job here, he got one in England, shame as it would have been good to have Nur here in Amsterdam.

It will be nice to see Nur tomorrow night, even if it’s only until Sunday afternoon.

Wednesday, May 25, 2011

The Freedom To Determine How They Live Their Lives.

Janos Mattis Teutsch.
Today has been a pleasant day; I received an e-mail from Ruud from Summit asking me to phone him.

Which I did, we have an appointment on Friday so Ruud can make sitting more comfortable for me.

After Richie gave me a shower, dressed me, my lovely friend Anja came to visit, it
was lovely spending time with her.

Good to see a good friend, talking with her was great, we talked for hours, just what I needed right now.

First dinner, then a small glass of good Trinidad Vat 19 rum, to toast my success in getting the building free of pigeons.

Richie went to the garden centre for plants, he has already planted some, there is a big planter full of strawberry plants outside the bedroom window, some pretty flowers will follow.

Back in bed I watched the Dutch news; saw shocking pictures of people being fired on in peaceful demonstrations in Yemen and Syria by their armies.

I heard two men talking about the Hama massacre in 1982, Human Rights organisations think as many as 40,000 were brutally murdered.

The two escaped with their lives, one man’s mother died after being tortured by the Syrian army, they can never return as they were officially declared dead.

Very upsetting hearing this, despite many been killed, thousands of brave people were back out on the street demonstrating peacefully.   

I hope they succeed in getting rid of these tyrants and get the freedom they deserve to determine how they live their lives.

Tuesday, May 24, 2011

Success After Many E-Mails.

Henri Rousseau.

I was pleased that I managed to get most of the way to and from the market on my own.

The sun was lovely, especially out of the wind, the Ten Cate market is good to visit, Tuesday has always been one of my favourites.

It was good to be there this afternoon, nice to be greeted by market stall holders we know and to buy tasty treats from the Greek stall.

Yesterday I got the new lighter joystick which is easier to use, the handle is not as easy to hold as the one I had.

Hopefully I can get another more suitable handle soon, as well as get the wheelchair table support bracket strengthened, the people from Welzorg, did try to tighten the screws.

Today the table was sagging again, so will have to contact my case manager, yet more telephone calls and e-mails.

Finally all my e-mails to our landlords paid off, they have now put the anti pigeon strips up in all the guttering and above the kitchen windows, front doors and lift doors.

It has only taken me years of telephone calls, numerous e-mails to get the entire building pigeon proof; I started asking for this in 2007.

They promised this in the spring of 2008, they only did the ground floor, after more e-mails they did the first floor in 2009, the rest was done in 2010.

They did not do the front of the building, from first to fourth floor until today; it has been quite a struggle to achieve.

Yippee, brilliant that it has been done now, just before we were going to buy the anti pigeon strips tomorrow.  


Monday, May 23, 2011

A Place To Communicate Openly.

The Repast Of The Lion, 1907.
Henri Rousseau.
I read a friend’s blog today; she talked about giving a standard response when people ask her how she is.

Something, I recognise very well, especially when I had to stay in bed 24/7 in august 2008 because of a large pressure sore.

I could not cope with talking about how I was doing, I was simply too scared by the way my disease was progressing.

Frightened by how quickly I had developed such a nasty wound, which no one knew how long it would take to heal.

I often said I am ok when I was not, just did not want to get into every detail of how I was doing.

Sometimes I just wanted to get away from the whole situation, not constantly talk about my MS or how I felt.

It has taken away so much that I did not want it to take everything and dominate every aspect of my life, but of course it does.

I did learn after a few months in bed that constantly saying I am ok was pushing people away.

This got me thinking, I realised that for all sorts of reasons I needed to be open.

In early February 2009 I started to post everyday, this helped me to talk about what my life was like.

It gave me a place to communicate, allowed me to meet, make friends, give and get support, be part of the world.  

The Last Football Games Of The Season.

The Dream, 1910.
Henri Rousseau.

Today I received a mail from Lisa @ Brass & Ivory letting me know that she had found Anne’s blog.

It had been moved, not deleted as the message from Blogger stated when I tried to visit Anne on Wednesday.

Anne’s blog can be found at http://disablednotdead-anne8.blogspot.com/ I am so happy to see it again.

I am looking forward to hearing from Anne when she is able to, the shock of finding the message that it was deleted made me realise the importance of visiting friends often.

As I can never know what will happen, I can’t nor want to predict the future, living here and now is my only option.

That option has to include visiting blogs, seeing how friends are doing, I am determined that I will make time for doing this.

I have a huge blog list, I have been steadily working my way through the list, reached N tonight, so will stop now, write and post this, then watch the last football games of the season.

Sadly two clubs that I like are going down from the Premier League, Blackpool and Birmingham City have not survived.   

Really a shame, hopefully they will do well in the Championship next season and be back the one after.

Saturday, May 21, 2011

Thinking About Anne.

Naive Art. 

On Wednesday I discovered that Anne’s blog Disabled Not Dead was gone, it had been deleted.

This upset me, because Anne is a wonderful woman, she has been a good, supportive friend to me and I am sure many others.

I think is a great shame, that her blog is gone, as it is a great blog, a good resource for MS information.

I sent her an email to see if she was ok, I wondered whether Anne had been having a problem with her blog.

Then I sent a mail to several blog friends and heard from Jen tonight, that she had heard a few months ago that Anne had a stroke.

She would be offline during her rehab, hope that Anne will be fine and her rehabilitation goes well for her.

I find it very frustrating that her blog is not there to leave supportive messages, get information how Anne is 

My hope is that Anne‘s rehab goes well, and she makes a speedy recovery, I would appreciate it if anyone who knows more could let me know.

I hope to hear from the woman herself once she has recovered, until then I will be thinking about her.

Friday, May 20, 2011

The Waiting Game.

 Naive Art.
Ricardo Ponce.
Biography: He received his first formal training at the Elementary School of Fine Arts (Escuela Elemental de Artes Plásticas “20 Octubre”) and the Academy of Fine Arts (Academia de Artes Plásticas “San Alejandro”) in Havana.

He was born on September 21, 1968 in Puerto Padre, Las Tunas Province. He is a member of the ACAA, the Cuban Association of Artists and Artisans and the AHS, the Hermano Saíz Association.

A beautiful sunny day today, looking forward to going out, I hope Riche will get the hang of the temporary new joystick.

Still no news about the support cushions that I was supposed to get on Tuesday, an hour before the appointment my occupational therapist rang to cancel the appointment.

Johanneke was angry to have to be the one to tell me the bad news; luckily she had the faxes with agreement from my health insurance that we could order the cushions.

She hopes that she can persuade Agis to pay for the cushions, as per the agreement with them.

That was in March, Johanneke then asked Quattron, on 2nd April to make the support cushions.

I  was led to believe this would take two weeks, finally some weeks ago I heard they would be  here on 17th may.

Feeling let down by them all, February we had an appointment with a representative from Quattron.

Dennis told us once Agis gave the go ahead they could be made in two weeks; Johanneke said getting the ok from Ages was a formality.

Now Agis and Quattron have a disagreement and until that is resolved no support cushions for me or anyone else.   

Thursday, May 19, 2011

A Good Result This Time.

Welzorg finally visited yesterday, after promising me a quick appointment on 30 March, which did not materialise.

The delay was because of ordering the parts and then plan in the appointment into busy schedules
Shame that they did not communicate with me that would have been better than leaving me thinking I had been forgotten again.

I made it clear, that if the substitute joystick/controls did not allow the chair to recline that I would expect everything to be replaced.

Luckily I had sent e-mails about being unhappy, that they planned to take my wheelchair for 6 days.

They then said I could keep the wheelchair, but this would be useless without the controls, no way of turning it on.

Reclining is important to be seated properly, and tipping forward for me to use the Motomed, after many e-mails, Welzorg finally agreed to install an alternative control box.

This resulted in a good experience with Welzorg; they installed an alternative system that allows Richie, not me to operate the wheelchair.

It was a good result thanks to pushing for a better solution to the one Welzorg initially offered me, shame they could not have fitted the new joystick here too.  

Wednesday, May 18, 2011

Visiting Friends Is Good.

Brightly Coloured Burdwns.
Brian Kershisnik


From October until December we were involved with Spike’s illness, his eventual diagnosis of spinal cancer on 18th November and euthanasia 18th December.

Then pneumonia on 9th January, I finally recovered end February beginning March, I did my daily posts, nothing else.

Since I have been spending more time in my wheelchair, and not been using my laptop as much.

It’s enjoyable, sitting in the wheelchair; the downside is that I have not been able to visit blogs.

Last Wednesday when Blogger was unavailable, the thought I might not be able visit my friends was shocking.

So decided to go and visit while I can, I have been enjoying visiting blogs.

Discovered the sad news that Tessa @ Aerial Armadillo died in December, I did not have much contact, the occasional visit and e-mails.

Enough to know Tessa was a wonderful woman, a talented artist, who will be missed by all who knew and loved her.

I also found that Anne’s blog Disabled Not Dead was gone, it had been deleted, which I think is a great shame as it was a great blog, a good resource for MS information.

I hope Anne is doing well, so far I am up to the letter G, lots more blogs to visit, looking forward to saying hello and reading many posts.

Tuesday, May 17, 2011

Time We Cured The Disease And Not Just Treat The Symptoms.

Flight Training Instructions.
Brian Kershisnik.
It is worrying that currently so many more people are being medicalised.

There is a tendency to diagnose the individual as "sick" when the sickness is the capitalist system. 

The pain is being treated: not the cause of the pain.

Globalisation has allowed companies to move away from countries where workers have won some concessions from the bosses.

They are free to exploit labour that is crushed by corrupt repressive regimes and where no environmental constraints are applied.

Whole communities have been dumped, purely for short term aims and to maximise profits..  

Millions of people are without work or hope of improving their lives or the lives of their children, neither with perspectives for a future. 

Doctors treat their symptoms of depression with drugs and people self medicate with alcohol and recreational drugs.

It has become the way of life.

Whilst the miners in China suffer dirty dangerous working environments and are denied even the most basic self determination ex miners in Britain live a sad pilled up half life.

It is a sick system. 

Capitalism is sick, it makes our planet sick and it makes us sick. I think it is time we cured the disease and not just treat the symptoms.

Monday, May 16, 2011

All You Need Is Friends.

Brian Kershnik, 2005.

Its been raining all day; my physiotherapist said she would by choice have stayed at home.

I hope tomorrow will be a better day, feel quite optimistic that it will be a nice day, although it is still overcast now.

 After my physiotherapy session I called a good friend, Eva, who came over to visit us, very nice to see her as she is moving to Brighton, England tomorrow.

I am going to miss her very much, even though I never saw her, as much as I would have liked to, just knowing she was nearby was good.

Eva is a wonderful woman, I hope she has a good time in Brighton, and finds work as well as somewhere to live.

Miss having friends like Eva here in Amsterdam, I often feel like I am missing a special best friend here.

My best friends are scattered around the world, guess that is how it is, you meet, then life intervenes and people move.

I did too, left England to come here in 1981, that’s already thirty years ago in August this year, not all of which went by quickly as it seems to now.

Feel more positive after Eva’s visit.

Sunday, May 15, 2011

A Great Relief.

It was a relief to get back into my blog after 21 hours of being locked out and not knowing why.

Very upsetting and frustrating, I thought for awhile that I had been locked out of my account.

There was very little information coming from Blogger, the only information forthcoming, was Blogger was not available.

I think that a short message letting everyone know right away that there were problems during maintenance work would have been reassuring.

I found it very difficult to cope, what helped me was my two other blogs, one at Blog.com,  the other on Word press.

Both called Living My Life With MS, both started when I ran out of space for pictures and sadly could not buy extra space with PayPal.

Blogger only allows payment with credit cards, something I do not want, I do not want to get hooked into the world of credit.

So the only thing I could do was find a couple of blogs, however I did not just want to be able to upload pictures so have my daily posts on three blogs.

This meant that during the 21 hours that Blogger was not available I could write my post and publish in Blog.com as well as on Word press.

My first blog on Blogger is the one hat means the most to me, that is where I have met so many wonderful people and made such good friends.

Saturday, May 14, 2011

Its Been A Pleasant Day.

Las galas de Nadja, 1950
Eugenio Granell.

A relief when after 21 hours Blogger was accessible again; even more of a relief there were no problems today.

It’s an exciting day; it is the Football Association Cup Final between Stoke v Manchester City.

Richie and I want Stoke to win, not the millionaires club Manchester City, the other big game is Manchester United v Blackburn Rovers.

Really want Blackburn to win, but think not, Alec Ferguson, the Manchester United manager will want to win.

This will be the 19th time his team have been top of the Premier League, winning today will make that a reality.

We watched the game between Stoke v Manchester City, sadly Stoke seem to have got stage fright as they hardly played at all.

Manchester City won 1-0; it was not the game we hoped for, a typical FA Cup Final, not much happening.

Manchester is a happy city tonight as Manchester United also won by getting a penalty.

Manchester City fans are happy tonight; this is their first FA Cup trophy since 1969, 42 years ago.

After the football we watched Dr Who which was very good, a great series, tonight it was exciting and a touch worrying, a perfect episode.

Now it’s the Eurovision Song Contest, the yearly kitsch pop competition, somehow almost compulsory, Azerbaijan have won, unbelievable, its been a pleasant day.  

Friday, May 13, 2011

A Sad Friday Without My Blog On Blogger.

Roland Penrose.

Yesterday late I suddenly could not access my blog on Blogger that was most disconcerting, I assumed as there was a message saying unavailable but that it would be back later.

How wrong of me to think that whatever had prompted the lack of service would have been resolved by today.

Sadly this is not the case; I keep getting the message that Blogger is not available and no more information than that.

This is tremendously frustrating, right now the only access that I have to my blog is read only.

Yesterdays post, although it was published is not visible and all my posts from 2006 to yesterday are out of my reach.

I can not access my blog for the first time since I started it in 2006 because a newly built swimming pool was not accessible to people in wheelchairs.

Despite getting money, also a European subsidy, they took the money and then did not make the main entrance accessible.

Instead they were still building an entrance at the back of the building for the handicapped to use the pool.
When I did finally get in I found a building that was not set up for the needs of people in wheelchairs.

Very disappointed about the pool, the good thing is that it stimulated me to start my blog and given me 5 years of pleasure as well as friendship and support from other bloggers.

I  hope to access my blog on Blogger soon.

Here is the information from Blogger:
Blogger Status
Friday, May 13, 2011
To get Blogger back to normal, all posts since 7:37am PDT on Weds, 5/11 have been temporarily removed. We expect everything to be back to normal soon. Sorry for the delay.
It took 21 hours and suddenly it was back, yipee.

Thursday, 12 May, 2011. The Medicalisation Of Society.

Pedro Friedeberg.

Yesterday Richie got me to listen to Peter Breggin, an American psychiatrist and critic of biological psychiatry and psychiatric medication.

‘’In his books, he advocates replacing psychiatry's use of drugs and electroconvulsive therapy with humanistic approaches, such as psychotherapy, education, and broader human services.’’
He was talking about the wide reaching grip of the pharmaceutical companies on our society.''

Peter Breggin MD Psychiatric Drugs Part I

‘’His most recent book, Brain-Disabling Treatments in Psychiatry, discusses medication spellbinding (in which patients who are doing worse after treatment fail to see that they are doing worse or recognize why)’’

Peter Breggin also discusses:

‘’The adverse effects of drugs and electroconvulsive therapy (ECT), the hazards of diagnosing and medicating children, the psychopharmaceutical complex, and guidelines for psychotherapy and counselling.’’

Listening to Peter Breggin talking about the medicalisation of society is not pleasant, it is very worrying, especially the idea that this is so widespread.

I recognised so much of what he said, thinking about the recent trend to label kids as having attention deficit hyperactivity disorder.

These kids are then given medication, which has been tested on adults, not on children.

Stimulant medication are the medical treatment of choice. There are a number of non-stimulant medications, such as atomoxetine, that may be used as alternatives. There are no good studies of comparative effectiveness between various medications, and there is a lack of evidence on their effects on academic performance and social behaviors. While stimulants and atomoxetine are generally safe, there are side effects and contraindications to their use. Medications are not recommended for preschool children, as their long-term effects in such young people are unknown. There is very little data on the long-term adverse effects or benefits of stimulants for ADHD. Guidelines on when to use medications vary internationally, with the UK's National Institute of Clinical Excellence, for example, only recommending use in severe cases, while most United States guidelines recommend medications in nearly all cases.’’

From http://en.wikipedia.org/wiki/Attention_deficit_hyperactivity_disorder

The diagnosis of ADHD is a common one these days, which I think is overused these days.

To label any kids that does not conform or quite often are simply not getting enough intellectual stimulation is not good.

I recognise that from my own experience in Junior School where there was a shelf with books for us to read.
When I quickly finished them and asked for new books, my teacher told me to read them again.

There is a kid we know who is a very intelligent boy, his school did not understand him or even try to.

They advised his mother to have him assessed by a psychiatrist, whose diagnosis was that the boy did not have learning difficulties; he was in fact of above average intelligence.

I wonder how many other kids are also seen as having learning disorders, when they just need intellectual stimulation.

For more information about pharmaceutical companies and the medicalisation of society visit these blogs:

Stephany @ Soulful Sepulcher

Stan @ Is Something Not Quite Right With Stan - A Mental Health Blog

Wednesday, May 11, 2011

The Alliantie Are Uncaring Landlords.

Pedro Friedeberg.

Pigeons woke me trying to nest in our window box, the dogs did their best to persuade the birds to go away, which they do as soon as they jump up at the windows.

Sadly our landlords have let us down once again this year, and have failed to install the anti pigeon devices.

Which means there are pigeons nesting in the whole building; outside the smell of pigeon shit is overwhelming.

It is a constant battle chasing the birds away, amazing how our landlord never does anything except take our rents, which they increase yearly.

This building is supposed to be accessible for  the handicapped, sadly this is not true, even before I had my electric wheelchair I could not visit my neighbours.

A heavy glass door needs to be held open, they could have installed an electronic opening system, like there is for the main entrance.

The lift is not fire proof so if there is a fire all residents in wheelchairs, would have to be lifted out of the window by the fire brigade.

The walkways are made of metal slats so that rolling over them triggers off spasms and the button for the life is inaccessible in a wheelchair.

To top it all I can not sit in the sun in our backyard, because the ground has subsided enough to prevent me rolling outside.

Tuesday, May 10, 2011

A Snapshot Of My Life.

Pedro Friedeberg.

Yesterday morning, there was briefly no sunshine, by the late afternoon the local bar, had many people sitting outside enjoying the sun.

Today is the same; the sunshine seems to be getting brighter, as the clouds move away revealing blue skies.

Last night I felt that my arms were very stiff, so took a 2 mg diazepam, which relaxed my arms.

I slept very well, as the diazepam helped to relax me enough to stop me worrying about my arms.

Waking this morning was also relaxed as my arms were not quite so painfully cramped up, as they often are.

Doing my arm exercises, pulling myself off the mattress, even if not as far as I used to do previously is good.

These exercises are crucial; I feel that they help to keep my arms functioning so that I can keep typing.

Which is so important for me to do, writing everyday gives me a lot of pleasure, since doing this daily since February 2009, I have realised that I like writing.

I enjoy it, doing it daily has made me good at it, these days I write short pieces, each one is a snapshot of my life with MS.

Monday, May 09, 2011

Sitting Is Great.

Pedro Friedeberg.
Lying in bed for two years while my deep pressure wound healed, this ruined my muscles, because I was not allowed to sit upright in bed.

Too much pressure on the wound, at the time no one mentioned that being in bed for a long time could damage my muscles.

Little did we know that the wound healing would cost my torso muscles, we were so focussed on the wound.

That was the most important thing for us both that kept us busy from august 2008 until august 2010.

There were a few times when the wound seemed to have healed, I sat for a couple of days only to have to stay in bed again.

Very difficult for us both, a horrible situation, last year the wound opened up again in January, it healed on 27th April.

I was sitting when Steve visited us on 13th May, but had to stay in bed once more 3 days after his visit for a month, in June could sit for another couple of weeks.

Then the wound opened again, I was back to bed for a few weeks, then I could sit again.

The last time was at the end of July; luckily it healed on 6th of August 2010 and has stayed that way, so finally I could sit, which was great.

Sunday, May 08, 2011

Laughing Helps Me.

Pedro Friedeberg.

Clearing my mind of thoughts before sleep is difficult for me, it is amazing how no matter how relaxed, I might be, still a though comes.

Suddenly being relaxed goes away, like being woken, with a wet flannel slapped across my face.

I hate those moments; it is frustrating that suddenly something I had not thought about all day, maybe all week is suddenly there.

The thoughts are either about, making appointments or remembering I need to contact my dentist.

Need to find out that I will be able to be not only, lifted from wheelchair into his reclining chair, but also held in place with straps.

The last time I went there in May 2008, I could still sit up, my torso muscles worked, they don’t work anymore.

I am sure that something can be worked out, I know the reason I have not made an appointment is because I am waiting to hear from Welzorg.

When will they take my wheelchair for 4 days, to replace the joystick, which takes aprox one hour, I hate waiting for this company.

Frustrating thoughts about events that I hope to influence, better than almost being asleep and thinking about events I can’t influence, like how my MS is progressing.

Sometimes switching those thoughts off and thinking something totally different helps such as a joke, laughing usually clears my mind and relaxes me.

Saturday, May 07, 2011

Determined To Make The Best Of Being Alive.

Homage To Accountants.
Pedro Friedeberg
The days are going fast as they always seem to in the spring; the days are getting brighter and longer.

Nights are still long for me, luckily I have been sleeping well, but there is still too much time to think about my condition.

When Richie turns the light off, often that seems to switch on my thoughts, this is when I focus on things I think I should have done.

Often these are almost fabricated worries, as if to keep me thinking about something other than my MS.

In the mornings feeling my legs spasming as well as the painful stiffness in my arms triggers off gloomy thoughts.

I hate waking up and being confronted daily with my stiff arms, my pain, everyday it hurts to realise again what I have to live with.

Lying here this morning half awake, aware straight away what my limitations are these days is not easy for me.

Being able to pull my head and a bit of my shoulders off the bed using the trapeze above my bed is a huge achievement for me.

Not being able to do things like sit up, or hold my torso upright or even eat my food is very difficult for me.

I do my best to rationlise and am determined to make the best of being alive.

Friday, May 06, 2011

Shame No Care From Welzorg.

Pedro Friedeberg.

Today is a warm sunny day, Richie has just returned from doing the shopping for the weekend.

No news as yet about airco or joystick, I know MOZAAK informed me last Friday, that they needed 8 extra weeks to investigate my application.

I hope of course that they will be able to conclude their investigations, before the end of June, as I  need the airco now because of the warm weather.

Hopefully Welzorg will finally get in touch with me, and give me the ‘quick’ appointment they promised on 30 March.

No wonder they have lost their monopoly franchise to supply mobility aids to all cities and towns in the country.

Their name means good care, something that I have not experienced from them, since my first appointment in August 2006.

While I was a month in the Rehabilitation clinic in November 2006, I only heard complaints and saw many people struggling with inappropriate mobility aids.

From my first phone call and appointment with them, I was immediately treated with rudeness and a total lack of care or respect.

They never responded to my needs or seemed aware that I need swift action because of my MS, they consistently ignored that.