Monday, October 31, 2011

Looking Forward.

Angel Planells.
Today it was dark at 17.20 and now at 18.35 it looks like the middle of the night, tonight Richie says there is sickle moon.

 I wish I could see it too, sadly our only view is of buildings, I did catch a glimpse of a star, Jupiter, over the roof of the Fijnout theatre when I was being hoisted out of my wheelchair.

Its Halloween, I recall it was called All Souls in Trinidad; people visited the graves of their dead then, not knocking on stranger’s doors for sweets.

Here it is a very quiet evening, nobody seems to be out and about, and no one has knocked on our door or rang the doorbell, not one.

I think that Halloween has not caught on here, which is a good thing, as it’s become a huge commercial event, just like Christmas.

Christmas has really only taken off here in the Netherlands since the late1990’s, presents were given traditionally on 5th of December, Sinterklaas, or Sint Nicolaas (Saint Nicolas).

The clock going back yesterday means it is not long now until our 10th wedding anniversary on 19th of December three days before the Winter Solstice.

They are my favourite days, I love how quiet it is, no bird sounds in mid winter, and it feels like being in a beautiful bubble from 19th to 31st of December.

I am looking forward to the delights of December and in the New Year of the return of more daylight hours, as we progress.

Sunday, October 30, 2011

A One Off.

Greta Knutson.

I woke up slowly this morning and for the first time in ages, was not instantly at the mercy of a series of leg spasms, as well as my arms, torso muscles painfully contracting.

Today I lay quietly, savouring being able to enjoy the experience again, one I have not known since my MS progressed so quickly after diagnosis in 2006.

Quite wonderful not to endure so much discomfort, pain, just because I woke up, no other reason than that, I woke up.

Today was a wonderful bonus, one I don’t know if I will ever witness again, I am glad this morning happened, if it never occurs again, no worries.

Once again was good, just to see how that felt, to feel the difference between gently waking not being forcibly woken like I always am since 2007.

Not much I can do about how I wake up, what I can do is to move on as quickly as I can, and look to enjoy the day, today.

I have really enjoyed the day today, last night the clocks went back an hour, so it’s the first day of winter time, it was dark at 17.30 this evening.

I am looking forward to the nights drawing in even more, soon it will be dark at 16.30 and it will be Winter Solstice and Christmas.

The quality of quietness is very striking at this time of year; it is very noticeable that there are no bird sounds in the mornings.

Saturday, October 29, 2011

Keeping In Touch.

View to the universe
by Nikos Engonopoulos

Today started suddenly with my arms tensing up painfully tight as soon as I woke up, even though I lay extremely quietly, trying to stay relaxed.

Nevertheless my muscles contracted, it felt like I was locked down, I felt totally restricted, I imagine that a straitjacket must feel like that.

It is so difficult for me to keep quiet when I get woken so painfully, I try desperately every morning to relax, but end up yowling, like Coldplay, except i am not a stadium band.

Hoping each day that I might be able to relax my muscles and avoid the painful muscle contraction, so far this is just wishful thinking.

Each morning I of course don’t succeed in my ambition and instead of being able to relax; my whole body gets totally tensed up.

It takes minutes each morning before the muscles stop contracting and the intense pain starts to fade.

As soon as it did, I felt better, felt even better after kissing Richie, that’s the better way to start the day, with a kiss not a shriek of pain.

After that the day got progressively better, in the afternoon I enjoyed a Skype session with Cari, a dear friend in Wales, she used to live here until 1994, I still miss her, nice to talk with her.

So glad we have kept in touch, I lost all my childhood friends when we left Trinidad, so know how important friends are, since then, l like to keep in touch with my friends.

Friday, October 28, 2011

Enjoy The Evening.

Marcelino Vespeira.

Every day is different, or so I thought, however again today, I find myself waiting for Welzorg, Richie banged into the door frame and the bracket supporting the arm rest sheered off.

I phoned Welzorg right away and have been waiting since 12.30; I have rung a couple of times, nearly lost hope only for the doorbell to go and the engineer from Welzorg to arrive at 15 minutes before 17.00.

I am so happy that someone could get here I was told they could send someone between 13.00 to 17.00.

Sadly the engineer hasn’t got the exact replacement for the bit that broke off, so he has improvised a temporary fix and ordered replacement parts.

What a tremendous relief that it’s done now and I can get into the wheelchair and spend the evening in the front room.

Before today’s wheelchair drama, I had good appointment with Kees from Aquarius.

Kees will use the same technique Summit used to make my wheelchair seat, hopefully this happens soon.

All I need now is to get better wheelchair steering, so Richie has better control of the wheelchair and going out will be safe.

First I will get Richie to put me in the  wheelchair, so I  can enjoy some time out of my bed, this evening.

Thursday, October 27, 2011

Life Became Better Right Away.

Marcelino Vespeira

Richie and the dogs have left for fun in the park, which the dogs will enjoy; I bet they will devour their tripe dinner happily on their return.

Soon as they left, I started to feel uncomfortable, instead of it going away, it got worse and now I feel dreadful, which I am trying my best to ignore.

Trying to breathe slowly and relax, in the hope nothing happens until Richie is back, and can help me, a comforting thought.

Despite feeling awful, somehow I am managing to keep calm, hope I can concentrate on the radio, writing my post.

Very difficult to ignore, as it is making me nauseous, I am not looking at the clock, too preoccupied and totally focussed on one thing, my guts,

This is not the post I intended to write, not easy to be thoughtful when I am feeling so terrible, really not easy to be thoughtful when in such discomfort.

With abit of luck Richie will get back soon and help me to feel better, no sooner had I written that, when the door opened and my darling Richie and the dogs were home

It turned out there had been a tiny kink in the catheter tube, so no wonder I felt so bad, what a huge relief when the catheter bag started filling up, no wonder I felt so unwell.

Life became better right way

Wednesday, October 26, 2011

Strange Experience.


Karel Teige. 

Last night I had a strange experience, I woke up in the middle of the night calling for Richie to put the bed, into the sitting position briefly, and once he lowered it again I slept on right away.

In the morning there was only a vague memory, so had to check it really happened, Richie confirmed, it had really happened.

Apart from having to get to the toilet extremely quickly, yesterday was an uneventful, but also a relaxed day.

Certainly it became a very relaxed day, after my successful bowel movement, can’t believe how important they are and what a huge effect it can have on me.

If I can’t maintain my position in bed, it is usually because I need to go to the toilet; it’s quite amazing how it destabilises me, I wonder if anyone else has this too.

Never encountered this before, this is obviously something to do with my disability getting progressively worse, so very quickly.

Recently I have noticed how I am affected by various things, (cold) wind, temperature changes and bowel movements, spasms and painful tense, cramped arm muscles are some.

These things can’t be controlled, we can only try t o anticipate and respond quickly, often there is no chance.

If I have had an accident, Richie whisks me out bed and gets me in the bathroom, a lovely warm shower, clean clothes, perfume restores my confidence.

Tuesday, October 25, 2011

Robert Mugabe Another Ageing Dictator

Robert Mugabe.

Letter from Harare: why Mugabe is unlikely to share Gaddafi's grisly fate
The ageing dictator's greatest enemy is not an army of rebels but failing health.

David Smith 
Guardian Mondy 21 ovtober 2011

The jacaranda trees are blooming in Harare, draping its broad avenues with canopies of purple and green. The shops are bustling, hotels and restaurants are often full, children are at school, young couples are walking in the park. No sign of a revolution here.

Coming to Zimbabwe after two spells in Libya this year, I felt like they were not merely the length of a continent apart, but on different planets. While north Africa has been convulsed by revolution, life in Zimbabwe in 2011 has continued to flow in a comparatively gentle, uneventful way.

President Robert Mugabe, immovable for three decades, has little cause to be kept awake at night by last week's chilling images of a bloody, battered and bewildered Muammar Gaddafi pleading for his life. Could it happen here? Not likely.

I wondered why not. After all, Zimbabweans (led by Mugabe among others) rose up a generation ago to overthrow Rhodesia's white minority regime.

"Fear," explained one former minister in Mugabe's government. Past public marches have been brutally crushed. Earlier this year 46 activists here were arrested and charged with treason for merely watching a video of the uprising in Egypt.

Okay Machisa, director of the Zimbabwe Human Rights Association, told me: "The Arab spring did not go down well with the Mugabe regime. Jailing those activists was a way of saying we don't want people to go on the streets and demonstrate."
But there was plenty of fear in Gaddafi's Libya too. 

What's different is that Zimbabwe offers the illusion, at least, of freedom of speech and democracy. On street corners vendors sell independent newspapers with virulently anti-Mugabe headlines and editorials. (TV and radio remain a different story. Some newspapers too. One ruefully exclaimed: "If only British politicians were as brave and selfless as Robert Gabriel Mugabe!")

Whereas Libyans had no hope of removing Gaddafi except by desperate force, Zimbabweans can channel their efforts into a political party, the Movement for Democratic Change (MDC). 

The MDC possibly acts as a sponge, soaking up revolutionary fervour that would otherwise find expression on the streets.

I visited the MDC leader Morgan Tsvangirai, who has survived beatings and electoral fraud to become prime minister in a fraught power-sharing agreement with Mugabe's Zanu-PF party. 

He lives in a relatively modest three-bedroom house with a big, English-style garden surrounded by a high wall with razor wire. The sound of birds and crickets fills the air. We sat in a back office where an old campaign poster adorned the wall and Bill Clinton's autobiography was among books on the shelves.

Does Tsvangirai envy the Arab spring? "No. It's their situation and circumstances and conditions that dictated behaviour. One of the fundamental things that I can say is that you cannot suppress people for ever. One thing to learn from that is people will always cry for freedom. It is universal.

"We are in a different situation, we have different circumstances and we have got our own way of dealing with our situation. That is why the MDC has pursued change without bloodshed and I think we are correct."

Elections are expected in the next year or so, and with them the fear of a return to violence and chaos. 

For Mugabe seems unwilling to ever let go of power, not least, some claim, because he fears prosecution for past crimes under international law.

At 87, Mugabe is the oldest member of Africa's ageing dictators club

Three of the 10 longest serving leaders have fallen this year – Ben Ali of Tunisia ruled for 23 years, Hosni Mubarak of Egypt for 30 and the longest, Gaddafi, for nearly 42.

But all were in the Arab north. South of the Sahara, in "black Africa", the winds of change are mere zephyrs. Still going strong are Teodoro Obiang Nguema of Equatorial Guinea (32 years), Jose Santos of Angola (32), Mugabe (31), Paul Biya of Cameroon (29), Yoweri Museveni of Uganda (25), King Mswati III of Swaziland (24) and Blaise Campaoré of Burkina Faso (24).

There has been some mild turbulence for some of them this year but nothing to frighten the presidents' horses. Far from Gaddafi's grisly demise, Mugabe seems destined to go quietly into that good night. His greatest enemy is not the gun-toting revolutionary with a mobile video camera, but time.

The octogenarian president makes mysterious trips to Singapore for medical treatment, has been photographed falling asleep at meetings and, according to a US cable released by WikiLeaks, is suffering prostate cancer that could spread and kill him by 2013.

Gossip about his ailing health now grips Harare's bars, diplomatic circles and international newsrooms already transfixed by 93-year-old Nelson Mandela's pulse. I asked one analyst if all this speculation is paralysing politics in Zimbabwe. He replied: "Mugabe's health is politics in Zimbabwe."

Tsvangirai gave this view: "President Mugabe's health is a national question, a national concern. Why? Because when you have a partner whose state of health is unpredictable, and that partner holds the key to the unity of the opponent, what is likely to be the outcome should he die is instability in the party, which leads to instability in the country."

It was a question that arose with Saddam Hussein in Iraq and now again with Gaddafi in Libya. Once the linchpin of dictatorship is yanked out, must infighting and anarchy follow? Some believe that Mugabe, whose reign is as old as independent Zimbabwe itself, is the toxic glue that holds his party and country together.

But others point to neighbouring Zambia, where recent elections saw the president accept defeat and a democratic transition of power. Rupiah Banda is little known around the world and his unbloody, unspectacular fall gained only a fraction of the coverage of Gaddafi. But it may have been just as revolutionary in its way – and just as unnerving to that cabal of ageing dictators.

Monday, October 24, 2011

Strange Dreams.

Enrico Donati.

Today got better after I could sit up, waking up this morning was horrible, my muscles totally cramped tight, not a pleasant awakening.

It rarely is these days, although some days are less bad, today it was bad, waking up to pain is a shock every time.

This morning I woke after a restless night, full of strange dreams, I lay motionless apart from my legs vibrating gently as the spasms happened every couple of minutes.

Lots of involuntary movement, sadly voluntary movement not so easy, it was difficult to move my arms, I waited for Richie to help me.   

My right arm was very stiff and tightly folded over my chest, it was impossible to straighten it out, so Richie massaged my shoulders and arms.

Then he helped me to catch hold the handle, after the first set of exercises I was please that I didn’t have to ask Richie again for help.

Everyday that I can do my arm exercises is a good day, even better if I can do it all myself, if not then Richie will assist me.

The important thing is that my muscles get stretched so that I can use my hands & arms, this morning I lay in bed contemplating life without arms.

Scared myself silly with my thoughts, so decided to stop and focus on today, not to waste time upsetting myself, once I could refocus I enjoyed the day.       


Sunday, October 23, 2011

No Need For Stoicism.

Oscar Dominguez.

Beautiful sunshine again today, it has got much colder, after the unexpected 2 weeks of extra summer, which was gorgeous, I think a lovely surprise for all of us.

It was nice to be able to go out then, in a tee-shirt and not have to bother with sweaters and winter jackets scarf and hat.

In the winter we have to add 30 minutes onto our journey time as that’s how long it takes Richie to put my jacket etc on me, so I can cope with the cold weather.

The temperature has dropped noticeably this last week, just over a week before blankets were still ok, now it’s colder.

It has quickly become cold enough for duvet weather and cold enough for blankets as well and this usually doesn’t happen until January.

Right now it seems like this winter will be extra cold, especially as there have been clues, such as no mosquitoes since beginning of September and now extra blankets on the bed.

I look forward to seeing snow again this year, shame I have not got tractor wheels for my wheelchair which could cope with snow and sand at the beach in the summer.

Today I have been taking it very easy, it’s very enjoyable sitting in my wheelchair without any pain or discomfort, and of course that’s all thanks to Rick, the engineer from Welzorg.

So glad that the wheelchair arm supports were lowered on Friday, and so relieved that I didn’t have to be stoical and wait bravely until Monday for a resolution.                            

Saturday, October 22, 2011


Jorge Camacho.

Today was a relaxed day, yesterday was awful, we waited all day from 08.00 to 18.00 for Welzorg, to get urgent adjustments to my wheelchair arm supports.

Richie couldn’t take the dogs out to the dog toilet until after 13.00, nor go shopping until they had been here, so we all had to make the best of it.
Thanks to the Rick, the engineer, from Welzorg, who worked overtime on Friday, and surprised us at 18.30, when we thought nothing could be done until Monday.

It was great that he turned up so unexpected and had a good look, how I was sitting and adjusted the arm supports by 10 cms, so I will be able to sit painlessly

Now I can finally sit comfortably again, which is brilliant after the last ten days of pain, sitting in the wheelchair with the arm supports 10 cms too high which got more painful each day.

By yesterday the pain of sitting with my shoulders hunched up around my ears, was very painful it felt like my shoulders were in a mangle.

I can’t believe that I was so let down by Percy from Welzorg, Edith called him on the 10th October to let him know the wheelchair arm supports were 10 cams too high.

Percy promised to send someone right away, and did not do anything; basically he chose to ignore my predicament, I wonder if he even considered how horribly painful it was for me.

I bet he didn’t think abut how it might be for me or for anyone else he supplies mobility aids too, I am sure he never considers how others would react.

It really is a shame that the majority of people who work looking after disabled people, do not seem to have any empathy with their clients    

Friday, October 21, 2011


Bienvenido Bones Banez, Jr.,_Jr

Today was not the day we had expected, we thought that someone from Welzorg would be here to lower my arm support as arranged on the phone yesterday with Edwin from Welzorg.

Instead of someone calling between 08.00 and 13.00 as promised, no one came and there was no phone call either to let me know what was happening.

At 15.15 still no one, so I phoned, I spoke to a woman who put me on hold, while she tried to find out what happened, after several minutes she, told me she needed to investigate further.

Then she transferred me to a colleague, he didn’t want to give his name, not good PR for his company, he kept saying Welzorg when I asked his name, eventually he told me

It turned out, he knew nothing so I had to repeat my story, then, he also made inquires, he told me the engineer had been delayed helping with a couple of accidents, but he. would be with me soon.

By the end of the call it was 15.30, they had kept me hanging for 10 minutes and at the end I still was none wiser as to when someone would help me.

Since I got the new wheelchair on 10th October, I have been in terrible pain beaue the arm supports were 10 cms too high, my shoulders hurt lots, hopefully there won’t be lasting damage, but there could be.

At 16.30 I tried to speak to my case manager, she is not there on Friday, René, the secretary said she would see if she could find out when the engineer would be here, she called me back, and told me he could be here at 17.30.

In the meantime I had spoken to  Welzorg, who put me through to an engineer, he was miles away in Almere, couldn’t help until much later in the evening or Saturday, he couldn’t give me a time, the prospect of another day of endless waiting was not acceptable.

Our friend Cecile, who was visiting, phoned Welzorg yet again, she explained my situation, she found out they couldn’t do anything; they would report it on Monday.

Just as Richie was about to put me in bed at 18.35, the bell rung, it was Rick, a Welzorg engineer within 15 minutes he had lowered the arm supports, and at 18.50 he was finished.

Turns out he was from Leiden, 40 minutes from Amsterdam, his shift should have ended two hours previously, he still had a call n Leiden, and if he was lucky he would be home at 20.00.
Welzorg-zorg means care, yet they seem to have none for either their customers or their employees, thanks to Rick, the overworked engineer I can sit without pain.

Thursday, October 20, 2011

Small Victories.

Bienvenido Bones Banez Jr.,_Jr

More problems with blogger today, I couldn’t post the labels on my English blog post for most of the day nor edit and post my Dutch post.

Until just now when it finally worked, with the same labels, and the same text in my Dutch post, but that’s not weird, it’s just blogger.

Its nice to have some small victories, like the phone call at midday, it was Edwin from Welzorg, Edwin called to make an appointment to lower the arm supports

Edith noticed when I got the new seat on 10th October, that the arm supports on my wheelchair were 10 cms too high, causing me to sit painfully hunched.

She immediately phoned Percy who promised to send someone right away, finally after waiting for 11 painful days I was offered an appointment next week Thursday.

This was not acceptable; not another uncomfortable week, so I said but Percy promised a quick appointment on Monday 10 October.

Edwin’s response was to say the appointment would be tomorrow between 8-13, which was brilliant, just what I wanted to hear, I am looking forward to sitting painlessly tomorrow afternoon.

Hopefully the burocratic paperwork will get done soon, so Welzorg can order the new steering, so that trips outside will finally be safe, with the correct steering, not the one they gave us last November, which is only for indoors.

No wonder I fell, luckily I didn’t get very badly injured when I fell head first out of the wheelchair, Richie felt guilty for months and it was the mobility advisers fault for advising the wrong steering.


Wednesday, October 19, 2011

Political Sleaze.

Generale, 1961.
Enrico Baj.

Today has been a cold, rainy overcast day; one of those days where being indoors was a good idea, especially with the heating on.

After I did my arm exercises, with a little help, and Richie my leg exercises as well as massage, he sat me up in bed.

After brushing my teeth, washing my face, I took my baclofen tablets; I was ready to get on with the day.

Richie got the table and my laptop; quite soon I was listening to the news, reading my e-mails and feeling pretty good.

The BBC radio news was still about Liam Fox’s resignation as Secretary of State for Defence for Defence Secretary, for breaching the ministerial code of conduct.

‘’ Fox's relationship with a close friend Adam Werritty attracted extensive media attention and eventually led to Fox's resignation. 

Werrity, had been best man at his wedding, had lived rent-free in Fox's flat, and been involved with him in business and in the conservative Atlanticist think-tank The Atlantic Bridge

While Fox was Defence Minister, Werrity had visited Fox at the Ministry of Defence on many occasions, had accompanied Fox on numerous official trips, attended some of his meetings with foreign dignitaries, and had used official-looking business cards which said he was an 'adviser' to Fox, all despite having no government post. 

The media raised questions about Fox's judgment in allowing this to happen, the nature of the men's relationship, and the source of Werrity's income.

The full list of Fox's meetings for his time in office to date, 20 May 2010 to 8 October 2011, was published by the MoD after 7 p.m. on 10 October 2011 and revealed that Werrity was present at 40 of Fox's 70 engagements in that period.

In 2005–6, Fox used public money, from his expense claims as an MP, to pay Adam Werritty.’’

They are now investigating where the money came from which paid Adam Werrity, money was apparently given to organise peace conferences and not to finance Werritty.

Many questions remain such as what about the financial backers who must have hoped to benefit, were national security issues breached, many questions remain it could get interesting.

I have had a pretty good day, there was a blip when Richie took the dogs to the dog toilet this morning, as soon as they were gone I needed the toilet too.

Nearly got to the toilet on time, but didn’t, we did get to the bathroom and after a lovely shower, dressed in red and black, wearing Nina Ricci perfume, my equilibrium was restored.

Tuesday, October 18, 2011

Writing Make Sense Of My Life.

Rachel Baes.

These last few days, Blogger has been annoying me; suddenly there were no comments on my blog for three whole days.

This upset me, as it is such an important part of my life; seeing absolutely nothing, I began to wonder if my blog was perhaps not accessible.

When looking for my blog I found it, but only up to Friday, when I asked Richie to look he said he found it also, but without the possibility to comment.

I asked on Face Book, if anyone else had problems accessing my blog, Tracey D told me that my blog seemed to take 2 days to become visible.

I was amazed at this, never heard or ever experienced this before, usually no sooner that I have posted then I receive a comment.

These last three days have been quite odd, no comments, I was starting to get annoyed today, wondering what to do.

Luckily I didn’t have to anything, as I got three comments today, good to see them, they made me very happy.

Realised then quite how much I had missed my friend’s messages, happy the ‘’glitch’’ is over now.

Glad it’s over now, at least I could write and publish my posts, and I enjoying writing every day and writing make sense of my life.   

Monday, October 17, 2011

Maybe Not Patient Just Realistic.

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.

Sunday, October 16, 2011

Memories Are Very Precious Now.

Dora Maar. 

Writing yesterdays post has made me think about worrying about losing everything, also myself or so it seemed at the time.         

In 2007 it seemed like I was losing so much, at times it felt like everything would be lost to me, my life seemed to dissolve around me.

Glad that has not happened, it just felt like it would, I can see now that it was the speed at which my MS progressed, that worried me so badly.

Not surprising feeling I had lost it all, as I did lose alot, my work, which was my public identity, then my identity as a woman, it was too much in one short year.

My memories are what I have of my life before my diagnosis; I can recall aspects of my life that no longer play any part in my life now.

Only memories of my sexuality, remembering making love with my darling Richie, waking up in his arms, lovely sensuous memories.

Memories, all just beautiful memories now, I wish I could make more of those but sadly can’t, if only my skin were not so over sensitive to touch.

Ever since April 2007 I have had to sleep in my small hospital style bed, on my own, no cuddles last thing at night or waking up in the mornings.

it became too unbearably painful to make love, then too painful to be touched, life changed dramatically, memories are precious now, life goes on, I enjoy it.


Saturday, October 15, 2011

Gorgeous Sunny Saturday.

Greta Knutson.
Today was another beautiful sunny day, to our delight the Rugby World cup semi final in Auckland, New Zealand was on Dutch TV.

We had both hoped for a wonderful win for Wales, so what a huge disappointment it was, to see Wales lose the game by one point to France.

Their next chance is in 2015, who knows what will happen then, without MS I would have expected to be alive for that, but the quick progression of my MS means I don’t know.

Mind you, I guess no one really knows, the best thing is not to dwell on it, better to get on with living life, I am amazed that despite my restricted life, how much I still enjoy.

I am beginning to realise that my ideas about being handicapped, fall very short of the reality, which is that whatever happens I am still me.

For some reason I thought that I would not just lose my functions but would also lose myself, and my identity.

I could not have been more wrong, I can not walk, in fact I can do very little, and Richie does everything for me.

Good to discover that myidentify doesn’t depend on my bodily functions, nor has my personality been affected by the MS.

I can’t believe now that I thought I would lose myself because of disability, I can see how sever illness can take away so much, I  know now it can’t rob me of my spirit.


Friday, October 14, 2011

What A Week.

Agustin Lazo Adalid.

Beautiful sunny day today, it was quite warm too, 19 degrees which is quite wonderful for the 14 of October.

Lovely to see happy people enjoying this unexpected warm sunny weather, I hope it’s like this tomorrow too.

I have decided to have a relaxed day today, it’s been quite a week, and I need to take stock, I am glad that I found the company that Maurits has made an appointment with.

I hope they will be able to make something so that I can be able to sit supported, be nice to be well supported so that I don’t sag and corkscrew.

Like I do now, it makes life very uncomfortable for me, be so nice if that could be resolved.

For now I shall enjoy this evening, look forward to Later with Jools on BBC2 and The Horrors, and a band from Southend, Essex, near where Richie comes from

Tomorrow I hope Wales will win against France in the semi final in New Zealand of the Rugby World Cup.

I had to laugh when we heard on the news that Liam Fox, the Defence Minister had to resign because he had ignored the Ministry of Defence rules.

After working for 40 years to become Prime Minister, he has thrown it all away by allowing his best friend to act as his unofficial advisor, and sidestepping the civil servants who are there to protect the minister.   

Looking forward now to Later with Jools and the weekend.

Thursday, October 13, 2011

A Good Day.

La Cene,1950.
Gaston Chaissc.
France 1910-1964

Feeling happier today, not been made so aware of my mortality, as I have been alot lately, morbid thoughts that I don’t like.

Ones, that I have been having too often, since my right arm has become so much weaker, which has worried me so very much wondering how things will be.

 Richie will manage, that helps some but does not take away my worries, I cope by trying to stop my thoughts, shame they keep popping back up.

Luckily I had a break today, nice to not be bothered even if only for one day, this afternoon cheered me up, Richie trimmed my toe, fingernails as well as cutting my hair.

 Now I feel restored, I always do after a haircut and getting my nails done too was brilliant, then I got called by Maurits, to tell me he had made an appointment on 28 October

It’s with a company who make various types of support, I found the company, Aquarius, yesterday when I surfed the web, and I hope it’s a good appointment.

Then Marianne came round with some clothes she had altered for me, she also took some more with her, brilliant thanks to her and Anja I now have more clothes to choose from.

My favourite little black jacket Richie slipped on right away for me, the first time I have been able to wear it in years nice for Marianne to see how simple it was for Richie to put on me.

I looked, felt so much better, having my clothes adapted has given me a huge much needed boost, I can once again look how I want, like myself.

Wednesday, October 12, 2011

Support Urgently Needed.


On Monday I was optimistic, I thought Maurits, my occupational therapist, understood that I urgently needed better support to sit in bed.

Richie and I showed him exactly where I need to be supported, when he left, Maurits was going to find a company that would help me with my support problems when sitting in bed.

Great I thought, until he sent me a link to a company that have cushions to help you lie better but had nothing to support me sitting.

I couldn’t believe it when I got the mail from Maurits, instantly I felt abandoned, not a nice feeling at all, especially when I need urgent help.

Seems that Maurits, hasn’t got a clue about where to look for support for me in bed, so, I have been looking for companies, which make such support, so I can sit properly supported in bed.

I can’t believe that I am surfing the net looking for solutions, when Maurits, has a PHD in Occupational Therapy, should be knowledgeable and be able to find the relevant company.

What is also incredible s that I asked for help to find a solution to my problems trying to maintain a good sitting position in bed and my therapist is looking for the opposite.

This leaves me feeling thoroughly unsupported; I hope that I can find a company that can provide me with this much needed support.

Support which would be wonderful as I am experiencing quite a lot of pain, discomfort because I can’t sit up, I constantly corkscrew and collapse to the left side of the bed.

Tuesday, October 11, 2011

Turning Back The Clock 40 Years.

Pierre Roy.

Really noticed how down I have been since the news, on Saturday, that the right wing Dutch government has turned back the clock 40 years by criminalising skunk, strong cannabis.

Amazing that after leading the way in decriminalising and tolerating the personal use of cannabis they have now decided that if the THC is stronger than 15 % it’s now illegal.

Couldn’t believe my ears when I heard, however this news is not so surprising, considering the composition of this right wing government.           

The Coalition Government is: the VVD: Peoples Party for Freedom and Democracy, the Christian Democratic Alliance, PVV: Party for Freedom.

They are also supported by the SGP:The Reformed Political Party (Dutch: Staatkundig Gereformeerde Partij, SGP).

It is no wonder that the right wing government knowing they are restricted in what they can do have decided to go for the coffee shops.

They made an arbitrary decision that strong cannabis, called skunk will now be reclassified as a class A drug, along with Ecstasy and Heroin, suddenly it became illegal.

A strange decision as this country makes a lot of money from cannabis, from tourists coming here to enjoy the coffee shops.

This decision is like the Netherlands scoring an own goal in the World Cup, tourists will now go to other countries instead like Portugal, guaranteed warm weather and cannabis.


Monday, October 10, 2011

A Good Start To The New Week.

Today I got the new wheelchair seat, it is very good, it makes a big difference, nice to be sitting straighter and higher in the wheelchair. 

Lovely to feel I am more stretched out, I no longer have a potbelly, actually I never had one, it looked like I did because I couldn’t sit up straight enough.

Shame Johanneke, my previous occupational therapist, had not noticed that I needed more support, which a new seat would have provided.

Other things should also have happened last year, such as trying out the electric arm support, it supports your arm so you can eat, read, type.

The IPaq gadget I have that opens the doors, adjusts the bed, turns on light, TV, operates the telephone I should have got in 2008 not November 2010.

Johanneke it seems did not research the support cushions well; she did not look for another better solution then Quattron who don’t have suitable support for me.

I spent months waiting from January until July to get the support cushions; since I have them they have been ok but not as useful as I had hoped.

Maurits does not think the cushion supports me; he suggested a couple things we can do to help me maintain a sitting position, while he finds a better solution.

Edith, my council mobility advisor was here too, she noted that the wheelchair arm supports are too high, neck support needs adjusting; she will see they get done, a good start to the new week.