Last night I was reading other blogs and came across a delightful post on Celeste Maia’s blog

http://maiasintothemoonlight.blogspot.com/ called Lunch with Isabel.

It is a delightful post describing lunch plus exquisite detail about the menu for her special friend and beautiful photos.

Really enjoyed reading it until I read about being transformed in the summertime

‘’ Ah, summer, we all become Chagall nymphs. ‘’

Again it hit me real hard that I will not know that transformation anymore, no more painting my toenails and organising my summer wardrobe.

No pretty sandals and finding my favourite shorts and making sure my bathing suit is still ok, no none of these activities will occupy my time this or next year or any other year.

It is not as if I did not know this already always takes me by surprise how painful these sudden realizations can be and are for me.

It is like I have just had a shock and then keep having delayed reactions for the next years really weird to be so shocked and upset anew eveytime the realisation of my situation hits home again and again and again and again….

I regained my composure somewhat and even managed to dry my tears so Richie did not get upset when he came to get me out of bed.

Was ok until we were getting ready to go to sleep when I started howling as I realised that this is the one situation where there is no reward for perseverance and following instructions.

We are doing everything that the nurse tells us to and Richie is following the instructions to the letter and I do the exercises and eat well, a lot of fish as that is good for promoting healing.

So we do everything we should and abit more but the return we would like will not happen.

We will never hear the doctor or nurse saying there is great improvement, she can expect to regain control over ………….

It really is amazing how many stories we do tell ourselves, somehow there is always the hope that the unexpected will happen.

Don’t believe in miracles, never have but somehow I have been hoping for something to happen.

Something unexpected to occur, that’s when I realise that even though I do not believe in miracles I would not mind if one happened.

Seems it is not easy to get rid of remnants of superstition that they cling on unnoticed and emerge to cause grief every now and then.

Well in the light of day I can see the effect it had on me last night, being tired and discovering that I still hope that I could get up and pick up my mattress and slink off.

It ain’t happening it made a good story but that is about it.

Have to accept that the situation I am in will not be resoled in the way we would like.

That leaves me with the only viable option which is to stay as positive as possible and as open and receptive as possible to life.

It is a warm slightly sticky day will get Richie to organise how I am lying and turn on the fan for me and I am all set to enjoy the afternoon.

Going to stop by and watch the Osprey webcam in Scotland, the link was given to me by Joan @ Joan's New Musings

http://joansnewmusings.blogspot.com/

Here is the link to the Osprey webcam

http://www.rspb.org.uk/webcams/

Bye

Please visit Sherry at

Word Salads
the Demyelination of Me

Living Single with Multiple Sclerosis

http://wordsalads.blogspot.com/

Sherry needs our support in this difficult period after the recent sudden death of her beloved daughter Nicole.

Be real good if people could go by and say hello.

Thanks for your support hope you do visit her today.

<



Had a sudden awakening by a loud noise followed by a screeched conversation between people seemingly stood at opposite ends of the street.

I heard the exchange of greetings between the two and surprised myself by falling asleep again.

Really surprised me as was just thinking that’s me lying awake while Richie sleeps on but no sooner had I thought this than I was asleep.

We woke up late but not surprising as we were very late last night, Richie did not turn the light off until 2 am.

Every night we seem to be pushing time back and never manage as it just suddenly catches up on us and it is 2 am or shock horror on Saturday night it was 3 am.

Seems that if we can’t go out to a gig we can stay up late and one early morning leads to another.

Have to watch that and maybe have a change sometime soon and turn the light off as soon as The Wire is finished then not long after lights out at 1 am.

Doe not sound like much but better than 2 am or 3 am besides the wire is only on from Monday to Wednesday.

Funny us both liking The Wire, do not usually like cop soaps but this one is very well done, the characters are good.

It is interesting to see how the stories weave in and out of each other as do the interests.

Funny to see the experiment with setting up a zone where the street dealers and their customers could go.

The cop that set it up wanted the drug trade off the corners in his area, he wanted the good folk living there to be able to go about their business without the madness of street trafficking and other harassments.

After he got all the trade moved crime in his area dropped by 14% and was the pride and joy of the Comissioner until he found out how it occurred.

Very curious what they will do next, the characters are good very believeable and all characters are well rounded.

You can see where they are coming from and at the same time totally find some of them abhorrent and that is on both sides.

Fascinating to see the various strands of the story being braided week by week.

Guess it has become so compelling a story because it is well told and intelligently told and that makes all the difference.

Hate things that talk down to me feel patronised, feel like a label saying dummy audience has been slapped on all our foreheads.

In the UK they have a soap called The Bill about police in Manchester and it is dreadful as it is a verey flat storyline.

It is all pretty stereotyped police soap which never got my interest ever, we might watch it by accident and get rid of it quickly as soon as we would realise what was on.

Have been here since 1981 apart from term times spent at Hillcroft and Middlesex University but do not watch much Dutch TV there are a few good programms.

They do investigative news and discussion s and are good but apart from that and some dresdful soaps Dutch TV seems to consist of endless quiz shows and games shows.

And in the summertime there are a series of free concerts in parks round the Netherlands, the pe-ople who are there all look pretty happy to be there.

We always turn over as we can’t stand them, I always feel that just because it is ampliefied does not make it good.

Oh well different people, different tastes which is a good thing would be so dreadfully boring if we all liked the same thing.

It is pleasant weather today which is good, the sun is shining and Marianne is on her way, she is off on her South Africa bus adventure next Tuesday.

So my last visit from her until 11 August, hope I can sit by then am determined to get outside before the end of summer.

Well enjoy the afternoon I will.

Think that my determination not to endlessly reproach myself might be working at last.

Woke up this morning and the first thing that happened was I did not start reproaching myself, which was really amazing.

Richie got me some THC as he heard me moan as I woke and he also could see and hear my legs kicking around because of the spasms.

The THC made the spasms weaker and then less frequent, but they did not stop altogether, one pulled me down the bed.

Could see my feet touching the end of the bed, at that moment my arms locked solid and I decided that it was best to do my arm exercises.

This as always loosened up the muscles in my arms and I could lie here quite peacefully even managed to weave all the sounds from the street into my dozing dreams.

Typically just when the street went quiet and I was drifting off to sleep again Richie got up and I realised that was the end of sleeping.

Shame if only my arms and leg had not been so active I might have drifted off after inhaling the THC.

Still great Richie got up when he did as he massaged my legs and did extra leg exercises to ease the tension.

It was very noticeable that there was considerable tension in my legs this morning that is something that happens regularly.

Very changeable weather again today, very much the sort of weather you would associate with April and not middle of July.

All the seasons seem to be mixed up now, guess that is global warming and that is the price we are paying for the rampant consumerism which is I guess needed in order to keep the economy ticking over.
Was listening to the BBC World service this morning about the situation in Burma, how the dictators would not let Mr Moon from the UN visit Aung San Suu Kyi who has now been twenty years under house arrest.
http://en.wikipedia.org/wiki/Aung_San_Suu_Kyi
Richie then switched over to Radio 5 and we heard about a Libyan man who was one of the many anti Gaddafi groups who were invited to base themselves in Britain in the 1970’s.
Then they were given offices and all the facilities they needed to run their propaganda campaign against the Gaddafi regime.
This intensified after the police woman Yvonne Fletcher was shot dead during a siege of the Libyan Embassy in the 1984.
http://en.wikipedia.org/wiki/Yvonne_Fletcher
Then Britain were anti Gaddafi, this changed once they needed Muammar al-Gaddafi
http://en.wikipedia.org/wiki/Muammar_al-Gaddafi
Who was seen as the Muslim leader who was not aligned with El Qaida and therefore the West needed his contacts to mobilise against Bin Laden and El Qaida.
Seems various people have been under house arrest since 2005 when Gaddafi became a friend and as Richie put it at that moment the Libyan State and Libyan rule of law was being applied through British courts.
Jack Straw, the Home Secretary is in fact acting for Gaddafi in keeping the man we heard about on house arrest.
He has not been told what the charges are against him just that it is secret, so he was asked to plead guilty to something he and his lawyer do not know what the charges are.
A strange affair and all because they wanted to get closer to the dictator Gaddafi.
Truly amazing.
On a more micro view of the world I really enjoyed having another look at my childhood with Richie; his comments are very useful and have given me another piece of the puzzle.
Think that I have finally worked out why we had to leave Trinidad when we did.

In April 1962 Independence from England was imminent and I guess my parents panicked and decided to move to England really quickly.

Shame they did not try U.S.A of Canada or even Australia, although do not think they would have taken my dad as he was too dark skinned.

Also finally worked out after talking with Richie, that my parents were very hurt individuals, my dad lost his mother when he was young and so his father and two sisters, the aunts raised the children.

His father seemed to only be around to discipline the boys and dish out castor oil and cod liver oil and other heavy laxatives at the start of the long holidays to purge them and then again at the end of the holidays.

For the most part he would be travelling around dispensing justice as a District Magistrate and the children were in the care of the aunts.

During the war there was always the prospect for my father of being called up to go and fight in Europe.

For a pacifist a horrendous prospect indeed.

Also for a father of a young child it was a huge relief when peace was declared in 1945 just as his second daughter was born.

By 1949 my father’s first wife met another man and divorced my father.

This was frowned on by the Catholic Church who excommunicated my father, in such a small island not a good state of affairs.

My mother was born in Germany in 1925 and lived through the war years at home
in Eschweiler, the First World War had killed quite a few relatives and in the Second World War my mother’s mother was killed by the one of the last air raids before peace was declared.

The trauma of the WW 2 plus personal traumas meant that both my parents were very hurt when they met in post war London in 1950.

Both were free of their home environment, they met and had fell in love and next thing my mother was pregnant.

They returned to Trinidad still two hurt individuals with not much in common and the prospect of a child.

After some time the hostility from the church, which had increased because my parents had married in a registry office, made them decide in 1962 to get out to England.

So finally the mystery is solved for me of why we had to leave Trinidad.

I can leave it all in the past and concentrate on the present which is sunny weather toward s the end of the afternoon and the prospect of a pleasant evening.

Gareth's Garden in Wales.

Both Richie http://screamingrichie.blogspot.com/

and Mary http://rejectedtruth.blogspot.com/


have pointed out that I am very hard on myself and I am, and it seems no matter how I try I can’t stop.

What I do now is as soon as I notice that I am giving myself a hard time by constantly reproaching myself I try to stop thinking the thought.

It is very mechanical at the start but like anything can be learned, easy to forget that and to expect it to all somehow come naturally.

And if it does not, easy to spend time reproaching yourself,

I have spent and still do spend too much time on reproaching myself for things I could not possibly be responsible for.

Not easy to stop those thoughts

Not easy as these thought tend to repeat themselves, like a file that has not been dealt with, best way I find is to divert to thinking about something else.

Start to think about the things that I can do something about and concentrate on what I can do and not on what I can’t do and will never do again.

Useless to beat myself up for things that I can’t change, that are in the past, so easy to spend time on the past when the present is all around.

Would not be good to ignore the present and concentrate on the past, by putting the past to rights I could miss out on now.

Right now it is not the nicest looking days, the sky is grey and overcast, there is a huge damp grey lid on the city.

But still the kids are outside playing football whenever the rain stops.

Like that approach, things may not be perfect but they can still be enjoyable and that is the important thing.

It may rain all day and keep people indoors under shelter but as soon as the rain stops they are all outside again.

Life is like that and that is why I try to enjoy what I can and anytime that I can.

Since I have been in bed I realise that I am still processing memories that I made while I was still mobile.

I am not mobile now and notice that I survive these days on memories of things, have memories of Amsterdam, of cycling around the city.

Notice that placing particular streets is starting to get patchy as my memory of where a road may be gets hazier.

The way to keep everything fresh is to move around town and interact freely with others, I know that this is something I may never do again.

That is a scary and a sad thought, if that did become reality that would be very sad indeed.

Have to put other things in its place, found some Amsterdam webcams and spent sometime watching them.

Was amusing for once but not the answer, the answer is something I already do which is go online and read what others have to say.

The blog world is good, really enjoy dropping by other blogs and seeing how others are coping, like

Amelia over at Tales of Life with Multiple Sclerosis http://talesoflifewithmultiplesclerosis.blogspot.com/


She has just had her first infusion of Tysabri and she also gives herself a hard time as does

Stephany at Soulful Sepulcher http://bipolarsoupkitchen-stephany.blogspot.com/

Visited Cranky at Musings of A Cranky Caregiver http://musingsofacrankycaregiver.blogspot.com/


and Lucy at What Life is about. http://whatlifeisabout-lucy.blogspot.com/


and Rain at Mountain Mamma http://rain-mountain-mamma.blogspot.com/

and Debra at http://living-with-ms.blogspot.com/


Went to see how Amy at Word Salads the Demyelination of Me is doing, it is a month ago her 34 yr old daughter Nicole died http://wordsalads.blogspot.com/

Visited Robert at To navigate through life http://tonavigatethroughlife.blogspot.com/

And Joseph at Life in Motion http://ptjosephrosa.blogspot.com/

And Kparthasarath at Random Thought http://kparthas.blogspot.com/


What a journey and I am still in Amsterdam.

Really makes the day for me when I visit other blogs feel my world gets expanded.

Well have a good evening.

Gareth's Photos from Wales.



Got woken up by the containers being hoisted and then emptied into a waiting lorry, took ages or so it seemed to me lying in bed.

As soon as the lifting gear started up it woke me and approximately 5 to 8 minutes later it finally hoisted the container in the air.

Then it was all over and quicker than it had started and the street was peaceful once again, shame that just as I was about to drift off to sleep again my feet started kicking.

Any remnants of sleep were kicked clear out of the bed and my task now was to try to lie in the bed as quietly as possible.

Difficult with the kicks and twitches of my feet and the fact that a couple of leg spasms had pulled me quite a way down the bed.

Then my arms got in on the fun, my arms were at my side one minute and the next were on my chest and folded really tight.

So tight that I could not prise them apart at first, they really locked down as tightly as can be, not nice and very painful.

Just when this eased up, meant doing double arm exercises, I again had a whole series of leg spasms.

Leg spasms were the reason that I fell over so often in the years before diagnosis, of course at the time I did not know that was the cause of my falling.

Decided that might be the best possible explanation for why people fall repeatedly but do not know why this happens to them.

From around 20002 I fell every year and always there was a good reason like the boat had not moored so closely and the gap between boat and mooring was too wide so had to hop over and did that badly and slipped and fell.

Other high risk moments were walking in the park after 30 minutes my feet would be dragging, but once I could rest I would be fine again.

Now I know that each time that I fell over it was preceded by a leg spasm but one that was not detected by me at the time.

Remember how cross I was at my last workplace each time that I fell, as one minute I was walking and the next I was flat on my face, sprawled all over the place.

Each time I was furious and each time I picked myself off the ground, refusing all help and stomped furiously home.

The time I had broken the cartilage in my right knee was pretty dramatic and what was also dramatic was how I managed to get home.

Was so adrenalized up that I didn’t really feel the pain until I had got home, remember that my knee was pretty bashed up and cut and scrapped.

Richie insisted on some basic first aid which had me screeching with pain, great fun a home coming like that.

Now years later it all makes sense at the time had not got a clue what was happening to me.

Realise now that I was getting to the limit of my walking and that was about to stop, really thought in 2006 that I would be able to hobble about for quite awhile.

Oh well that was then and this is now, it is ok to remember but not good to get s tuck in the past, would be too painful and a waste of a beautiful day like today.

The temperature is going up again much to the pleasure of our neighbours especially the kids who are playing outside.

All sounds very pleasant and relaxed which is what I intend doing hope you are all having a relaxed Saturday.

Have been wondering for some time now whether my mum letting me smoke helped contribute to my getting MS.

Richie sent me a link to Jen's blog MS Strength

http://www.msstrength.com/early-smoking-linked-to-increased-risk-for-ms/

It is very interesting and it makes sense that apart from the risk of cancer there is also a risk of damage to the immune system.

Scary to think smoking can increase the possibility of getting MS, I bet that would make it a lot less of a sexy thing to do.

Think that would take the excitement out of smoking unless you have a thing about dicing with death you would not want to carry on smoking.

I found this online:


‘’Cigarette smoking and the risk for MS.
Researchers studied the relationship between cigarette smoking and the risk for developing MS in 22,312 people between the ages of 40 and 47 living in Hordaland, Norway. Information was gathered by using questionnaires and a physical examination. Detailed information about smoking included current and previous smoking history and the age smoking started.

There were 87 people who reported having MS. All patients with MS who were current smokers and most who had smoked in the past had started smoking before they developed MS.

Most people started smoking about 15 years before they developed MS. The risk for developing MS was nearly twice as high in people who currently smoked or had ever smoked than in nonsmokers. When men and women were evaluated separately, the risk for developing MS was nearly three times greater for men and one and a half times greater for women who smoked than in nonsmokers. Smoking also increased the risk for heart attacks, angina, and asthma for both men and women.

How could smoking increase the risk for MS? Smoking causes damage to the cells that form the lining of blood vessels. When these cells, called endothelial cells, are damaged, a number of things can happen. The immune system normally fights off bad agents like bacteria and viruses. When endothelial cells are damaged the immune system can become overactive and turn against the cells of our own bodies.

This is called autoimmune disease, and MS is an autoimmune disease. Endothelial cells form a very tight barrier in the brain blood vessels to prevent toxic substances from entering the brain. If endothelial cells are damaged, the brain blood vessels may become leaky. Toxic substances may pass into the brain.

What does all this mean to me? The Surgeon General has been warning everyone for years that smoking cigarettes may be hazardous to our health. Smoking increases the risk for cancer, heart and lung disease, and stroke. MS may be added to that list. How many reasons does a person need to quit smoking? The evidence is obviously mounting.

Cigarette smoking and multiple sclerosis (MS): Yet another reason to quit.''

Robin L. Brey, MD

http://www.neurology.org/cgi/content/full/61/8/E11

http://ms.about.com/od/newsresearch/a/smoking_mech.htm

http://intelligentguidetoms.wordpress.com/2009/06/19/cigarette-smoking-and-ms-scary-stuff/


The other element that is important is vitamin D which is obtained from sunlight, this is why there are fewer cases of MS in the tropics.

http://www.timesonline.co.uk/tol/life_and_style/health/article5663483.ece

http://www.timesonline.co.uk/tol/news/uk/scotland/article5672308.ece


Wish we had not moved from Trinidad then I would have got more than enough sunlight and my mum might not have introduced me to smoking.

I feel that I have been caught in a pincer movement between smoking and lack of sunlight all year around.

It is quite worrying the idea that I might have somehow contributed to my getting MS, perhaps not caused it directly but indirectly by giving the disease the conditions it needs.

Find that idea very creepy indeed.

But what about if it is something environmental that is causing the huge increase in cases of MS.

What if it is the pesticides we use so freely in the agriculture and animal husbandry.

Had a look and found this and other links:

http://www.dailymail.co.uk/health/article-399684/Breathing-pesticides-trigger-MS-Parkinsons-disease.html

‘’Pesticides can cause brain damage and trigger conditions such as epilepsy, multiple sclerosis and Parkinson's disease, according to scientists.
A landmark study claims that chemicals routinely used by farmers in the UK and around the world can result in neurological diseases.

The controversial findings will be challenged by the agro-chemical industry, which insists exposure levels for humans are well within safety limits.’’

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1717


‘’Research suggests link between pesticides and brain disease Researchers at the University of North Dakota say preliminary research shows a link between pesticide exposure and neurological diseases like Parkinsons and Alzheimers. Researchers say they've also identified a surprisingly efficient way pesticides may get into the human body.

Researchers at the University of North Dakota are quick to point out these are preliminary results -- covering one year of a planned four-year study.

But Dr. Patrick Carr says there's clear evidence pesticide exposure at relatively low doses affect brain cells.

"Some areas of the brain displayed what I would call physical changes -- in other words, a loss of neurons in particular regions of the brain," says Carr. "In other regions of the brain you wouldn't notice a change in the number of cells present there, but now the cells that are present there are expressing chemicals in different amounts, compared to normal rats."

As an example, Carr found cells responsible for production of a substance called myelin were damaged or destroyed. Myelin is a substance made up of fats and proteins that encloses nerves. It helps transmit signals along the nerves. Loss of myelin causes nerve damage in neurological diseases such as multiple sclerosis. ‘’

All very worrying and not something that can be changed quickly however one thing we can change is smoking having read several of the articles about the link between MS and smoking I would like to strongly urge people to stop smoking.

I find the link between MS and smoking very scary.

If you do smoke, this is the time to promise yourself you will free yourself from this expensive and unhealthy habit.

Worries me that my smoking cigarettes could have caused me to have MS makes me feel quite ill.

The thought that this extreme level of disability is all down to cigarettes that my mother encouraged me to smoke is quite horrific.

I would like to encourage you to give up you owe it to yourself to do this now.

It is important to protect yourself and others from the harmful effects of smoking.

Sorry to alarm people but it was on my mind for awhile now and when I saw the piece Jen had written I knew that I wanted to have a look on the internet for links between Smoking and MS.

http://www.msstrength.com/

Again it was nearly 2 am before Richie turned the light off and we went to sleep.

Woke up at 9 am and started my arm exercises at 9.30 am when Richie got up and after he had a coffee he did the leg exercises and the leg massage and then brought me THC and baclofen.

Had just finished my first 1/2 litre of water when the bell rang it was Anne a friend of ours dropping by to leave her spare key with us, a friend Darren is over from England and hopes to start work on Monday.

Had a good response from friends who I emailed to see if anyone was on holiday and he could stay in their apartment.

Had two offers, and one tel. nr from someone who wants to rent their place and another offer of a landlord's tel. number.

So seems he has somewhere for the first three weeks and he takes if from there.

Anne had only just gone by about 5 minutes when the bell rang and it turned out to be Ton, the wonderfully supportive nurse from the Rehabilitation Centre Amsterdam to inspect the sore.

He thinks it should not be too long now before it is totally closed over, he seemed quite happy with how it looked.

Again was getting very worked up about him coming around, I thought at 11.30 only for him to arrive at 11.15 instead.

Which was good as I was just starting to get stressed about another 15 minutes and then there he was.

Ton being early was actually a big relief also for Richie as he too was getting tense at the thought of Ton's visit.

As usual having Ton here was no problem and again it was a relief to hear his opinion about how things were going.

It is good for Richie to get his feedback and of course his support which has been invaluable for Richie all through this long process of looking after and keeping the sore clean and well bandaged.

Richie has had a hell of a strain on him now for nearly one year, it has been a huge task for him and at the beginning it must have been truly horrible for him.

He has been truly wonderful all through this long recovery and if fact I think that he has helped the wound recover so well because of his dedication.

Certainly could not have done this without him and his love and care.