Tuesday, June 30, 2009
Awoke at around 6 am for the first time it was nice and cool fell asleep again until 10 am.
That was very pleasant indeed and today for the first time in days did not start to weep.
At 10 am it was still good fresh air with a gentle and constant breeze which made life good.
After my arm and leg exercises and leg massage took thc and baclofen and ate a mango and did not want to do much apart from visit and read other people's blogs.
Had a very good time and happily ate a few tamarind sweets and sipped lemonade which was very pleasant.
Marianne came round as she does evry Tuesday this time she brought me a delicious mackerel roll and we both enjoyed the lemonade, Richie had just made it and she was astounded how nice it was.
The bearable weather lasted until 3 pm and then the temperature went bananas.
Now I am going to stop have some thc to get ready to be rolled around so Richie can put the sling on me so he can hoist me out of bed for a quick shower.
Might write more later but this could be it for today.
Tomorrow intend to organise some things so that they do not keep bothering me and I can enjoy all I can of this summer.
Hope you are all having a good day.
Take care to keep cool.
Monday, June 29, 2009
Tomato and potato plants on balcony.
This heat is knocking me out and making all the aches and pains more intense, it is because it is hot humid weather.
If only it were hot and dry think it would be easier and better to cope with, but hot and humid intensifies the MS symptoms.
Shame as I used to love it being hot, the last few days have been agony and at night it gets very late before we can get some relief from the all enveloping sticky heat.
Just got interrupted so have totally lost what I was going to write about which is probably just as well.
Glad I realised on Saturday that it was the sticky heat that was getting to me and not that I had totally inexplicably lost the plot big time.
One of the things I have never been too fond of has been an over concentration on every aspect of every moment in time always thought that over analysing everything meant you would miss out on the moment itself.
Now I realise that there is a middle way that it is good to examine and evaluate what you do but not good to get so stuck in looking at one aspect you do not see more of the whole picture.
In fact you can get so involved in the detail that you can forget anything else including yourself.
The fast progression of the MS makes it difficult for me to nurture good feelings about myself and has meant that my self image has been to hell and back.
Important to have one and one that is not just being an invalid, mind you as invalids go I am well loved and cared for and well nourished.
I am reasonably cheerful, love teasing the dogs gently, mostly pretending that I have thrown the ball or toy.
Love my darling Richie so vey much in awhile he will be in here hoisting me out of
bed and under the shower.
Looking forward to that very much and hopefully the shower will refresh me even if only briefly.
Later when I am back in bed I will seek some mental refreshment and stimulation and information by reading some the blogs I follow.
Recently I have come into contact with two people from Trinidad, Sita is in Ontario and Rhapsody Phoenix in Toronto.
Have had the pleasure of bonding with Sita about the pleasure of Trinidad food, we both were remembering the smell of hops bread.
Shame you can not describe a smell, all I can say is it is a unique smell which I can not explain.
The smell of Hops bread is something another Trini will understand very well indeed, a lasting memory of mornings at home in Cascade, Port of Spain and my dad coming back form getting the morning rolls.
Going to leave a supportive message on Amelia’s blog she has her very first infusion of Tysabri tomorrow.
Wonder how Kimberly is doing over at http://myjourneywithms-kimberly.blogspot.com/
And how Rae http://myweathervane.blogspot.com/
And JC http://jcatmom.blogspot.com/
And Anne http://disablednotdead-anne3.blogspot.com/ are doing
And check out her new blog http://vitaminsmineralssupplementsdiets-ohmy.blogspot.com/
As well as Stephany http://bipolarsoupkitchen-stephany.blogspot.com/
And Celeste Maia at http://maiasintothemoonlight.blogspot.com/
And Diane http://dj-astellarlife.blogspot.com/
And Lille Diane
And Rain http://rain-mountain-mamma.blogspot.com/
And Tara at http://livingdaytodaywithmultiplesclerosis.blogspot.com/
And Mort at
Well guess it is time to stop and get shnowered r i ght away.
After the shower will post the photos, the pictures that I will post today are our tomato and potato plants, the potato is in the square box.
Hope you are all having a good day..
Sunday, June 28, 2009
Pictures from Wales from Gareth.
Had a down day yesterday, think that the heat was the main reason for that by early evening really felt I had enough of all of this.
MS really does suck not only do you have to put up with all sorts of shit but it also fucks around with your physical appearance.
Just thinking yesterday how shitty it is, to not only lose the facility to move, but to lose body weight at quite an alarming rate.
My body is totally different now, legs are very thin, and so were my arms, like twigs last August but have built them up abit with 30 minutes exercise everyday.
Sadly can't do quite much for my legs, do use Motomed for the legs for 30 minutes every day.
Just did not expect my body to change so drastically, I was 5 ft 6 inches and medium build.
Now there is much less of me, to me it is like night and day how I look now compared to 2006.
There has been a pretty drastic change then I looked like an attractive woman in her fifties now I look like an invalid in her late sixties.
My breasts have vanished, my bum went last year and my face went quite gaunt it is hard to come to terms with these changes.
Really hard and quite a big shock which is not easy to come to terms with so quickly.
Not easy at all is an understatement if there was one.
Suppose if I look at it logically then I should have realised that being inactive means muscles are not being used and therefore they become slack.
This stands to reason it is just I did not expect such drastic changes in how I looked.
And this of course influences how I feel, which is not happy that my self-image has taken such a pummelling.
Am determined to rise above this but this will cost me dearly and it hurts like hell
that this too has been taken from me.
It is amazing how much the body and the mind can take, quite amazing really.
Have been thinking alot about the past and realise that for me it really is all gone now.
There are lots of questions that have become self evident now especially when looking back and discussing the events with Richie.
Some things for which there are no answers as I can't ask my parents anymore and others because events have long since overtaken them.
Today right now can’t imagine wanting to be around for too much longer not if I am 24/7 in bed, had not realised the effect being in bed has on the body and on the mind.
As the muscles are not being used everything gets slack and starts to ache from the constant pressure of lying in one position.
The mattress constant changing pressure stops me getting pressure sores on the rest of my body.
In some ways I can see that I could survive ok indefinitely in bed if it were not for my muscles.
If it were all down to Richie’s love and care I would be restored now I am convinced of that, Richie’s love and care is absolutely wonderful.
His care has made this very long period in bed bearable; knowing that he is there for me has made all the difference for me.
Think that this very hot and sticky muggy weather is very hard for me and I may also be down because of Michael Jackson’s death.
Will do my best to lift my spirits by reading other blogs and posting comments that prospect makes me feel better and the fan is helping me too.
Hope everyone is having a good day today am determined I will too, perspective is everything think mine is back to looking for the good things in my life.
Saturday, June 27, 2009
Got woken up this morning by a parakeet who seemed to have visited the bird feeder to shout up the neighbourhood.
Later on asked Richie about the bird shouting and he said that he had looked at the birds twice and each time the one making all the noise did not seem at all worried by Richie.
He flew off and came back, according to Richie there were two, an older one eating peanuts and a young one who had no clue how to get hold of the peanuts.
Eventually the birds flew off and we both got a bit more sleep, really glad Richie had totally opened the one window.
There was no sign of a breeze woke up because of the shrieking bird and became aware then quite how sweaty and damp I was.
Luckily managed to sleep again, in fact managed to do so twice which is brilliant good luck.
Lay here thinking how strange it was that Michael Jackson was dead, funnily enough as soon as I saw the news that he was rushed to hospital after a heart attack.
Thought right away he may not recover from that, this was because Nick died of a heart attack in hospital, so immediately thought what if.
Just never expected what if to happen right away, was really fast, for a moment felt that maybe I should not have thought he might die.
Obviously did not know that my thoughts were so powerful.
Since I inhaled the thc have felt a lot better, the arm exercises are quite tough these days but well worth doing so are the leg exercises and the leg massage.
All help to relax me and make it easier to cope with the pain.
Wish I could have told MJ that cannabis was much more effective way to cope with pain than the cocktail of opiates he used.
Very sad that he died before he had even done one performance, now no one will have seen him come back again.
Poor Michael and poor us, we lost a fine performer who just wanted to be loved and did not realise that he was loved by so many.
Friday, June 26, 2009
Please will you all visit Amelia's blog today and give her some love and support.
She is in alot of pain and discomfort and is waiting nervously for her first Tysabri infusion on Tuesday 30 th of June.
If you also use Tysabri perhaps you can visit Amelia and ease her worries.
Saying hello with as many people as possible would be brilliant.
Poor old Michael Jackson all that talent lost, according to the newspapers it was prescription drugs that caused his death.
The star had been popping pills, including anti-anxiety drugs Xanax and Zoloft and painkiller Demerol, for weeks before his death.
It seems that an injection of Demerol had caused respiratory and cardiac arrest and after an hour trying to resuscitate him the doctors at UCLA officially announced he was dead.
Very sad death of a former child star and pop super star, sure many are sad about his death, me too, as I think of what could have been.
Shame he did not have the life he needed to have instead of that strange half life of being in the limelight that robbed him of his childhood.
Sad that again it was prescription drugs that were responsible just like with Elvis and Anna Nicole Smith.
Thursday, June 25, 2009
I would like to pass the A Hoy Award to a wonderful new blog and to a wonderful woman.
I am very impressed with this blog and would recommend you take a look.
Maia’s Into the Moonlight.
My name is Celeste Maia. I am a painter, a writer and illustrator of children’s books, a wife, a mother and a grandmother. I was born and grew up in Mozambique and studied in South Africa, France, and the United States. I have shown my work in many countries on four continents. I love to travel, to read, to swim, to listen to introspective music and watch intelligent movies. I am attracted to the color red. I enjoy cooking and eating well, being with friends and having a good laugh. I will be writing about painting and esthetics, living with CLL, food, places I travel to, random thoughts and photographing along the way. I look forward to sharing reflections with you. You can see more about my work and my complete profile at
Please pass to 5 other blogs.
Two of those must be new to you.
Post and mention who gave you the award with their url.
Then go to each blog you pick and ask them to come by your blog and pick up their award.
As Matt from A Hoy says:
I'd like to think that receiving A Hoy will be different to most blog awards, because of the stipulation that one makes an onward award to at least two blogs that one has never seen before.
It's a psychological thing.
Suddenly having somebody turn up, out of the blue, and say "your blog's cool: have an award," has significant positive impact.
I know this, because when I receive awards, I make a point of searching for blogs I've never seen, which are "off the beaten track" of stuff that I usually look at, and the responses are
worth the extra effort.
This is, I would argue, also beneficial to the giver, because it requires them to think of things that they like - and you'd be surprised how few people think in those terms.
The award is called the A Hoy for Chris Hoy,the best track cyclist
I received The Bow Award from Lucy@
What is left of a whole new life
I am married, had 5 children. 4 boys and 1 girl. Oldest is deceased. 9 grandkids,10 great grandkids.I love hearing from people, and have made some true friends on the blog, (I think) I hope. We have a fat beagle named Spunky 5 years old and spoiled rotten, but we are huge dog lovers.
Lucy's blog is well worth a visit.
The Bow Award for Outstanding blogs, blogs that inform the mind and expand the horizons.
Please pass to as many other blogs as you like.
Post and mention who gave you the award with their url.
Then go to each blog you pick and ask them to come by your blog and pick up their award.
Nourish: Living, Laughing, Winning.
I am just like you - on the journey, coping with Multiple Sclerosis, putting one foot in front of the other and trying to find the best way possible to do so, with a little help from my friends.
Navigating the Journey of MS
My life with Multiple Sclerosis and Tysabri
MS~LOL: Multiple Sclerosis a Life Of Learning.
Living with multiple sclerosis is like a box of chocolate. You never know how it will affect you the next minute, hour, or day. I refuse to let MS control my life...what about YOU.
Maybe I'm Just Lazy: One Woman's Journey Through MS and Life
In September '07, I was diagnosed with Multiple Sclerosis. In an effort to maintain my sense of humor while integrating this new reality into my life, I started this blog, which has become my public journal, an opinion column, and a rough draft for my book. MS prompted this project but it's also about life in general. My life, that is. I welcome comments--even the negative ones. They make me think. (Although I think more of those with names attached.)
I found it! This has been a guiding principle for me since I read it: "It's what gurus call higher consciousness. Biologists call it altered states. Psychologists call it super-sentience."..."And Christians call it answered prayer. Sometimes, divine revelation simply means adjusting your brain to hear what your heart already knows." --Dan Brown 'Angels & Demons'
Hope you all visit these excellent blogs.
Women have taken to the streets of Tehran. This shows the new face of Iran,
Iranian women stand up in defiance,and flout rules.
June 23, 2009.
A young Iranian woman named Neda is gunned down in one of the most iconic images of the last week. Another walks down the street, defiantly showing off her hair and body in a revealing dress. And still another woman says she's not scared of paramilitary forces -- no matter how many times she gets beaten.
Women have taken to the streets of Tehran. "This shows the new face of Iran," one expert says.
‘’ When they want to hit me, I say hit. I have been hit so many times and this time it doesn't matter. I just want to help my brothers and sisters," says the 19-year-old woman whose identity is being withheld by CNN for her safety.
Amid the clashes and chaos, there has been a recurring scene on the streets of Tehran: Women, in their scarves and traditional clothing, at the heart of the struggle.
Some are seen collecting rocks for ammunition against security forces, while video showed one woman trying to protect a fallen pro-government militiaman wounded in the government crackdown.
At Shiraz University, riot police clubbed women dressed in black robes. "Don't beat them, you bastards," one man yells.
When security forces come to attack, the 19-year-old woman protester says she looks them in the eye and asks: "Why do you kill your brother? Why do you hit your mother, your sisters?"
"We all tell them, if you're Iranian, you shouldn't do that to your people, to your own country's people," she told CNN by phone.
Watch woman stand up in defiance to power.
But it's the woman known as Neda who has become the symbol of women on the front line that has galvanized opponents of the Iranian regime.
In a widely circulated video, Neda is seen in the middle of protests over the weekend.
She is shot and drops to the ground. Blood runs from the side of her mouth as a few people, including her music professor traveling with her, press on her chest and shout her name.
One pleads, "Do not be afraid. The camera closes in on her face as her eyes roll back and are still.
Karim Sadjadpour, an associate at the Carnegie Endowment for International Peace, said the image of Neda and other women at the protests showed the difference from the 1979 revolution.
"The iconic pictures from the revolution 30 years ago were bearded men. This shows the new face of Iran -- the young women who are the vanguards of Iran."
Abbas Milani, the director of Iranian Studies at Stanford University, agreed that Neda was becoming a symbol for all the women who have become involved in the turmoil that has followed the disputed election.
"She will become the image of this brutality and the role -- the truly significant role -- that women have played in fighting this regime.
I think that women are the unsung heroes of the last few years. They are the ones who began chipping away the absolute authority of the mullahs."
The protests haven't just been confined to Iran's everyday women. The daughter of former President Ali Akbar Hashemi Rafsanjani was arrested over the weekend while taking part in a protest. She was later released.
In addition, Zahra Rahnavard, the wife of Mir Hossein Moussavi, whose apparent defeat in Iran's presidential election has sparked the unprecedented demonstrations, campaigned for her husband, an unusual step in politics in Iran. Her public support of his candidacy underscored his professed support for women's rights. Learn more about the timeline of events.
And in another act of defiance, apparently from after the election, a woman who appears to be in her 20s or 30s walks down a street in Tehran, showing off her body in a revealing dress and displaying her long, curly hair. In Iran, women are forbidden to show their hair, and they must keep their bodies covered. "Lady, is it a revolution already?" one female driver says as she passes by.
The 19-year-old demonstrator, who spoke by phone with CNN, says women are out in the streets in much larger numbers than men. She provided CNN with images of paramilitary forces on Saturday confronting protests, just before she was beaten. She says she was beaten again during protests Monday.
"The women are all together and they say, 'We're going to stay here.' There are so more [women] than men," she said, referring to the number of women protesters. "Until now, the women didn't have a chance to express themselves, to say that we are important in our country's future. But now, they can play an important role in our freedom. It's a good chance for us."
Is she optimistic?
"I'm absolutely optimistic, because history has taught me that all the revolutions start like this," she said. "Every revolution has violence and some people die, but nothing stays like this forever."
Wednesday, June 24, 2009
Gareth's garden in Wales.
Have been very fortunate this past week to be able to sleep until 10 am in the mornings.
It has been brilliant and of course I am hoping this will carry on for a long time.
The other thing that has been wonderful is not waking up shrieking with pain like I was doing before.
Maybe the gentle warm weather we have been having is good for me, notice when it got alot hotter I was having a hard time unless the fan was on and directed at me.
Would so love to live somewhere that had mild good weather all year around think it would be very good for me.
I guess could take it hotter as long as I could acclimatize and it would be constant temperature.
Oh well that is not here so have to enjoy this while it is summertime and keep the sun alive in my memory for when the cold days come back.
Find often get a touch sad just after mid summer when I realise that is us at the top of summer, the shortest night.
Now we are counting down to the longest night of the year.
But first we have a couple of beautiful summer months ahead of us, two months to enjoy.
Really looking forward to several people visiting such as beautiful Darren who should be here next month.
Angela will be over for a week in August and in September my cousin Katrin, from France will visit.
Be nice to see them all especially Angela, she wanted to visit here alot more than just one visit last September but sadly her mum fell and broke her pelvis.
It took months for it to begin to heal and alot of time and effort on Angela's part to get support organised so her mum could go home again.
Had great news from Gareth when he was here recently, that he and Paul are also over for a week in September, which is the best news.
So nice visits to look forward to as well as small pleasures like the tamarind balls that Richie is making right now.
Hope they will be very hot and peppery just like Trinidadian Tamarind balls, almost can not wait!
Wow nice and hot just like 1ike Trini Tamarind Balls.
Tuesday, June 23, 2009
Wonderful weather for the beginning of summer, in recent years the start of summer has been very damp.
Wimbledon has usually been the signal for lots of rain and once it really starts it would often go on for two weeks just like Wimbledon itself.
It would also rain on St. Swithin's Day which meant forty days of rain so basically often that would be the end of dry summer weather.
This year is different and the 21 to 22 June has been very pleasant warm weather, be nice if it were like this all year.
Sadly not in Northern Europe which has in the past been very damp during the summer months something which can get me very upset.
Can get the half empty glass way of thinking instead of the half full glass which I do prefer.
It is amazing to see that perspective has a huge influence on us, guess because we are such emotional creatures.
Have really noticed that if I want to change how I do things I have to do it quite mechanically in order to learn the new behaviour and to start to imprint it on my mind.
Then when it has become something I am used to, when it has become a habit I do not need to make sure I do it anymore.
Was even like that when I decided that I would do my best to live in the moment this moment and enjoy all I can.
Had to initially remind myself that was what I was doing, almost had to say to myself '' enjoy this now ''
Certainly noticed the positive effects on myself but more importantly on Richie and everyone else in my neighbourhood.
Am amazed that looking back now can see that it was actually relatively easy to learn a new habit.
A habit which is good for me, also learned to ask for what I want, and ask clearly, found out that friends appreciate it.
Makes everyone’s life easier and that good feeling reflects back around so everyone benefits twice and more.
Richie just fed me three strawberries from our strawberry plants, they were small but packed full of taste.
He also told me that the tomato plants were doing very well; he was reeking of tomato as he stood next to me.
Really exciting seems our potato plants are doing excellently too, hope the pepper plant does well too.
Well summer is bursting out all over hope the temperature does not go too mad as then the MS symptoms go abit mad.
Guess that will mean time to put the fan on constantly.
Have a good day I intend to, Marianne will be around soon with delicious things from the Suriname Snadwich Shop.
Will be getting a roll with pom (stewed chicken and cassava) and one with bakkeljauw (saltfish) and both with lashings of pepper sauce and a tin of sorsop or guava juice.
Really looking forward to it very much.
Best bit about today is that I did not wake up until pleasantly late at 10.30 and then my pain was quickly helped to subside with the application of several bags of thc and the baclofen, arm and leg exercisews and leg massage and a beautiful ripe Pakistani mango.
Richie is making lemonade and the dog biscuits he made earlier are in the oven giving the dogs who are waiting in front of the oven hope that they will get some soon.
Life in short is good today.
Have a great day.
Monday, June 22, 2009
Sunday, June 21, 2009
Once I started thinking about Trinidad I remembered various things like Hops Bread, these are big round rolls, crusty on the outside and soft and fluffy on the inside.
The smell of Hops Bread is different to any other bread smell, don't know why that is but it is true.
Smelt it again, that unique smell in 1997 when I visited Trinidad for the first time since we left in 1962.
Once I started thinking about Trinidad I recalled the first time I had eaten Trinidad food since our departure in 1962, was when I visited my half sister Carole in 1975.
I went to stay for the weekend at the house she was living at in Barnes, London.
Her ex had also just arrived from Trinidad, he had amongst other things avocados and mangos and rum and lime and tamarind balls with him plus chickens and okra and plantain.
He had most of the ingredients for a good Trinidad meal with him.
Carole made curried chicken properly; she burned the sugar, and then added the curry spices and chicken pieces.
She made coo coo which is a okra and cornmeal pudding left to set and either turned out of cups or one pudding bowl.
She also made rice and peas, with pigeon peas and side dishes of fried plantain and dhal and avocado and chopped cucumber with salt and pepper and vinegar.
Carole had also made my favourite mango pickle, which is mango and salt and pepper and vinegar and there was Matauk’s Pepper Sauce (Trinidad Hot Pepper Sauce)
This was a feast for me like I had not had for ages, this was down home food and after dinner we ate mangos and drunk rum punch and ate hot channas (roasted spiced chick peas) and tamarind balls (tamarind with hot pepper and sugar).
Will never forget this feast, this was such an important event for me when for awhile I felt a real connection with the place I was born.
That was also the summer my half sister’s took me to a Trinidad Gala Dinner and Dance party to celebrate the visit of Sir Garfield Sobers to England.
He had been the West Indian Cricket Team Captain, and was the best cricketer ever.
He was in the country to receive his Knighthood from the Queen.
The party for him was spectacular, Trini food and drinks in abundance plus I was introduced to the great man himself by my sisters and he asked me to dance.
Well Wow! I danced with Gary Sobers, the best cricketer ever.
These two things gave me back a tiny part of my Trinidad identity and in 1997 when I got back to my Little Island in the Sun I discovered it was really as beautiful as I remembered and still remember.