I hate this MS it has ruined my life and devastated our lives together.
Just before I fell over those cracked and twisted paving stones at work in 2005 we were so blissfully happy together.
Then I went through months of pain and physio, at the beginning of 2006 it seemed my knee was getting better but then it seemed to stagnate and by March it was one step forwards and two backwards.
Its not that we are not happy together now but this MS has really changed our lives it has taken away all our little enjoyments like strolling hand in hand by the canals at night.
Like going shopping together(in shops-often not accessible in a wheelchair) or cooking together, going out with the dogsort going to a gig and making love.
That is all gone now and there are only happy memories which are very sweet but sadly only memories.
Feel we are both too young to be denied all that life but have to accept that this is reality now.
And that tomorrow when I wake up I won't be able to get up on my own and go to the bathroom have a shower and brush my teeth and dress myself and go into the kitchen and make us tea.
None of that sounds very ambitious but for me it is an ambition that I will never be able to realise again.
Not in anything but a dream.
Recently my dreams have been about cooking, something that was a big passion for me and something that was my job here when I was first in Amsterdam.
Now its become a dream, recently fell asleep imaging I was making scrambled eggs.
And now the reality is that I can just about eat so definitely no chance of cooking anything even something as simple as scrambled eggs.
These days it is a struggle to sit upright in the wheelchair as besides the MS it seems my spine has become curved.
My right leg muscle has become so wasted after not being able to walk properly since September 2005 it means that my body sags away to the right so my body looks twisted to the right.
It certainly not good news for my already fragile sense of self and identity to also feel so unattractive.
Do talk alot to myself about this and try my best to persuade myself that it is not so and that I am as vibrant and attractive as ever but not sure that I really believe myself.
Really can not believe how quick the MS has progressed since the diagnosis in July 2006.
Then I could still get about with the help of Nordic sticks but by August 2006 had to borrow a wheelchair so that I could leave the flat as from July could not walk very far.
Could just about get down the two flights of stairs but no further without the wheelchair.
That wheelchair was horrible really too big for me a real bone shaker that rattled and shook and made me feel it was going to split and disintegrate at every moment.
Very uncomfortable chair and pretty shitty that this is the chair that great numbers of sick and fragile people get when they ask for help.
Have discovered since the diagnosis that this society is very uncaring towards the sick and vulnerable.
It is very difficult to get help and the help you get is as cheap as possible.
So the message is loud ad clear that its shit to get sick if you are not well off.
Have got a pressure sore on my bottom and have tried to get the city of Amsterdam to give me a air cushion for my wheelchair but apparently that is an expense that they feel is not justified.
Yet it is well known that pressure sores are very bad news for people in wheelchairs.
But that is the penny pinching world of health and social care in 2008.
Health care has many people employed just to make sure no-one gets anything they are not entitled to.
Which means alot of people spend valuable time and resources ticking boxes instead of giving people the things they need to make a difficult situation liveable.
Its a crazy world where its ok for companies to make millions of euros profit while handicapped people are told that the wheelchair they want and which is best for them won't be available to them as it costs too much.
A world turned upside down where profit is king and disability is your own hard luck.
Sunday, August 17, 2008
Wednesday, August 13, 2008
Thursday, August 07, 2008
Yippee!
Have a major cause for being pleased with myself.
The other day after a year of using temazepam to sleep every night I stopped using them.
First I ate a hash chocolate every might but after 14 days stopped did not want to swop one thing for another thing I would have to take.
And can now sleep ok again in fact better than before with the temazepam.
Also it has done wonders for how I feel as I am far less up and down and somber and negative about life.
Had not realised the effects of the sleeping tablets
now I am back to feeling positive even though my life is so restricted
happy days
The other day after a year of using temazepam to sleep every night I stopped using them.
First I ate a hash chocolate every might but after 14 days stopped did not want to swop one thing for another thing I would have to take.
And can now sleep ok again in fact better than before with the temazepam.
Also it has done wonders for how I feel as I am far less up and down and somber and negative about life.
Had not realised the effects of the sleeping tablets
now I am back to feeling positive even though my life is so restricted
happy days
Tuesday, July 29, 2008
Source: BBC news
Gene found that helps combat MS
MS is a disease of the central nervous system
A gene that helps to stave off the effects of multiple sclerosis (MS) has been discovered by scientists.
A Danish-UK team found that a known risk gene for MS, called DR2b, is always partnered by a twin gene - DR2a.
The researchers, writing in the journal Nature, said DR2a tempers the effects of the risk gene and reduces the severity of MS symptoms.
They believe in the future the gene's symptom-fighting features could be exploited for potential treatments.
There are about 85,000 people with MS in the UK.
The precise cause of the disease, in which the body's immune system attacks the central nervous system, is unknown, but a range of genetic and environmental factors are being explored.
Two-thirds of MS sufferers carry the pair of DR2 genes, but carrying the genes does not necessarily mean a person will go on to develop MS.
Natural selection
The researchers looked at mice that carried different combinations of the twin genes.
They discovered the mice with just the risk gene, DR2b, had a form of multiple sclerosis with extremely aggressive symptoms.
This is a new way to assess how genes contribute to autoimmune diseases overall
Professor Lars Fugger
Those carrying both genes were less likely to get MS, and if they did, they had a milder form of the disease.
The scientists said they believed the two genes were interacting.
They said the risk gene, DR2b was "influencing" the immune system to attack the body, while the DR2a gene was counteracting this attack and dampening the effects.
Professor Lars Fugger, one of the researchers in the study and a clinical immunologist at the Medical Research Council Human Immunology Unit, Oxford University, said: "The DR2b gene clearly tells the immune system to go hard into battle against the body's own tissue, so it starts to work in a way that actually damages the person.
He added that when the team looked through different populations, the genes were always found together. He said this was most likely down to evolutionary pressures.
Assess
"For this reason, natural selection has eliminated the gene on its own, but allowed it to be inherited only when it is accompanied by another gene [DR2a] which tempers its effect.
"This is a new way to assess how genes contribute to autoimmune diseases overall."
The researchers said they hope their findings may be useful in helping to find possible treatments for MS.
Professor Fugger said that the mechanisms that reduce MS symptoms could potentially be exploited.
Simon Gillespie, chief executive of the Multiple Sclerosis Society, said: "This is a very interesting finding which adds another piece to our understanding of the MS puzzle.
"Genes are known to be one of a combination of factors which can lead to the development of MS. We share the researchers' hope that it could eventually play a part in helping to treat this very variable and unpredictable condition."
MS is a disease of the central nervous system
A gene that helps to stave off the effects of multiple sclerosis (MS) has been discovered by scientists.
A Danish-UK team found that a known risk gene for MS, called DR2b, is always partnered by a twin gene - DR2a.
The researchers, writing in the journal Nature, said DR2a tempers the effects of the risk gene and reduces the severity of MS symptoms.
They believe in the future the gene's symptom-fighting features could be exploited for potential treatments.
There are about 85,000 people with MS in the UK.
The precise cause of the disease, in which the body's immune system attacks the central nervous system, is unknown, but a range of genetic and environmental factors are being explored.
Two-thirds of MS sufferers carry the pair of DR2 genes, but carrying the genes does not necessarily mean a person will go on to develop MS.
Natural selection
The researchers looked at mice that carried different combinations of the twin genes.
They discovered the mice with just the risk gene, DR2b, had a form of multiple sclerosis with extremely aggressive symptoms.
This is a new way to assess how genes contribute to autoimmune diseases overall
Professor Lars Fugger
Those carrying both genes were less likely to get MS, and if they did, they had a milder form of the disease.
The scientists said they believed the two genes were interacting.
They said the risk gene, DR2b was "influencing" the immune system to attack the body, while the DR2a gene was counteracting this attack and dampening the effects.
Professor Lars Fugger, one of the researchers in the study and a clinical immunologist at the Medical Research Council Human Immunology Unit, Oxford University, said: "The DR2b gene clearly tells the immune system to go hard into battle against the body's own tissue, so it starts to work in a way that actually damages the person.
He added that when the team looked through different populations, the genes were always found together. He said this was most likely down to evolutionary pressures.
Assess
"For this reason, natural selection has eliminated the gene on its own, but allowed it to be inherited only when it is accompanied by another gene [DR2a] which tempers its effect.
"This is a new way to assess how genes contribute to autoimmune diseases overall."
The researchers said they hope their findings may be useful in helping to find possible treatments for MS.
Professor Fugger said that the mechanisms that reduce MS symptoms could potentially be exploited.
Simon Gillespie, chief executive of the Multiple Sclerosis Society, said: "This is a very interesting finding which adds another piece to our understanding of the MS puzzle.
"Genes are known to be one of a combination of factors which can lead to the development of MS. We share the researchers' hope that it could eventually play a part in helping to treat this very variable and unpredictable condition."
Tuesday, July 22, 2008
Not brave just want my life.
People keep telling me that I am brave and I keep telling them that I am not brave.
Just trying to live my life through this horrible ordeal of progressive ms.
There has been no choice, if there were would have been I would have chosen anything else.
No choice posssible for me as I refuse to give up on my life and my love for my darling Richie.
In 2006 when the diagnosis was made, we thought it would be a slow progression.
But it has not been slow its gone fast.
Scarily fast.
Was not prepared for the constant pain, pain from the never ending tingling and electric shocks which start at my toes and goes up my body.
And it is progressing up my body.
Its got to above my waist now and that means that soon my arms and hands will not function.
Then I will use the headmouse to use the keyboard.
Not using it yet as while I can still use the keyboard prefer doing that despite the frustration of fingers that don't function well.
Can't believe this is happening to me and to Richie.
In 2005 when the fall at work broke the cartilage in my right knee did not realise that our happy life was being invaded by an unwanted visitor.
Did not find out until the next summer that the reason that my recovery was so slow was that it was ms.
The unwanted and uninvited visitor that won't leave again.
Just trying to live my life through this horrible ordeal of progressive ms.
There has been no choice, if there were would have been I would have chosen anything else.
No choice posssible for me as I refuse to give up on my life and my love for my darling Richie.
In 2006 when the diagnosis was made, we thought it would be a slow progression.
But it has not been slow its gone fast.
Scarily fast.
Was not prepared for the constant pain, pain from the never ending tingling and electric shocks which start at my toes and goes up my body.
And it is progressing up my body.
Its got to above my waist now and that means that soon my arms and hands will not function.
Then I will use the headmouse to use the keyboard.
Not using it yet as while I can still use the keyboard prefer doing that despite the frustration of fingers that don't function well.
Can't believe this is happening to me and to Richie.
In 2005 when the fall at work broke the cartilage in my right knee did not realise that our happy life was being invaded by an unwanted visitor.
Did not find out until the next summer that the reason that my recovery was so slow was that it was ms.
The unwanted and uninvited visitor that won't leave again.
Monday, July 21, 2008
But still have moments of panic that come and go.
"Considering everything is so dangerous,
I find it difficult to find anything particularly frightening."
Virginia Woolf.
Totally agree and still do except for the moments when I realise how quick the MS is progressing.
But thinking about that can lead to making lists about things I can not do anymore and would take too much precious time so have been avoiding that.
Have moments of panic that come and go.
I find it difficult to find anything particularly frightening."
Virginia Woolf.
Totally agree and still do except for the moments when I realise how quick the MS is progressing.
But thinking about that can lead to making lists about things I can not do anymore and would take too much precious time so have been avoiding that.
Have moments of panic that come and go.
great picnic
It was a great picnic on 5th of july.
28 people were here, adults and kids.
The weather went nasty, so instead of a street picnic it was a picnic out on the covered landing outside our door.
It was our neighbour Rachida's idea on wednesday when the weather went from hot summer to wet, wet, wet summer.
Despite the rain it was great.
Shame you all could not be here too.
Bet your apple pie would have been very good Stephen.
28 people were here, adults and kids.
The weather went nasty, so instead of a street picnic it was a picnic out on the covered landing outside our door.
It was our neighbour Rachida's idea on wednesday when the weather went from hot summer to wet, wet, wet summer.
Despite the rain it was great.
Shame you all could not be here too.
Bet your apple pie would have been very good Stephen.
Sunday, June 29, 2008
Great saturday!!
Great day today went off to the market spoke to heaps of people on the street.
Love to say hello to everyone we see on our way there and back.
Got in touch with some friends and have invited about 19 friends and neighbours for a picnic next saturday on our sunny street corner.
Brilliant!
Everyone brings food and something to drink and we will have a great time.
Love to say hello to everyone we see on our way there and back.
Got in touch with some friends and have invited about 19 friends and neighbours for a picnic next saturday on our sunny street corner.
Brilliant!
Everyone brings food and something to drink and we will have a great time.
Saturday, June 21, 2008
Better days.
The two worrying days I posted about on thursday 12 June became 5 days before the urine was blood free again.
It was monday 16 June that it was clear again and I could finally bear to see what was in the bottle.
After wednesday I kept my eyes tightly closed everytime Richie emptied the catheter bag.
Just could not bear to see a bottle of what looked like red wine.
Know that it was not pure blood just abit of blood disolved in lots of urine but it looked really horrible.
Still get nervous when its time for the bag to be emptied.
Oh well going to try to concentrate on the good things now.
It was monday 16 June that it was clear again and I could finally bear to see what was in the bottle.
After wednesday I kept my eyes tightly closed everytime Richie emptied the catheter bag.
Just could not bear to see a bottle of what looked like red wine.
Know that it was not pure blood just abit of blood disolved in lots of urine but it looked really horrible.
Still get nervous when its time for the bag to be emptied.
Oh well going to try to concentrate on the good things now.
Thursday, June 19, 2008
What a tuesday,
Thought my sight was really going on tuesday as everything went hazy luckily its was only tuesday.
Was a huge shock as also suddenly could not steer the electric wheelchair.
Had to get Riche to move me round the room and could not type or use the mouse.
Found the other mouse the headmouse very difficult.
And frustrating to use as you need to be able to see well.
Could barely eat and drink
Felt kind of submerged in the horror of even more loss and so suddenly too..
then it made me very determined to be here and to be as big and me as possible.
Determined not to give in to the panic and shock of more disability.
Yes this has been a top speed journey from mobile to so disabled but still taking part and even more focussed on enjoying now.
Can''t stop the ms but will not lose myself and what I have still got.
felt stronger once I decided that.
Saturday, June 14, 2008
Donut pillow and A & D ointment
Thanks for your mail Anne with information about the donut pillow.
Never seen any like you describe here, the ones here are inflatable like small swimming rings.
Do you sit on it during the day and alternat between that ad your normal cushion?
Hello Diane, would love to know what A&D ointment is, hope you sees this and let me know. Looked on your site for a way to send
Never seen any like you describe here, the ones here are inflatable like small swimming rings.
Do you sit on it during the day and alternat between that ad your normal cushion?
Hello Diane, would love to know what A&D ointment is, hope you sees this and let me know. Looked on your site for a way to send
Thursday, June 12, 2008
Worrying days.
Two very stressful days, a sore developing on my bum and blood in my urine.
The doctor talked to a urologist who says this happens alot with catheters.
Have to stop taking the anti blood clot pills for a week, to see if that helps.
Doctor was here yesterday and will be here tomorrow.
Richie is doing his best to stop the sore developing
He gently showers my bottom every morning and night and dabs it dry gently before putting cream on it to stop the skin getting fragile.
Its all very worrying and I am having to focus on staying calm.
The doctor talked to a urologist who says this happens alot with catheters.
Have to stop taking the anti blood clot pills for a week, to see if that helps.
Doctor was here yesterday and will be here tomorrow.
Richie is doing his best to stop the sore developing
He gently showers my bottom every morning and night and dabs it dry gently before putting cream on it to stop the skin getting fragile.
Its all very worrying and I am having to focus on staying calm.
Sunday, June 08, 2008
Saturday not a good hand day.
Friday was brilliant hand day compared to yesterday when I could not take my earrings off or put the Baclofen in the pillbox nor open my specs case.
Thought Friday was too good to happen everyday.
Have not been able to put my earrings in my ears for nearly a year now.
Can not use tweezers any more nor nail cleaner nor cut or file my nails.
Can not read books and magazines nor open letters without tearing them open with my teeth and even then getting the letter out of the torn envelope is near impossible.
Saturday, June 07, 2008
Having fun and laughing is important.
My condition is getting progressively worse, my legs do not do much on the motomed machine so its the machine that does the most these days.
My arms and hands are just about functioning, yesterday had a good hand day, could just about turn the pages of a magazine, managed to plug in the charger for my mobile, could put the next days baclofen tablets in the pill box and take my earrings off as well as open my specs case and put my glasses away and shut it.
Does not sound like much but most days these simple actions are not possible.Can still type with one finger and pick up a plastic cup and use a fork to eat.Richie is brilliant he does everything for me and does it so well.
And of course lovely friends make it all better too, yesterday Karin did my nails which always relaxes me and is something that I really look forward to.Halfway through the manicure got an unexpected visit from Cecile so all in all a lovely day.
Going to the theatre on monday showed we can still go out and have a good time, really enjoyed it very much. So much so we are going to go to the Fijnhout theatre, across the road from us, to a performance this tuesday.
Just saw a very scary episode of Doctor Who, very spooky still one of the best programs on the BBC.
Thursday, June 05, 2008
Poem by Lee Bridges.
Hanging Out At Basjoe’s
When you’re hanging out
You meet many travellers who
Want to know, why do you like
Hanging out in Amsterdam, and
Being unable to articulate the
Brilliance of a Rembrandt, the
Social humanness of Frans Hals
Or the genius of De Koning, a
Quite simple and, indeed far
More honest reply is, to tell
Folks it’s because you enjoy
The smoking-coffeeshop scene
Where you can go up as high
As you wish without having to
Worry about “ The Man ’’
Pulling you all the
Way back down.
Lee Bridges
(WWWHHHOOOoooeee! 1997 Amsterdam
ISBN: 90-803701-1-8)
Here's a link to find out more about Lee
http://www.friendsofcannabis.com/friends/lee_bridges.htm
Wednesday, June 04, 2008
Nice afternoon today.
Had a lovely afternoon with a good friend, Anja, we chatted while I finished doing 3 sets of ten minutes on the motomed.
A great machine which seems to help me a great deal as it keeps my legs muscles from shortening and cramping up as well as helping reduce spasms.
After the physio came and did the arm stretching exercises and gave me a shoulder and neck massage we went round the block.
It was nice to get out for a quick tour of the neighbourhood And see people going about their business.
Nice to say hello to the ones I know as well as those I do not know, all neighbours in a friendly neighbourhood.
Monday, June 02, 2008
Happy Days!
What a wonderful evening at the theatre, Happy Days by Samuel Beckett is wonderful.
Fiona Shaw is brilliant playing Winnie.
Thoroughly enjoyed the play.
If you get the chance to see it do.
Really happy we went.
Sunday, June 01, 2008
One day at a time.
I have been thinking alot about my life and all the things I have experienced and all the people I have known and still know and that has made me quite contemplative.
It has been quite a journey from Trinidad to England with a few years in Germany then back to England and then to the Netherlands.
Been noticing that I have not posted alot recently but will do more as I do love to communicate and get feedback
Do not want to just write lists of all the things that are getting more and more difficult for me to do.
But on the other hand my blog is all about writing about what is happening to me and sharing that information.
Notice very clearly how much my disability has increased and how very little I can do.
Have to really battle to keep going as I am so aware that I need to keep my spirits up at all costs.
My auntie Sigrid, who lives in Canada phoned today which was lovely, she often like today asks me hopefully if I can walk again and is always very disappointed when my answer is no.
Poor auntie wish she would not ask but guess she wants to keep her dream alive that her favourite niece will get better.
Tomorrow we are going to Stadsschouwburg (the theater) to see Happy Days by Samuel Beckett.
Very exciting hope it will be a great night out, going to the theater is something that we have not done for years.
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