Richie started a blog yesterday here is the link:

http://screamingrichie.blogspot.com/

Judy Collins and Pete Seeger

Good news.

Good news today from the plastic surgeon who visited this morning with a colleague and the wound care nurse from the Amsterdam Rehabilitation Center.

The doctor was very happy with how the wound looks and is now confident that it should heal slowly.

He confirmed that there was now no need for an operation.

What a relief.

He complimented Richie for his excellent care and especially for keeping the wound clean and well bandaged.

The nurse said they could not do better at the rehab. center.

We are both very relieved and happy.

And Marleen

Spike

Its been a quick year for me, last year at this time only my legs were immobile.

Could feel the nummbness creeping up my legs, by Christmas it was creeping up to my waist.

This October the numbness has crept up to just under my breasts.

Pressure sore.............

This nasty deep wound on my bottom is a pressure sore from sitting badly in the wheelchair.

Sadly easier to get than to get rid of, happens when balance and sensation do not work anymore.

In June a team from the Rehab. centre advised that alterations/adaptations be done as quick as possible to prevent pressure sores.

No immediate action happened as it was holiday time so had to wait til end of July/beginning of August.

I also applied for a constant airflow cushion you get them from Doove here in the Netherlands and Ease in the US.

First they denied their existence then they said they did not work and then I found out it was considered too expensive.

Money being more importent than any other comsideration.


So my wheelchair was not adapted in time to give me adequate support, it was obvious in March when I got the chair that I was not sitting good.

The result is the pressure sore that has kept me in bed since 21 August.

Hope that it heals well so that I can sit in a wheelchair again and get outside to visit friends and the market.


Well doing my best to stay positive and make the best of it.

Happy Days at home.

Pretty euphoric after wednesday, felt like I had been given the best present in the
world.

And I had.

Staying here with my darling means everything to me and its the best present ever.

Wednesday it really hit me how much how much Richie loves me and how much I love him.

Been very emotional and very happy too.

Happy Days!

The meaning of life.

We don't need to think too deep and hard about what this life is all about.

Life is about here and now and living and enjoying this time.

Enjoying being.

That's what matters enjoying what you have.

Not worrying about things we can not change.

Concentrate on the things we can change and influence in our communities.

Concentrate on spreading love and understanding and coperation.

We neeed to remember that we are unique individuals living our lives.

Enjoying our lives is the meaning of life

What a relief!!!!!!!!

Both of us slept very badly tuesday night due to the plastic surgeon coming round in the morning.

His visit almost gave me back the mobility in my legs, as I was so very scared that I nearly jumped out of bed and hid in a cupboard!

The anticipation was as it turned out worse than the reality as instead of immediate removal to hospital the plastic surgeon after a through examination told us that there was significant improvement in a small area of the wound to indicate that the wound could heal in time.

He did not think that a big operation and months in rehab with no guarnatee of success would be a good course of action for me.

So I can stay at home with my darling Richie which is a huge relief for us both as I do not want to waste the good time I have left in hospital.

Especially now when it is becoming clear that I do not have too long to go, hope I am wrong and there is still years ahead with my love.

After the visit which seemed to last forever we spent the afternoon happy if somewhat tired and both slept well last night.

My mum

My mother's parents

My dad is the one on the right.

Me in 2001 age 50.

Plastic surgery

In the morning we will hear if I have to have plastic surgery and when I have to go to hospital.

From what Richie says it seems the chances of not going to hospital are slim.

I am really scared so is Richie, we have both cried which relieved some of the pressure we have been under since dr.Smit told us two weeks ago that he wanted a plastic surgeon to give his opinion.

It means two months in hospital and rehabilitation centre, two months away from my darling and home.

Two months of being a patient and two months of being bored of not being able to be online.

Just hospital routine and bad food and being terribly patient.

The saintly human dartboard!!!!!

Feel fresh as a daisy after my darling gave me a wonderful shower and fresh duvet cover and sheet and pillow case and topped it of with a great dinner.

A great evening spent laughing and talking with my darling and being pampered by him lovely.

Wish that healing prayers and pleasant thoughts would help me get better.

Sadly that is not possible with a chronic disease such as MS and especially in the progressive phase.

Doctors are not interested in progressive MS because they can not medicate as the MS drugs available are all for the other forms of MS.

Additionally they can not give a prognosis as to the course of the disease as they can with most other diseases.

This must be very unnerving for the professionals, always strikes me as being abit like the Emperor's new clothes.

Poor doctors suddenly revealed as not having the knowledge we assume they have and suddenly its the Wizard of Oz and behind the curtain there is a man not a wizard.

Both neurologists that I have been to could not tell me anything apart from advise me that cannabis was the best painkiller.

Day by day.

Listening to pleasant music on fire.fm, its a great free add-on in Mozilla Firefox.

Did not notice the track was sad until my thoughts became very down and gloomy.

When I thought of my immediate future suddenly felt it was not going to go as I had hoped.

Suddenly felt like what I was wanting was being taken from me by this pressure sore.

Luckily got myself out of those thoughts, easy to get stuck there and howl endlessly.

Putting another singers name into fire.fm changed everything.

Feel better and will take it day by day.

Best way for me.

Saw the doctor and the nurse today from the Rehabilitation Center Amsterdam.

Not good news today, last week progress was slow but was being made.

Today it was clear that not only was there no progress but the wound had got worse.

We got very stressed about it all and now we are faced with difficult choices that need to be made.

We are going to let it all sink in first and then we will discuss it and make a choice.

Port of Spain, Trinidad.

Me and Spike

Still in bed been in bed since 21 August.

Think I am doing very well keeping calm and making the best of it.

Difficult to do but not when you look at the alternative.

Not my kind of alternative.

Do not want to waste what I have.

It's clear from the way my body been steadily declining that my decision to make the best of it is the right decision for me.

Daily OM

You may jump to conclusions today when interacting with others, especially if you are assessing your exchanges from an emotional or biased point of view.

Perhaps you are feeling suspicious of other people's motives or are making assumptions about how you're being received.

If this is the case for you today, it may be because your mind is busy referencing the past and compelling you to get stuck in projections.

Consider focusing your attention on the present moment instead.

Paying attention to what's really happening, rather than getting mired in mind chatter, can help you to think clearly and rationally so you can form appropriate conclusions.

Staying present allows us to process information rationally during our interactions with people.

Being in the moment frees us of the mind's tendency to dip into the past or jump ahead into an unknown future.

We can listen attentively and take what we see and hear for what it is in its own context.

The objectivity this affords us allows us to come to more pertinent conclusions.

We can also respond to what's in front of us rather than react from past experiences, our fears, or conditioning.

Stay present and absorb what is happening to you right now, and you will be able to honestly assess your situation and draw more accurate conclusions.

Paddy Casey Saints and Sinners

Great weekend with a good friend

This weekend with Angela was brilliant, the best.


Good to see a good friend and spend time together like we did this weekend.


Especially like that we are on the same wavelength and can be ourselves.


Also real good is the way it does not seem to matter how much time has passed between the last time we saw each other.

It always feels like we just saw each other the week before instead of four years ago, like it was this time.

Yippee a good friend is visiting this weekend.

Yippee a good friend is visiting this weekend.

We met 17 years ago at Hillcroft College, Surbiton, London.

She is a good friend I am very happy to see her tomorrow.

Pretty excited about her visit.

Roll on tomorrow!!!!!

How do they do it??????

Always used to be amazed at how people managed to keep going under what seemed to be dreadfully difficult circumstances,

How do they do it I often thought then.

And now I know the how and why.

How they and you and I do it is we just keep going no science involved.

And why because there is no other option.

You find out that what you have is precious.

And the less it is the more value it has.

Life with MS is .................

Everyone wants me to get better but I won't sadly.

I will only get worse.

This is a degenerative disease.

I was fortunate to not know that I had it for quite a few years.

Have adjusted to a life that is dramatically different from my/our life before.

Now I can do nothing for myself, can't even move my toes anymore.

Can only move my arms and type with one finger.

Richie does everything, gets me out of bed with a hoist.

Showers, dresses and helps me with everything.

Now he dresses the pressure sore which has me confined to bed until it heals.

Been in bed for 3 weeks now and have another month to go.

But I will not give up on my life and our life together.

Richie is brilliant looks after me with such love.

Despite this horror that has come into our happy life and turned it all upside down

we are still happy together.

Diffícult for us both, Richie works hard and has to cope with seeing me get worse.

Plus the frustration of not being able to do anything to change things.

Also difficult for me, alot of pain all the time and being so dependant for

everything.

I make the best of everything and I still have the best.

My beautiful darling Richie who I love so very much.

And who adores me.

He fills my life with love.

And I love him back and let him know how much everyday.

So you see its horrible but we have our great love.

And we certainly make the best of everything.

My darling Richie looks after me brilliantly.

Have been in bed for three weeks now have lost track of time.

Had to look at the calender on my phone to see the date when the wound nurse told me had to stay in bed.

That was 21st of August.

Seems light years away but is only three weeks ago.

Have been told that I need to stay in bed for another month.

Would have gone mad without Richie looking after me so well and with so much love.

He is my darling and makes my life so good.

Somewhere over the rainbow

Wellsphere

Does anybody know anything about a website called "Wellsphere"? I would appreciate any information or opinions you can offer.

have to make the best of it and will.

first post in just over a week, have to stay in bed for a month.

the nurse told me 2 to 3 weeks last week and yesterday said a month was more realistic.

too much time and been noticing more deterioration in my condition.

difficult to type problem using the mouse holding cutlery and eating.

as long as i can post i am happy.

People basically want to be kind to each other.

Anne's kind offer has really cheered me up what a lovely gesture.

And confirms my belief that people only want to be good to each other despite the media wanting to whip us all up into a frenzy of paranoia about all the baddies out there.

Not saying there are not unpleasant things and people sure there are but firmly convinced that people basically want to be kind to each other.

When I was studying criminology it became clear that the fear of crime was greater than the actual reality and the media feed on that fear.

But of course newspapers need sensations to sell copies and more so now as newspaper sales plummet as the internet has stolen their number 1 position.

Love makes the world go round.

hello Anne,

Thank you so much for your kindness its lovely of you to offer to get an air cushion for my wheelchair but I can''t accept it as its too expensive.
The cushion I need is not a static cushion filled with air but a wheelchair cushion that gets charged up at night and that changes pressure as you sit on it.
Thanks again for your very lovely and generous offer.

MS is a shitty illness!

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.

Herrad and Peggy March 1960 Trinidad

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

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."

Joey Ramone - What a wonderful world.

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.

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.

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.

Parrots.

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.

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.

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.

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

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.

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.

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.

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

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.

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.

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.

Parrots in Amsterdam.

These parrots escaped from captivity and managed to make new lives for themselves.

There are big flocks here in Amsterdam,the first were seen in the Vondelpark about twenty years ago

Now they are all over town and we have the pleasure of seeing them on our bird feeders.

Which is brilliant, love them being free and not in cages.

Parrots on our birdfeeder

Howl by Allen Ginsberg

A good friend sent me this:


In The World And In Ourselves
Feeling Fed Up With Humanity
From time to time, we may all feel fed up with humanity, whether it's from learning about what's going on around the world, or what's going on next door. There are always situations that leave us feeling as if people are simply not capable of behaving in a way that is coming from a place of awareness. Often it seems as if people are actually geared to handle things in the worst possible way, repeatedly. At the same time, none of us wants to linger in a judgmental mood about our own species. As a result, we might tend to repress the feelings coming up as we take in the news from the world and the neighborhood.

It is natural to feel let down and disappointed when we see our fellow humans behaving in ways that are greedy, selfish, violent, or uncaring, but there are also ways to process that disappointment without sinking into despondency. As with any emotional response, we honor our feelings by feeling them fully, without judging or acting on them. Once we've done that—and we may need to do it every day, as part of our daily self-care—we can begin to consider ways that we might help the situation in which humanity finds itself.

As always, we start with ourselves, utilizing our awareness of the failings of others to renew our own commitment to be more conscious human beings. We are all capable of the best and the worst that humanity has to offer, and remembering this keeps us in check, as well as allowing us to find compassion for others. We may find ourselves feeling compelled to serve people who are suffering injustices at the hands of other people, or we may begin to speak out when we see something that we don't think is right. Whatever the case, the only thing we can do is pledge to serve the best, rather than the worst, of what humanity has to offer, both in the world, and in ourselves.

My belief is in humanity and not in religion.

My belief is in humanity and not in religion.

Have become more aware of this as my disability has increased.

It is very important for people to live together in communities and help each other.

Caring for each other helps keep the bonds between people strong.

This capitalist society is all about alienating us from each other.

It’s all about the exploitation of the planet and us.

We don’t need to buy self-help books or finance a guru.

We all have the power to make changes in our lives and the lives of others.

All we need is to believe in ourselves.

Love myself unconditionally.

Thanks for your comment Diane,keep forgetting that I really need to learn how to love myself again.

The MS has really rattled me and my picture of myself.

That picture has been totally disrupted.

It is like a puzzle that's difficult to put together.

Feel very ambivalent about myself and give myself a hard time.

Do have courage for everything else but accepting myself as I am now.

It really works both ways feel heaps better, thanks to you all.

Wednesday this week we have been living here a year which is great.

What's not so great is realising again how quickly the ms has progressed.

Thirteen months of not being able to look after myself, of not having any movement at all below my waist.

Not being able to walk was bad, until April last year could still pull myself out of the chair, could go to the toilet that stopped a month before we moved.

My hand function is minimal, getting difficult to pick things up, typing is quite alot of work.

Type with either right or left index finger depending on which one is working.

Eating is also quite struggle.

Been having moments this week where everything gets too much and the tears come flooding out.

Does not last long but it shocks me as its so intense.

Today I got very upset my new software was installed plus head mouse which is great.

Been waiting for it since February with eager anticipation.

But when it came it made me realise again how handicapped I am.

Plus got tired cos installation and explanation took two hours

Also hate new things when I can not use them brilliantly right away.

Its murder being a perfectionist!

Felt alot better after the huge howl and after a refreshing cup of pomegranate juice.

Then had a look at my recent posts and all the friendly and caring comments.

Really appreciate the comments, would love to meet all the lovely people who make them.

It really works both ways feel heaps better, thanks to you all.

Already a year in this flat!

On May 7 it's a year that we are living here when I look back I can see lots of nice things.

Like being able to go out without booking the mobility bus and without being carried down the stairs in that scary little seat swinging from hooks between two men.

Its nice and roomy here with lots of floor to ceiling windows so I can see out and enjoy all the neighbours going by.

It's a nice place for people to come round to and we have had more people visiting us here than in the old place.

Have really enjoyed being able to get out so freely especially going to the market, love being there seeing all the people exchanging smiles and hello's with strangers.

Looking at all the stalls and admiring the wares, the colours and the smells. Beautiful!

What's not been so beautiful is how much my condition has deteriorated since last May.

Last May just after we moved I could not write with a pen any more, one minute I was writing lists and the next that was it could not hold a pen.

Now I can just about manage to eat, getting the fork from plate to mouth is a hell of an effort.

Picking up a glass is tricky and I can't drink out of anything but plastic cups these days.

So my days of sipping a rum punch or a nice wine while eating pistachio nuts are sadly over.

The wee bit of mobility I had last year is gone as I can no longer put on a top of jacket or my earrings.

Can just about brush my teeth but not put the toothpaste on my brush, can't even wash my face can't cup my hands and bring water up to my face.

The passive hoist has been bad, very bad for me as it caused alot of spasms, putting the straps von caused me dreadful painful spasms.

This was also because none of the carers could use it properly, despite Richie showing them how to put it on and both of us explaining it to them thoroughly time and time again.

Every time they caused me alot of pain and discomfort, plus by the time I had explained how it worked every time they came round (three times a day)it was too late and I had wet myself.

The passive lift took away all my control over my bladder as I no longer got pulled up onto my legs so my legs and my stomach muscles became unused and totally inactive.

Which resulted in even more spasms and because they were generally late and often just never turned up at all it meant I was often left sitting in wet pants and literally in shit.

As a result my doctor suggested a catheter as it was distressing to be left in the lurch so often.

The day after the doctor had installed the catheter without warning the people supplying the carers decided unilaterally to reduce the number of their visits from three times to once a day.

This was dreadful and scary as this was the time I had loads of spasms and of the sort that toppled me backwards over the w/chair, very scary.

Despite us having to pay alot they were not doing much for me apart from putting me on the toilet, they were supposed to shower me and dress me but often would suggest a quick wash instead.

They always made it clear they had no time so I would have to be very assertive to get them to fill up my water bottle and make me a pot of tea.

At lunchtime I sometimes would not be quick enough reminding them to get me food Richie had prepared out of the fridge for me.

When that happened I would have to wait until their third and last visit at 14.00 pm.

Because the agency we were with cut their care down to one 10 minute visit per day we went to another agency and it all went from bad to worse.


These people were mostly crap, two were at least nice and with one I did feel safe and we did have a laugh.

Laughing is important but so is good care and attention to details and this is especially important when you are looking after someone who has become so handicapped.

The problem with a catheter is that the carers and we were unaware of the risks of sitting continuously all day without being lifted out of the w/chair.

Its really important to literally get off you arse otherwise it will result in sores on your bum.

I would really recommend others to not switch too quickly from an active to a passive hoist.

Keep using it as long as possible as once you use the passive lift it will affect your whole body and making it too passive too quickly.

This will result in all sorts of problems its like dominoes tumbling over or a chain reaction.

The knock on effects are spasms, loss of bladder control, muscle weakness and sores on bum and legs.

Which again precipitates further reactions in your body and causes great stress and this you do not need.

Looking back I think now happy days when I was not constantly in pain when I could roll around the room using arm power now I am in an electric w/chair.

Feel like the Star Trek captain encased in his machine, like him I am now half human half electric w/chair.

In a wee while its off to bed and Richie will have an hour of hard work as he hoists me out of the w/chair and into the movable shower/toilet chair and puts on my night time tee shirt.

Then its off to brush teeth apply soothing gel to ears, throat, neck and arms that have been scrapped raw by tee shirt and jumper being pulled over my head.

After that its time for Richie to empty the catheter bag once again and get my bum washed and cream applied helps keep skin moist and stops it drying and tearing and then its on with the disposable pants and long john's and then its sleeping tablets and bed and oblivion.

But hey I am still tapping out some words, talking and loving and laughing with my darling.

Sunny afternoon on the market

Sunny afternoon on the market on tuesday with Marianne.

Had a great time.


Was happy all evening.

Reminded me again why it's important to get out.

Still happy today.

Sunny afternoon on the market

Sunny afternoon on the market on tuesday with Marianne.

Had a great time.


Was happy all evening.

Reminded me again why it's important to get out.

Cold saturday on the market.

Cold saturday on the market today but good to get out must try to get out more and will once it gets warmer.

After all the pain and discomfort are always there so might as well be out seeing and interacting with people

The truth about Marijuana by Noam Chomsky.

A real saturday,

Lovely visit to the market today in sunshine which was wonderful.

We went the whole length of the market and I looked at all the stalls saw all my favourite market stallholders.

Saw one that I have not seen for a few years as his kids are now running it.

He is a lovely man, have bought delicious things like olives and goat cheeses and fresh mint and fresh dates from his stall since 1985.

Brilliant afternoon and well worth it.

This is a video of Chinese soldiers killing Tibetans attempting to leave the country..

Social Distortion- Ring of Fire.

Always have to be an instant expert.

Just realised that I have been putting off doing a new post til I had something extraordinary to say.

Keep thinking that I have got out of some old patterns and then bingo I am doing it again!

Why can't I just drop all that perfectionist shit and concentrate on the things that are important to me now like my blog. Like new posts about how I am and what I have been doing.

Notice that I have not mentioned how my body is recently, guess that I am trying to not think about it, trying not to worry.

And it seems to be working which is good as it means that the other old habit of worrying about things before they happen is not happening.

The other reason that I am not posting is that it's quite alot of work using the keyboard with hands that won't do what I want them to.

Have lost coordination and sensitivity in my fingers which has had me quite upset and angry at times. And has made me rant and rave and swear alot until I realised that it was all directed at my hands!


Speaking is easier than typing for me now, mind you in two months I should be getting a headmouse and software for an on screen keyboard.

Works in conjunction with a tiny sticker on my glasses that operates the headmouse, which is like a webcam.

Have to learn how to use the onscreen keyboard that has to be better than one fingertip typing and being constantly frustrated.

Really looking forward to the headmouse arriving and hope that I don't expect myself to be an expert within minutes like I do with everything.

Oh well that's perfectionists for you!!

The Carnival of MS Bloggers.

The Carnival of MS Bloggers #7 - Creativity Edition is up.

Please check it out at http://brassandivory.blogspot.com

The next Carnival of MS Bloggers will be on April 10, 2008.

You can send contributions from your blog of which you are particularly proud and want

to share, by email before noon on Tuesday, April 8, 2008 to brass.and.ivory@gmail.com

Richie's poem

The End of August

A sudden summer storm cooled the room, cool skin

begged for touch. Reflected light danced liquid

on bedroom curtains, fingers danced on skin.

We shared love slowly with Smoky singing

as high and sweet as sativa smoke.



My dumb prick can’t tell but eyes don’t lie.

Em ess pain

Disease dis-ease the destroyer of the moment

and our passions collapsed.



Death don’t wait in ambush, he drops by

us to pick on choice morsels.

I will serve a rich feast of delights

to be shared before they can be stolen.



I will defy him again and again

my love is stronger than death

and will be yours beyond pain.

Brilliant birthday!!!!!!!!!!!!!!

Brilliant party on Sunday night for my birthday on St.Patrick's day Richie made some of his delicious quiches and crisps and pesto's and bread.
A friend who was visiting made an excellent apple cake. 20 friends came round with salads and cheeses and beer and wine and prosecco and we partied until 2.30 am.
It was good fun. What I call a wonderful birthday party. Most of them good friends whom I know for 24 yrs which is special, feel very loved.

Lisa Emerich's Carnival of MS Bloggers is brilliant.

Just been visiting Lisa's MS Awareness, Blogging Friends, and a little Link Love blog and think it's brilliant.

A truly wonderful list of MS Bloggers which makes supporting each other a click away.

Here's the link directly to Lisa's great list of MS Bloggers:

http://brassandivory.blogspot.com/2008/03/ms-awareness-blogging-friends-and.html

Visit Lisa Emerich's Carnival of MS Bloggers

Here's what Lisa says:

MS Awareness, Blogging Friends, and a little Link Love

There are at least 137 MS Bloggers out there actively discussing whatever suits their fancy. Below you will find many of these suspects....wait... I mean lovely blogger friends who happen to have multiple sclerosis.

Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I'd like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.



Here's what you do:

Copy the entirety of this post
Create a new post and paste this content
Visit 3 of the blogs listed on Carnival of MS Bloggers of which you were unfamiliar
Leave a comment on their blog encouraging them to participate
Please add Brass and Ivory to your sidebar, if it's not already

Lots of pain but still happy!!

It's been a hectic couple of weeks recently, too many appointments with non friends.

Keep meaning to post and then it's too late and its time for bed again.

Very down after seeing the neurologist on the 22 Feb, took me ages to recover.

Having alot of pain, despite sleeping tablet wake up an hour after falling asleep whimpering with pain in my upper right arm.

Have now got my equilibrium and my sense of humour back.
A very good friend is here for two weeks which is brilliant.

We first met 23 years ago, I love having her here and its given us both a tremendous boost having her here.

And its my birthday on the 17th March going to enjoy that.
Sunday we will have a party to celebrate with 15 friends!