About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Friday, July 31, 2009
Friday in Amsterdam.
Friday in Amsterdam.
Sometime ago I collected an award,The Honest Scrap Award from Sheri @The Dawn of a New Age.
http://justanotherday-sheri.blogspot.com/
I enjoy visiting Sheri’s blog and reading her story, find it very pleasant to visit over in Wisconsin.
Like her I too like meeting people and the privilege of hearing their stories.
As Sheri says she ‘’ look forward to getting to know many new people here on blogger and finding people that I have come to know from my past journal.
I think I would like to pass on the Honest Scrap ward in the same way I got it from Sheri.
So please anyone who comes by take The Honest Scrap Award and put it on your blog, could you please add my link to the picture you post.
Yesterday I had a very pleasant surprise; I got an Inspirational Award from Kelli @ Gumbo
http://gumboofblogs.blogspot.com/
Kelli said in her post that I was one of three bloggers she found inspirational, the others were Sherry@Word Salads- The Demyelination of Me and the Breakdown of a Marriage.
http://wordsalads.blogspot.com/
and Diane @A Stellar Life.
http://dj-astellarlife.blogspot.com/
I am very happy to accept this award from Kelli, whose blog I read regularly, I in turn find her story also very inspirational.
She is living with several illnesses ‘’ with MS (diagnosed 2001), Fibromyalgia, CFS, DDD, chronic migraines/headaches, chronic pain and a host of other conditions and symptoms. I have been disabled and homebound for 8 yrs.’’
She says in her profile:
‘’ In my past life before MS I was an R.N. It has been quite an adjustment losing my career and that identity. I do not give medical advice. Believe me with my brain you don't want any from me. LOL’’
Now I need to pass this fine award onto other blogs, have to get busy and pick some blogs, need to do some reading to make up my mind.
I am going to give the Inspirational Award from Kelli to the following blogs:
Barbara @ Blinders Off
http://notabarbie.wordpress.com/
Barbara says in one of her posts ‘’ There is no better life than one that is lived openly and honestly. Trust me on this one.’’
Totally agree with her, always better to live openly and honestly and be yourself.
Next I would like to pass the award on to Debra@Living with MS
http://living-with-ms.blogspot.com/
She says about herself:
‘’ Love myself first and most. Avoid negative sources, people, place, things, and habits. Believe in myself. Read, Study and Learn about everything important in my Life. Take control of my own destiny.’’
I enjoy visiting with her in Tennessee and reading her story and seeing the pictures of her beautiful daughters and her fine partner.
Next I would like to pass this award on to Carole@Carole’s MS Blog
http://carolemsblog.blogspot.com/
She says in her profile that she is ‘’ divorced with an 19 year old son. Recently diagnosed with MS. Hoping to retire in 1 year so I can write full time’’
Carole lives in Hamilton, Canada.
She describes her situation as:
‘’ If I could have one wish come true it would be to be able to go to bed, fall asleep, and stay asleep through the night. I'm not greedy, I'd settle for six hours straight. No wonder I'm so darn tired. How can I have energy with these fragmented sleep patterns night after night. I go to bed and the burning and tingling in my feet keep me awake. The crazy, high pitched, whooshing, in my ears drives me nuts . Pains that move around, come and go, disappear, and come back randomly. And headaches coming on more often , stronger, and last longer.
No none of it a big deal individually, but lumped together, well I just start crying because I get so fed up.’’
Hope the vaporizer will help her like it helps me to inhale weed safely that relaxes and soothes pains and spasms, helps me to sleep and gives me an appetite.
Then I want to pass the award to Stephany @ Soulful Sepulcher
http://bipolarsoupkitchen-stephany.blogspot.com/
I like to visit Stephany’s blog regularly, she describes herself as
‘’ I am an open-minded free spirit. I am not a medical professional. I believe in the human spirit; that we all have untapped resources within ourselves to succeed beyond our dreams. I believe that one voice can and does make a difference.’’
JC@Lilacs and Cats
http://jcatmom.blogspot.com/
She says of herself:
‘’ I live in the woods with my cats & dogs. I enjoy a fresh cup of coffee, a good book to read and a great movie on a cloudy day. I love the Ocean, my Cats, my big Dogs and Lilacs. I am in my 50's & my old body has given me a few twists & turns. I woke up from my coma three years ago. I have some problems due to that but I'm almost the same. I try to write when I find time.’’
And to Mary@
http://traveloguefortheuniverse.blogspot.com/
‘’I was born the fifth of seven children and see the world as a place we get to practice being nice. Of course if we slip up there is always someone to make you pay and often they are there anyway. The views on earth are spectacular at times as well as the earth's wealth of birds and bees and flowers and trees and other wonders like funky rocks and colours of sunrise. Welcome to my blog where the ride may not always be smooth but you are always welcome. Fasten your seat belts. We may experience turbulence even while seated on a wildly spinning rock we call Mother Earth.’’
Would all those I passed awards to please pass them on to others of your choice.
Please can you also make a post and mention who you received the award from when putting award on blog.
Add link to picture and visit each blog in turn to notify them.
That was brilliant news yesterday that Debby Purdy had won her case at the High Court in London.
5 Law Lords agreed with her that there should be clarity whether friends and family would be prosecuted for helping someone to put an end to their lives when they decide the pain and suffering is too much to bear.
http://www.independent.co.uk/news/uk/home-news/wife-wins-fight-over-assisted-suicide-1764767.html
http://www.guardian.co.uk/society/2009/jul/30/debbie-purdy-assisted-suicide-legal-victory
That is brilliant news and goes some way to making up for progress as well as debate being stifled because Baroness Campbell decided to keep us in the Dark Ages as she and others like her will not tolerate the idea that people think for themselves and make their own decisions.
Her way of stifling debate is to scare people away from the discussion by making inflammatory statements claiming that:
'' that suicide reform would lead to state-assisted dying: to a situation in which doctors would encourage people with disabilities to end their lives''
Hopefully people will recognise her statement as not based in truth and they will do their own thinking and make their own decisions.
Well it has been a good day I have finally got my disabled parking permit; Richie collected it from the Local District Council.
We both had another gentle waking today, Richie got me some THC as soon as he heard me wake up and after doing all the exercises, arm and leg, Richie massaged my legs and I was ready.
It is a nice day, warm and sunny, have the fan on and by me.
Tomorrow is the Gay Pride Boat Parade really hope the weather stays good and warm for tomorrow.
Have a great weekend.
PS
Here is the link for the advert for Motor Neurones Disease, Webster@HaltStopForgetRelax sent it to me.
http://hsfr.blogspot.com/
Link to Motor Neurones Diseasae/ALS:
http://www.youtube.com/watch?v=ExYRBmt4jaQ
Labels:
arm and leg exercises,
baclofen; thc,
blogs,
Debby Purdy,
Law Lords,
leg massage
Thursday, July 30, 2009
Right to Know and Right to Decide
Was a quiet and peaceful awakening this morning, did feel the pain again as soon as I was conscious like I do every morning.
Tried my best to minimize the noise I made as I did not want to wake Richie up, but he heard me right away.
Hard to minimize sounds of pain because all the pain comes back immediately when you become aware and that is what greets you each morning.
It was difficult to completely suppress and did my best but even so Richie heard me.
He was up right away and fetched me some THC which relaxes me and relieves the pain so
that I could do my arm exercises.
Richie gave me THC in the breaks during the exercises and when I was finished I felt relaxed.
I was ready for the leg exercises, done by Richie followed by leg massage.
And then baclofen tablets and drink water and I was ready to meet the world
via my laptop.
I just heard a program on BBC radio about Motor Neuron / ALS it seems that an ad is not being shown on the BBC Television as the images were too shocking.
http://en.wikipedia.org/wiki/Motor_neurone_disease
http://www.alsmndalliance.org/
Find it very strange that the truth is distorted find this more shocking than the pictures.
The images were about what life is like for a young woman with MND / ALS and it is not nice but it's the truth.
It is unfortunate that people do not get to see the truth or hear that someone else has decided for them because they know better.
It is very inhumane thing to deny people the truth and I am shocked about this decision.
The other item that I had heard, which also shocked me was about Euthanasia in England.
The Parliament, The House of Lords has again refused to give people the right to decide when they want to end their lives.
A woman Baroness Campbell has stopped the law being passed, she is disabled and is in a wheelchair, and she does not want to be euthanized and does not want anyone else to have that right either.
http://en.wikipedia.org/wiki/Jane_Campbell,_Baroness_Campbell_of_Surbiton
Baroness Campbell said that if the law permits disabled people to choose when they could die, that doctors would coerce them into having euthanasia.
'' that suicide reform would lead to state-assisted dying: to a situation in which doctors would encourage people with disabilities to end their lives''
This really is pure nonsense as if doctors would convince people to ask for euthanasia, I never heard such nonsense.
But that is how a debate is killed by making it very emotional and personal which makes discussion impossible and there is no argument against it.
Any argument is seen as an attack, and that's no discussion on the contrary it is a kind of emotional blackmail.
Baroness Campbell has a privileged position compared with other disabled people, it is a pity
that she and her supporters do not want to see that the right to self determination is not a signal for all disabled people to be euthanized.
That is how this debate is conducted in England, and that's no real discussion so it seems that there is no hope at present for this new law to be passed.
And they will carry on doing euthanasia by the back door by increasing doses of morphine until you are in a coma; the other way is stopping feeding.
Both inhumane ways to end someone's life but that is apparently better that allowing people the dignity of deciding for themselves and being able to go surrounded by family and friends.
Wednesday, July 29, 2009
Every Day is a new day....
Amsterdam Life.
We were both woken by tremendous noise this morning seemed like all the rubbish containers in the street were being emptied at the same time.
The noise was not just the sound of the containers being winched up but also the noise of several large well fed Amsterdam men.
Who had to accompany each action seemingly with a shouted conversation and if possible at a great distance from each other so everyone could hear.
They were yodelling at each other very loudly but incomprehensible to all but the men themselves.
This was at 7 am this morning, obviously their motto is I am awake and so you will be too.
Fortunately, although we both did wake up, we both drifted off to sleep again after the trucks had driven off.
Then the peace returned, well it did long enough for us both to drift off again until 9.30 when I woke up feeling very relaxed.
So much so that becoming conscious of the pain again as I am every morning did not produce a huge squeal of pain, today it was little sounds of pain.
As soon as Richie heard he went off to get some THC for me which relaxed me even more.
Then Richie brought his coffee in and we listened to radio and talked as he drank his coffee and played with the dogs.
An excellent dog bonding moment and Spike and Marleen were really enjoying themselves rolling around having their tummies tickled and then running for the ball.
Both excelling themselves because I am watching them play, they will always make an extra effort for someone watching, especially me.
They are such actors, I think all dogs are actors, Spike has his likes and dislikes, and he does not like Richie playing the harmonica or the trumpet.
If Richie plays one or the other even in another room Spike will start to whimper and then to wail loudly.
Marleen hates Richie putting things on his head, certain hats are not favourites and a pillow
even briefly is cause for disapproving barking.
And lots of it too plus looks, as you have never seen before
She also hates sniffing near her and being looked at too directly and basically anything she does not like at any given moment.
Our other dog Daisy was an incredible actress, if you told her that she was being very brave she would look very stoical, like she had been through tremendous trauma.
And if you said what a horrible time you are having she would tremble sometimes very extravagantly.
Often reminded me of Scarlet in Gone with the Wind it was such a dramatic performance from the dog.
Like the day she decided that rubber gloves were evil.
One day Richie put on rubber gloves like he had done for 10 years to either do the dishes or chop up hot peppers.
This time as soon as he had pulled the gloves on she jumped up dramatically, trembling violently and ran over to me.
Then she hid behind my legs and peeped out at Richie shaking and pressed up against my legs.
It was really quite bizarre as we had both been using rubber gloves for a variety of household chores.
Without Daisy reacting like this, once she did it once she did it nearly every time from then on and each time it was an Oscar winning performance.
When Richie had just moved back to Amsterdam in 1997 Daisy did not quite feel at home here, outside was an exciting new world but inside was more worrying.
Not long after they moved to the Haarlmmer Dijk we had a lot of mice invade on the look out for food.
This occurred every summer when the restaurant was closed for their holiday, this time the mice were jumping in via the gas meter box and sprinting over my bed to run to the kitchen.
I called Daisy and showed her the mice and suggested she catch them and instead she ran away.
That evening she jumped to catch a fly and went out of sight only to reappear with a dead mouse in her mouth.
We were delighted and gave her a biscuit where upon she went off and came back minutes later with a pile of mice, about ten in total.
She was amply rewarded and this was happily accepted but more importantly she now had a role in the apartment.
Daisy had a mission now and she became a happier dog and soon settled down to her new life in Amsterdam.
Everyday she would search happily for mice if we said where are the mice or said check out the mice or even if we just sniffed.
Then she would go off proudly and do an inspection tour of the apartment looking for mice, when she was finished she would come back to claim her biscuit.
After awhile she would sometimes initiate a mouse hunt herself and present herself all delighted with her little self and claim her biscuit.
Luckily she did not overdo it and just seemed to top up her daily biscuit intake by one, but one that seemed to matter a lot to her.
That was because she made it happen through her independent action, something that I can understand even better these days.
Independence is so very important to all of us, never realised quite how important it was until I had none left after becoming so handicapped.
Appreciate what I have still got even more than ever.
Every day is a new day and a new chance.
Here is a site with local info about Amsterdam
http://www.blogcatalog.com/blog/amsterdam-spotted-by-locals
Tuesday, July 28, 2009
A Dreamy Day.
Today has been a dreamy sort of day, we did not go to sleep until 2 am which is abit too late but it is always difficult for us to stop talking to each other.
We just love each others company so very much and it was nothing out of the ordinary for us to suddenly find it was long gone midnight.
Mind you it always did and still does surprise us that time can fly by so quickly when we are together.
In the past, as soon as I got home from work we would sit in the kitchen and Richie would pour me a cup of tea and roll me a post work spliff (weed) and we would chat about the day’s events.
Every day one minute it was 6.15 and I had finally got in from work and the next minute it late and Richie would have to go to bed.
In those days Richie needed to be in bed at 9 am or 9.30 at the latest so he could have a good night’s sleep before getting up at 5 am for work at 6 am.
Very difficult for us to keep rigidly to the schedule but it had to be done so Richie would not be exhausted.
What we looked forward to all week was the weekend as Riche could stay up as late as he wanted on Friday and Saturdays.
So you can imagine my surprise when one of my colleagues, a young woman whom I worked briefly with at the Council’s Town Planning Department, said she pitied me because I liked to spend time with my partner.
She made it very clear that she thought that was a serious shortcoming on my part and not what I should be doing.
She told me that she was a very modern woman who saw no need for hanging out with her bloke.
They looked like a picture book family, on photos she showed me, of a good looking blond blue eyed man and two very cute blond and blue eyed children.
He saw his friends and she saw hers on nights out, I got the rather dubious pleasure of seeing her on an evening out.
We were all taken out for an evening’s dinner and bowling, where after a couple of beers she started to flirt outrageously with her male colleagues, close and not so close.
Several times I saw her lean over a couple of the men and rub her breasts up against the back of their heads and their shoulders.
The colleagues she flirted with and rubbed up against all looked very embarrassed, but she did not seem to notice nor did she stop.
As far as she seemed to be concerned it was a top night out, she probably thought that her behaviour was ok.
Still think now what a very sad young woman, really hope she did not have a rude awakening.
Reminds me of another young woman who I met at Hillcroft when I was doing the Certificate of Higher Learning in 1991 so I could go to University.
When I met Marcella, she seemed a pleasant person, but over the first months of term I discovered she was not as nice as I had thought.
She was 23, so could now be quite different, hope it for her as can’t imagine that her attitude of using and abusing people would be an endearing trait for most people.
One of my last contacts was after watching her abuse her girlfriend for a few hours in our kitchen at Hillcroft and telling her several times to desist and she ignored me.
When her girlfriend burst into tears I could not stand it any longer and without thinking jumped over the table I was sitting at and shouted at her to stop this dreadful sexist behaviour right a way.
She did and she kept out of my way especially when I heard that she was telling people that I had reacted like I had because I was just jealous!?
I did meet some very nice women at the college, one of which was Angela, very soon after we met we clicked and enjoyed each others company.
We used out time at the course to read a lot of books both text books for our courses as well as a lot of novels and literary books as well as a newspaper everyday.
S o we had a lot of things to talk about and discuss with each other so ended up spending a lot of time together doing our course work as well as socialising.
Some of the other women thought Angela and I were lovers because we spent so much time together.
They obviously had never experienced people wanting to spend time with others they liked in order to talk and discuss topics of interest and study.
Laughed like a drain when I heard the rumours about us, thought it was very amusing.
It really seemed to show that they had not got a clue about either of us, as we would not have hidden it if we had been having a sexual relationship.
I am very happy to be in touch with Angela and a couple of women who I met at Hillcroft.
As I am happy I am still in touch with Pam who I met at a Yoga Holiday in Devon in 1973, it is lovely to still be in touch with people.
People are endlessly interesting and I think it is important to exchange stories with others and for us all to learn about each other.
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