A Huge Contrast To Yesterday.

 

Roberto Matta

.http://en.wikipedia.org/wiki/Roberto_Matta

Last night after I did my exercises on the Motomed Richie returned me back to bed, where I expected to be able to sit well.

It was shocking to discover that not only was I not sitting well but I was also feeling really dreadful.

I felt at my most handicapped and disabled than I've ever felt before, it was shocking to have this experience yesterday evening.

I had not expected this to happen as I had been to the toilet before I did my arm and leg exercises and had a huge bowel movement.

Sitting better was what I expected would happen as a consequence of going very successfully to the toilet.

Over the last few years we are both noticed that there's a huge correlation between needing to have a bowel movement and sitting badly.

Any time that I am consistently flopping all over the bed Richie knows now that it is time to get me to the bathroom which usually solves the problem.

I have not had any such problems today which is really lovely, it has meant that that for the first time in a couple of months I've been able to answer outstanding e-mails.

Hopefully tomorrow I will be able to start responding as I always have done to comments left on my blog which I always like to do as its nice to be in conversation with my blog friends.

Then I quickly edited the Dutch translation of my blog, it went very well and I was able to translate the title as well as labels.

As a consequence of all this I now feel very efficient, this is making me very happy as I love to be on top of things.

I'm enjoying feeling so much better than I did yesterday; in fact the contrast with yesterday is quite noticeable, tomorrow maybe different again.

Whatever happens I am enjoying today, that is really all that matters to me is enjoying what I have right here and now.

Almost To Impatient To Wait.

 

 

Roberto Matta

http://en.wikipedia.org/wiki/Roberto_Matta.

It's been a relaxing day which we both needed after going to the hospital on Tuesday plus getting my flu injection the same afternoon.

Also after the early start for four days this week and especially the very early one yesterday morning in order to be totally ready for my 1030 appointment.

I'm very pleased that I've had the flu injection, as I never once have the horrible experience that I had in January 2011.

Where a cold soon turned to pneumonia which was a horrible thing to endure, especially being so handicapped it was a nightmare.

Not been able to adequately cough so getting a cold is very unpleasant for me as I become totally full of phlegm and I can’t get rid of it by coughing.

Last year I was persuaded to have an anti-flu injection and I did not have any problems with colds or influenza the entire winter period.

Hopefully this year will be the same and I won't have too suffer any attacks of the common cold or getting influenza.

Because of my positive experience I would recommend this approach to everyone especially to people who are vulnerable.

Richie is in the Rembrandt Park three dogs right now when he returns is planning on making fish and chips and a nice salad.

After dinner I am looking forward to the longer edition of later with Jools Holland on BBC2, as usual I am impatient and can’t  hardly wait.

Looking Forward.

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

Today has been enjoyable Sunday; we have been having a relaxed time which we both needed.

Not long after I woke up Tina jumped up on my ready to play, she is an adorable dog who loves a game.

I'm glad that she likes me, when Richie brought her back from the dog pound I was worried that it would be difficult to have a relationship with her.

Being as handicapped as I am, this has restricted my interaction with the dogs; I hate not being able to play with them like I used to.

Horrible not been able to sit on the floor and play anymore, it is wonderful that despite this Tina and I are friends.

She is very nice little dog who is smart enough to deal with this for her strange situation, I could not go to her, so she has come to me.

Every morning for the last few months she jumps onto my bed for cuddles as well as games both of which I enjoy.

As I have not got the hand functionality nor the strength I can't play like I used to be able to, so I have to improvise, Tina seems to understand and plays gently with me.

Which is wonderful as Tina plays quite roughly with Richie but not with me, with me she is quite careful as if she knows that I am not well.    

It is now 20.37 outside it is a wet night, Richie is out right now with the dogs is in the Rembrandt Park.

Before he went to the Park Richie made our dinner which he put into the oven to cook, it should be ready when he comes home.

When he is back all he has to do is put the delicious food on the plates for us both, which I'm looking forward to immensely.

Coping With Being Severely Handicapped.

 Luis Cruz Azaceta; American; born in Cuba 1942-, 

Man Looking For A Hole, 1987

Last night it was extremely humid so I took a sleeping tablet to help me sleep, this worked well and I slept until 10.00 this morning.

Today has been an even hotter day, which has made it almost impossible for Richie to get me in a good sitting position that I can maintain.

So far, this strategy is not working; right now I'm sitting corkscrewed with my left shoulder at a strange and uncomfortable angle.

My only solution is to call Richie again and hope that he can assist me in finding a better position.

What constantly amazes me is how long I keep going when I'm sitting in an incredibly strange and uncomfortable position.

Despite that I keep going on much longer than I ever thought possible, but then again I never thought I would end up like this.

Practically totally paralysed, in constant discomfort and pain, in capable of doing anything much.

My left index finger and thumb are still functioning so I can just about type a few words, but no more because I use voice recognition.

The only thing I really need my index finger for is to move the cursor behind a word I want to delete.

In the past I've often wondered how handicapped people are able to cope with their lives when they have such difficulties.

Now I don't need to wonder anymore because I'm experiencing it myself on a daily basis.

There is no need to speculate now; all I need to do is get on with my life as best I can.

Often like today it comes extremely difficult, and quite painful I find inhaling some THC relaxes me and allows me to carry on.

Right now Richie is cooking something delicious for our evening meal, my plan is to finish this, search on the Internet for a picture and post this on my blog and enjoy evening with my darling Richie.

Interaction With Friends.

              

Anthonio Carneiro

http://en.wikipedia.org/wiki/Ant%C3%B3nio_Carneiro 

Luckily for me today is another changeable day with loads of clouds and a cool breeze, amazingly it's already the 1^st of July.

Quite unbelievable given the cool weather we've been having since May, it really is either April weather or autumn, not summer which it’s supposed to be.

Still feel quite mean hoping for cool days, hot and humid weather like on Wednesday is quite catastrophic for me.

On Wednesday I couldn't do anything apart from look at my blog as my index finger could not function in the heat and I felt terrible.

All I could do was to open posts and save as drafts so that I could write up my notes the following day.

On Thursday there was breeze which helped me to function better than the day before, it was quite a relief for me and I'm sure for many others too with Multiple Sclerosis.

I really hate looking forward to it being cool and overcast, that really is not me I'm somebody that loves sunshine and still do as long as the temperature does not get any higher than 24° with breeze.

Our good friend Anja visited us on Friday, which was lovely it really is nice to have friends around; sadly her visit was short.

Visits with her are always too short and no wonder as it always such a pleasure to see a good friend like Anja.

We discussed the council and we agreed that if I had not heard anything on Wednesday, I would let her know and she will phone the council to enquire.

On Friday Anja’s partner Erik and their son Bosse came by to pick her up, it was really nice to see both of them again.

It is noticeable how few people we see on a regular basis, but that's how it has been for quite some time, especially since I became less mobile.

It was not so obvious when we were both still could go out to work and after work we could stroll around and enjoy this beautiful city and see friends.

Then I became handicapped and had to stop work, ever since then our world has become smaller, which we try our best to ameliorate as much as possible.

These days any interaction with friends is so good for us, it really is enjoyable spending time with other people and engaging with different ideas.

Not ThisTime.

Joan Miro.
http://en.wikipedia.org/wiki/Joan_M3ir%C3%B

Today has been a day where the only thing I could do was wait and hope that Herman had successfully resubmitted his bid.

If he did then I should get the news quite quickly, Frans was here on 15^th November, he sent his bid in right away, and he heard on 25^th that his bid won, he got the sale.

Then I heard the customer could choose the supplier, so I made my choice known, Agis informed me that while I may have the right to decide the supplier.

However because I see an occupational therapist, I could not speak for myself; my OT was the one to explain.

Brilliant, so because I am handicapped and see an O.T suddenly I can not speak for myself, what a thing, not really surprising as they are so sexist and discriminatory here.

So I should not be surprised, Maurits was the one to do the talking; this reminds me of when I worked as an agency worker at Euronet, I had completed a network plus course, my ambition was to become network engineer.

Euronet were looking to train up network engineers, my misfortune was to have a manager who didn’t think women could do the job.

He actually told me that men were born engineers; they had it in their genes, shortly after I got another IT helpdesk job.

I never got another opportunity then, this time I will not let myself get bullied by another ignorant bully like Frans

Still Feel The Same As Ever.

The Fourteen Daggers.
Kay Sage.
http://en.wikipedia.org/wiki/Kay_Sage

It is Friday again, wonderful how quickly it happens every week, Friday is a favourite day of mine.

When I was still at work I used to organise a get together after work of colleagues and friends.

It was a nice way to end the week and it was something that everyone looked forward to immensely.

Life is classified for me as when I worked and life since work, sometimes it is strange thinking about me going to work.

Lying in bed or sitting in the wheelchair it is hard to remember a time when I could do things, make things happen and be part of it all.

Difficult to realise quite how handicapped I am right now, Richie and I talked about it last night.

Richie says he too finds it very difficult to accept that I am so handicapped; he says he does not think of me as handicapped.

I do not think of myself as handicapped either, but then again, I also do not feel like I will be 60 soon.

How incredible to think that in 20 days time I will be sixty, despite the effects of my MS I still feel the same as ever.

Being Handicapped Does Not Mean That I Have Become Stupid.

A very dreary cool, grey and rainy day, Richie just came back with two very damp dogs, from taking them down to the dog toilet by the canal at the end of our street.

Today is my physiotherapy day, Mathilde will be here at 14.00 for 30 minutes, it is always a good session and I generally benefit from the exercises and shoulder massage.

Michelle, the advisor from the local council will also come by to check my arm supports; hopefully the saga of the wheelchair table will come to a good conclusion soon.

Still can’t believe that while I was waiting for the table to be made from the lengthy measuring session which took 2 1/2 hours on 25 august nothing was happening.

To my amazement found out last Wednesday, that nothing was actually happening as my occupational therapist Johanneke had to come and check the height first.

No one, neither Harm, from Welzorg the mobility company, nor Michelle told either Richie or me this on the 25 august.

If they had have done so, I would have immediately got in touch with Johanneke right away for an appointment ASAP.

But I did not and Johanneke said nothing either, nor did she tell me she was the cause of why the whole project had stagnated.

She just told me that it was stagnated, found out that she or rather her lack of coming to check was the reason nothing was happening.

Really incredible that this has happened especially, after the whole saga of things such as the arm supports, this took months to get adjusted.

Months of painful arms and shoulders because I had to support my arms and shoulders myself.

Can’t believe that my occupational therapist seems to have let me down so badly by not coming by quickly to check the arm supports.

Know for a fact that my old occupational therapist Ludwine would have made an appointment right away, she was very supportive of us both.

Ludwine came to visit us last week Wednesday which was very nice of her, good to see her again.

Shame she is not still my therapist, she is outstanding always acted in my best interests, never adopted a different tone of voice when talking to me.

Always felt like equals which h does not happen too often most including Johanneke adopt their voices.

They talk to me in that sugary tone of voice for the hard of thinking which I hate so much.

Decided the next time that happens, instead of ignoring it I shall ask whoever it is to not patronise me, as I am an equal, being handicapped does not mean that I have become stupid, my handicap has not diminished my intellect.

If Only Being Positive Could Help We Would All Be Cured.

John Wotipka.

http://www.slowart.com/articles/wotipka.htm


http://www.slowart.com/limner/htm/gall-art/wotipka/index.htm

It was excellent meeting Heather yesterday, she was here for three hours in the afternoon, and she is a delightful young woman, a credit to her parents and to her country.

She is very intelligent, calm and self assured, I think she would be an excellent person to have in a team; she struck me as being a practical and capable young woman.

It is a shame that I am so handicapped; otherwise it would have been a pleasure to have had her stay here.

Mind you being young and adventurous as she is I am sure she prefers the hostel and her independence.

I enjoyed Heather’s visit and felt good after she left, her coming by gave me such a boost.

Glad I did not chicken out and instead invited her to come by, glad that I did not miss out on meeting my friend Jeannette’s daughter.

It brought back many happy memories of Heather’s mother Jeannette and our lives in Reading in the 1970’s.

After Heather left I got Richie to put me back in bed, not longer after I was ensconced in bed I got anxious and quite sad.

Think that was probably because Heather’s visit brought back memories of Reading, and a time when I was healthy and fit.

Not like now where I am so aware of the progress of this stinking disease, think yesterday was also difficult because my hands were so painful and difficult to use.

Did not feel good at all, got the usual early evening hot feeling which I recognised as one of the signs of a bladder infection.

Decided to take antibiotics last thing, this is a better time for me as I always feel nauseous if I take antibiotics during the day which makes eating very unpleasant.

When Richie emptied my catheter bag he agreed with me taking antibiotics as my urine was very smelly another indicator of a bladder infection.

By the time the light went out I was not so anxious, but still enough to keep me from sleeping for hours.

Kept my eyes closed and was convinced that any moment I would drift off to sleep, but that did not happen.

Finally asked Richie for some THC vapour which instantly did the trick and the next thing I knew I was waking up having finally slept.

Pleased that despite my anxiety about the progress of my MS, the THC helped me to sleep.

It was difficult to get myself to stop worrying, kept telling myself to stop as there is nothing I can do to change my situation.

That in a nutshell is what makes this and other incurable progressive diseases so difficult to live with.

If only being positive could help we would all be cured.

Exciting Perspectives.

Nell Blaine
American Abstract Expressionist Painter, 1922-1996


Sadly the weekend was not pleasant, a real shame especially because of the Gay Pride Boat Parade which took place on the wettest day of the year.

This is an event that is eagerly awaited by many, costumes and boat decorations are planned a year in advance and a lot of hard work goes into making it all happen.

Glad that it still took place despite the rain, which got less before the start and luckily even stopped at times during the procession down the Prinsengracht.

I was very happy that the weather did nothing to diminish the event; I read and heard from friends that the party went on regardless of the weather.

With lots of happy people in skimpy clothes dancing on the boats and thousands of spectators taking photos and enjoying the colourful annual spectacle.

Very glad that the summer weather seems to have come back today; it was good to see blue skies and sunshine once again.

Makes me extremely hopeful that my trip to the market at the end of the week will be pleasant and the weather is warm and sunny summer weather.

I really needed the sunshine today, especially as I was suddenly feeling down, I even cried abit and told Richie I felt pointless.

He cuddled me and comforted me by telling me that this was not true, that I was a lovely woman who he adored and who made lots of people happy.

That was good to hear and of course I do not really feel useless and without any point, but occasionally being so handicapped really gets to me big time.

It was lovely sitting in the front room until I started to feel frustrated that I can no longer say ‘’ I am off up the shops’’ and go there independently.

Feel like a caged bird, I am well looked after and life is good but I am no longer free to come and go and be independent.

It really is not easy to deal with glad I told Richie and cried and did not try to keep the tears and pain hidden.

Now I feel better, feel like my usual optimistic self once more, now the tears are gone I am looking forward to seeing friends and having trips outside.

Richie wants us to have a party as soon as I can sit for long enough, I love the idea think it will be lovely to do.

Hope we can do have a party when Gareth and Paul are over visiting Amsterdam in September.

That would be glorious, an exciting perspective for the near future and exactly what I needed.

Not A Moment.

Last night I went to sleep quite quickly, probably just when I was thinking hope that I can fall asleep without any problems.

I recall thinking that and then do not remember anything else, not until I woke up this morning.

It was briefly sunny and the skies were a beautiful blue, sadly only very briefly, so much so that I can hardly remember what that looked like now.

It has become very grey and cloudy, with some wonderfully clouds, they looked like pure fantasy clouds.

Some looked like faces, others like mountains and others were even more fanciful.

Last night before I drifted off to sleep I was thinking about what I was going to write about today.

Only problem that now it is morning again and I do not remember a scrap of what I was going to have written about.

Wish I could remember it now, know that it was about how I am living now, how most of the time I do not think about how I am.

Just get on with it; every now and then it is quite a shock to contemplate exactly how handicapped I am.

When I recently discovered that I no longer have any movement in my torso I was shocked to bits, now that too has passed and I accept things as they and I am.

If I cry about it I could cry forever but that will not help, I can not change it for the better.

But I could make it worse by grieving excessively; mind you losing my mobility has been and still is awfully difficult for me and all those who knew me before to accept.

What I do find interesting is how my perception of myself changed at first because I just could not cope with the rapid changes.

Could not have imagined at the start being as I am now, would not have thought possible to live like I am now.

But it seems that losing so much has made me very appreciative for what I have and it means that life is even more precious to me now.

It has been and is illuminating for me to see this change in me, guess most people will recognise the emotions.

Life is difficult now that I am so dependant on Richie but what there is has become very special to me, so special that I do not want to miss a moment of it.

Not a moment, some say it is brave others that it is pure common sense to make the best of what you have, use it all while you can.

Live life in the here and now and enjoying all that can.

Let’s seize the moment and enjoy it right here right now.

Since the last couple unpleasant times when my hands would not work I have been thinking a great deal about the progression of my MS and how that will affect us.

Been worrying about the effect on Richie and how I could spare him anymore pain, especially when I am even more handicapped.

The thought of not being able to use my hands and arms is unreal right now but then it all feels so strange.

In so many wayst is a very unreal experience going through this, it is something I could never ever have envisaged before.

Could never have imagined in 2006 that by the following year I would need so much help, that I would not be able do anything for myself.

Nothing whatsoever could have prepared me for this, it is too horrible to have dreamt up, it affects us both, Richie and I on so many different levels.

It has certainly had a good chunk out of my self image, now I know that is nothing to do with the physical more my attitude it feels better.

Been thinking about how the progression will affect and impact on Richie and myself, we have talked a lot about this.

One thing is for sure even though there are many uncertainties that Richie and I want to be together.

I have worried about this what it will be like for him and can I ask this of him, can I really put him through this.

For myself I know I would not w ant to be away from him, can’t imagine life without him, do not think I could or would want to live without my darling Richie, not now.

He in turn has made it clear that he wants very much to be here with me, to be by my side and help me; he just wants to be with me.

I am glad, I guess for both of us despite everything the only place we want to be is together, which is not surprising as we are such good friends.

Nothing I like better than spending time with Richie, laughing and talking about anything and everything and I intend to enjoy this for as long as possible.

Let’s seize the moment and enjoy it right here right now.

Now I have finished writing I can wipe the floods of tears that have poured down my face while writing this away and relax and enjoy this unique afternoon.

Life has changed so drastically that I can not contribute anything now to my daily care apart from doing the arm exercises.

It is tremendously frustrating to not be even able to squeeze toothpaste on to a toothbrush or pluck a hair out of my chin or file my nails.

Hate not being able to do anything for myself not even little thing, have lost sensitivity in my fingers so can not feel things and therefore do not get any information anymore through touch.

Do still feel pain, have a lot of pain and discomfort in my hands that are recently cramping up more which means a constant battle to hold the mouse.

Other times my hands are in constant pain with every now and then an electric shock, when it is hot weather they feel like swollen sausages and are quite painful.

Not easy to assess what is happening with the progression of MS, it is not easy to live with it, it tends to burst in uninvited and squat your life forever

Really hate being so dependant, gets me very frustrated and cross, emotions I try my best not to let fester by shouting and swearing when I am in the bathroom.

Always feels better after shouting it away from me, seem to remember that the Jungians recommend screaming as therapy.

Don’t really need a guru of whatever persuasion to tell me stuff that is logical, guess that is why I am never attracted to self help books these days.

I am already helping myself with help from others and giving help to others too so a mutual aid society which is how the planet really needs to be organised.

Shame that the same sort of time, personnel and money that goes into making weapons of mass destruction can’t be used to make life better for all people.

Why spend so much time and money working out how to kill people, seems an odd focus when doing good and being helpful to your neighbours is less effort and could produce a better effect and be pro people and pro planet.

It is a sad fact that there are far too many people suffering from MS and other progressive diseases.

Which could be different if resources similar to what is put into arms research or space travel were put into medical research (not by pharma companies) and ways of cultivating your own food.

Real shame that killing people is still the favourite pastime for our rulers and getting us all worked up about potential threats to us when the biggest threat is us. So that the killing can be justified.

If only all the time, effort and resources were being used for good things we would all be happier and healthier than we are now.

To much concentration on competing for the biggest slice and forgetting the benefits of
co operation which is pro people and pro planet.

When the bees die and all the rivers and seas are polluted we can not live on money and possessions.

That’s why we need to get together to change things right here and now starting in your own neighbourhood.

Here’s hoping for a better life for all and Yes We Can Do It!

Another lovely day, sunny and blue sky but a touch on the cold side I am told.

Woke up quite slowly today which was pleasant, only to instantly feel all the pain as soon as I was awake.

As my whimpers got louder Richie reacted quickly to my whispered 'please get me a bag' and was back in no time with a bag of vapour.

Afterwards lay here thinking about what a strange life it has become for me where all I can do is lie around.

Difficult to accept that I do not have any balance left and can only sit because the bed can be put to a sitting posistion.

Mind you have not been able to really sit up properly as that would put too much pressure on the area of the sore.

Find it really difficult to adjust to a life so handicapped as mine is now, really can't believe it has happened so fast.

The pressure sore has helped accelerate the process so it is vital people do everything to guard against pressure sores.

Here I am slumped in bed now for 7 months, think that I am doing very well staying so cheerful.

In between times I cry my eyes out and bemoan what I can't do and then try and calm down and get on with it again.

It works but hurts but really aware that enjoying the moment and making the most of things was important as moments go by so quickly.

Became aware of moments getting away from us when I heard the sad news on Monday that our good friend Nick Leslie had died.

Have been quite shocked at the news especially as had been hoping to see him on my birthday.

Saw the dear man for the last time on the 30th of December when he came round for a visit, its a really odd idea that we won't see him again can't believe it.

Started to accept its true since the details of where the cremation will take place was sent in an email yesterday.

It said Nick Leslie had died this Monday, he was born same as me in 1951 and died age only 57, Nick was 7 months younger than I am.

This afternoon I shall especially enjoy as I think of our dear friend Nick and fondly recall amusing memories of the wonderful man.

Nick dying reminds me again how short life is and how good it is despite this fucking handicap, and even despite our lives being so comphrehensively demolished.

Happy to be here with my darling Richie this beautiful sunny Saturday.

Let us all enjoy today and make tomorrow even better for all of us.

Had another sweat free night of sleep, it was brilliant actually slept until 9.30 am.

Then Richie massaged the pain out of my legs and just as I had taken the first set of baclofen tablets of the day Lin from The British General Stores came round with a bagful of goodies from her shop.

http://www.britishstore.nl/

Often have a look at her website and do the virtual reality tasting tour as I sample scones and clotted cream and eat a packet of crisps or cheddar cheese on crackers with a touch of onion chutney.

Reading Steve’s post on The Wheel of Fortune ‘His laughter is my drug of choice’ I recognized what he wrote about laughter, it rang lots of bells for me..

When I stopped smoking joints a year ago for a wee while my sense of humour had gone, very upsetting and odd not to spend lots of time laughing with Richie.

Had the same ten years ago when I stopped smoking cigarettes, and then too suddenly could not even manage a smile.

After I got used to the vaporizer my laughter came freely again, except now I have to watch for the spasms triggered by laughing.

Glad that I could laugh again as really love being able to hang out or lime as we say in Trinidad with my darling Richie.

More thoughts were triggered by reading other blogs keep seeing posts advocating more research be done to find a cure for MS.

Wouldn’t it be so much better that instead of billions being spent on warfare it were put into researching degenerative diseases and others such as spinal injuries.

I also think people need to know what is happening to them as soon as possible and that means screening and testing people.

This calls for free universal health care for all, health care should not be a commodity that profits can be made on at the cost of people and the communities they are from.

The health of a community is its greatest asset and it is healthy people that carry the community forward.

A diverse and vibrant community that wants to live and let live and be supportive to each other.

There have been many mistakes made which can not be corrected maybe it is time not to look back saying ‘What if’ or ‘If only’ and say ‘ Let us do something now’

If everyone did something kind everyday I bet life would be much better for us all as what goes round comes round.

Cure for MS through stem cell research.

Very pleased to read about the stem cell research would be great if the researchers discovered how to cure MS and other such diseases.

Reading this articles makes me hopeful that one day soon no one would be so handicapped and experience such pain and discomfort.

Last night cried a bit thinking what a shitty disease this is and what alot of distress it causes to thousands of people all over the world.

Somehow would find it easier to bear if there were not so many other people suffering this as it's heartbreaking to contemplate how many others go through this.

It's incredible to think how technology has advanced so far yet there is no cure for degenerative diseases.

Wonder if others feel the same way.

Handicapped Parking Ticket.

Last year I applied for a handicapped parkingticket I was iniatally told that they could do a house visit to check that I was indeed handicapped.

When the letter came with the appointment I was disappointed to discover it was for an appointment at the office of the GGGD.

The appointment was for 9.30 am which meant a 8.30 pick up by the mobility bus, they always insist on picking you up an hour before your appointment.

This in turn would mean that Richie would have to get me out of bed at 6.30 in order for me to be ready for 8.30 all this for 15 minutes at the GGGD office.

As I could not get a home visit I tried very hard to get a later appointment somehow this was not sucessful and in August I had to stay in bed because of the pressure sore.

Even then the GGGD would not do a home visit saying instead when they called me in September that they would check back in 2009.

In the meantime have found out from another dutch blogger that home visits are possible and will be paid for from the WMO, which is a law regulating all support for the handicapped.

So I will be applying to the GGGD next week for a home visit.

Thank you Peggy for the information on your blog.

The Care Industry

The local councils give handicapped people such aids as wheelchairs and hoists.

The criteria for the assistance are that handicapped people can take part in daily life.

However this benevolence does not encompass a real concern for citizen’s welfare as if it were so much more would be done.

As we are very rarely given what we really need and each application takes months, once it has been agreed, the paperwork has to be sent to the council for approval this last part of the trajectory takes two months until you get the aid.

For burocrats cost is everything that is their goal, sadly this often means that people have aids that are not properly adapted to their needs which are very short-sighted and in the long term not efficient or cost effective.

It seems that the buying policy is to buy a job lot of ugly, heavy wheelchairs and give everyone that applies for a wheelchair one of them regardless of their actual requirements.

No consideration is made of general health and welfare nor do they seem to trust the feedback from their clients ignoring any comments about shortcomings of the aids.

Have run in to this attitude myself time and again and inevitably it is more expensive as well as very upsetting...

My first wheelchair was given me on the basis that the advisor liked it.

I did not like it as it was too heavy, clumsy moving plus the seat was set up in such a way that the only way to sit was slumped backwards which made feel more handicapped plus the brakes were too tight for me to apply myself.

There was a wheelchair that was very suitable for me but this was from a different supplier plus it was more expensive.

I lost my appeal and was given the heavy wheelchair which I never used as it was not suitable

All in all a useless exercise and a total waste of time for all concerned.

Last year I was given an electric wheelchair that was not adapted for me as that was considered too expensive.

I immediately said that I could not sit properly and the backrest was not comfortable, was told that I needed to try it out for longer as I could not possibly have an informed view of it so quickly.

As it has turned out my feeling about the wheelchair and the lack of support was sadly correct.

The consequence of my case manager and advisor ignoring my feedback and requests for help has been a horrible pressure sore and 6 months in bed up to now before I can sit up again.

That is much more expensive in terms of the increased care I have needed plus the opportunity cost of having months of my life literally taken away from me..

Hope they finally either adapt my chair or get me one that is suitable.

Here and now.

Been very down at times and it is not surprising with something like primary progressive MS.

It is very strange to lose so much so quickly at the beginning it really shook me and made me feel useless.

Could not bear to look at myself.

Realised that I was feeling useless because that is how it is seen in the capitalist system, you are either able to work and therefore useful or you are unable to work and seen as useless.

Not being able to work really shook me and my self image became distorted into a useless, sexless handicapped thing not even a woman a nothing.

That was how I felt then a little while later when I dared to look at myself in the mirror again I saw that yes I am disabled but still me still the same spirit the same love for life and for other people.

Decided that I would have to find some of love for myself so that I did not get sucked down into depression and surprisingly I managed glad I did as it has made life better.

It remains a weird thing though to contemplate that time does not stretch endlessly in front of me and that it is finite.

This is a reality for everyone but you get to contemplate this as a more immediate reality with a progressive disease such as MS.

Knowing that I do not have too long to live is a strange thought and one which makes me sad especially as I hate the idea of saying goodbye to my darling Richie.

It's horrible but it is also good as it helps me to really make the best of the here and now and enjoying my life.