happy days......

We have finally got a new flat on the second floor with a lift so I can come and go as I please.

It' s a lovely sunny flat, two bedrooms,one has access to the bathroom and the other has a balcony off it.

There is also a storage room for bits and pieces as well as a communal courtyard with room to sit in the sun and everyone has a part of a big shed out the back for bikes etc. All the neighbours we have seen all look very pleasant.

We sign the contract on Tuesday 1 may at 14.00. We hope to move as soon as possible.

Its brand new so there is only concrete floor so we have to buy some of that click laminate and the windows are very long so we need alot of new curtains, we have about 10 windows.

Lots to do but its going to be wonderful place for us to live.

My favourite market, the Ten Katemarkt is close by and there are lots of shops and little cafes , bars and restaurants all around.

We are both very happy at last life can go on again now that we have this new flat.

Don’t take it personally.

It was a red-letter day today as I slept all through the night last night first time since end of November.
A whole nights sleep, 9 hours of non stop sleeping, could have slept on till 9 or 10 but something woke me up and then I got that panicky feeling which usually means get to the toilet right away

Yippee we both had a whole nights sleep about 9 hours non stop sleeping which is wonderful for a change. Think this means my bladder infection has cleared up now which is good news.

Still no prospect of a new flat, I did put my name down for two places but neither is my real preference; one is in sheltered accommodation. What they call a WIBO woning here. Its on the 10 floor in Osdorp, so right out of the centre about 20 to 30 minutes for Richie on his bike, for me that would be almost a day trip.

Really was hoping for a ground floor flat, would love to have a garden no matter how small somewhere for me to sit outside with the dogs would be brilliant.

They are really messing me around with everything. I appealed their decision to give me a wheelchair that is not comfortable and therefore not suitable for me at the beginning of March was told I would hear the decision just after my birthday on the 17 March.

Finally I got a letter this week and instead of a decision it told me that as I sent my appeal in an email via my case manager (she told me to do this) it was not signed so they could not deal with it till it was signed and it has to be there by this weds or they will refuse to review it.

What a slap in the face, it’s taken them from 11 March till this week the 19 April to let me know.
I sent the email to my case manager on 11 March; the department that discovered there was no signature did not receive it to vet it until 12 April. Where was the email between 12 March and 12 April?

This means that I have waited to hear their decision for more than a month, while all the time my appeal had just been sitting in the in tray. By the time I get my own wheelchair it will be the end of summer as it takes three months between ordering and receiving the chair.

What a life!

I am getting alot worse I can't stand up at all anymore have home care for 21 hours per week. An organisation called Fontis send around nurses three times per working day to help me on and off the toilet.

Tonight we got a piece of equipment a sort of hoist to get me in and out of bed and on and off the toilet. It has a padded bit you put in the small of your back and then the machines motor hoists me up to a standing up position and then raises me in the air and places me on the bed or toilet or wheelchair.

Only problem this flat was not designed for this sort of equipment. MD is having to get rid of all the carpets in the front room as its too difficult to manoeuvre all the equipment over varying layers of carpet.

Its my darlings birthday tomorrow sadly could not get to any shops this week and have nothing for him.

Hope its still going to be possible for us to visit our friend Rosie soon but worried we may not be able to get there now I need so much more these days in terms of a special bed ,one that sits me up and raises and lowers me, plus supports round the loo and everything wheelchair accessible cos I can't walk a step.

Of the 45 people I mailed to ask for contributions to my mobility fund 21 responded positively and 6 said no we can't help and the rest never replied at all. Shame as I can do with all the support I can get. Hope I did not offend anyone but was abit at the end of my tether with the council here and the delays in getting stuff I need and all the penny pinching bullshit while I get worse and have not had a life cos I have been stuck indoors since last July.

Home care or care less

After we organised the loan of the comode and bed MD and I had a long talk and decided that we would have to use Thuiszorg, the home care people to help me on and off the toilet. MD can't keep leaving work and racing up and down rescueing me off the loo.

They sent one of their coordintaors to do an intake with me. The woman that turned up on wednesday was very pleasant and certainly she was no problem to talk to about our situation. By the end of our talk we had agreed that someone would come by three times per day to shower and dress me and help me on and off the loo.

MD and I felt especially relieved as we both had not realised quite how stressed we had both become in the couple of weeks since my birthday that I can't stand up anymore.

The woman from intake went off with our spare key with the bright yellow Bart Simpson. She promised the care could begin the following day and told us someone would come by with a key contract and she meanwhile would leave the care folder for the staff's reference.

Later that day she called to say the care could not start until friday and added she would call to let me know if it would start friday. Thursday afternoon there came no call so I phoned and was told the woman I needed was not there and the only thing admin could do was send planning a mail asking them to call me at 8 am the next day.

The next day there came no call at 8 am and also at 8.30 noone to help me on the toilet and I had to call MD to rescue me off the toilet. Just as he was lifting me back into the wheelchair someone called but sadly left no messsage.

At 10 am I got another call, it turned out to be the person who had left no message at 8 am. He wanted to let me know he had been too busy at 8.30 am to come round. in fact the team was too busy to be able to help me before 11.30 each day. That meant they could only help me at 11.30 each day.

Well I immediately told him what I thought of that and how we had only agreed everything the day before and one thing was for sure and that was that I needed help at 8.30 then 10.30 and once more at 12.30 and 11.30 only was not acceptable as I would have to wait from 6.30 to 11.30 to go to the toilet and that of course was not acceptable as well as not possible.

He told me he would ring back after he had discussed the case with his colleagues. Later he called back to say the team could not accomodate me and my details were being passed over to another team and they would start monday.

On monday another coordinator from the other team arrived for another intake, she seemed more practical. MD decided he would reshedule his hours at work and go in at 8.45 so then I would not need any help until 10.30 and then at 12.30 and 14.30. We agreed all this and the coordinator left.

She promised someone would be round later to help me. Noone came round at 12.30 and MD had to come home early again to assit me. The coordinator called just after 12.30 so I told her no one had showed up and now no one need come as MD had come home to rescue me off the loo and was planning to work via the pc.

The first day proper was Tuesday 3 April again the first person should have been here betwen 10.15 and 10.30 and arrived at 10.45 and left at 10.50. At 12.15 there was another no show I was instantly so desperate to go to the toilet at 12.30 and somehow struggled on the wc chair and sat on wc from 12.30 til 13.15 til Richie could rescue me.

The person arrived an hour late at 13.30 to assist me by that time Richie was home from work and I had a very sore bottom and a lot of pain. Told the late 12.15 arrival to cancel the 14.30 as my partner was home due to the no show at 12.15 to 13.00.

Wednesday 4 April again everything totally not as agreed on monday of the same week. MD was going in later so went to the toilet at 9.30. no sooner finished then the first one arrived at 9.40 instead of 10.30 and I sent her away told her that I did not need her then but at the agreed time of 10.30. The next one arrived around 11.00 also too early should be at 12.30. She promised to return at 12.15 to 12.30 by the time she arrived at 12.45 I was desperate hadn't been able to concentrate on anything apart from not pissing my pants for half an hour. Murder!

If only she had turned up on time as I had to call Richie just before she came to say no one is here again and I am desperate. Luckily for me she right after, but not for MD who zoomed around in minutes like a bat out hell. Only to find he had a wasted journey and the home help here when he arrived. On his return journey he was knocked off his bike by a car.

He spent the next day at home feeling stiff and painful all over and really stressed we both were.
Since organising the home care we have both been even more stressed than before plus we pay an own contribution.


Schedule:

Monday: 10.30- 12.30- 14.30
Tuesday 10.30- 12.30- 14.30
Wednesday 10.30- 12.30- 14.30
Thursday 10.30- 12.30- 14.30
Friday 08.30- 10.30- 12.30

Happy days Spike is ok yipee!

Spike is ok yipee!

Some good news today the vet phoned to say the tumour was a beneign one and Spike is ok so he not only looks like a fit little dog he really is a fit little dog too. So pleased about the news what a relief. Think I will stop now and go and give Spike and Marleen a biscuit.

The only excitement ...........

"With the only excitement being will I be able to get out of the chair and transfer successfully on to the toilet or will it go badly wrong. "

Only wrote those words on the blog a mere days ago and already I am being denied "the only excitement". Can't go to the toilet anymore on my own, certainly not this toilet its too small to ride in with the chair. It started on my birthday suddenly I could not get back up from the toilet my darling had to lift me and swivel round with me in his arms in the doorway and place me in the chair. Quite a manoeuvre much too exciting for both of us and not good for his back at all.

This week Tuesday after much discussion on how to handle things we decided we had better borrow a bed and a commode from thuiszorg (home help org). This is so that I did not need to have the scary bit of getting into the bed will I fall into the bed or tip up on the floor and the too exciting bit where md has to haul me up out of the bed where I hold him round the neck and he pulls me up to a seating position and then hold onto two handles and fall backwards into the chair. Really bad for his back especially swivelling me round in bed.

When my knees refused to let me stand it also became clear I could not sleep in our bed anymore so sadly decided on the thuiszorg bed, a hoog/laag bed, one you can adjust in height and the motor will move the bed to a sitting up position. A necessity for me and better for md's back and my nerves. Really gutted about the commode but really could not use this toilet can't stand up and shuffle in. Also devasted as this is another bit of independence gone, fucking hell I can't go to the toilet on my own.

I need some sort of equipment that I can hang on while I pulled up my knickers and trousers.
Perhaps the equipment exists but it will cost a fortune more than a poor cripple can afford. Beginning to see that we may need all sorts of equipment to help my darling and others lift me and move me around. Hope that's not for awhile but then last august I did not think that by November I would be fulltime in a wheelchair and that by my 56 birthday I would not be able to stand up and go to the toilet.

Sadly still waiting to hear if I can get the wheelchair that I need and also still waiting for next week Thursday in the hope there may be the flat of our dreams on the housing department's site, dienst wonen. Once every two weeks 1 to 4 flats are put on the site that are suitable for wheelchair users. Suitable does not mean equipped for someone in a wheelchair as most places do not have any adjustments for the handicapped.

I have been applying since september last year so far nothing and so far have not seen a flat that has anything specifically for someone in a wheelchair. So I have been stuck indoors since July when I could not do the stairs on anymore. Since July 2006 I have been home fulltime unable to leave the house alone. Could do it with help someone had to ride shotgun and make sure I was not standing on my foot or more my right leg down a step if the knee got stuck.

Then in November I could not walk down the steps anymore could hobble round indoors with the help of a stick and then a walking frame on wheels, a rollator. from mid November the mobility bus people, fine fellows all of them, carry me up and down a little chair that dangles in between them. its not pleasant at all, really scary especially as its all out of my control.

So since then I have only been out for appointments at the rehab clinic and other exciting medical appointments and occasionally also a walk round the park or a quick shopping trip or walk down the market. Often forgetting to buy anything as I am too excited about just being outside, like yesterday md and I were out just a walk down to the market near us and a sandwich from our favourite Surinam sandwich shop Surima on the Ten Kate markt. Tasty saltfish with lots of pepper sauce yummy, have no been there for ages.

Real nice so many people still recognized me especially as some of them have not seen me since I broke my knee cartilage I September 2005 so real sweet there were a few hellos as we rode down the market. I felt quite euphoric not surprised as I have not been outside for a walk in weeks just therapy sessions and home. Mind you the weather is only now getting nice to go somewhere it was too cold and usually raining not nice any time but certainly not in a chair.

Just when you thought it was ok to get back in the water...

Blimey yesterday morning I was having a real bad time, that's what I thought it was until at the end of the afternoon a sudden phone call made me realise yesterday morning was bad cos I felt bad and not because something bad had happened.

This became clear to me when I picked the phone up and got the results of Spike's tests. The very nice vet's assistant had some bad news for us, the wee lump my darling found by Spike's mouth is a tumour. They don't know if its a nasty or a beneign tumour.

Spike is one of our two Jack Russells, he is a maniac, full of energy to play day and night, recently he has been very sweet with me even more so since I am in the wheelchair. Yesterday I thought life could not get worse and now I know it can. Our little dog has a tumour, we won't know until the vet has removed it whether its a nasty one or not.

An appoinment to remove the lump was made for next week tuesday. Bloody hell how horrible. We both could not believe it especially as here is no sign of anything untoward about our little doggy. There he is full of energy trying his best to cajole us into a fun game, just the thing for taking our minds off everything. Well except perhaps more games and then at some point he and the other dog Marleen hope that one or both of us will be generous with the biscuits.


Have to wait til next week, then its a horrible waiting day tuesday which costs heaps so we can start the month of april with a deficit just what you need when you are watching every penny and on top of that will it be ok or is this the start of more bad news and nore medication and treatments.

Feel like throwing my head back and howling this can't be happening to us surely I am dreaming?

The doctor will make it better

I want my life!

Not a good day today crying quite alot, started after a friend called to talk about setting up a rooster of people who would take it in turns to come round to visit me and to take me out so that I do not become too isolated.

Was quite upbeat on the phone but the moment I put the phone down I also put down something else as tears seemed to erupt right away. Sobbing my heart out, tears flowing down my face getting very wet and desperate. Heard myself wailing I can't take this anymore, don't want to be here anymore. Then realised what I was saying and cried even more at the thought of not being here anymore.

Not being here with my darling whom I love so very much. Don't want to be without my darling. Don’t want him to be without me either. But don't want this anymore this day in day out dead-end existence where I can do nothing but sit here in a chair and feel pain and discomfort and never ending exhaustion.

With the only excitement being will I be able to get out of the chair and transfer successfully on to the toilet or will it go badly wrong. My spastic spring-loaded legs could catapult me into the boiler or up against the wall behind the toilet. Anything is possible as I try to stand by placing my feet carefully on the ground then fold back the foot rests and swing them out from the chair. Then I place the phone, which is always with me on a ledge by the toilet in case I have an accident or something else happens when I am moving around in the chair. This time it goes ok I am only slightly banged up against the wall as the force from my spasticity tries to control my movements and direction. Just in time I manage to counter balance the force and allow myself to fall gently on to the toilet seat. all i need to do now is get up again.

Just feel drained and tired all day and all night with no let up, and no reprieve, and no early release for good behaviour. No end to this situation or just one I don't really want as then I am not around anymore. Not here anymore means curtains for my life. The final curtain call that I was hoping would not happen for a long time after many many more years happy with my love. Thought we would get old together was so looking forward to that. Love our life together our love, our laughter and enjoyment. Never wanted it to end.

The really bad thing about having something like ms is the fact no one can really do anything for you. You have got it and that’s it no one can make it better, take away the symptoms cure you they can't do anything. And that is very scary as we are all brought up to believe everything can be sorted out, problems are elimnated, bad health cured, pain relieved. The doctor will make it better. But here we are with an illness where no one knows how to make it better. It’s the blind leading the blind in the hope they will finally understand exactly how it’s caused. At the moment the medical profession are having a horrible time too. Imagine we all begin to cotton on to the fact that medicine is just trial and error and not an exact science. Blimey we might not have such overwhelming faith in the doctors supernatural abilities to cure us, to wave the magic stethoscope and the mighty scalpel and cut the bad things out of and sew us all back to fine glowing health.

talking to you my darling

I will never finish talking to you my darling

How to tell you how much I love you how to tell you all the ways I really appreciate you and all the things you do for me and have done for me since we met. From the minute we met you surrounded me with tender feelings it scared me, as I was not used to being loved when we met. Really did worry me so very much, one big worry would you find me boring, I had been so hurt and bruised by the time we met that it was almost inconceivable you would want to be with me.

Birthday with friends

Yesterday was my birthday it was a lovely day, Strangely I had been very worried about my birthday this year, really quite scared. Wanted people to come round just as always, wanted to party all night and knew that was a daydream and generally felt anxious about my birthday how would all go. What would they think when I need to go to the toilet and have to get all doors closed so that I can get into the toilet in my chair.Have to park in the doorway and heave myself up then try and maintain some sort of balance and quickly pull my trousers down and fall on to the toilet. Since yesterday I can't do this alone every time. Well I can sit down its getting back up again thats not happening. Sometimes I can do it no problem then suddenly yesterday that seemed to be totally over. That was horribly humiliating, this happened just before friends arrived. Real panic on my part my body seemed to be seizing up really made me scared did not know what was happening.Got in a right old state and even demanded we phone everyone and say please come any other time just not tonight. My darling realising I had not eaten well quickly sorted out food for us both. He also said don't phone and cancel you know you would love to see people and besides if anything they will love you more for being so scared and still going ahead with a wee party anyway. He said really don’t you worry they will understand and love you even more. Besides we are all only human so don't worry all the visitors are friends. Just for a second this worried me even more.Then when everyone got here bloody hell my panic levels rose to the roof, especially as I had to rush to the loo right on cue just as soon as people were arriving. Oh dear oh dear and then guess what it all went well and I had a brilliant time, we all enjoyed ourselves there was a lot of laughing. Got compliments on my new outfit told everyone it was a birthday present and who from. The bubbly was as bubbly as ever really love the stuff.All in all a brilliant conclusion to a worried day after panicking would it all go ok or should I cancel. Always love a birthday party, love to celebrate mine for at least a week really hated not wanting to celebrate this year. Talked with my darling and he said probably you are having a panic attack because you have not seen many people for the last couple of months. Really he said since November you have mainly just seen fellow cripples and got out of the practice of seeing your friends and then only in ones and twos nothing as scary as a group.

Birthday present

7 march 2007



Birthday present.

Early March, love this time of year,
The afternoons are longer, but only just.
Its still dark and wet but spring could be round the corner.
This time its hard watching all those signs of promise.
Knowing that for me it does not feel the same.
Not the same as last year. Last year when I did not know.
Did not know I was chronically ill. Thought then I was recovering from a bad knee.
Then I thought with perseverance and a lot of willpower I would get better.
Sadly last years birthday present to me was the first clear signs of ms.
No wonder I am fearful about my birthday this year.
What will be my surprise present this time?

Poems 4 march 2007

Lost in feelings.
Feelings too strong to understand except to feel more helpless,
Hopeless sitting by the kitchen table, its a grey early morning once again confronted with all I can’t do.
Fucking hopeless feelings of despair floods of tears,
Life is all on top of me. Feel submerged
Almost like being stranded except I am still here right in the middle of it all.
Yet lost, lost in feeling lost in pain and fear.
Still can laugh still can have fun but its all so hard.

Nearly my birthday
This year I don’t really want to know it’s my birthday feel too raw. The ms so new surely it could go away for my birthday.
Surely ms and birthdays don’t go together.
Surely my birthday present will be no ms.

Feel like a symptom.
Feel more and more like a symptom not like me.
Too involved in bodily processes.
How’s my bladder today.
Can I have a crap?
These things once were taken for granted now they are major facts of life.
Its no longer what shall I wear today but how often have I been.

Intimacy.
Need some intimacy now I have lost closeness of sex.
Can’t feel sexy safely.
Masturbation causes spasms of such intensity that they threaten to throw me out of my wheelchair.
These are not pleasant spasms but out of control like the kick of a mule.

Shower time.
It’s not fun anymore having a shower.
Need help, can’t do it alone anymore.
First I wheel into the shower it’s a narrow doorway and a small steep incline.
Steer past the hot radiator.
On go the brakes and I heave up out of the chair.
My darling quickly whips my knickers down my legs as I fall back into the chair.
Legs trembling, spastic as fuck.
Over to the shower seat.
Heave myself up again and sideways into the shower chair.
Spastic shivers through my body as the water hits my body almost can’t control it and fall off the chair.
With my darlings help I wash and rinse off then get dried.
Its all time consuming and painful for us both in different ways.
Shower time is not like it was before.


Getting dressed is such fun.
Rage rage rage but that won’t put my clothes on.
Sitting cursing in my chair.
Thrown my knickers on the floor, not me but the spasm in my foot.
Lean over to do it again and nearly fall on my head.
It’s time for help as I realise I can’t do it alone.

It's not nice being this handicapped

I am trying to stay positive but its hard when even going to the toilet is a huge challenge as both legs are affected now so have not got the left leg to support me so once I get up out of the wheelchair at the door I have to somehow sway around holding onto the handholds to give me the leverage to manoeuvre my feet in the right position in front of the toilet and quickly take my trousers/knickers off and hope to aim accurately and collapse onto the toilet. and then its a huge effort to pee or poo both need leg muscles to help the action so its hard work and takes ages.

And sadly bedtime is horrible for me and not a place to go for comfort as lying down produces awful spasms which are painful. I then lie on my back unable to move much apart from my head and arms and they are getting abit spastic too. having a real problem with pillows can't find anything that supports my neck properly(I have a neck hernia)but is nice and soft and does not feel like a paving stone under my head and does not make me sweat. I get overheated at night and can't turn over to cool off as you normally do and then I wake and Richie has to get me up. must try and find a lighter duvet as the one we have is too heavy, can't have the weight but need the warmth.

What I really hate is not being able to get in and out of bed, having to wake Richie at least three times at night. so you see its not just feeling a great bereavement but being faced with alot of problems due to getting less and less mobile. have to get the exercise machine as quickly as possible as it really does help keep the legs exercised and that's the only way for me to keep the circulation going and stops my paralysed legs from swelling up and will keep bowel and bladder regular for as long as possible.

How it feels to have MS is the feeling of half of me, my legs being “dead” but still being there, like my right leg I don't feel it anymore and the left is getting like that fast, it feels really scary to have bits of your body pack up like my ability to walk but also the knock on effect of not being able to go easily to the toilet, things that came natural like bowel/bladder movements are hard work and alot of work with few muscles left and the joy of getting shit on my hands as I have no feeling in my fingers. and the additional joy of if all else fails having to help the last bit out of my bum with a finger that feels nothing. its not nice being this disabled. now the fingers lost their sensation life has become more difficult as everything takes ages and I constantly drop things and can't pick up things or hold even a cup of tea for more than a quick gulp.

Really sad about the fingers as it makes the nice things like putting on my lovely earring or other jewellery usually impossible for me and I mostly can't do my finger/toenails as my fingers not only don't have any feeling but also no strength. and then there is shower time when I have to carry out some awkward manoeuvres in order to get over and onto my shower chair that's been installed on the wall under the shower.

No its not nice being this handicapped and in this situation living here where nothing is set up for me where I can do so little and am a virtual prisoner in the flat, it is very hard to move on.

By the way there was no houses for us last Thursday so its waiting for Thursday next week for another chance.
hope there is a flat for us next time, and there will be if they put some new flats on the site.

Wish I could find something that backs up the theory that the fall could have triggered the MS as this often is the case with MS. the FNV lawyers are still deciding what if anything they can do or rather demand on my behalf.

Every little bit helps

I been waiting since august 2006 to get my own wheelchair and other aids I need to help me live as independent a life as possible.

So far the red tape has been horrible, instead of assessing my needs they only want to give me the cheapest chair yet I need it permanently and all the time.

I have been refused a invalid car too expensive even though it would be very useful for me plus wheelchair.

I have been refused a handbike even though it and the motomed are the only ways I can exercise my paralysed legs, again too expensive.

I appealed the decision not to give me a handbike and had a hearing about it last week. I prepared well for it producing a small document for both members of the panel and expected them to be equally professional, both were totally disinterested and accepted the document supporting my case then hardly bothered to listen to my additional arguments and informed me right away that the decison was still no. So much for a fair hearing where all evidence gets looked at and a balanced decison is made. No it was a pro forma hearing with an immediate pro
forma decison.

I can have a bed if I accept a hospital single bed which excludes sleeping with a partner, obviously the chronically ill don't need intimacy.

I can't wait for burocracy to help me, can't afford to let anymore time go by have to start living and exercising and keeping my body as fit as possible.

To do this I need to get the following:

A good bed that is electrically operated so I can get up and go to bed independently without MD's help.

A handbike so I can exercise top of my body, its also pretty good for going for walks with the dogs. One with a help motor for the moments when my strength runs out.

A motomed to exercise my legs, its got a help motor which exercises my legs when I can't pedal myself. A very useful machine and will keep me healthy and stop problems with circulation and other secondary effects from the paralysis.

And a good wheelchair.

These items cost heaps of money, I dare not wait until we have saved up the money as by then my muscles will have gone west so I need to act now.

Got so desperate that I actually sent an email out to all my friends asking for contributions as every little bit helps. I hate to ask for help and especially hate asking for money but do need all the help to remain independent.

pearls before ......

Amazing thing yesterday my social worker advised me to speak to my case manager about finding out the details of the rent rebate you may be entitled to as a handicapped person.

When I ask my case manager she tells me the following gem:
" I know nothing about that why don't you call the tax office and when you find out let me know as there are quite a lot people who are always asking me about thus"

this is supposed to be my case manager who is there to sort out this sort of stuff.

Happy days!

Good grief all those old clichés about your health being the most precious thing

20-1-07

Good grief all those old clichés about your health being the most precious thing and nothing else being as valuable seem to be true. Mostly people would mutter this darkly when someone who had become rich became very ill or lost a partner or some other tragic loss of health. Always thought it was said by people who would have no hope of making it big anywhere.

Now I know its true now mine has been taken away so quickly, one minute I am walking the next hobbling and now just sitting in this chair much too passive but that’s what happens especially in this cut costs at all times culture as if health, happiness and social and cultural involvement can be measured by burocrats and their silly tests.

But what a load of shit really is not only a shitty disease but so quick fucking scary really is and what next. Will I wake up any day soon and find I can’t move at all. What a lot of pants really shit this ms, no none can tell me for sure, there are no guarantees no advice and no treatment. Lots of drugs made by lots of drug companies, which help some people, but not all and they have horrible side effects. Most of the drugs are not suitable to a lot of people but hey who cares when big profits can be made.

Now I can’t walk anymore I don’ t feel big, can’t walk tall and strut my stuff can only sit around small and chair sized, downsized to the size of a chair. Don’t feel very much like me and need to get back to feeling myself and being myself instead of feeling totally dominated by this disease. Keep thinking if only I could call out ok I have learnt enough stop its enough already let’s go back to how it was before but that’s dreamtime cos in real time that’s not an option.

23 -1-07
Just to make it all perfect the cold and flu has now progressed into what’s politely known as a tummy bug and a feeling of general unease. Bad enough without ms but in a wheelchair its overrated.

27-1-7
Finally starting to recover from the flu today ate food with taste and appetite and even a small glass of wine. That’s what I call living it up big time

Shangrila

31/12/2006

Just back from four weeks at the rehab clinic. It’s now 5 months and 12 days since hearing the words “you have got ms” on the 19 July this year. A mere 5 months seems like a whole lifetime away as everything has changed dramatically. At first it was only my balance that had gone, at first I could hobble with a stick and for awhile that went ok but then it became clear I needed to use a rollator (walking frame on wheels) and before I knew it the rehab clinic had put me into a wheelchair on 22 November and very quickly it became clear I could no longer use a rollator and I would need to use a wheelchair fulltime. It has been fast far too fast this transition from walking if badly to not at all really scary.

At first the wheelchair had been only for trips outside the flat, once we got to our destination I could hobble around with the aid of walls and furniture and from September with the aid of a walking stick. At the end of October I had to admit that hobbling was going rather badly and to avoid falling I must use the rollator.

No problem until the second week in November when I fell with the new lighter rollator, this was the day when the strength had suddenly decreased in my left leg and on getting up that morning I swung myself out of bed with the handholds MD had constructed over the bed. But on this morning instead of delivering me safely next to the bed and on my feet, it swung me around like I was an aspiring trapeze artist before dumping me on my knees on the floor next to the bed. Luckily I could just manage to drag myself up on my left leg, as the right was totally weak.

Then I hobbled into the front room in search of my rollator and clean clothes. I found the rollator and reached for the clothes hanging on the rack over the balcony door. And the next thing my knee had locked as I had over stretched to reach the tee shirt. Trying to steady myself on the rollator without the brakes being on made me fall and this time I could not get up. It took MD 15 minutes to get home to scoop me up off the floor. Just in case I got cold in the meantime one of our Jack Russell’s decided to come and sit on me.

From then had to get the mobility bus to carry me up and down the stairs, as I could not walk down without help anymore. It’s not a pleasant experience being carried up and down the stairs. Very worrying and totally out of my control, have to trust all goes well and we don’t all fall down the concrete stairs. The rehab clinic were so worried about me spending too much time at home that they offered me a place there for a month in the hope my rehousing needs would be given a boost.


Back home again since before Christmas and find myself back to square one, stuck up two flights of stairs dependent on being carried to go out and trapped here in inadequate flat with not enough room or safety, less fysio has meant I have lost strength and stamina as every day lost counts at least double in muscle deterioration. Felt hopeful in my last days at the rehab clinic that I would be able to pick up my life again but being put back here without any mobility and safety is very bad for me.


And now other things are not working too well my left leg is also getting weak my right leg is getting very spastic my hands losing their feeling getting all cramped up and when I lie down in bed often my torso gets spasms and goes rigid. I can’t get up or go to bed independently and can just about wash and dress on my own. And if all that was not enough my right foot is getting all swollen because of fluid retention due to lack of movement. Life sure is different to before the 19 July.

Can’t believe how in July I thought I was having a bad time, in the light of how things are now it was not so bad as now, it was not nice but I could still leave the house still have some independence now all that has gone. In July I could still hobble downstairs and across the road, I could get up when I wanted to and shower, dress and make and eat breakfast. Then oh bliss I could carry my cup and bowl of cereal in one journey to the front room and plot up in front of the pc to enjoy the newspapers with my breakfast. Now I can’t do more than one thing at a time, which is also better for now as I learn how to get about in a wheelchair.

Now I need MD to get me up during the night when I need to go to the toilet, luckily our toilet needs during the night are almost identical, but still it’s dreadful to have to need so much help. At 5am MD gets up and so do I for a quick visit to the toilet and a hand back into bed and hope to sleep till 6am. Then at 6 am I have to get up as MD leaves for work. I stagger around in my wheelchair half asleep with nowhere to carry on sleeping and unable to do anything else but hang around uselessly.

Most days I feel ok about myself but sometimes especially now I am stuck at home again I find myself wondering what use have I got these days. At the moment it seems not a lot as there is nothing /no function that I can fill. Must remember what I was recently told, oh yes you are not loved for what you do but who you are. Find this a difficult one to absorb. And in my case am not totally convinced this is true for me surely only for the others.

What’s horrible with all this ms bullshit is the effect its had on everything suddenly I am not first and foremost Herrad but a sick poor zielig (pathetic in Dutch) person where all communications are constantly about my ms I am no longer sexy, dynamic Herrad or intelligent or busy or even just plain boring me but a medical case.

Slowly but surely this is coming in between others and me. I am turning into a collection of symptoms and orifices as the ms jo jo’s up or down. And as I realise that I have little control over its progress. It’s horrible to be so concentrated on myself and my condition hate to be so self absorbed so up my own arse. Sadly that too is true, as I have to help myself when having a crap is a problem. Suddenly you are back to early baby stage with your own shit on your hand but what do you do when you can’t squeeze the last bit out of your bottom.

This is the sad fact of life and confirms how flexible we are and how many compromises we are willing to make in order to live with the way it is and make the best of it all. But it does make me feel different feel very much handicapped and somehow in a parallel reality. Mind you the way I am going I shall be declared a saint any day now.

Joking aside I really need to move on now and explore my new life. Been telling the various authorities since August when I noticed that my condition was deteriorating quite quickly that I needed all the facilities and mobility aids that I am entitled to now and not later. Can’t understand why they cannot let me have a new flat a bit quicker.

Why do they not have systems in place to allow them to find a suitable flat in their database? The same authorities could provide the people from a recent building disaster with fully equipped replacement flats in a mater of weeks. What’s happening to me is happening to lots of other people. We are all waiting in our homes that are now totally unsuitable places to pick up our lives.

Despite it being the year of the handicapped this year and despite it being law since last year to make sure we all have the same access and we can all take part we the handicapped are not an interesting item. Despite a lot hell of a lot of money being made from us, despite the million-dollar industry that is the disabled industry no one has the political will to make sure the facilities are there for us.

We after all are not as important as the displaced people, most of them owner occupiers from the building disaster as that involves money and ours doesn’t in fact most of us due to no fault of our own by being handicapped have now entered the territory of the deserving poor.

It’s a struggle to get everything that I am entitled to as everything has to be cheap not suitable not good for my situation and condition no I am matched to the wheelchair and not the other way around. Again very short sighted, as bad aids will only result in a shorter life for both the aid as well as the person involved. Give others and me what we need and we can manage better and remain as independent as possible.

I have been waiting since September for me own wheelchair and cushion as well as fittings in the flat to make my life easier and safer. In November I was told that the handholds would be installed as a matter of urgency. As I understood it this would be a priority and would be in place very quickly, come Christmas they would be there for sure. Here we are nearly mid January and still no sign of either fittings or the mobility aid so MD could take me down the steps without the aid of third parties or the mobility bus.

This Saturday I got a letter from the burocrats at the housing department. They are abit like John Prescott they still have their salary and office but no department, and no houses to allocate. Perhaps in a month’s time I shall hear whether the aids will be installed. First they need to receive a tender from the nominated company, then they will decide based on the price they are quoted if the aids are to be installed.

I find out from the letter that my case manager and CIZ have only applied for two handholds, one in the shower and one in the toilet and minimizing the doorstep to the shower. No mention of all the other items, which I thought, was also asked for, such as additional handholds at each side of the toilet plus other adjustments. In the meantime I am even more in limbo as I cannot do too much here safely on my own.

Still trying to stay as optimistically as possible and telling myself happy days will soon be here and all will work out keep calm the new flat and all the aids will be here soon. But time and again I heat about cost cutting and other dehumanising bullshit that really disheartens me. And I am still waiting foe everything.

While at the rehab clinic I tried out a variety of chairs and found one that was excellent for me and my condition and needs but I can’t have it as its not only well made but it does not come from the company with the monopoly on contracts from the council and it’s too expensive. So now I will get a chair that is much heavier and nowhere as good. A chair that will be too heavy, difficult to use and hurt my back.

Everything you are entitled to is a battle as they try to fob you off with the inferior items, you can have a bed that can be lowered and raised, as you need. It’s great to sit up in bed and to get up independently. But not in one of those hospital beds. In a hospital setting they blend in well with the rest of the medical equipment but for a home surely they have modified versions so the person can keep their dignity as well as preserve some of their personality and their intimate relationship with their partner. But no they don’t, if you want that sort of bed then you have to accept the one-persosn sexless version.

Have to sort something out with the bed I need the freedom to get up on my own

The next battle is getting a fitness aid called a motormed viva 2. This is a brilliant fitness aid that is basically an exercise cycle without a saddle you remain in your chair and place your feet in the footholds and activate the motor. You pedal yourself and the motor helps you out this is really good for keeping some movement in your legs and is really important for good blood circulation as well as preventing various complications and stopping spasticity. But again it seems it will be unlikely for me to get such a machine cos of costs. Shame as I really need it to stop getting very spastic and good for blood circulation especially my right leg which I can’t move.

They are not cheap at 3,500 euros but much cheaper than providing me with full time care, which I will need if I deteriorate at too quick a rate. Which I am likely to do if left where I am now on the second floor flat which is not set up for me where I can not get into the shower and where everything makes me feel helpless. Here there is no room for movement only room to sit and contemplate the state of my body and hope my mind stays optimistic.

Can’t believe how difficult I thought everything was in august and September compared to now it was nothing at the best a party and at worse a mere inconvenience. Here I am getting depressed and not easy to live with, not able to communicate it’s shit.

In fact at the moment all the shit has taken its toll, it’s not just the waiting but also the incredible burocracy, which generates enormous amounts of paperwork. Most of which happens in order to justify the job and not to help or inform. Bloody hell what with all the paperwork plus the waiting it’s a fulltime job being chronically ill because of all this time consuming intrusions in your life it takes even longer to terms with the new situation. Can’t seem to find the time and space for myself. The first month was quiet but just when I thought now I will try to sort through how I feel the whole application for aids, such as wheelchairs and new flat took over, before I knew it five months have gone by and still in the same situation. Oh happy days!

Happy Days part two

A good case for the ombudsman.

Given that since January 2006 the law states institutions have an obligation to plan for disability, with laws from the E.U regulations. The obligation is now on public institutions to plan for disabled needs and to assume disabled needs will need to be met.

This obligation to the disabled has clearly been ignored in my case. The flexibility needed to deal with increased disability in housing has not been provided thus placing myself and other disabled people in severe distress.

In my case it means that I am now in limboland, forcd to live in an institution and unable to live at home because of two flights of stairs. And the question arises will I be able to leave here and resume my life or will I be forced to stay in an institution.

I am capable of independent life and have a committed partner willing to help and support me. Two flights of stairs stand between me and independence.

I can not fight this disease but I can claim back as much as possible.
But I can’t I am a patient in an institution.

Happy Days !!

What a decision to have to make.

The Rehabilitation Centre Amsterdam have offered to give me a place there to get me out of the flat cos I can't do the steps in a safe way anymore so spend too much time sitting in a few places and my muscles are losing strength.

Also its potenially not safe me being locked in on the 2nd floor as well as very unpleasant for me being home now for 5 months in a sort of house arrest. If this were Burma there would be an outcry.

All being made worse cos of waiting to be rehoused with at the moment little hope, the council give you documents saying you have priority but it's pretty meaningless as they dismantled the social housing here so have no flats to distribute to the people they give prioirty to, which seems to be a strange way of doing things.

Hopefully my going to stay at the RCA for a month will get things moving, certainly that's what the Rehabilitation Centre hopes will happen. I hear that the burocrats have been getting lots of calls and emails and are buzzing around and maybe they will even sort it out soon especially as the RCA must be quite expensive.


After the shock of the first couple of days and a glorius weekend at home with MD the first full week at the RCA, last week 27-11- til1-12- was not too bad at all, it certainly improved after I got a room of my own. Did not have to share with the middle class gentleman any more. He was on the phone every night til gone midnight plus tv and other noises it was horrible. Since wedsnesday 2 9-11 I can sleep through the night again.

"seems to be life but not as we know it Jim"

I have been meaning to post an update but have not been able to until now and tonight it's not going to be much.

Just need to post the fact that I just can't believe the new world I am having to learn to live in, this parallel universe to the one I was in just a few short months ago when I was still walking even though with difficulty.

Can't believe that up until recently I thought that all this sort of thing, care of the sick and handicapped was well taken care of here in Holland. Shock/horror to find the opposite seems to be the truth.

It sure blows my mind the amount of hassle and time it takes to get all the things I need. Lots of telephone calls and lots of paperwork and many layers of burocracy. And many disappointments as over and again my nose is rubbed in the fact that I am now somehow less than I was before.

The last weeks since my first post has been spent going to appointments at the rehabilitation center and making endless phone calls chasing up the possibility of being rehoused and/or finding another solution to living on the second floor without a lift. Everybody has told me that I won't be given a stairlift cos its too expensive.

My other aim is to get myself a closed vehicle to get about in, a scootmobiel is very nice but not in all weathers especially as the ms makes me very sensitive to the weather, extremes of temperature makes my ms worse. So I shall be trying to get hold of a little car, a canta is ok but a threewheeler like a piaggio and a hoist lift for wheelchair would be brilliant.

Ok more soon, in fact plenty more as I have tales of my adventures with getting and using a shower chair, the wonders of the mobility bus and other stories.