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.