Saturday, May 30, 2009

Jeannette's house in New Zealand.

Gareth's garden in Wales.

Jaya's balcony in Edmonton,Canada.

Woke up early too early almost managed to drift off again but just at the moment that I was drifting off, the lorry that empties the bottle bank arrived and started to heave the container out in order to tip the contents into the lorry.

Lifting goes on for what seems like forever followed by a huge crash as all the bottles crash down into the lorry.

Got Richie to close the window halfway through hoping the combination of less sound and additional warmth would result in resuming sleep.

Should have asked for a bag of THC as shortly after the window was closed felt all the pain once more.

Sadly could not get back to sleep that just did not happen as my pain levels shot up as I became only too aware of the feeling of being burned all over.

Plus a horrible fizzing tingle which is really nasty, best described as some sort of electric shocks.

It is bloody frustrating getting these sensations and not being able to do anything about it, can’t even shift on to my side or in any way alter my position.

Really upsetting that I am at that moment made so very aware of how much I depend on Richie for everything.

Felt quite marooned here in bed in a body that can not do anything that I want it to do, it is strange.

Remember watching a Charlie Chaplin film where a young woman can’t walk anymore and her despair at being so dependant.

Remember that I was very taken with her situation and for the first time became very conscious of what that might be like so really empathised with her situation.

Then years later not only can I understand, but I am in a worse situation where I can scratch my nose if I want just best not to as when I touch myself it results in red blodges and sometimes bruises.

Not really what I want to do especially as I have enough aches and pains without creating more.

May have accepted much about the way this shitty disease has affected me and therefore my life but can not totally accept it.

Have problems seeing the effect the MS has had on me, I am literally half the woman I was in weight and size.

I was relatively fit before the diagnosis which may have helped me to keep walking abit longer.

Now of course realise others knew and could see that I would not be walking for too much longer.

It had been weird that after making such good progress initially after breaking the cartilage in my right knee that I started to regress.

This was noticeable on my birthday on St Patrick’s Day 2006 when it took me about 45 minutes to do a short walk to a wonderful baker for some cake.

The shop was at most 8 minutes from our apartment noticed that apart from making strange movements with my right leg suddenly my balance was very bad.

After that it got progressively worse and in April was shocked to bits that I could not get to the Paradiso for a punk gig.

Tried to walk there but only managed to get up the road and round the corner when that was it, the batteries were running on empty and there was nothing left, we had to abandon the project and I dragged myself home with Richie’s help.

I kept working until a few weeks after seeing the neurologist and having the MRI on 23 June 2006, when one Monday in early July I could not get further than the top of the road when I collapsed and sort of crumpled up on the street.

A helpful neighbour helped me up and got me back to my front door and I dragged myself up the stairs and rang my work to tell them that I could not get in.

Then came the diagnosis on July 18 2006 where I managed if incredibly slowly to walk to the hospital on the Prinsengracht using the Nordic sticks.

After that my walking became more erratic and my range became smaller until in November 2007 on arrival at the Rehabilitation Centre Amsterdam I was immediately given a wheelchair.

Probably wrong of me, but wish they had given me a walking aid so that I could have walked for as long as I could, and then use a wheelchair.

As soon as I had the use of the chair after just three days my steps became extremely wobbly and on my first weekend visit home I had to use the wheelchair indoors.

Felt like I was giving up, but nothing of course could have been further from the truth as I threw myself head over heels in to trying to get the correct equipment for myself

Very difficult finding your way through the maze of funding and regulations wonder if anyone is totally successful.

Certainly does not happen without quite a fair bit of stress, which won’t happen this time as I am more aware how to tackle things.

Know now that I have to tweak my responses, so I am not too assertive as that will result in nothing happening, as the professionals like to make the decisions.

So must never ask for anything directly, have to put if forward for their opinion, ask what their advice is and then maybe it will get considered.

That is how I got the Carendo shower chair which is a great aid for both me as well as Richie.

It’s strange that everywhere else you are encouraged and have to be assertive except when you have a handicap then you become the deserving cripple who needs to leave decisions to those that can…… walk!

That really became apparent when dealing with the local government workers who administer the WMO which is the law which regulates what each local council has to provide people who become handicapped.

Try telling someone like me that now you are handicapped you have to become invisible well it has not worked and it will never work.

I can’t walk down the road and physically claim my space anymore but I will not stop telling my story.


JC said...

You keep telling your story. I'm listening !!!!

Herrad said...

Hi JC,

Glad you are.


Cranky said...

Herrad - interesting strategy you've had to learn, and sad, too. That "disablism" requires you to be less than assertive. I looked at the Carando shower chair. It is impressive. Must be a huge help for Richie while giving you the opportunity to get a good cleaning. Until looking at the Carando, I thought we had a good shower chair, now I think, "not so much."

Have a lovely day.

Herrad said...

Hi Cranky,

Thanks for coming by good to hear from you.

Hope you are both having a good weekend.

Take care.

ps what type of shower chair have you got?

Stuff could always be worse said...

I hate that feeling of being trapped in your own body, I have had that. I went through all the aides and now I use a power wheelchair, which I feel like I can run around with. Live sort of a normal life, just not as tall. Everyone has to decide what is the best for themselves, since we are all so different.
Love your photos also

Herrad said...

Hi Kim,
Thanks for coming by good to see your comment.
Hope you had a good day today.

Stephany said...

I've learned much from you and it's not just about MS. You're teaching us all to never give up and to not lose our spirit inside, because no matter what that is still there.

I am anxiously waiting to know what Richie cooked for dinner on Saturday! :)

here are photos of my blooming rhododendrun in my backyard saturday morning.

I've been online less last week because I am teaching through mid-june in 2nd grade.

take care


Amrita said...

Hi Herrad,
You are such a brave lady.My disability seems small compared to yours.

The progression of your disease must have been so pain and emotionally taxing.

I have my struggles. The worse being inability to work and depending on my mother 's pension for sustanance. InIndia we don 't have denefits from the government.

Herrad said...

Hi Stephany,

Hope you are having a good weekend.

Richie made crab curry yesterday it was delicious.

I too have learned that no matter what I am still me.

Hi Amrita,

How lovely to hear from you hope you and your mother and your family and friends are doing ok.
Take care of each other.

Hope you all have a good weekend.

Ana said...

We are all listening.
Today I went to Amsterdam at Second Life.
Of course the red zone is the only place available.
But I will go back there just to take a picture for you.

Richie said...

it has been a hell of a shock for us and I think you cope with this unacceptable situation so well
I know it is no compensation for your autonomous movement but you know I am always here at your service and with love in my heart.
You are not at all diminished by disease only disabled.