And Marleen

Spike

Its been a quick year for me, last year at this time only my legs were immobile.

Could feel the nummbness creeping up my legs, by Christmas it was creeping up to my waist.

This October the numbness has crept up to just under my breasts.

Pressure sore.............

This nasty deep wound on my bottom is a pressure sore from sitting badly in the wheelchair.

Sadly easier to get than to get rid of, happens when balance and sensation do not work anymore.

In June a team from the Rehab. centre advised that alterations/adaptations be done as quick as possible to prevent pressure sores.

No immediate action happened as it was holiday time so had to wait til end of July/beginning of August.

I also applied for a constant airflow cushion you get them from Doove here in the Netherlands and Ease in the US.

First they denied their existence then they said they did not work and then I found out it was considered too expensive.

Money being more importent than any other comsideration.


So my wheelchair was not adapted in time to give me adequate support, it was obvious in March when I got the chair that I was not sitting good.

The result is the pressure sore that has kept me in bed since 21 August.

Hope that it heals well so that I can sit in a wheelchair again and get outside to visit friends and the market.


Well doing my best to stay positive and make the best of it.

Happy Days at home.

Pretty euphoric after wednesday, felt like I had been given the best present in the
world.

And I had.

Staying here with my darling means everything to me and its the best present ever.

Wednesday it really hit me how much how much Richie loves me and how much I love him.

Been very emotional and very happy too.

Happy Days!

The meaning of life.

We don't need to think too deep and hard about what this life is all about.

Life is about here and now and living and enjoying this time.

Enjoying being.

That's what matters enjoying what you have.

Not worrying about things we can not change.

Concentrate on the things we can change and influence in our communities.

Concentrate on spreading love and understanding and coperation.

We neeed to remember that we are unique individuals living our lives.

Enjoying our lives is the meaning of life

What a relief!!!!!!!!

Both of us slept very badly tuesday night due to the plastic surgeon coming round in the morning.

His visit almost gave me back the mobility in my legs, as I was so very scared that I nearly jumped out of bed and hid in a cupboard!

The anticipation was as it turned out worse than the reality as instead of immediate removal to hospital the plastic surgeon after a through examination told us that there was significant improvement in a small area of the wound to indicate that the wound could heal in time.

He did not think that a big operation and months in rehab with no guarnatee of success would be a good course of action for me.

So I can stay at home with my darling Richie which is a huge relief for us both as I do not want to waste the good time I have left in hospital.

Especially now when it is becoming clear that I do not have too long to go, hope I am wrong and there is still years ahead with my love.

After the visit which seemed to last forever we spent the afternoon happy if somewhat tired and both slept well last night.

My mum

My mother's parents

My dad is the one on the right.

Me in 2001 age 50.

Plastic surgery

In the morning we will hear if I have to have plastic surgery and when I have to go to hospital.

From what Richie says it seems the chances of not going to hospital are slim.

I am really scared so is Richie, we have both cried which relieved some of the pressure we have been under since dr.Smit told us two weeks ago that he wanted a plastic surgeon to give his opinion.

It means two months in hospital and rehabilitation centre, two months away from my darling and home.

Two months of being a patient and two months of being bored of not being able to be online.

Just hospital routine and bad food and being terribly patient.

The saintly human dartboard!!!!!

Feel fresh as a daisy after my darling gave me a wonderful shower and fresh duvet cover and sheet and pillow case and topped it of with a great dinner.

A great evening spent laughing and talking with my darling and being pampered by him lovely.

Wish that healing prayers and pleasant thoughts would help me get better.

Sadly that is not possible with a chronic disease such as MS and especially in the progressive phase.

Doctors are not interested in progressive MS because they can not medicate as the MS drugs available are all for the other forms of MS.

Additionally they can not give a prognosis as to the course of the disease as they can with most other diseases.

This must be very unnerving for the professionals, always strikes me as being abit like the Emperor's new clothes.

Poor doctors suddenly revealed as not having the knowledge we assume they have and suddenly its the Wizard of Oz and behind the curtain there is a man not a wizard.

Both neurologists that I have been to could not tell me anything apart from advise me that cannabis was the best painkiller.

Day by day.

Listening to pleasant music on fire.fm, its a great free add-on in Mozilla Firefox.

Did not notice the track was sad until my thoughts became very down and gloomy.

When I thought of my immediate future suddenly felt it was not going to go as I had hoped.

Suddenly felt like what I was wanting was being taken from me by this pressure sore.

Luckily got myself out of those thoughts, easy to get stuck there and howl endlessly.

Putting another singers name into fire.fm changed everything.

Feel better and will take it day by day.

Best way for me.

Saw the doctor and the nurse today from the Rehabilitation Center Amsterdam.

Not good news today, last week progress was slow but was being made.

Today it was clear that not only was there no progress but the wound had got worse.

We got very stressed about it all and now we are faced with difficult choices that need to be made.

We are going to let it all sink in first and then we will discuss it and make a choice.

Port of Spain, Trinidad.

Me and Spike