Sunday, June 29, 2008

Great saturday!!

Great day today went off to the market spoke to heaps of people on the street.

Love to say hello to everyone we see on our way there and back.

Got in touch with some friends and have invited about 19 friends and neighbours for a picnic next saturday on our sunny street corner.


Everyone brings food and something to drink and we will have a great time.

Saturday, June 21, 2008

Better days.

The two worrying days I posted about on thursday 12 June became 5 days before the urine was blood free again.

It was monday 16 June that it was clear again and I could finally bear to see what was in the bottle.

After wednesday I kept my eyes tightly closed everytime Richie emptied the catheter bag.

Just could not bear to see a bottle of what looked like red wine.

Know that it was not pure blood just abit of blood disolved in lots of urine but it looked really horrible.

Still get nervous when its time for the bag to be emptied.

Oh well going to try to concentrate on the good things now.

Thursday, June 19, 2008

What a tuesday,

Thought my sight was really going on tuesday as everything went hazy luckily its was only tuesday.

Was a huge shock as also suddenly could not steer the electric wheelchair.

Had to get Riche to move me round the room and could not type or use the mouse.

Found the other mouse the headmouse very difficult.

And frustrating to use as you need to be able to see well.

Could barely eat and drink

Felt kind of submerged in the horror of even more loss and so suddenly too..
then it made me very determined to be here and to be as big and me as possible.

Determined not to give in to the panic and shock of more disability.

Yes this has been a top speed journey from mobile to so disabled but still taking part and even more focussed on enjoying now.

Can''t stop the ms but will not lose myself and what I have still got.
felt stronger once I decided that.

Saturday, June 14, 2008

Donut pillow and A & D ointment

Thanks for your mail Anne with information about the donut pillow.

Never seen any like you describe here, the ones here are inflatable like small swimming rings.

Do you sit on it during the day and alternat between that ad your normal cushion?

Hello Diane, would love to know what A&D ointment is, hope you sees this and let me know. Looked on your site for a way to send

Thursday, June 12, 2008

Worrying days.

Two very stressful days, a sore developing on my bum and blood in my urine.

The doctor talked to a urologist who says this happens alot with catheters.

Have to stop taking the anti blood clot pills for a week, to see if that helps.

Doctor was here yesterday and will be here tomorrow.

Richie is doing his best to stop the sore developing

He gently showers my bottom every morning and night and dabs it dry gently before putting cream on it to stop the skin getting fragile.

Its all very worrying and I am having to focus on staying calm.

Sunday, June 08, 2008

Saturday not a good hand day.

Friday was brilliant hand day compared to yesterday when I could not take my earrings off or put the Baclofen in the pillbox nor open my specs case.

Thought Friday was too good to happen everyday.

Have not been able to put my earrings in my ears for nearly a year now.

Can not use tweezers any more nor nail cleaner nor cut or file my nails.

Can not read books and magazines nor open letters without tearing them open with my teeth and even then getting the letter out of the torn envelope is near impossible.

Saturday, June 07, 2008

Having fun and laughing is important.

My condition is getting progressively worse, my legs do not do much on the motomed machine so its the machine that does the most these days.

My arms and hands are just about functioning, yesterday had a good hand day, could just about turn the pages of a magazine, managed to plug in the charger for my mobile, could put the next days baclofen tablets in the pill box and take my earrings off as well as open my specs case and put my glasses away and shut it.

Does not sound like much but most days these simple actions are not possible.Can still type with one finger and pick up a plastic cup and use a fork to eat.Richie is brilliant he does everything for me and does it so well.

And of course lovely friends make it all better too, yesterday Karin did my nails which always relaxes me and is something that I really look forward to.Halfway through the manicure got an unexpected visit from Cecile so all in all a lovely day.

Going to the theatre on monday showed we can still go out and have a good time, really enjoyed it very much. So much so we are going to go to the Fijnhout theatre, across the road from us, to a performance this tuesday.

Just saw a very scary episode of Doctor Who, very spooky still one of the best programs on the BBC.

Thursday, June 05, 2008

Poem by Lee Bridges.

Hanging Out At Basjoe’s

When you’re hanging out
You meet many travellers who
Want to know, why do you like
Hanging out in Amsterdam, and
Being unable to articulate the
Brilliance of a Rembrandt, the
Social humanness of Frans Hals
Or the genius of De Koning, a
Quite simple and, indeed far
More honest reply is, to tell
Folks it’s because you enjoy
The smoking-coffeeshop scene
Where you can go up as high
As you wish without having to
Worry about “ The Man ’’
Pulling you all the
Way back down.

Lee Bridges
(WWWHHHOOOoooeee! 1997 Amsterdam
ISBN: 90-803701-1-8)

Here's a link to find out more about Lee

Wednesday, June 04, 2008

Nice afternoon today.

Had a lovely afternoon with a good friend, Anja, we chatted while I finished doing 3 sets of ten minutes on the motomed.

A great machine which seems to help me a great deal as it keeps my legs muscles from shortening and cramping up as well as helping reduce spasms.

After the physio came and did the arm stretching exercises and gave me a shoulder and neck massage we went round the block.

It was nice to get out for a quick tour of the neighbourhood And see people going about their business.

Nice to say hello to the ones I know as well as those I do not know, all neighbours in a friendly neighbourhood.

Monday, June 02, 2008

Happy Days!

What a wonderful evening at the theatre, Happy Days by Samuel Beckett is wonderful.

Fiona Shaw is brilliant playing Winnie.

Thoroughly enjoyed the play.

If you get the chance to see it do.

Really happy we went.

Sunday, June 01, 2008

One day at a time.

I have been thinking alot about my life and all the things I have experienced and all the people I have known and still know and that has made me quite contemplative.

It has been quite a journey from Trinidad to England with a few years in Germany then back to England and then to the Netherlands.

Been noticing that I have not posted alot recently but will do more as I do love to communicate and get feedback

Do not want to just write lists of all the things that are getting more and more difficult for me to do.

But on the other hand my blog is all about writing about what is happening to me and sharing that information.

Notice very clearly how much my disability has increased and how very little I can do.

Have to really battle to keep going as I am so aware that I need to keep my spirits up at all costs.

My auntie Sigrid, who lives in Canada phoned today which was lovely, she often like today asks me hopefully if I can walk again and is always very disappointed when my answer is no.

Poor auntie wish she would not ask but guess she wants to keep her dream alive that her favourite niece will get better.

Tomorrow we are going to Stadsschouwburg (the theater) to see Happy Days by Samuel Beckett.

Very exciting hope it will be a great night out, going to the theater is something that we have not done for years.