First Tuesday with Jools Holland on TV.

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

The first Tuesday without the prospect of good music on Later with Jools Holland was not such a nice one, but I soon took my mind off it by listening to music by Bach.

Listening to Bach’s music is always an uplifting experience for me, I do like the classical composers Beethoven's is one of my big favourites.

I remember years ago when there was a sale at a WH Smith shop in Reading when everything was so cheap that I bought over 40 LPs.

I had a wonderful cross-section from Richard Wagner to Jimmy Witherspoon, Bessie Smith and many other wonderful artists.

I also bought a lot of rock 'n' roll, some rockabilly and punk music so great range of music which is what I enjoy listening.

In the afternoon I had an appointment Peter from the rehabilitation clinic, he was here to discuss the wrist supports which allow me keep using the Motomed.

As well as the exercises which I do in bed utilising the handle that dangles over the bed which I can no longer use to pull myself up with.

I now have two new handles to use in bed which will be easier for my hands to hold onto, a good appointment which was very useful for Richie and myself.

A Huge Contrast To Yesterday.

 

Roberto Matta

.http://en.wikipedia.org/wiki/Roberto_Matta

Last night after I did my exercises on the Motomed Richie returned me back to bed, where I expected to be able to sit well.

It was shocking to discover that not only was I not sitting well but I was also feeling really dreadful.

I felt at my most handicapped and disabled than I've ever felt before, it was shocking to have this experience yesterday evening.

I had not expected this to happen as I had been to the toilet before I did my arm and leg exercises and had a huge bowel movement.

Sitting better was what I expected would happen as a consequence of going very successfully to the toilet.

Over the last few years we are both noticed that there's a huge correlation between needing to have a bowel movement and sitting badly.

Any time that I am consistently flopping all over the bed Richie knows now that it is time to get me to the bathroom which usually solves the problem.

I have not had any such problems today which is really lovely, it has meant that that for the first time in a couple of months I've been able to answer outstanding e-mails.

Hopefully tomorrow I will be able to start responding as I always have done to comments left on my blog which I always like to do as its nice to be in conversation with my blog friends.

Then I quickly edited the Dutch translation of my blog, it went very well and I was able to translate the title as well as labels.

As a consequence of all this I now feel very efficient, this is making me very happy as I love to be on top of things.

I'm enjoying feeling so much better than I did yesterday; in fact the contrast with yesterday is quite noticeable, tomorrow maybe different again.

Whatever happens I am enjoying today, that is really all that matters to me is enjoying what I have right here and now.

A Different Complexion

 

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

It's only 18.15 right now, yet it feels like it was already 02.15 and before Richie closed the curtains it looked like it too.

This afternoon at 14.15 I had an appointment with Peter, the engineer from the rehabilitation clinic, to try the new wrist supports with a hook on each which he made for me.

This allows me to keep using the arm exerciser on the Motomed, which is very good as it stretches my arm muscles, which is essential for my well-being.

Peter is a very good engineer, so I am looking forward to trying out the new wrist supports in a while when I do my exercises when Richie gets me out of bed.

Right now Richie is about to take the dogs for a run around the Rembrandt Park where I'm sure they will have fun chasing rabbits back to their burrows.

Just now I realised that as its Tuesday there will be another edition of Later with Jools Holland on BBC2 at 2300 tonight.

That is very exciting and it has put a totally different complexion on the day knowing that I will be listening to some good news before too long.

Only three hours to wait, that is not long but to me being very impatient it seems like forever.

My father used to tell me a little rhyme which went something like this, patience is a virtue, virtue is a grace and Grace is a little girl who did not wash her face.

In Germany they have a saying which goes something like this, patience is a virtue and that is a nice virtue but that we are better off without it.

I like both of these sayings although the one my dad told me used to worry me slightly as a little kid until I understood then it made me laugh a lot.

It still makes me laugh a lot after all these years as do many other colourful stories that my father told me, he was a great storyteller who I miss hearing his stories.

Accept The Inevitable.

Roberto Matta

http://en.wikipedia.org/wiki/Roberto_Matta 

Since Monday I've noticed that my left arm has become much weaker, when I'm sitting doing my exercises with the Motomed I can't lift my hand to my face.

It is also not possible for me to dry my eyes with a handkerchief nor is it possible for me to adjust either my glasses or my clothing.

What I've also noticed is that I have difficulties raising my left arm adequately in order to do my arm exercises in the morning.

The other thing I am having problems with is using the THC vapour bag, I can use it in bed as I'm not sitting up too much so I don't have to fight gravity.

This latest progression is too fast for me but that is how it goes, is nothing I can about it apart from accept that this has happened and I can't change it.

Not easy for me to accept what is happening, I hate this latest development, the worst thing for me is feeling that I can do nothing.

Not easy for me as I'm not a passive person, I need to feel in control and proactive neither of which is possible with this latest progression of my multiple sclerosis.

It feels like I am in mourning for my bodily functions which are being lost to me, right now it is difficult to dictate this as I am crying too much.

What makes it worse is not been to remove my glasses and dry my face, as well as clean my glasses, which means I can hardly see the text through my tears.

In a while I will call Richie and ask him to clean my glasses and dry my tears then I will try to regain my composure.

There's nothing that I can do except to accept the inevitable, that is so difficult for me, but I have to do it as there is no other alternative for me.

The only thing I can do is what I'm doing now which is trying to make the best of a really shitty situation by being positive and making the best of it which I will do.

Looking Forward

 

Kay Sage 

http://en.wikipedia.org/wiki/Kay_Sage

What a truly dreadful afternoon that was yesterday, we went to the bathroom so much later than normal around 15.00 and by the time we were finished it was 19.00.

Then later on we both forgot that I hadn't been got out of bed at 21.00 as we had planned, so I could do the leg and arm exercises using the Motomed and going to the bathroom

We’re both really quite disappointed that we've forgotten these basic things, especially as we had watching things on the telly to fill the time before the very last Later with Jools Holland was on BBC two.

There wasn't a lot of time left before the programme started, Richie managed it somehow which was brilliant.

I would never have wanted to miss last nights show, so glad we did as right at the end Jools Holland announced that it was the end of this series.

Very disappointing to hear that, now we will have to wait patiently until the program Later with Jools Holland comes back in September.

It is such a good program; it's really great to see so many good bands and singers, fabulous to see so much new talent.

As well as fantastic favourites, this week both on Tuesday evening as well as last night Jimmy Cliff was there with his wonderful band.

I love Jimmy Cliff, his songs are brilliant, his voice is so good and still is, and then there are his fabulous clothes.

The other thing is that he is not a Rastafarian; in fact he doesn't agree with it at all, he always wears a red star to show what his politics are.

Been absolutely wonderful that we've been able to watch Later with Jools Holland for the last six weeks, it's just so hard to hear that it was the last show of this series.

It never feels like nearly 2 month it always feels much quicker than that, it's a real shame that there is no other good cutting edge music programs like Later with Jools Holland.

Once the two ‘extravaganzas’ in England are over, we won't have to be constantly bombarded with how wonderful the Queen is, as well as the hype surrounding the Olympics.

Then there is something good to look forward to in the autumn, but first we have European Cup Football to look forward to, this is happening sometime soon in June.

A Good Day

Julian Trevelyan

http://en.wikipedia.org/wiki/Julian_Trevelyan

A good day, today our friend Anja came to help me with some administration.

First of all she phoned the court about my hearing next Wednesday, appealing the council’s decision to refuse me air conditioning.

Recently Anja, who is a social worker, had a client who also had a court appearance, but could not attend; she was allowed to communicate with the court during the hearing via Skype.

Anja therefore thought that it would be no problem for this to happen next Wednesday for my hearing.

However when she phoned the Amsterdam court, they told her, that they did not use Skype, nor could I be videoed so that I could be seen and heard during the hearing.

We amazed at this, how strange that another town and another court would allow Skype, but not the court in Amsterdam.

How very typical, what they were prepared to do would be to phone me during the hearing and ask me questions, this is second-best to the court seeing and hearing me.

There was nothing to do but accept the phone option, as the only way I could have any presence on Wednesday, I am quite disgusted by this infringement of my legal right to be present.

Anja and I went over all the arguments again, all the reasons why I need the air conditioning and why not having it is making my life very miserable.

I don't hold out much hope of the council’s decision being overturned especially in the current economic situation.

Sadly the council seem to have seen my application as something quite frivolous, which isn't; it is a vital necessity for me during the summer.

Once Anja had gone home I carried on writing my statement for the court hearing.

Richie got me out of bed and sitting briefly in my wheelchair to use the Motomed.

Near the end the door bell rang, it was our wonderful friend Jaya, who had come to visit us for three wonderful days.

The Real Reason

Endre Rozsda 

http://en.wikipedia.org/wiki/Endre_Rozsda

Yesterday a very good day, I sat in a reasonably stable position, and needed only for Richie to reposition me once.

Unlike today, when I've needed him to move me several times, and then typically as soon as Richie and the dogs left at five, my position became very difficult to maintain.

I'm so glad that Richie and the dogs are back now, finally after two hours of sitting extremely badly and in much discomfort, I will be adjusted that so that  I can be comfortable.

It worked, but not for long because quite soon I was slumped once again, at 19.30 when Richie got me out of bed, we realised what the real reason was for my bad posture.

Once again it was all down to bowel movements, I desperately needed one so instead sitting in my wheelchair to do my exercises with the Motomed, I asked Richie to take me straight to the toilet.

Good thing to as I was desperate to have a crap, what a relief once it was over, it was huge and no wonder I was totally destabilised this afternoon.

No wonder I could not maintain my position, and also no wonder I was feeling quite miserable.

And actually started to cry at which point I called Richie and the rest is history now, because I'm back in bed having successfully done my exercises.

Feeling Very Optimistic.

 

Alma's view of the Antennae galaxies, created using measurements from 16 of the dishes installed on the Chajnantor plateau in the Atacama desert, Chile. The Antennae are a pair of distorted spiral galaxies that are colliding about 70m light-years from Earth.

http://www.guardian.co.uk/science/gallery/2011/oct/03/alma-telescope-opens-in-pictures?INTCMP=SRCHhttp://www.guardian.co.uk/science/gallery/2011/oct/03/alma-telescope-opens-in-pictures?INTCMP=SRCH

 

Today the sun only came out at the end of the afternoon; a beautiful sight, nice for people after work and the kids playing outside.

I am happy today, I could do my arm exercises again, I also had a good physiotherapy session with Mathilde, followed by my leg exercises on my Motomed.

Later this week I will get an appointment telling me when Ruud will deliver my new wheelchair seat, he was here last Friday to do a fitting of my new seat, which went well.

The new seat was so good that instead of trying it out for a week; Ruud has taken it away to make small adjustments and to get it upholstered.

After one more week of discomfort, I will be able to sit well supported and will be able to enjoy going out again.

At the moment going out is not nice, I get rattled around in my wheelchair because of lack of support, and the wheelchair rocking about.

Wednesday Welzorg will be here to show us a better steering system for Richie so that we both feel safer outside.   

All the issues will be discussed with Percy, from Welzorg and Edith, my local council mobility advisor, hopefully there will be a good outcome soon.

I am feeling very optimistic about getting my wheelchair sorted out; this will, improve going out immensely, which makes me happy.

                                                                           

Today Was A Lovely Day.

Billy Childish.


http://en.wikipedia.org/wiki/Billy_Childish

Got up at 10.00 this morning and was showered and dressed by my darling Richie for 11.30 and did my 30 minutes on the Motomed, was ready for the appointment at 12.15 with Johanneke, my occupational therapist.

She was here at 12.15 and was very apologetic about the miscommunications and the resulting delays; she promised it would not happen again.

She also promised to send me a cc on all correspondence relating to me, which she did today, seems she already got several things sorted today.

Such as my new bed which goes up at the head end which should allow me to sit up better, that is something of a bonus for me especially if it works well.

I will also get another appointment for the IPaq, the Home Servant; this lets me switch on lights and turn on the TV and DVD player, makes the bed go up and down and sits me up.

There are some teething troubles so they need to return, Johanneke has organised the next appointment for 13 October.

She will be here for an hour to check that all will be well installed and adjusted, think this is a great idea.

As at the first appointment two software nerds came here who could only install but not communicate and inform us as to what they would do.

The result was a few things I/we did not want and which did not work very well, such as two lights in the kitchen area which do not work at all anymore.

And doors I can only open if I am right in front of them and other bits and pieces, am very optimistic that with Johanneke here on the 13 October, it should all go better.

After the appointment we had a nice tasty brunch and then went out at about 15.00 for a walk/roll around the neighbourhood.

It was lovely and sunny weather with a slight cool breeze which did not bother me as I was wearing my new red fleece jacket.

We had a really good time; it was brilliant going out this afternoon and enjoying the sun on my face, my darling Richie bought a few pretty plants, all in all a very good afternoon.

It feels very good indeed.

Mary Cassatt.

http://en.wikipedia.org/wiki/Mary_Cassatt

Yesterday was a good day; Marianne visited which was lovely, excellent to see her and to hear her news.

After she left I did my leg and arm exercises with the Motomed and when I had finished Richie and I sat talking and playing with the dogs.

The weather was not too pleasant although there had been a brief moment of almost sunshine when Marianne was here.

As soon as she had left the clouds looked unpleasant but luckily no rain just gusts of cold wind; cool for Richie cold for me.

Decided that I needed to buy a fleece lined rainproof cape so that I can get out and about when the weather is not nice, which it is here most of the time.

Have not managed to find one yet on the internet also want to find a fleece cape and a jacket which will be useful also for indoors.

Be even better if the sleeves had zips up them for ease of putting on and getting off again I am surprised how many sites that do clothes for handicapped people do not provide this.

Amsterdam always has very changeable weather it is a combination of all the water in and around the city, we are living on reclaimed land here, plus the fact we are close to the sea.

Last years wonderful summer was quite extraordinary for Amsterdam, the last such gloriously hot and dry summer was 1995.

What made yesterday extra special was that I sat for six hours without any problems whatsoever.

That is quite a milestone for me as Ton Peeks said once I can sit for six hours with no problem then I can sit for even longer.

The cherry on our cake which made it an even better day was that our tickets for the Drive By Truckers concert ni Paradiso in November arrived.

Feel like finally I am back right in the middle of life no longer just in bed trying to make the best of things.

It feels very good indeed.

Great Sitting Again In My Wheelchair.

Hibiscus and Orchids in my bedroom.


Today Richie confirmed that the skin had healed so I wanted to sit immediately in my wheelchair.

Which I did for 40 wonderful minutes; while I did my leg exercises with the Motomed, it was great sitting in the wheelchair.

Much better than desperately trying to sit up in the shower chair, which causes enormous strain to my arms and shoulders and is very painful afterwards.

While I was doing my exercises we talked to our general practitioner, Doctor van Wijngaarden who popped by to see me.

She waved happily at me as she came down the road on her bicycle, and expressed her delight at seeing me out of bed for the first time since 2008..

She was very happy to see me sitting again, as she said she had been very concerned as to whether I would be able to sit again after such a long time lying down.

It was excellent being n the front room, it looks great now Richie has moved the table closer to the kitchen area.

It gives me more room to move, my Motomed is at the window by Marlene’s bed, she likes it too.

Great looking up both the roads and enjoying the new plants Richie bought yesterday on th e window ledges.

Brilliant that my skin has healed again so quick, just like Ton said, sadly I forgot to talk to Ton on Wednesday about the length of the time that I can sit.

Remembered this yesterday afternoon but only asked if I had to build up the sitting time again.

Ton mailed back yes and then must have gone home as I could not get him either by mail or on the phone to ask how long I could start sitting for.

It will be very tempting to go out tomorrow to the market especially if the weather is good but I will build up the time again.

Guess we will play it safe, feel abit disappointed that I can't go to the market this Saturday as I so want to go there as soon as I can.

Richie says that as I sat for 40 minutes with no sign of any problems that I could try double tomorrow or maybe even one hour and thirty minutes

And then if there is no signs of redness or damage gradually increase it so that I should be able to get there by Thursday next week.

I will check with Ton on Wednesday just to make sure, but think that seeing as I had recently built up my sitting time to four hours that this will be possible to achieve by next week.

Feeling very happy today now I have had forty minutes in my electric wheelchair.

Not A Bad Night.

Bolivian Art.

Not a bad night slept until early morning, when I woke up suddenly feeling all the pain again, as soon as I was conscious called out to Richie for some THC.

It worked well and I drifted back off to sleep again waking 3 hours later feeling better for the extra sleep.

Immediately felt all my pain again so Richie got me THC after two lots of THC vapour the pain started to recede into the background.

My pain is not gone, just manageable, the THC helps me to relax, these days I no longer get high like I used to, seems the THC just goes to alleviating my pain.

Yesterday there had not been enough time after my shower to do my leg exercises before my physiotherapist got here so Richie put me back to bed.

After the session noticed my legs were going mad, one horrible spasm after the other with hardly a let up, wondered if it was the effects of the hot sticky weather.

Later on Richie hoisted me into the shower chair and placed me in front of the Motomed, strapped my legs in and I did 40 minutes of leg exercises.

Four lots of 10 minutes after that got put back to bed and did not have other leg spasms, which was good.

Had got quite concerned as my spasms were very powerful, banging against the table over my bed and making my laptop move.

Every spasm got me holding onto the laptop scared it would fall off the table, really glad the Motomed stopped them.

Glad we got the Motomed it is invaluable for me, it was quite expensive but well worth every penny as I use it every day.

Wonder what today will be like hope pleasant despite feeling very floppy and having limited hand function.

Oh well could be worse, glad it is not, yesterday clarified for me once again, that living in the moment was the best way for me.

Have now totally stopped predicting and worrying about what if, doing this makes life much easier and more pleasant for my darling Richie and I.

Gorgeous Sunny Day Today.

Henri-Edmond Cross.

http://en.wikipedia.org/wiki/Henri-Edmond_Cross


Lovely and sunny right now but already getting cloudy think the sun will come and go as the clouds cover the sun.

It looks like it is going to be a good day today; sadly Nur has gone to catch his flight to the UK to start his new job in High Wycombe.

Hope it goes well there for him, we told him to come back if he needed too, hope things will work out for him over there.

It has been a pleasure having Nur stay with us these last three weeks, didn’t seem like any time at all, he could have stayed much longer.

Nice when someone comes to stay and they become part of it without any problems, having Nur here was like that.

It has been brilliant having him stay, good to spend some time with him and nice to see that not having seen him for five years did not in any way diminish our friendship

Nur is a thoroughly nice man, very sweet and as nutty as they come, we had such a laugh with him

The dogs seem to be slightly miffed with us for letting Nur leave, they will miss him heaps playing and petting them.

Spike especially, he seemed to remember him from 5 years ago which was nice to see, it was good for Nur too, as he is missing his dog that he had to leave in Texas.

Going to enjoy today planning to get outside later on after a shower and exercises on the Motomed and food.

Looking forward to enjoying this gorgeous day today with my darling Richie and our sweet dogs.





PS
Got this e-mail today thoughrt it might be of interest to people:

Dear Herrad,

My name is Cole and I'm working with a startup company called DiaVibe (www.DiaVibe.com). We've been following your blog and we're hoping that you could help us reach people living with MS. At DiaVibe we are developing a medical device to reduce the pain of needle injections, and want to involve potential users in the development process. We would like to work with you to get a better understanding of the pain felt by your readers who self-inject. Any help or advice would be greatly appreciated.

Thank you,

Cole Bonner
Founder, Diavibe
www.DiaVibe.com

Pleasant Saturday.

Welsh Art.


It has been a glorious sunny day here in Amsterdam I actually felt very warm when I woke up.

So warm that my first thought was that the catheter was blocked again but Richie reassured me that everything was fine and it was the weather that was warm not me.

The temperature really has gone up now which is nice, just hope it does not become too hot too quickly as there is nothing worse than sudden huge changes in the temperature with MS.

Think we need to get a better fan, so when it gets as hot as it did last year we can keep cool; found out last year that ventilation is a big priority for me.

Noticed that I was both excited and quite worried when I heard on Wednesday that I could sit in the wheel chair again.

After my shower this morning I sat for the second time in the wheelchair which was good, it was the anticipation of sitting again that had worried me and not the event itself.

Sitting in my wheelchair to use the Motomed was much better than sitting in the shower chair which gives me no support whatsoever.

In the shower chair I lean very badly to the right, Richie tries to make this better for me by putting a pillow between me and the arm of the chair which helps a little bit.

The wheelchair is better for me as the back has been modulated to give me the support that I need

Enjoying sitting in the wheelchair even more this time than last October, guess the extra time in bed has made me very keen.

I sent yet another mail to Online yesterday, with an overview of all payments that I have made since the beginning of the year.

They insist that every month they try to get the subscription by a direct debit on Richie’s account, which is weird as they have not had a penny since 2006 from any other account but mine

Spent the afternoon relaxing, did not start writing this until about 9 pm after enjoying watching the football.

It is nearly the end of the season so all the games were fast and furious which made for good watching.

Found myself hoping that Manchester City would beat their big rivals Manchester United, it was a huge battle and looked like it would end in 0-0.

Then in the last minute Paul Scholes got the winning goal for Manchester United, their fans were very happy, while the City fans looked gutted.

It really was a tremendous game which was good as so often local Derbys can be dull as one team will get hold of the ball and effectively shutthe game down.

Brilliant that today was different, not looking forward to my team Arsenals game tomorrow, as there is alot riding on these last games
.
Hope that I will be able to watch tomorrow, as quite often I use the laptop screen to hide behind but not tomorrow.

Well time to find pictures and post this before Match of the Day on BBC 2 which I am going to enjoy without the laptop in front of me.

All Is Well That Ends Well.

Mongolian Art.

Did my arm exercises as soon as I woke up this morning, which was a good thing to do as it took some of the stiffness and tension out of my arms.

Make it easier to move my arms around and use my hands, Richie did my leg exercises and leg massage, which also really helps.

Richie gave me a good shower and had a foot and hand soak which was very pleasant indeed, after that I did my leg exercises with the Motomed.

Have had a relaxing day spent for a change without my laptop in front of me, that is because I wanted to take it easy and watch the football with Richie.

Tried again to phone my auntie Sigrid in Vancouver, Canada but it was engaged just like it has been engaged all week.

Sigrid phoned me last Sunday and when I called her back she was engaged and she was engaged for hours that evening.

Thought nothing of it last Sunday, laughed and thought she was catching up with friends, but when she was constantly engaged all week I started to worry.

Had some worrying thoughts about my darling auntie which I did not like, but because I do not have any other telephone number to call, I was at a loss what to do.

I tried to call my other auntie in Spain at her home address, forgetting that her phone would have been cut off since she went to the Care Home.

Sadly I lost her new telephone number recently otherwise I would have called her to see if she had a neighbour’s telephone in Vancouver.

I asked Richie to find a number that I could call fro help and he found the website and telephone and e-mail address of the North Vancouver Royal Canadian Mounted Police.

I called them just over 30 minutes ago, spoke to a very pleasant woman who listened to my story and took my aunt’s address and my details and phone number.

She promised to call me as soon as someone had been to Sigrid’s apartment, so now I am waiting to hear from them.

Hope they get back to me very soon as I can not concentrate on anything else until I know what the situation is.

Hoping to get a call from a very cross Sigrid demanding to know why I sent the police around her address.

Really hoping for such a call from my favourite auntie, wonderful Sigrid, hope it happens soon.

It did and she was very cross until she let me explain and then all was well, she gave me Auntie Herrad’s phone number and the telephone number of a neighbour she is friendly with.

This neighbour sounds very nice, she visits Sigrid often and brings her food regularly, glad that I have this neighbours telephone number and the reassurance that Sigrid has someone near her who cares.

What a relief to hear my Auntie Sigrid’s voice just now, very reassuring, feel much happier now, all is well that ends well.