An Enjoyable Day.

Roberto Matta.

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

It is really pleasant having Richie's sister Aud visiting us, she arrived quite late last night; it was really lovely to see again.

The dogs of course got overexcited when the doorbell rang and they were even more excited when Aud arrived at our apartment door.

We started talking immediately and were having such good fun that we stayed up much later than we meant to, all of us very tired but also extremely happy.

Richie gave me my baclofen tablets with freshly pressed orange juice at 10.00; he also had a delicious Pakistani honey mango for my breakfast.

Then he massaged my right arm after which we started doing my arm exercises, I my left arm Richie my right arm.

Followed by my leg exercises as well as massage after which Richie hoisted me out of bed and into the shower chair.

After a lovely shower, I was dressed, perfumed and returned back to bed to await the arrival of the rehabilitation clinic doctor and the wound nurse.

Milou, the wound nurse brought Dr. Janneke Stolwijk for a second opinion, Richie rolled me slightly to the left, so that they could get a good look at the wound.

Dr Stolwijk decided that she would have to remove a piece of hard skin which was stopping the wound healing, it took seconds but felt much longer.

Then Milou and Janneke left again after 15 minutes, most of which was spent talking and laughing, which really helped take my mind off what was happening.

Once they were gone, Richie made some delicious celeriac soup with crispy croutons, which was very good.

Aud brought a selection of English cheeses for us, which we sampled, there was Shropshire Blue, Double Gloucester, Wensleydale, Lakeland Cheddar Leicester all of them extremely tasty.

Richie has just got back from shopping and came straight in to tell me that he had bought a whole hake; we will have fish, chips and peas for dinner this evening.

It was a lovely being showered and dressed by 12.00 and back in bed ready to enjoy the entire afternoon with Aud and Richie and of course the dogs.

Before I do that I shall find a piece of artwork by Roberto Matta and post this on my blog, then I can enjoy the rest of the day, which I'm looking forward to.

Tired But Happy.

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

Today has been an extremely tiring day; it started at six o'clock this morning when Richie got up to take the dogs out to the Park for a run as well as play.

Before Richie went off with the dogs, I asked him to get me some THC which had me drifting back to sleep quite quickly.

Sadly I never managed to sleep as deeply as I did before I got woken up, and before I knew it Richie and the dogs were back from the Park.

Richie came into bedroom and started doing the relaxation exercises on my right arm, then we did both arms together, I did the left arm, he did the right.

After which he did my leg exercises, Richie moved them, this is good because it keeps the muscles supple.

Richie gave me a wonderful shower; he dressed and perfumed me, Chanel 5 to keep my confidence up at the hospital

The ambulance came for us at 10.30, the appointment was for 11.00, it was a bit of a surprise as we needed the extra half an hour to fine tune our departure.

We were at the hospital just before 11. 00 and was seen pretty much seen right away, two nurses took us to a treatment room.

They tried to insert a catheter without any luck, after a while they went and got two doctors who also tried to insert a catheter.

I was starting to feel like a cross between a pin cushion and a dart board with all the attempts to get a catheter into the stoma.

It took one and a half hours for the catheter could finally be inserted into my bladder and the other catheter in my uretha.

After a while the doctors got their senior colleague to come and see if he could get a catheter put in.

After the first hour when it seemed that doctors were not getting anywhere and the pain got to me, I started to cry.

Then I apologised, they responded by saying it was no wonder I was crying as it must be very painful for me, they all thought I'd been very brave.

Just when I thought I was going to be told they could not do anything for me and I would have to have a new operation, the third Dr got the catheter in.

Then we had to wait another hour for an ambulance to take us home, I found it really difficult to wait so long as I was beginning to feel very uncomfortable sitting propped up on an examination couch, which was hard.

Finally just after 13.30 the ambulance came to collect us and we were home at 14.00 which was wonderful, now I am totally shattered but happy it is done.

More Waiting.

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

This morning was different it started earlier, Richie woke me up at 08. 00 because I wanted to be ready well before the Seetech appointment at 11.00.

First of all he massaged my shoulders, then my arms before starting doing exercises to relax my tight muscles.

After that I did more arm exercises, as I can't hold on at all with my right hand and now my left hand is also losing its functionality so I use wrist supports.

Peter, who works for the rehabilitation clinic made the supports, they go around my wrist, they held on by Velcro, they have a hook.

This is attached to the handle over my bed and I can do my stretching exercises then Richie places two handles higher and I do more exercises.

While I do those, Richie is doing my leg exercises, lifting, stretching and then massaging both legs.

After brushing my teeth, taking my baclofen tablets Richie got me out of bed and into the shower.

It felt good to be in the shower so early in the morning, I think this will be our new routine, so we can get the most of the day now summer is coming to an end.

Everything went really well and I was back in bed by 10.00 well before the appointment at 11.00.

At 11.22 Rini, the man from RTD Het Dorp finally arrived, he showed us how the Seetech computer worked.

Disappointingly there was no English dictionary installed, and they had got the wrong German application, not a dictionary, there was also no e-mail program and no Word installed.

When I heard this my first reaction was to say please take it back and first install the English, German dictionaries then it will be useful for me.

If possible also install an e-mail program as well as Word, I was told that Word would not be supplied as the health insurance think WordPad is sufficient.

But if I wanted Word I would have to buy myself Windows Office and if I did, it comes with an e-mail program.

However I was eventually persuaded to keep the Seetech computer here so that I could practice every day and would be ready to use it fully once everything is installed.

Rini promised he would return the incorrect German application and ex-change it for a German dictionary, he would also retrieve the English dictionary.

Next week he will let me know when he has got both applications and then he will make an appointment for the week after.

So in two weeks time I should have a Seetech computer setup for me, which it is not at the moment, once again I have to be patient and wait.

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.

                                                                           

Beautiful Sunny Friday.

 
Miguel Cubiles.

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

Here it is Friday again, looking forward to the weekend and the rugby and football tomorrow afternoon.

Today has been a day of two halves the morning started well; we woke up at 09.00 when the phone rang, after awhile I did my arm exercises.

Then Richie did my leg exercises and massage after that he got me sitting up with the table and laptop.

Richie had a lovely long shower, which he enjoyed very much; afterwards he made himself a cup of coffee.

No sooner had Richie drunk it when I needed Richie to get me out of bed very urgently so I could go to the toilet.

My bowels were quicker than Richie could get me out of bed, luckily the sheet was protected so did not get messed up.

By the time the hoist lifted me out of my bed the room was filled with the smell of my shit.

These are not my favourite moments, sadly we have both have had to get used to them.

So used to it now, that I do not feel embarrassed anymore, we just get on with it, as we always do and once I had been to the toilet and had a shower I felt brilliant.

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.

Looking Forward.

Kirstine's Scotland Photos


Strange how difficult it is to go out, guess it has been ages now, since August 2008 that I have had to stay indoors and I need to take it slowly one day at a time.

Had not expected to feel like that as my first time outside was end of April, and then I went out quickly before I had a chance to think about it and panic.

That is why getting so worried yesterday took me totally by surprise, it happened just before we went outside, when we were leaving the building and got out into shade and a cool wind it occurred.

Think now it was good that my panic happened, as we have talked about it and now I know what to expect I can cope better.

Always good to talk especially about things that are worrying so that I do not worry about worrying which is an awful thing to get stuck in.

Today I am glad my panic happened as I am now more aware, that I am trying to put myself back into life outside of my bed and the bedroom.

Now I am not surprised that April was no problem I was up for it yesterday and charged out saying that I would do my exercises when we returned.

Yesterday we had a visit from Marianne and then Johanneke my occupational therapist and by 16.00 pm I had plenty of time to worry which I did.

Thanks to Richie’s encouragement and support I got round the bock with him and the dogs and got to sit in the sun which lifted me.

I badly needed a boost, going out for the fourth time this summer somehow was more loaded than the other three times.

Guess yesterday was also tinged with frustration that I had not managed to get out more this summer as we had hoped and expected.

The three setbacks have been quite demoralising and being back in bed three times shrunk my world.

So yesterday finally getting out was almost too much for me to cope with glad that with Richie’s love and support I did cope.

Look forward to having many more trips outside this summer
.
.

Friday and Sunshine and Champagne.

Henri Cartier Bresson.
http://en.wikipedia.org/wiki/Henri_Cartier-Bresson

Today there were sunshine and blue skies when Richie drew the curtains open today; this made a fine change from the rest of the week.

We were planning on getting me out of bed and showered quite quickly as my appointment with my ergotherapist was at 13.30.

I would need to be showered, do my leg exercises on the Motomed and take pills and eat and drink before Johanneke arrived.

Just as Richie flapped the duvet back to do my leg exercises he noticed that the bed was wet, he immediately checked the catheter.

It was in but leaking so he whisked me out of bed having done one leg exercise, we got to the bathr3oom and as soon as Richie took off my leggings the catheter was dribbling urine everywhere.

Good that it did not happen before as that would have been quite messy in the bedroom, once Richie realised the catheter was not in proper2;ly he adjusted it expew2rtlpy.

Then he proceeded to shower me and get rid of the unpleasant smell of urine, amazing that we did not smell lit before.

Can only think it happened after my exercises, as just before I got my arms out from under the duvet the duvet fell over my head and if the catheter had been leaking I would have smelled it for sure.

Oh well we both stayed calm, pointless to do otherwise, once I was showered and Richie put clean clothes on me, I felt good.

Once I had done the exercises with the Motomed, Richie put me back in bed and I got myself together for Johanneke’s visit.

She got here a t 13.40 and stayed until 15 pm, she will organise the bed which can be adjusted to sitting up position plus bed with raised knees.

And she is getting two long cushions made which will keep me centred as well as a cushion for between my feet and the foot board.

And she is going to see if a simple device that we hope can asset me in reading books, would be nice as there are plenty of books out in the hall that I would like to read.

She is also getting in touch with the company R.D.Kompagne, the supply gadgets that will assist me with using the phone, switching on the TV, lights, opening door and starting the laptop up.

A useful gadget, it was a very productive meeting, our third meeting, second with Ludwine, my first ergotherapist.

After Johanneke went, not too long after our friend Cecile came by with a bottle of real champagne she had left over from New Year.

We were celebrating my goods news that Dr Smit thinks that the wee wound will be healed in two weeks and Cecile got the all clear, that she is clear of cancer.

We were also celebrating her article had been published plus her investigative piece was on the TV.

We had plenty to celebrate, the bubbly was delicious and the two of us had a fine time together.

When the bottle was empty Cecile left but not before she rang an old aquaintence I had not spoken since 1989.

Was very pleasant talking to her it was sweet she remembered me too.

Happy memories and even happier anticipations of getting out into the spring sunshine pretty soon.

Misty February .Day.

Today is a very misty day, it was foggy at first but that cleared somewhat, it won't be a bright day today but maybe tomorrow.

Slept until the cold and the sound of the lorry winching the container up to empty its contents woke me up before 8 am.

Luckily Richie got up then and went to the toilet when he came back I told him that was cold, and asked him for a blanket and could he shut the window.

Soon as Richie had closed the window and put a blanket on me I felt warm again and slept on without any problems for another 2 ½ hours which was wonderful.

As soon as I was awake at 10.30 I did my arm exercises, my arms were very stiff and painful, but once I had done the exercise I could stretch my arms which was good.

Funny how I have become used to living with pain, I am aware of it all the time just now do not give it any time.

I have accepted that the pain that I feel is my nerves sending wrong messages, which does not mean it hurts less.

What it means for me is that I understand what is happening and won’t let it get to me too much.

As soon as Richie did my leg exercises and massage and I was ready for the day, but first a cuddle with Spike.

Spike has been so good since he is locked up, we do let him out regularly for cuddles and of course to go around the block and eat

Every time Spike is out Richie has to quickly close the gate to stop Marleen nipping in and stealing anything she can find.

She is not put off by the door being closed, each time she gives it a through once over, as she is desperate to get her nose in and flick the bolt back.

When she could not do this she growled at it and still kept going trying to find the right angle so she can crack it.

This morning was the same, as soon as Richie had brought Spike in here, he got Spike out for his good morning cuddle.

Poor Spike had to go back in quite quickly as he could not bear Marleen cruising around eagerly eyeing up his chew and his toys.

Poor Spike he has to stay quiet for four weeks, four weeks of Marleen planning to burgle his prison.

Bright Cold February 3rd 2010

Pop Art.

Thought Ton would come here today, so took a lormetzepam last night and slept until 10.30 did my arm exercises and Richie did my leg massage and exercises.

After that I took my baclofen and calcium/vitamin D tablets and then brushed my teeth and washed face and neck and hands.

Then I was ready for the weekly inspection by Ton, from the RCA, the Amsterdam Rehabilitation Clinic.

The phone rang and it was Ton to say he wouldn’t be here today, but tomorrow at 11.45 with Ludwine, the doctor’s new assistant.

She, Ludwine is made for this job, she is so good, good empathy with her target group which are people rehabilitating from a variety of reasons and causes.

When I first met Ludwine I was still walking, if only just, had recently bought a smart black walking stick.

Then I could just about get up and down the two flights of stairs between me and the outside world.

Shame the tablets they have now to stop walking getting progressively worse, were not available then, they may have been able to help me then.

Maybe if my first neurologist had taken some action, things might be different now too, he did nothing and would not even give me any information, none.

He very clearly told me in so many words, I can’t help you are going to get progressively worse.

We can warehouse you, and give you personal care, we just can’t offer you any medical care, and there is nothing we can do to influence your MS.

Sadly there is nothing we can do, but observe and watch and document your steady decline.

All the more reason for me to make sense of it by deciding I can only be here and now, we all are.

We all need to realise that we all only have this now and none of us know what the next minute can bring.

Sounds good to me, like the only good way to live.


It is very cold today and bright and sunny which I am going to enjoy now.

Nice Visit From A Lovely Friend.

>











After sleeping well last night woke up with very stiff arms which were extremely painful when I tried to stretch them out.

Poor Spike, he can’t cope hearing me in pain, so he joined in and squeaked loudly, so I imitated him.

It was quite a sound, not sure what it all meant but every time I squeaked he seemed to answer me.

When I had done my arm exercises, Richie did the leg exercises and leg massage as well as exercising the foot and ankle and massaging my feet.

Every night just before I go to sleep Richie massages my hands, seems to help relax me and aids falling asleep.

After the exercises and tablets my day started, tried to do some writing and reading but could not concentrate.

Richie got me out of bed at lunchtime and showered me so I would be ready before a good friend came to visit.

It was a pleasant visit and also very useful, as Anja, phoned the Zorgkantoor, who pay me my carer’s allowance.

Good she phoned as she got the information that I could not get when I phoned, turns out they had incorrectly took same money out of my allowance.

Now that will be corrected and once the money is no my account, then I can send in the paperwork for this year, so everything has been sorted out satisfactorily and I can enjoy these lovely dark silent winter days just before Solstice.




Before I go I would like to pass on this lovely surprise award I received from Debra @ Living with MS

http://living-with-ms.blogspot.com/

I would like to give this Most Inspirational Award to the following blogs that I enjoy reading:

Ana@ Hella Heaven
http://hellaheaven-ana.blogspot.com/

Doug. B@ Groping The Elephant
http://gropingtheelephant.blogspot.com/

Crazy Cris@ Here There And Everywhere
http://crazycrishereandthere.blogspot.com/


Aparna @ My Diverse Kitchen

http://mydiversekitchen.blogspot.com/

Lynna@ Petit Gateau


http://amourpetitgateau.blogspot.com/

Kevin@ Closet Cooking
http://closetcooking.blogspot.com/