Monday, January 31, 2011

The Last Monday In January.

Cyril and Marleen.

 Today has been a very grey, overcast and extremely cold day, a typical January day but despite the unpleasant weather it is good to notice that the days are getting longer again.

Lovely that January has ended so quickly especially after the dramatic start with someone starting a fire and causing a flooded basement.

Then us both getting influenza, I am only really feeling better now, which is weeks after we both got ill on the 8 of January.

Saw the doctor today, I had sent an email to her on Friday but sadly she did not see it until today, when she came by at 12.15 to see me.

I have a nasty itchy rash on my face, neck and head, which has been driving me nuts, difficult not to scratch.

Somehow I managed to get through the weekend without scratching and doing any horrible damage to my face.

Took a huge amount of willpower to stop scratching, I am so pleased that I managed to resist the constant irritation.

Seeing the doctor today was good, she prescribed a cream for my face and a lotion for my head

According to our doctor I should notice a difference by this Wednesday and if I do not notice any, then Dagma told me to phone her and she will prescriber me a tablet.

I hope it works by Wednesday’



Sunday, January 30, 2011

Be Free To Lead The Lives We All Want To Live.

Philippe Halsman's Photograph of Salvador Dali and Surreal Motion.

Richie told me yesterday that he thought that I was very courageous, how he admired me for refusing to let MS stop me doing things and being involved.

He said that it was wonderful to see how I have refused to be left on the side lines because I can not move my body.

How I have created my own work, by writing a post for my blog everyday, something I love to do.

Since I have lost my mobility my writing has become extremely important for me, I am so glad that the internet is available.

Without the internet and the blog world I would be extremely isolated and would have nowhere to share my experiences, since MS has devasted my life and Richie’s life.

Being able to express myself and to be able to communicate with people around the world is incredibly important and good for me.

The fact that right now people from 139 countries are reading my blog is a wonderful thought, love looking from time to time at the countries on the list.

I marvel at the many countries which are on my list of countries, was very happy to see  Iran, Myanmar, Jordan, Ethiopia, Alland Islands, India, Saudi Arabia, Tunisia, Cook Islands and Egypt are some of the countries that are all reading my blog.

How wonderful that people from 139 countries read my blog it is truly wonderful, love the idea of communication with all those that read my blog.

Communication is so important for us all; to be in communication with each other and tell our stories is so important.

Feel very strongly that there is a big need for free communication between all people everywhere so we can support each other and be free to lead the lives we all want to live,

Saturday, January 29, 2011

A Good Friend.

Sunset-over the Arabian Sea.

Joseph Pulikotil's photo from Face Book. 

I enjoyed having a relaxing day yesterday and intend to enjoy a relaxing and pleasant weekend.

Next week I will have two appointments on Wednesday, I hope the one at 15.30 will result in Welzorg replacing the existing bar which attaches the table to my wheelchair.

Be great if the result of the appointment is immediate action and the problem will be swiftly and satisfactorily resolved.

Well I shall suspend thinking about that until next week; it is the weekend now which is best enjoyed here and now.

Which does not include next week until it happens and that will be next week Wednesday and all will be revealed then.

Looking forward to speaking to a very good friend on Skype tomorrow is excellent to speak to Jaya.

Miss seeing her now that she lives in Canada, so it will be good to talk to her tomorrow at 22.00.

It was dreadful when she moved back to Canada in 2003, a horrible shock but one we both had to accept and live with.

Which we do, but we both still miss Jaya’s regular visits to us, she would often visit us 3 x every year when she lived in England.

A Solution Maybe In Sight.

David Schofield.

BRITISH SURREALISM - Founded in 1936 the British Surrealist group leading figures were David Gascoyne, Paul Nash, Roland Penrose and Herbert Read. In 1947 the British Surrealist group combined with their French counterparts. Red Rag British surrealist artists include: Simon Garden, and David Schofiel

Today has been a relaxed day; Richie cut my hair and filed my finger nails, I felt great once it was all done.

Funny how I always hate the idea of getting my hair done, but once it is done I feel really great.

Ever since I started having my hair cut short if it gets longer than a couple of inches long I don’t feel good, I always feel somehow slowed down.

As soon as my hair is short again I feel quicker, I know there is no link apart from psychological.

Short hair makes me happy and a happy me has no obstacles to think things through, I guess it makes me mentally more agile.

Glad I sent a mail to let the relevant people know about the problem with the wheelchair table and received an e-mail suggesting an appointment.

This will be at 15.30 this coming Wednesday, then Annelies and Harm from Welzorg, can come and see the problem for themselves.

Annelies says she has found out that Welzorg used a different bar to attach the table top too, she has mailed a request to them that this be sorted out quickly.

She hopes that the bar can be easily changed for one which allows the table to be pulled out further and this can be done soon.

Soon means because it is Welzorg that it will drag on for several weeks, if I am very lucky it will get sorted by the middle of February, b who knows maybe I will get lucky.

Not keen on 15.30 Wednesday as I already have an appointment at 13.30 until 4.30 then an hours break before seeing Annelies and Harm but if it means a solution is in sight it is ok.

Friday, January 28, 2011

Let Down Again By Welzorg.

Flying Dutchman,2006.
George Grie.
Got let down yesterday by Welzorg, who did not bring the wheelchair back at 13.00, as they had promised and as they themselves had planned.

What annoyed me was the lack of communication from their side; they must have known quite early yesterday that they could not get the work done on time.

I learned during my working life that bad news is better communicated quickly to the customer, and then you explain how you will remedy the situation for them.

Yesterday I called but could not get through to Welzorg’s planning department, so then I mailed them and got no reply, finally phoned again and managed this time to speak to their planning department.

This was at 15.30, so two and a half hours, after the promised time of 13.00 I was told that I would have to do without my wheelchair until today.

What a disappointment and what an unprofessional and uncaring way for Welzorg, to treat their customers.

But sadly yesterday was just another example of how Welzorg treat their handicapped customers; they obviously do not bother to deliver any care whatsoever.

My wheelchair came back at 11.30 today, I wish I could say that they had done a good job but sadly they did not.

They put the steering mechanism into my Perspex wheelchair table alright but did not allow enough room for it being lifted up and folded down next to the wheelchair.

This happens regularly, everytime I need to use the Motomed or transfer in and out of the wheelchair.

Because they did not allow for it being lifted in front of my face it means that the Perspex skims my face and could hurt me each time it is moved.

Richie’s solution is to take the table off so as to not to hit me in he face or eyes, which is  not really a good long term solution as it is heavy and clumsy.

The Perspex table is designed to be slid away from the person in the wheelchair and folded down on the right side.

Not to be wrestled with by Richie and perhaps strain his back in the process, shame Welzorg did not get this simple bit of engineering that is key to the functionality of the Perspex table done well.

Wednesday, January 26, 2011

Another Good Appointment.

"Ridicule is Nothing to be Scared Of’’ 2006.
James Gobel.

Had another very good appointment at 13.00 today with Denis from Quattron and my Occupational Therapist Johanneke.

Denis measured me up for cushions, they will give me a stable position in bed, look forward to that, should get them in March.

It was only an appointment of 1 hour and 30 minutes, but I feel very tired now and so does Richie.

Be good to get these cushions, as I can not maintain a stable position in bed, and have spent ail afternoon collapsed. to the left.

This is very tiring and creates a lot of unnecessary stress which I do not need, not with all the stress of having Progressive MS.

Luckily Richie has found some more pillows and cushions and I am sitting alright now.which is brilliant after the last couple of hours of discomfort.

Off for a shower now and before that, maybe even a haircut, that would be pleasant, as my hair isa getting long on top.

See if Richie is feeling up to doing my hair tonight, as he seems to be getting a cold, hope I do not get it too.
Looking forward to a quiet relaxing evening now and a delicious dinner..

Tuesday, January 25, 2011

A Tiring Day.

Yves Tanguy.

What a very tiring day today has been, we were awake at 7.30 this morning, and Richie got me out of bed and into the shower between 08.15 and  08.30.

I was showered, dried and dressed by 09.30 and we were ready for our first appointment with an engineer from RTD Het Dorp who was going to remove the controls from the bed.

Then at 11.00 Beenhakker, the bed company would collect the old bed, once that was removed they would bring the new bed and put it in the bedroom.

Then RTD Het Dorp would attach their finger touch controls to the bed, sadly they were not here and at 11.00 Beenhakker were here but no RTD Het Dorp.

The men from Beenhakker were not amused, so I phoned and was told someone was on their way, they had been stuck in traffic and would arrive in 15 minutes.

Beenhakker were slightly mollified by the news and worked away to get their bit done before  RTD Het Dorp got here.

RTD Het Dorp arrived and took their controls off the bed and all was done quickly, then Beenhakker left with the old bed.

Everything was going well until Welzorg arrived two hours early for my wheelchair.

The delivery man left after talking to his planning department and agreed to return at 15.00 when the bed was done and I could go back to bed.

All went well and after doing my leg exercises I was back in bed very tired by 14.30, my wheelchair was collected at 15.00 .

So everything worked out well.

Monday, January 24, 2011

All Go For Two Days.


The Elephant Celebes.

Sadly our two friends, Gareth and Paul seem to have both got colds, so we will not be able to see them again this visit.

A real shame but I can not risk getting a cold, not when I am just recovering from influenza.

We are all very sad about this but nothing we can do about this.

I have a busy couple of days coming up, tomorrow my bed gets changed.

Same bed except I can sit right up, which allows me to sit better.           
Then once the people have put the control panel on the bed I can try it out.

Then my wheelchair gets collected art 15.00 so the steering can be put in the Perspex wheelchair table.

On Wednesday I will get cushions to help me maintain a stable position in bed.        

All go for two days.              

Sunday, January 23, 2011

An incredible breakthrough

Pablo Picasso, Three Musicians (1921),

Cyril is coming along very well; he seems to be coming out of his depression now, which is so very good to see.

Since last Saturday he has been able to play the tug game with Richie, which he became too scared to do.

First thing when Richie came back from the shop, with new toys for the dogs, Cyril was keen to play the tugging game.

But somehow he shocked himself by all the growling he was doing while holding onto the tug.

It worried him so much that he could not go on anymore; it also made him very nervous and worried about any contact.

In the evening he finally allowed Richie to stroke him ands enjoyed being cuddled, then Marleen demanded a game with her tug.

Cyril watched fascinated but very worried, when they were finished, he went over to the tug Marleen had discarded and sniffed it extensively.

Then he returned to his bed and crawled with a huge effort under his blanket, only to jump out again as soon as he was covered up.

He walked up to the tug, picked it up and walked straight up to Richie and thrust it at him and demanded a game.

An incredible breakthrough for a clever little dog, Cyril is a real sweet dog, we are looking forward to seeing him getting even fitter and happier  

Saturday, January 22, 2011

Happy Dogs.


I am going to take it very easy today; I am starting to get better slowly from this very nasty influenza.

But I have to be extra careful right now that I do not overdo things, which is so easily done.

I also have new lenses in my spectacles which need getting used to, over a few days so as not to tire my eyes.

Richie is also recovering; he has just taken the dogs to the park, which news was greeted with happy barking from the dogs.

Marleen and Cyril are getting very friendly and enjoy each others company very much, which is lovely to see.

Cyril seems to like it here, he is putting on weight and muscle, and he likes his new routine and us and especially Marleen’s company.

So glad we took Cyril and have given him a new life, one that he seems to shave needed desperately.

Good to see him slowly coming out of his depression and getting happy here with us.
We have our good friends from Wales, Gareth and Paul visiting us later, they are in Amsterdam for a quick visit, looking forward to seeing them later this evening.

Friday, January 21, 2011

A Very Cold January Friday..

Woman with a Guitar, 1913
Aristarkh Lentulav

We both really enjoyed the central heating working again yesterday and our lovely hot showers that we had.

I thoroughly enjoyed every moment and the warm towels, when Richie had fished showering me.

Really gorgeous to be dried off with warm towels, it just makes it so especially nice, an enjoyable experience.

Certainly made up for the discomfort of the day before when the heating suddenly was not] working, that was a huge shock for us both.

Glad the heating engineer came here as quickly as he did so yesterday as the weather was getting noticeably colder.

Today it is even colder as it was last night too, bloody freezing which was why it was such a bright sunny day, today is not so bright but Richie says that it is freezing cold outside.

Got woken up just before 8 this morning by someone from Welzorg trying to organise picking up my wheelchair.

The new steering mechanism has to be fitted into the middle of the Perspex work surface that fits over my electric wheelchair.

I am looking forward to this being done next week Tuesday/Wednesday, which can not happen quickly enough for me now.

Thursday, January 20, 2011

Another Dramatic Night.

 Country road in Provence by night

Vincent Van Gogh.

We had another dramatic evening and night last night, Richie had put the heating on before taking me into the shower room for a much needed shower.

Something was not quite right so he left me wrapped in a warm towel while he went to investigate what was happening.

It turned out to be the heating which was not working, so there was no heating and no warm water, it was quite an unpleasant surprise.

Richie washed me using a kettle  of hot water, it worked out alright but was nothing like as nice a a lovely hot shower.

Once in the fromt room, at 19.15 I called our landlordo’s emergency telephone number, they said a central heating engineer would call us and come out to mend our boiler.

At 21.40 and 22.40 I was told the same thing each time again with no result, we were still sitting in the cold.

Finally at 23.40 a call center operative told us that no one would be out that night, in fact they only came out if it were under freezing  or there was a flood.

Glad we finally got the truth and we could go to bed shame the three others had not been equally truthful.

Today I finally could speak to the heatiing engineers  call center at 11 this morning and heard someone woujld be here between 12  and 18, I asked for someone as soon as possible.

They said they were very busy and could not promise anything, and someone arrived at 11.45 and by 12 we were warm again.

I called them back to thank them for their quick response and good care and I was thanked profusely, apparently no one ever calls them back to thank them, I am so glad I did.

Wednesday, January 19, 2011

New Spectacles.

Alberto Giacometti.

I am starting to feel abit better today, glad that I am no longer on the antibiotics as they seem to really drain me of energy.

Today is going to be a short post as Richie is taking my glasses in right now so that the optician can put in the new lenses that I need to have.

Right now I am using my old glasses which are ok but not ideal, so I do not want to strain my eyes by too much close work.

Looking forward to getting my new glasses tomorrow afternoon at 16.00 when Richie can go and collect the updated spectacles, for me.

Will be good to get the updated glasses tomorrow afternoon, shame that I have to wait so long.

Last year the optician made my new spectacles the day after he came and measured my eyes for the new glasses.

I can hardly wait for my new glasses as already after just 30 minutes, the old ones are starting to bother me quite abit.

Richie has just gone down to the opticians now and will come back via the market and MyCom.

Once I have posted this I shall have to take it very easy and sadly that means no reading or writing for me until tomorrow afternoon.

Tuesday, January 18, 2011

Yesterday Turned Out To Be A Good.Day.

Woman With A Guitar. 1913.

Yesterday turned out to be a very good day indeed, certainly when compared with the days before it was so much better.

Feel so good that despite feeling worse than the day before I had a good appointment with Mathilde, my excellent physiotherapist.

I was so happy that I even managed to do the arm exercises using the weights around my wrists again.

After the session I could actually feel that my arm muscles were pumped up because of my hard work with the ½ kilo weights.

What made the day better was the fact that I no longer felt nauseous and was looking forward to dinner, having eaten bread & marmite during the day.

Last night I really enjoyed eating the lovely dinner Richie had made for us, despite him feeling so weak from this horrible influenza.

It was so good to be able to taste the food and to enjoy it all again and to be able to eat it all was also splendid.

Richie baked two apples stuffed with mincemeat, which is made with dried fruit, and mixed peel.

The baked apples were delicious a great way to finish off an extremely enjoyable meal, I liked every tasty mouthful.

Monday, January 17, 2011

Feeling Worse Today.

The Railway Crossing, 1919, oil on canvas.
Ferdinangd Leger.

Today I am feeling a touch worse than yesterday; mind you I did manage a reasonable Physiotherapy session at lunch time today.

It is all one step forward and two steps back at the moment and this, I think will be the situation until I am totally recovered from this horrid flu.

Strange to feel so much weaker than yesterday today, but I guess it is not odd at all as recovery from this strain of influenza is very difficult fro everyone.

Hope that I will feel like eating tonight, last night I was not so keen but did manage some mashed potatoes and a poached egg.

My big favourite at the moment is bread and marmite which I have always liked but especially right now.

Marmite and bread has been a great solution for me when I did not feel to eat anything, but had eat to in order to start getting better.

I am very happy that my session with Mathilde, my physiotherapist went so well today; it has given me a huge boost.

Which I really needed, especially today because I am abit weaker and do not want to get down and depressed too.

Difficult not to get down after such a heavy bout of influenza like the one that both Richie and I had, and which we are both slowly recovering from now.

Sunday, January 16, 2011

Getting Better Bit By Bit

Alexej von Jawlensky

Yesterday was a better day for me; finally my chest was not as congested as it has been since last Sunday.

I made the mistake of not sitting up to sleep on Sunday and Monday night which resulted in my chest totally filling up.

As it is extremely difficult for me to cough up anything, my chest became ripped to shreds by my desperate and prolonged coughing.  

It was a pleasure not to spend the day coughing yesterday; very nice indeed, the other nice thing was that I felt like eating yesterday.

Have been feeling nauseous all week and only was able to eat lentil soup, which is never a problem for me to eat.

On Friday I also could eat bread and marmite which was very nice, real comfort food, certainly for me, bread and marmite is easy to eat.

Last night Richie made fresh pasta which he served very simply with finely chopped garlic, leek and grated parmesan cheese with olive oil.

For the very first time this week I ate with an appetite and without feeling nauseous, which was a good feeling.

I even had an extra spoonful of pasta and after dinner I asked for a couple of strands of candied mango with chilli which was a delicious treat for me last night.

Looking forward to getting better bit by bit and day by day, I know that it may take as much as two months for me to recover fully.

Richie has just gone out with the dogs to the park, much to their delight; I look forward to their return and tales of the dog’s happy games together.


Saturday, January 15, 2011

Keeping My Spirits UP.

Surrealistic Namibia.

Feeling a tiny little bit better today, but very aware that I have alot of recovery yet to do, as I am still very weak.

At least my chest though still congested is nothing like as full and painful as at the beginning of the week.

Last night I even managed to sleep without sitting upright in bed to stop my chest getting full and triggering endless painful coughing, as it did on Monday and continued during Tuesday.

Really aware that I need to take it easy and not do too much not while I am so ill with this horrible flu.

Richie despite also being ill is looking after me wonderfully well, as he always does and comments and e-mails are keeping my spirits up. 

Friday, January 14, 2011

Wiped Out Today.

Tomaz Setowski.
Polish Artist born in 1961
Feeling extremely tired right now, which is because of this horrible flu and bronchitis and the medicines I have to take, such as antibiotics and codeine.

I am hoping that despite being so tired and aching all over that I am making progress now and will be getting better soon.

I know from mobile friends that this year’s flu is a heavy one to recover from, most seem to have been ill for a month or more.

One friend of ours here took two months to recover from this, so I will have to be very patient and take it very easy while I am so ill.

It feels really awful, it is pretty nasty, and the worse flu in years, the worse was in 2001 and also in 2006.

What I hate most about this time is how it affects my eyes, I am very wiped out right now so my eyes get tired and do not function well at all.

Think I will keep this brief today as I am really too ill and tired, seeing all the lovely mails and comments from friends was a wonderful boost.for Richie and me.

Wonderful to have such good friends, I really appreciate the support, friendship and love that I get from my lovely blog friends.

Thanks for all your visits to my blog and the wonderful comments you have been leaving, I love all the blog friends that I have made, you make my life better.


Thursday, January 13, 2011

Recovering Slowly At Home.

Dreaming with Open Eyes
The Vera, Silvia and Arturo Schwarz Collection of Dada and Surrealist Art from the Israel Museum.

It has been a very long and tiring week, being ill with a respiratory disease, made it very difficult for me to cough and clear my chest.

Tuesday was very worrying after I coughed for hours without shifting anything and it felt like my chest was being ripped to shreds.

Spat out a little bit of blood, which really worried us, Richie phoned the doctor who came right away.

The doctor had already visited us the day before and diagnosed us as having bronchitis and organised antibiotics from the chemists.

When she got here Tuesday afternoon, I had a temperature, the doctor thought that my bronchitis had become pneumonia and decided to send me to hospital,

But funnily enough by the time I got to the hospital and they took my temperature I no longer had fever.

I think that the prolonged coughing and being so congested caused the rise in the temperature, which peaked with the blood.

It looked more than it really was, a tiny bit of blood goes along way and it was very dramatic and scary.

Luckily it only happened the once, which was more than enough for me and for Richie, the OLVG hospital is a good, with excellent staff who checked me out thoroughly.

When they were satisfied that I was not in need of hospital care they let me go home, I felt like kissing the doctor who sent me home.

I am feeling extremely tired and weak now and look forward to this horrid infection getting better.

Wednesday, January 12, 2011

Wednesday Back Home

 I am happy to be back home, feeling very tired and ill.
 My chest is gurgling away.
Hope it gets better soon.
The strong antibiotics and codeine are knocking me out too.
Thanks for alot for all you lovely messaages.

Tuesday, January 11, 2011

Worrrying day!

Herrad had a bad night. She coughed up blood this afternoon so I called the doctor, the bronchitis had developed into pneumonia and she was sent to hospital.  After tests X rays and a million questions she was allowed home. A sinister shadow on the X ray will require more investigation so we will back next week. At the moment she is on good form and catching up with her favourite soap.
Thanks for the kind wishes and messages of support- they mean a lot to us.

Monday, January 10, 2011

Herrad is sick!

Herrad has got bronchitis and is too ill to use the computer tonight. She hopes to start blogging again in a few days. Just to let you know Cyril is still going very well.

Sunday, January 09, 2011

Cyril Is Getting Happier Everyday.

The Red Tower.
Giorgio de Chirico.

I meant to write about Cyril yesterday until the drama of the broken adaptor happened; by the time Richie came back I was pretty frazzled.

Glad I managed to maintain a calm exterior; inside I was anything but calm, inside I was extremely upset.

So pleased that I did not let rip and upset myself even more than I already was, there was no point at all in getting unnecessarily upset about something I could not influence in any way

I had wanted to post about Cyril, who is settling in very nicely, he seems to like us a lot already.

Following Richie everywhere, when I am in bed he is nearby, either under or next to my bed, he even dragged a dog blanket to the foot of my bed.

He loves getting up on my bed, in fact he jumped up three times not long after he got here on Wednesday.

Which was sweet, since then when he wants to be on my bed,  he stands looking at me and squeaking until Richie puts him up on my bed.

Cyril and Marleen are getting on well; they are starting to become buddies, Friday and yesterday they played together lots in the park.

They have also been running around in the house, and playing growling at each if the other comes near their special toy.

Both are very obviously enjoying the interaction with each other, so glad we have given Cyril a go.

He is a sweet, loving and very playful little dog, who really seems to like us, Marleen and his new routine.

Still can not believe that someone could have had this delightful little dog and not treated him well.

The long toenails indicate that he was never taken for a walk, certainly not for several years, he had Howard Hughes’s style toenails which were too long for him to walk well.

Amazing but seems there is a lot of this negligence mainly due to ignorance about what a dog needs.

On Thursday Cyril had this years injections, got chipped so if he gets lost we can find him, he had his nails clipped and Richie de-wormed and de-fleaed him at home.

So he is all set now to enjoy his new life with us, which seems to really agree with him, he is showing all the signs of getting happier everyday


Saturday, 8, January, 2011. Dramatic Saturday.

A very late post today because I was so tired after the drama of the laptop adaptor suddenly not working.

A very brief post today because I was so tired after the drama of the laptop adaptor suddenly not working.

What a horrible shock that was today, happened not long after I started up my laptop, one minute the battery was 100% and charging.

The next it was not charging and losing power rapidly, it went from 100% to 96% at top speed.

Richie tried all sorts only to eventually conclude that I needed a new adaptor, so there I was with no laptop and no contact with the internet, for what seemed liked forever and was just three hours.

Afterwards Richie said it was awful seeing me being so calm and stoical, he knew then that I was really upset.

I felt extremely upset contemplating having to wait until Tuesday until an ordered adaptor could be supplied by MyCom, who I phoned to see if they had an adaptor.

They suggested I come to their shop and try the universal adaptor first and if that did not work they could order one for me.

Richie went down with my laptop and did not return for more than a couple of hours, when he did he had an adaptor for me.

Brilliant, he had been ages waiting to be helped before finding out MyCom could not help me, well not until Tuesday, as they had to order an adaptor.

Richie paid for an adaptor, left the shop unhappy that I would not be connected until Tuesday, and then, he remembered a small computer shop up the road, and went there.

He got lucky when after much rummaging the man in the shop found an adaptor for me it was wonderful when Richie arrived back with it and I was once again connected.

Friday, January 07, 2011

Cyril Blossoming And Enjoying His Life.

Brughels Highway.
Gordon Cheung.

Wednesday night went well Cyril played until he nearly dropped, so when we wanted to sleep I suggested Richie put a blanket on the floor by his bed.

Thought wee Cyril would find that reassuring and I was right it worked in fact so well that very soon he hopped up on the bed with Richie.

Cyril curled up next to him and slept peacefully the whole night and never disturbed once which was brilliant

First thing in the morning I called our vet and made an appointment to have Cyril checked out, have his yearly injections and micro chipped and have his long toe nails clipped.

Richie took him and Marleen to the park  in the morning where he had a great time before coming home for a great breakfast.

We decided that we would have to feed him up as he was rather thin, we were also told by Rebecca that he had lost weight at the other place.

The vet checked him out and said that his heart and lungs sounded very good but that he was too thin for a dog of 5.

He said that his long nails and lack of enough muscles indicated he had not been walked for a very long time, maybe as much as several years.

We were advised to give him extra food and plenty of exercise in order to bulk him up and turn him into a fit and happy dog.

Something we are extremely happy to do, he is a very sweet, playful and loving chap, he has settled here very quickly.

Which is great looking forward to Cyril blossoming and enjoying his life.


Thursday, January 06, 2011

A New Start And A New Name.


Yesterday was a very exhausting day we were both pretty relieved, me especially once the catheter problems had been resolved.

Just after I posted yesterdays blog post and was settling down to a relaxed evening when the phone rang.

It was Rebecca, a woman who I had been in touch with just after Spike died who wanted to find a new home for her Jack Russell.

When I first got in touch with Rebecca, we were just too late as the dog had been placed taken on a trial placement.

We were both disappointed as he looked a nice little dog, so I sent Rebecca a mail asking her to let me know if it did not work out.

I did have an e- mail on Monday telling me the trial placement was not working and wondering whether we would still be interested in her dog.

Immediately mailed that we were and waited to hear more, on Tuesday evening Rebecca called to say she wanted to meet us.

She said she would call us later that evening but she did not, I mailed her the next day to find out what was happening, and if it was happening.

She mailed me that it was and she would be in touch, did not hear anything all day
then at 19.00 Rebecca called to arrange a meeting.

She suggested we meet at the station at 20.15 and if the dogs were ok with each other we could take him home.

Richie went down to the station to meet Rebecca and Jacky, the dogs got on ok so he came home at 21.00 with our new dog.

He was very excited to be here and started playing with the dog toys like he had never seen any before, it was a sweet sight

Several toys did get destroyed in the process, we decided after seeing him playing happily to rename him Cyril, a new start and a new name.


Wednesday, January 05, 2011

A Very Stressful Afternoon.

Reply To Red 1943.
Yves Tanguy.
My appointment at the hospital today, went well or so we thought at the time, it was my first supra pubic catheter change.

There was a painful moment, which passed quickly, so I thought the catheter was ok, until Richie found the reason hours after my appointment at 10.30.

At 14.30 I felt bad, very warm and getting warmer, Richie discovered there was not a drop of urine in my catheter bag, yet I had drunk quite abit.

Starting with my pills, before we left for the hospital, which I took with a pint of cool tea, and then when we came home I drank a lovely fruit shake and shortly after had another big drink of tea.

Richie investigated, at first he could find no obvious reason; there was no kink in the tube which would stop the flow.

There was also no blockage of sediment in the top of the catheter bag which can be dislodged normally by Richie squeezing the top of the bag.

Then Richie tried to rinse the catheter with a small bag of saline solution, which for the first time ever did not work, that worried us both.

Me, especially as I thought at that point I would burst into flames that is how hot I got, not being able to pee since 09.30.

Richie decided to hoist me into the shower chair to investigate further; he hoisted me out of the wheelchair and took the wheelchair away while he got the shower chair.

As I hung in the hoist there was a small flow of urine and more once I was in our shower room, not surprising, it could not go via the catheter so the urine found its own way.

Richie again tried to rinse the catheter through and again no luck, then he suggested taking the catheter out and rinsing it through before cleaning it with a sterile swab and reinserting.

Richie did this and immediately flushed out a small blood clot, instant relief for us both, especially for me as once the catheter was inserted the bag started to fill right away.
Shame that the nurses had not been rinsed through my catheter, after putting the new catheter in, then maybe the blood clot would have been noticed right away.

It has been a very stressful afternoon after getting back from the OLVG hospital at lunch time today, now everything is ok and my blog post is written I am going to relax and enjoy the evening.

Tuesday, January 04, 2011

I Will Get The Hang Of It Soon.

Ubu Imperator.
Max Ernst.

Today has been one of those days, started at 08.00 with my wheelchair being collected so the new steering could be installed.

Richie took his bike off for the gears to be mended and came back and not long after he hoisted me out of bed.

After Richie gave me a great shower and I was dressed, we were expecting Annelies advisor from the council and Harm from Welzorg to arrive.

Just as I was brushing my teeth the phone rang and it was Annelies telling me they would be a little late, they arrived an hour later.

When they got here with the wheelchair, Richie put me in it and I tried to steer with the steering right in front of me on a Perspex table attached to th wheelchair.

I found it very difficult to steer at first and was not keen at all about it, worried me for abit, could not work out how or why it felt so bad.

Then Richie pointed out that as there were no arm supports, I had to hold my shoulders, this was causing me a lot of stress and pain.

This will be solved by the steering mechanism being installed into my own Perspex wheelchair table with arm supports.

I will test it out tomorrow when I have to go to the hospital for the first catheter change, which is quite handy as it will give me an opportunity to test the steering.

This evening I am very tired after this afternoon and getting so upset by the new steering,hope I will get the hang of it soon, sure I will.

Monday, January 03, 2011

Enjoying The Moment.

 The Swing.
Jean-Honoré Fragonard

Today has been a classic dark cold January Monday; I am always surprised, every year that Christmas is always over so soon.

I do like those December days, when everything seems to slow down, and this Christmas gave me something else to think of which I really needed.

It meant that I did not keep thinking about Spike not being here anymore or focus too much about how my MS is progressing and what will happen next.

Difficult not to do so, really extremely difficult, I manage mostly not to dwell on what will happen next, but it is hard not to do so.

During the afternoon, today my fingers were dreadful, it was difficult to type, could not control my fingers at all, which was very frustrating and upsetting.

Funny how as my MS progresses and my handicap gets worse, I am not as upset as I was in 2007, by that I don’t mean I am calm and cool about it because I am neither.

I have never been cool in my life, though I am sure that on occasions I have kept calm, that is because to do anything else would have been more upsetting for me.

I have discovered that I already need new glasses; got these last April which is worrying as it is only nine months but at least I can do something about that and I will.

It is funny how precious life is to me these days, now that I can do so very little, how despite all that, I hope that I can have some more time, another year or two or even three  would be great..

Amazing as when I stopped being able to walk and my MS started to progress so quickly I could not imagine what life could be Iike being so handicapped and so dependant.

Well that life is right here and now and despite the pain, discomfort I am still engaged with life and enjoying the moment and loving being here with my darling Richie.

Sunday, January 02, 2011

Participating In The World.

Giorno Di Mercato, 1976

Expressionist Art.

Emilio Guiseppe Dossena.

The thing I love most about the internet is that it gives me the ability to communicate with people all over the planet.

That is really what the internet is all about, simple and straightforward communication and participation. 

Nothing compares I think to the pleasure of "talking" to people every single day around the world and sharing our stories and information.

I get an opportunity to explain my opinions, viewpoints and share information which may be helpful to others. 

My words are not changed by anyone, every post, with the occasional interesting article, has been written by me. 

My blog welcomes comments which lets visitors tell me what they think of my posts and share their stories.

In the 4 years since I started blogging I have made many friendships and received and given alot of support.

I get a lot of positive feedback and comments which make my life so much better and stops me being isolated.

When I got my MS diagnosis on 19 July 2006, I started blogging the next month to receive and share information about MS and the difficulties of becoming handicapped.

This was also in order to make sense of what was happening to me, but also to communicate with other people with MS and without MS.

I believe that blogging has expanded my horizons and I have no doubt that the internet has saved my life. 

It enables me to communicate with others around the world, even when I could not leave my bed for two years.

This was from August 2008, due to a pressure wound, this finally healed in August 2010 and I could sit in my wheelchair once again.

Since early 2009 I have been writing a blog post every single day, something that would have been unheard of 3 years ago. 

I communicate regularly with people I have never, and sadly, will never meet, except online. 

The internet has enabled me to communicate with others and be part of the world.

That is what the internet has done for me, it enables me to participate not just to consume, and despite my MS I can and do participate in the world.

It has helped me despite my severe disability caused by my MS to communicate, which has been and still is being a supportive and liberating experience for me.