Good Day Today.

Soleil couchant à Ivry (Sunset at Ivry.

Armand Gullaumin
http://en.wikipedia.org/wiki/Armand_Guillaumin

 The supra pubic catheter operation went very well, but so very tired afterwards and my eyes did not work well but are thankfully ok again today.

Really thought I was going blind, have heard about operations taking it out of you and causing MS to get worse but not my eyes, surely not now..

Glad I am not going blind, was a big shock last night when I suddenly all at once saw very little, had to use size 18 fonts to see anything, gave me a very bad shock.

Had a huge panic attack, Richie tried to reassure me that it was probably extreme exhaustion.

He was right; today my eyes are ok once again, which is brilliant, as I do not have to get too worried about my eyes right now.

The other good news is that Spike’s wheelchair will be here this week Thursday so hopefully Spike will be able to have a lot of fun with it.

The other good news is that the extra steering has been installed on the back of the wheelchair.

I am also going to get steering put right in the middle of my Perspex wheelchair table, so that I can use it to steer with both hands.

Which will fold away flat when I am not using and want to use my laptop or eat, think its good to use my hands for as long as possible.  

What A Day.

What a day today has been, horrible being jolted out of sleep this morning by Richie turning the light on at 07.30.

That was so cruel, wished I could curl up like a hedgehog and sleep until next February,

at the earliest.

07.30 was really horrible before I knew it I was being made very wet by Richie showering me, I slowly woke up properly.

Quite quickly I was in the front room blinking, still not totally awake, today the mobility bus came precisely on time, good driver, seen him before a few years ago, he remembered me too which was nice..

We were there, at the hospital,  just before time, the reception checked my hospital cardafter a ew minutes a nurse fetched us.

I was hoisted out of my wheelchair and put onto a bed, there Richie and a nurse took my clothes off and draped one of charming hospital gowns on me.

Do not remember quite how it happened but told the nurse I had drank a fruit shake at 07.00, she went to check with the doctor.

Who had to have a good think about this, drinking was allowed but only water or tea and fruit shake was not good.

There was nearly talk of it having the operation postponed until next week, then at 11.45 they cam e to take me through to surgery.

There was a pleasant group of people who shifted me off the bed onto another and attached blood pressure machine on right arm.

They attached three monitors on chest and this charming nurse chatted to me, on my request after I told her that what she was going to do scared me.

Well, the lovely woman smiled at me and had the infusion needle in the back of my hand before I realised it or even felt much, just a tiny prick, what an expert she was.

Then the anaesthetist hove into sight and I was surprised to hear that they had not hooked me up yet he laughed and said right now, I had to breathe from an oxygen mask did that twice and was gone.

Woke up at 13.00 a nurse came to see me right away and I was given a sip of water and I was on a saline drip.

After awhile a doctor came to see me and asked me my name, birth date, address and type of operation.

Shortly after that my bed was wheeled into a recovery room, where  a pleasant nurse got and fed me two slices of brown bread and butter and ham plus 2 mandarines to follow and many sips of water.

Not too long after, at 14.30 Richie arrived back, shortly after the drip bag was finished and a nurse took the infusion out of my left hand.

Then they dressed me and transferred me with a hoist into my wheelchair, a nurse phoned the mobility bus at 16.00, which arrived 30 minutes later and we were home at 16.45.  

It all went well the most painful was having the infusion taken off the back of my hand, now I feel a small vague something a slightly burny pain.

Not bad at all, the whole thing went better than I ever thought it would go, we are both relaxed and Spike’s walking has improved.

A good but tiring day, glad it is over.

    

A Quiet Day.

'

 
Paysage au bord du Lez, 1870, Minneapoli

Frédéric Bazille
http://en.wikipedia.org/wiki/Fr%C3%A9d%C3%A9ric_Bazille
 
Had a very relaxing and restful day today in an attempt to keep calm and not get too upset about my impending operation tomorrow.

It will take place at 11.30 tomorrow morning; have to be there at 10.30 in the morning so they can get me all ready for surgery.

Hope that the hour will pass by and they put me under real quickly and I come round well without any problems or complications.

Richie will go there with me for 10.30 and as soon as I get taken off by the pre op nurses he will leave and go home again and be with Spike and Marleen.

Then he will come back for 14.00 to see how I am doing and sit with me until I am ready to go home, hopefully at 16.00.

Oh well tomorrow late afternoon I will be back home and it will be all done and dusted, what a relief.

This morning just to remind me why the supra pubic catheter operation was needed my Foley catheter popped out.

Spike has been much brighter since Friday and today he has been walking quite a lot, he even went quietly into the front room and stole Marleen’s chew.

It looked so sweet we just let him get on with it was so cute seeing him sneaking through the bedroom limping back to his bed with his trophy.

   

    

Wheelchair For Spike.

Moy Mackay.
http://www.artroom59.co.uk/MoyMacKay.htm

I am feeling very tired today after the emotional day yesterday, it was such a long day because the control centre at Utrecht, caught fire.

Up to now there are still no trains, they hope to be back in business at 02.00 Sunday morning.

After installing computers and software, what huge good luck Richie had sitting near the man whose partner was driving from Amsterdam to get him.

 And for getting a lift to the end of the street next to our street, all because the man noticed Richie helping a disabled woman get into the train.

Now I am trying to get a dog wheelchair for Spike, just as the professor at the clinic suggested, she thought it would be good to give him a good time while he is here.

He is in no pain, he even managed to run into the front room when he heard Marleen squeak a toy and he is now chewing and defending his dog chew.

He is such a sweet dog, and it is lovely to see him still enjoying himself, have contacted three dog wheelchair places, one where you can hire them which would suit us well.

Love the idea of Spike having a good time while he can, sure he would enjoy it very much indeed.

Be real nice for him to get out to the Amsterdam woods and the parks and to be able to move freely and play with Marleen and us.

  

Friday's Sad News.

Claude Monet
http://en.wikipedia.org/wiki/Claude_Monet

Yesterday I was at hospital again, just to have my blood pressure taken, shame they could not have done this last Thursday.

As the whole day was dominated by getting the mobility bus there then having to wait for a quick visit while a nice woman measured my blood pressure.

Which was fine as I thought it would be, and then 45 minutes wait for the bus home pretty tired afterwards and worrying about Spike's MRI today.

Have had two friends here today, Anne and Anja good to have good friends like them to come round and organise food and drink for me.

Just had bad news from Richie at 16 pm, the MRI has shown that it’s not a hernia but a tumour on Spike's spine.

So I guess we have a very difficult decision to make next week and Richie will have to take our wee darling to the vet for the last time.

Very difficult decisions but ones we have to make, it’s the duty of good care we promised our little friends.

These are difficult decisions for us to make and they all depend on the quality of life for our little darling Spike.

That is the important question and the only one that is valid. I guess and not what we want.

As what we want is Spike fit and well, running around happily and always there by my bed or wheelchair looking at me and wanting a game.

Crying now, finally only took three hours since Richie phoned at 16.00, and to add to the misery he is stuck in Utrecht because there has been a fire on a train so there are no trains tonight.

He has been promised a lift by another passenger whose wife is driving to pick him up so he will be home sometime just very late, my poor darling and poor Spike.

It is 19.00 now hope my darlings are back soon.

They were back at 20.00, what a relief.

Brilliant Gig Last Night At Paradiso.

 




Druids Bringing In The Mistletoe.

Edward Atkinson Hornel.

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

We had a brilliant time at The Drive By Truckers gig in Paradiso last night, was so good to be there again.

http://en.wikipedia.org/wiki/Paradiso_%28Amsterdam%29

Enjoyed the drive there in the mobility bus tremendously, was good to drive down streets that I had not seen for two years, since I have been in bed.

Realised once again what a lovely city Amsterdam is, all the lights were on and in the centre the trees were illuminated which is very pretty to see at this time of year..

It has been five years since we went to a concert, so was excellent to be there last night, really enjoyed myself and so did Richie.

It went by so quickly, they played a nice long set from 20.30 to 22.15, then they went away for a few minutes and were back to do an encore at 22.20.

Sadly we had to go then, as the mobility bus had arrived and was waiting for us outside, shame as Richie thought they would play a favourite track.

After managing to get out of the tricky doors, helped by two nice men holding them open we managed the tight and scary turn at the top of the steps and the even tighter turn into the lift.

Once outside we were met by another friendly mobility bus driver who soon got us into the bus and whisked us home.  

Was pretty wonderful to be there, had a huge grin on my face the whole time even when we were back home at 22.45.

Drive By Truckers.

Strange Day.

 

Danny Sillada.

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

Strange day today, we are both very spaced out because of lack of sleep last night, poor Spike had a terrible night last night.

By the look of his urine this morning, which is very cloudy with a tiny bit of blood in it, he has a bladder infection.

As I get them so often we are very alert for the signs of one happening, poor little Spike for getting one so very quickly.

But no wonder he could not settle last night, it was like he was in great discomfort, shame as

he was doing so well.

The anti inflammatory drugs and the painkillers were working so well that he was standing and walking yesterday.

But this infection has knocked him right back down today, and no wonder they do the same for me too.

Organised immediate antibiotics from our own vet, Richie just gone to get them now so hopefully the effect is immediate and Spike will get some relief tonight.

Friday Richie has to take him for an MRI and next week he will have his operation, so two next week mine on Monday, Spike next week Friday.

Richie will have two post operations to look after, hopefully both will be helpful for Spike and I, hope it will restore Spike and take away my catheter worries.       

Feeling Optimistic

 
 Marcus Antonius Jansen

American expressive visionary painter.

Trying and succeeding in keeping calm, this afternoon after 15.00 we shall hear whether the professor at the Vetertinary clinic can get enough information from the June MRI.

If she can then she will not need a new one done, otherwise the new one will happen this Friday.

When the professor has the information she needs, to be able to decide how to proceed, I won’t do too much second guessing but expect her to say she will operate soon.

It is lovely to see how much better Spike is doing since getting the painkillers and catheter, he is much more himself which is good to see.

He is back to being very vocal, when Richie takes Marleen for a run Spike sits and cries on his bed.

Cries until he hears them at the front door then falls silent and looks likely he has been quiet the whole time they were gone.

Which is not true as each time I get treated to a concert of cries, whimpers and short sharp barks and some little howls.

Hope that the operation will be done soon so the healing process can start, hopefully if done soon he will be able to enjoy walking and running again soon.

Be good to see him being himself again and able to bustle around in the apartment and enjoy a good run around in the park with Marleen.

Feeling optimistic this will happen or Spike very soon now.

Beware Of People Fishing For Your Details.

  

Salvador Dali.

http://en.wikipedia.org/wiki/Salvador_Dal%C3%AD

I Got sent a mail by a friend, with a link to a page, about being able to work from home and being able to easily earn 5,000 to 7,000 per month.

Did not like it at all, it rang alarm bells, it seemed gto be a dodgy mail, there are no details of the work just of the money you could earn.

 

No details of the website and what they do, just a heart warming story about someone called Natasha Reynolds who lived in Amsterdam with a couple of young children,  she supposedly had a blog.

Which I could not find, did find a Natasha Reynolds who lives in Canada and went on a fishing trip, but no mention of her working from home and earning well.

Basically it is just a link to fill in their form, which give them all your details including your bank account, for your ‘’wages’’.

This is as far as I am concerned, just another fishing trip to be avoided at all costs, I had one recently just when I was thinking how much I still wished I could work.

The next day got a mail offering me 5,000 per month, I  saw right away that the spelling and grammar were bad plus they were using a hotmail address.

Still it got to me especially because I would love to work even now, even in my condition, think a lot of people would love to work too.

Hate people trying to use people’s vulnerabilities, work is always a good lure for us all.

Be very careful there are alot of these fake jobs around especially now times are hard.

So beware of strangers offering you so much, for your details, do not give them to any one not ever.

Sadly I could not add the link because when I responded to the original mail. my mail program would not send it and then froze and my virus checker deleted the mail.

Tired But Happy.

 
Ben Haverman.
Dutch artist.
1942-

I am feeling very tired today and so is Richie after the week we have had, yesterday was very stressful.

For both Richie and for Spike undergoing hours of examination and for myself waiting patiently at home for them to come home.

What a relief to get Richie’s call that they were on the way home and he had good news about Spike for me.

It has been very worrying watching Spike walking getting worse and then stopping practically altogether on Thursday.

Thinking it might be a neurological problem only increased our anxiety considerably; Spike seemed to having spasms, almost thought it could be MS or Parkinson’s.

Hearing it was a hernia seemed wonderful news compared to the other things had worried it could be.

When Richie got home and told me the diagnosis it felt like the best news ever, funny that as a hernia means an operation.

Better that then the news that there was nothing they could do for our lovely Spike and the vet would have had to put him to sleep yesterday.

We are both happy that something can be done and Spike’s problem will be dealt with very soon.

.

These, Are Really Happy Days

Capturer.

Valentina Kropivnitskaia.   

(Russian, 1924-2008)

Difficult sitting here knowing that right now Richie is in the Veterinary clinic with Spike, the appointment is at 10.15,I t is now 10.24.

So hope that the clinic has a way of treating him, so afraid they will not be able to treat him, would be great if they could as Spike is having such a hard time.

Not nice when your legs do not work anymore, he has got dramatically worse since Wednesday.

Wednesday was a top day Spike hobbled around at great speed playing with his toys, loved dinner and enjoyed himself tremendously in the park, Richie told me when they came back.

Since yesterday Spike has got worse can hardly stand up, because of that could not use the dog toilet, which is not a good sign.

The sun is starting to shine which is lovely, need something today when I am sitting here and wondering what is happening right now in Utrecht.

The sun did not last long, but was very pretty while it lasted, now it looks like heaps of rain, with the odd flash of sun.

Hope it does not happen until later after Richie and Spike are back from Utrecht, have to try and relax, not think of what is happening with Spike.

A friend Anne is here to visit and distract me from what is happening with Spike and Richie; it was nice to see her.

She brought me a tasty bread roll filled with spicy, fluffy salt fish from Surima, a Suriname sandwich shop; it had exactly the right amount of hot pepper sauce on it, yummy,

At 11.30 Anne had to leave, Cecile got here just before she left, and then Cecile visited with me until Richie arrived home at 15.15.

He had good news, Spike can be helped, seems he has a hernia which must have caused him a lot of pain and stopped his back legs functioning, it also stopped him peeing.

As soon as the doctor inserted the catheter a lot of urine was extracted which according to Richie gave Spike huge relief.

He has a catheter for now, which has to be drained several times a day, and painkiller and anti inflammatory tablets.

The doctor will evaluate the existing MRI and may need another one done next Friday, we will hear on Monday whether it is necessary or not.

Seems likely that Spike will need an operation to sort him out, once the recovery period is over he should be able to run and play again like he enjoys so much.

What great news especially as I was not expected it, it has been a dtressful day waiting to hear.

Now we are both happy, our Spike can be helped, he looks and sounds like Spike once again, these are really happy days              

No Hesitations Or Worries.

Experience.

Robert Lohman.
Cubist Male Figure Oil on Canvas

Robert Lohman (American, 1919-2001) 

Well today Stadsmobiel worked well, the bus was here at 09.55 and the driver came up and helped me into the lift and into the van.

When we got to the OLVG hospital, in the centre of Amsterdam, on the Prinsengracht, Richie deactivated the motor and pushed the wheelchair backwards onto the lift ramp, once on it he reactivated it again.

This worked very well and I got off again with no problems which was good, no better than that, it was brilliant,

Reversing n the mobility bus onto the lift ramp is scary and had me very worried for weeks now, was such a relief that Richie could sort this out for me so easily.

Really gave me a much needed boost, the appointment went very well, nice doctor, she explained everything to me.

The op has been rescheduled for 22 November at 11.00 and it has been decided because of my pain and spasms, Dr.Hovius wants to give me a total anaesthetic.

This is apparently not such a heavy one as I will be brought round quite quickly and after two hours of recovery time I can go home again.

Feel pretty reassured by the appointment with the urologist, it was extremely useful, she told me that it was a routine operation which took 20 minutes.

What a relief to have finally had the appointment felt like a huge weight rolled off my shoulders today.

Woke up calm today, I have been worried about the appointment and the whole procedure and today it was going to happen so no need for me to worry anymore.

This worked well and I was very relaxed and ready to see the doctor, onwards and upwards without any hesitations or worries.  

As Much Fun As Possible.

 
Abstract Digital Art.

.


Spike.

Did not sleep well last night did too much thinking, about Spike every time I heard him moving around with difficulty.

But also thought about nice things like talking to Richie about our next party, after the party on September 17, he had suggested we have one on the 19 December, our 9 wedding anniversary.

Think it is a great idea, we still have 9 bottles of proseccio from September, plenty enough for December.

Will ask the same people to join us again this time, be good fun for me organising the party, getting everyone to bring something delicious to share.

September was great fun everyone enjoyed themselves enormously; it was nice to have a group of friends here for a change.

Years ago I used to organise a get together of a group of friends every Saturday, everyone brought something to eat and drink and we had a pleasant time together.

Generally I would make a big lasagne or quiches and rely on other people bringing salads, bread and deserts and wine or beer.

When I lived in Reading, England we always had such bring a plate parties, a few of us would also eat together every week, always at a different house so everyone took a turn cooking.  

Additionally I usually had a few friends over for dinner once a week, really missed all of that when I was here first, and so decided to start the ‘tradition’ here.

That was also when I was the chef at a vegetarian café, enjoyed the job very much, loved thinking up the new menus, a new dish of the day, soup and salad daily.

Miss being able to cook these days, it has been a long time since I cooked anything; the last thing was a curry in early 2006 and scrambled eggs in early 2007.

Being disabled has robbed me of so much in the last 5 years, feel that I need to do everything possible to have as much fun as I can while I can.

Looking Forward To Happy Outings.

Nocturne in Black and Gold – The Falling Rocket

James Abbot McNeil Whistler.

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

Some good news today, an appointment has been planned for 23 November at 10.00 am with the Amsterdam council mobility advisor, Welzorg and Permobile.

The alternative steering for the back of the wheelchair has been ordered and should be installed then, was overjoyed to get this information this afternoon.

We will also discuss other methods for me to steer, which is good news, be absolutely brilliant if the steering is really put on the back of the wheelchair on the 23.

This means we just have two weeks to wait, much better than 2 to three months which we anticipated, this is indeed excellent news.

Sadly my advisor Annalies won’t be there, she is on holiday, not too happy that her colleague will be here instead.

When I was getting my first wheelchair, she advised a big, heavy one saying she liked it, which was weird seeing as she could walk and I could not.

The wheelchair was too big and heavy for me, yet this is what I got, sadly could never use it,  just too heavy and clumsy for me.

Bought my own wheelchair with help from friends, a light, nippy wheelchair, a Wolturnus, worth every penny.

As that is now three years ago  so I will give her the benefit of the doubt and trust that any decisions made about alternative methods of steering for me will be made with my best interests in mind.

As she is a well trained occupational therapist who specialises in advising people with progressive diseases, she will, I am sure look for the best option to suit my needs.

Feel brighter today, Spike too is better today, much brighter especially after Richie baked the dogs some delicious crunchy oat/peanut dog biscuits.

What cheered me up too was a YouTube clip of Trini music which was put up on Face Book by Sita, a Trini blog friend, really needed that right then, it gave me such a boost.

Feeling optimistic now, since the news of the 23 November appointment, that soon we will be out and about again, I can’t wait for that to happen.

Will do my very best to stay patient and looking forward to many happy outings soon, be good fun.

Take My Inspiration From Our Dogs.

The Temptation by Danny Sillada.


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

Yesterday I took a 2 mg diazepam 30 minutes before Richie transferred me to the wheelchair from the shower chair.

After organising my posture and making the necessary adjustments, Richie sprayed me with perfume and put in my choice of earrings.

Then I tried to hold the joystick and turn the wheelchair around and leave the room, and it worked.

Was a most glorious feeling to feel myself steering the wheelchair with no problems into the front room.

Happy days indeed, felt very good about that, very good indeed, so today will try without the diazepam and see what that is like.

If it is too difficult then I may have to take 2 mg of diazepam to facilitate my steering, certainly will take it this Thursday, for the hospital appointment, when I have to get into the lift and down to the mobility bus and into the bus.

Also on the 17 th to the Drive by Truckers gig, I sent them a mail telling them I would be at their concert and my worries that being in a wheelchair I might not see them well.

Got a lovely response from Jenn, the bass player, who gave me the name of their tour manager and sound man, for in case we needed assistance at the gig to see them properly.

Really nice of her to respond am very much looking forward to the gig next week Wednesday, the one bus trip I am looking forward to 100%.

The one good thing that is happening, after the sadness of Richie’s father dying weekend before last.

Sadly Spike’s condition is getting worse, we hope the clinic in Utrecht can help if not we will have to make a difficult decision; just thinking about it has made us both cry alot today.

We can’t leave our little chum to deteriorate, especially if there is no prospect of a recovery and only of him getting worse and being in pain.

So we will have to let the vet put our little friend to sleep, that will be very difficult for us both and for Marleen too who will miss her little pack mate.

Will miss him so much, he is such a lovely little fellow, he has been such a lovely playmate, and m ‘big’ protector, our Spike.

Also the progression of my MS is not good news right now and it is a cold and grey November day too.

For now we are going to stay hopeful and optimistic and enjoy Spike’s company and face up to whatever needs facing when it actually happens.

Going to take my inspiration from our dogs and live for the moment, the here and now.

A Cumbersome System.

Karin Kuhlmann.
http://www.karinkuhlmann.de/DigitalWorlds/bios/bios.html

On Monday last week my occupational therapist was here to discuss various things, was a shocker to discover what usually took me a moment to get from our bedroom to the front room in the electric wheelchair took 5 minutes.

Shocked us all, was so relieved when it went ok for the rest of the week that is until yesterday when it went even worse than Monday.

The next lot of burocratic red tape is starting to happen now, as my right arm is no longer functioning well so I need an alternative steering system installed at the back of the wheelchair so Richie can steer.

Then I can get out because since Monday my steering is so bad it is almost gone, somehow

will have to be able to steer out of the apartment.

 And in and out of the narrow lift and into the mobility bus this coming Thursday for the hospital appointment, then 17 November to go to the Drive b y Truckers gig in Paradiso and 26 November for the operation.

Shall take a diazepam later and see if it relaxes my muscles and allows me to steer better, hope it does as this situation is getting to me now and I do not want it to fuck my head.

Expect to have the usual long wait of two months + before anything happens and this is after many appointments where they decide what I need.

So could be January before I have steering at back of wheelchair which I really need now, otherwise I will be stuck indoors which is not a nice prospect at all.

Really hate how long the burocracy takes here to get anything done, wish I was well off or would win the lottery so we could buy what I need and not have to wait months every time to get an appliance.

There should be a fast track system for people with progressive diseases, who need that because by the time something has been through the usual procedure it is three months later.

The procedure is usually two to three meetings, then a decision then a meeting with the supplier and then the application goes to the council who have to say ok first and that always takes two months and only then can it be ordered.

A cumbersome system which is not geared up for the recipients of help and no good for people with progressive diseases whose condition, like mine does not remain static.

A Special Time.

 
Joie de Vivre.

Susan Vrotsos.
Abstract expressionist artist from Winchester, MA, USA.

Difficult to describe all the sensations that I have been experiencing moving around my body just recently.

Feels like my body is burning up, other times everything tenses up so much that I get stuck in one position.

Feels liked my skin is being stretched to its limit, almost feels sometimes as if my skin were being pulled off.

Still have the  tingly electric shocks and my arms are very stiff,  heavy and clumsy and painful, feels often as if I am being hit with a heavy hammer up and down my arms

Last night lay here trying to sleep feeling like my wrists were being smashed until they felt broken and my arms hit repeatedly.

Added to that the feeling of electric shocks and the burning sensation made it very difficult to drift off.

 Have to be careful when yawning or coughing, then my body goes totally rigid and often can’t stretch my arms out afterwards without Richie giving my arms a massage.

So that he can gently stretch my arms out while holding my fingers to stop them clenching into fists and digging my finger nails into the palms of my hand and massaging the top of my arms.

Try to ignore all the sensations but that is very difficult to do, as they have become so intense, though sometimes it helps to put things into perspective.

They are all real feelings and sensations caused by the nerves not being able to transmit properly, not too much comfort when the pain of it all becomes too intense.

Although it does help my mind to think it is just the jumbled, jangled MS sensations and not reality, but it still hurts all the same.

Weird though to have so many painful feelings that are not really real just sensations triggered by garbled nerve messages.

Now that my hands and arms are no longer functioning well I have become more aware of my MS moving to another level.

Hope that I will be able to cope with all the things this MS is throwing at me, guess at some point I won’t be able to blog anymore, hope that does not happen for sometime yet.

Despite all the pain, discomfort, anxiety, and panic this is a special time, blogging has helped me enormously, being able to write about what is happening to me is important.

Meeting so many lovely supportive people and becoming friends has helped me stay strong and sharing this time with my darling Richie is very special for both of us.

Typical procrastinating pen pushing burocracy!

 

Kathe Kollwitz.

http://en.wikipedia.org/wiki/K%C3%A4the_Kollwitzhttp://en.wikipedia.org/wiki/K%C3%A4the_Kollwitz

Yesterday was a strange day after the appointment fell through because of the mobility bus leaving without us.

Suddenly everything went flat, we were so up and ready to go to the important hospital appointment, once that was taken away so cruelly we felt deflated.

Shame that happened, especially after all of Richie’s good work, getting me up showered and dressed ready for 09.30.

I put in an immediate formal complaint and was informed right away that the driver was in the right, and we were in the wrong as we should have been ready 15 minutes before the time booked.

I was told that it was the rule to be ready 15 minutes before the booked pick up time, when I asked if I could see the rules, Rinie Isselman, from Stadsmobiel sent me the link to their website.

Went there but could not find much in the way of information and certainly no rules, e-mailed her asking where the rules were.

Rinie promised to send me the rules, my comment was that was nice of her but surely if there were rules they should be on the website for all to see, not hidden away secretly,did not get any response.

           

The amount of times I have had to wait for this bus in the past was too many to mention, been totally forgotten for hours outside in freezing weather.

But whatever they, the Stadsmobiel, are never in the wrong despite keeping people waiting for hour’s grrr!

Here is there e-mail address:

Stadsmobiel: klantenservicesmb@gvb.nl

Felt very tired and washed out yesterday afternoon and evening and noticed how badly my hands and arms were functioning well at all.

So depressing thinking about my arms and hands, hate the feeling of paralysis which is slowly creeping up my arms.

Horrible to feel this happening and so soon but not surprised that is MS, typically I am to get the Perspex table for the wheelchair next week just when I am starting to lose my hand and arm functions.

Typical procrastinating pen pushing burocracy!

Better To Stay Cool.

Landscape Near Dresden 1910

Erich Heckel.

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

Today was not the day I had been expecting, Richie got me up very early and had me showered and dressed and in the wheelchair by 09.10.

The mobility bus phoned at 09.13 that he was on his way; he arrived at 09.25 as Richie was struggling to get my fleece jacket, winter jacket and leg protector/leg bag on, we said we will be downstairs in 5 minutes..

Just as he had done it, the mobility bus drove off at 09.30 and without calling us otherwise I would have said we were just coming down.

Tried to organise another mobility bus but they could only send one at 10.30 which was the time of my appointment.

So it stopped there for today, now I have a new hospital appointment for next week Thursday at 11 am.

We have both been a touch shattered by this morning’s mobility bus drama, hopefully next week I will actually get there.

Feel very tired now and so is Richie, expect it was all the adrenaline for the appointment this morning.

One good thing was that despite the shock and disappointment of this morning I did not get angry and waste any energy on getting upset.

Much better to do what I did which was not let it get to me too much and drain my energy, it was better to keep cool.                    

Enjoying All The Moments.

 

Aleksander Gikerymiski.

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

Slept quite quickly and soundly until early this morning when I woke up very suddenly feeling hot, like my entire body was on fire.

An unpleasant sensation which I thought at first might be the catheter coming out or changing position, until I realised the feeling was moving around my body.

Did not feel that there had been or there was any catheter movement at all so decided it was ‘just’ the MS.

Putting my arms outside the duvet soon stopped me feeling so hot, luckily that happened pretty fast and I cooled down enough for me to wrestle my arms quickly  back under the duvet.

It did not stop the feeling of flames flickering over my body, but I just decided to ignore this especially as there was nothing I can do about it.  

Lay here thinking about tomorrow and my first hospital appointment, felt myself getting all worked up and upset.

Stopped that at once, said to myself that there was no point in getting upset as it was going to happen whatever I did.

Getting worked up would only upset me and make things difficult, when what I need to do is make things easier.

Deciding to stop being upset was very good, typical of me, always do this get upset and worried until right before the moment itself when I just accept reality and get on with it.                                  

No point fighting something that I need now in order to make my life less stressful, life is too short to waste it.

Not when I want to be here and now, enjoying all the moments that I can and I will.  

One Door Shuts And Another One Opens.

Zdzislaw Beksinski.

http://en.wikipedia.org/wiki/Zdzis%C5%82aw_Beksi%C5%84ski

Discovering how weak my right hand and arm were yesterday was a huge shock for me, guess also for Richie and even for Johanneke, my occupational therapist.

She arrived just before I was quite ready and was sitting in the front room waiting for me to roll in there.

So as soon as I was ready I wanted to get out there quickly, this is when I noticed that my right hand and arm were not functioning well.

It took me several minutes to turn the wheelchair around, before I could laboriously get out of the bedroom and through to the front room.

Not only was my arm and hand not doing what I wanted but they were also very painful and it was scary too.

My right arm has suddenly and very quickly become very weak, was shattering to notice how little strength my right hand and arm have now.

Johanneke told me about a variety of adaptations that can be made to the wheelchair so I can stay mobile.

Apparently there are several ways for me to steer the chair, two of these are:

Chin operated.

By blowing through a tube.

And it can be adapted so that Richie can control and steer the wheelchair from the back, not my preference but it would mean that I can go outside.

The good thing is that it will mean that I will get out more than I do now and that is what I shall concentrate on now.

One door shuts and another opens, there is always a silver lining no matter how bad the situation is.

Grey, Cold First Of November

 


Wassily Kandinsky.

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

Here it is November 1, it is a grey day, no sun and no blue sky, and on BBC they were getting excited about the temperature being nearly 15 c.

Wow nearly 15 c that is almost balmy summer weather, well in my dreams it is but here in reality it is a cold and grey dark day.

I said Rabbit, Rabbit as soon as I was awake and conscious because it is the first of the month; something my father taught me when I was about three years old.

Did not realise until Richie told me that it was a remnant of the old religion of worshipping Goddess Oestre.

http://www.nobeliefs.com/easter.htm

‘’ Modern-day Easter is derived from two ancient traditions: one Judeo-Christian and the other Pagan. Both Christians and Pagans have celebrated death and resurrection themes following the Spring Equinox for millennia. Most religious historians believe that many elements of the Christian observance of Easter were derived from earlier Pagan celebrations.

The equinox occurs each year on March 20, 21 or 22. Both Neopagans and Christians continue to celebrate religious rituals linked to the equinox. Wiccans and other Neopagans usually hold their celebrations on the day or eve of the equinox. Western Christians celebrate Easter on the Sunday on or after the full moon that follows the nominal date of the Equinox -- MAR-21. The Eastern Orthodox churches follow a different calculation; their Easter celebration is often many weeks after the date selected by the Western churches.’’

When I woke this morning my arms were folded tightly over my chest, took me what seemed to be ages to unfold my arms and get them on top of the duvet.

Noticing that my arms are getting stiffer and less easy to use, feels very heavy and clumsy, hope that keeping up with my exercises will extend the length of time that I can move them. 

It is not easy to steer my chair these days but I do my best and will keep doing my best to stay mobile for as long as possible.

When I can no longer steer the wheelchair then I will get an electric wheelchair Richie can steer, one way or another I intend to be mobile and go outside.