Hope For Less Worry Soon.

Scatterlings.

Jacquelyn Berl.
http://jacquelynberl.blogspot.com/

Since Friday I have been taking the Urispas tablets, they are to stop the bladder having spasms.

It seems to be working already to a certain extent, but of course it is early days, have only taken them now for three days, believe it is about two weeks before it works well.

My op is on the 26 November, which will come around quickly enough now; I know that the op to have the SP catheter is the only way to go,

Sadly it is the only way to go, seems a weird idea to have an op to make life easier that gives me a perpetual open wound that needs special care and attention.

But it is the only other option, seeing as I have had the Foley since August 2007, I now need to move no to the SP catheter.

Know that I have had the Foley for long enough now so have to make the switch, am actually in lots of ways looking forward to it being done.

Just wish that at night at the very moment I put my head down on the pillow and am just about to drift off and then each time, I think about the SP op and am wide awake right away.

Shame that there are no other options, wish there were research as to whether there are better ways to facilitate urination.

Another way so that there is not an open wound which has to be managed carefully and kept clean and sterile at all times.

Years ago I worked briefly at The Dairy Research Institute in Reading, where my job was to look after calves that had canulas with lids, in their stomachs so fluid could be taken out for investigation.

It was not pleasant looking after these animals; the whole project was to find out if calves could live on artificial milk so that cow’s milk would be for human consumption only.

I know it is not the same but keep seeing the unhealed calves flesh around the canula.

And the stomach fluids that would ooze out and dry rock solid which I had to clean off without causing too much pain.

Not a nice job hurting animals and killing them off once they were between 6 to 10 months and getting a new batch to feed artificial milk to.

I left after 6 months as I would not believe the official line that animals have no feelings and could no long bear hurting them daily.

That was 1974 and here it is 36 years later I too will have an open wound in my lower stomach.

All I hope is that it will be less worry than the Foley catheter is right now.   

Spike Is Over The Moon.

 
George Grie.

Lost Beauty of Disharmony
The perception of other cultures advanced by Surrealism and its various offshoots may be separated into an aestheticized, romantic and highly idealized vision on the one hand, and an anti-idealist, transgressive, materialist notion on the other - what Krauss terms a ‘soft’ and a ‘hard’ primitivism respectively (Krauss 1984). Whilst the way in which the Surrealists used primitive artefacts and ideas can be seen to be subversive in its intentions, the work of the two dissidents, Leiris and Bataille, take this radicalism one step further by grounding it in a more rigorously informed perception of non-Western culture. If Leiris’s writing can be seen as a subversion of traditional anthropological theory, Bataille’s work subverts all methods of sociological analysis. The two may be characterized by an essential reflexivity - by a refusal to confine the study of anthropology to non-Western or exotic culture: instead both ‘ethnograph’ their own cultural realities. In so doing, any distinction between sociology (as the study of industrialized societies) and anthropology (as the study of non-Western societies) dissolves.
George Grie,  October 1998

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

Started taking Urispas tablets 3 x a day, they have been prescribed by my doctor; they are anti bladder spasms medicine.

They seem to be working quite well already, as I had a peaceful night’s sleep last night, luckily no late night early morning chatters keeping us awake all night.

Good to fall asleep with very little problems, really pleasant, also very good that I man aged to fall asleep again twice when I woke up a couple of times.

Spike was waiting right by my bed for his 5 minutes morning cuddle up on the bed with me, he is so sweet the way he hangs about waiting for us to finish doing arm and leg exercises.

As soon as we are finished Spike starts squeaking and trying to get up on the bed, once he is up on the bed he cuddles up and wants me to tickle his chest and under his right ear.

After a moment or two he starts to lick my hands very seriously after 5 to ten minutes he wants to get off again and do dog things like playing with his toys.

Just had the letter from the Animal Clinic with confirmation of the appointment on Friday, 12 October.

A friend, Cecile will come around on the 12^th at 11.00 and 12.00 to give me a drink and a sandwich, will organise someone else to come by at 09.00 to give me a drink and some fruit.

Good to organise a back up in case someone can’t make it, the appointment is for three hours, plus travelling time, expect them home around 15.00.

Well getting up now, the sun is trying to shine now which makes a very pleasant change, shall enjoy the afternoon, the dogs have new toys today.

They are both running around happily shaking and squeaking their new, Spike is over the moon, running around happily with Marleen.     

Keeping Us Happy And Amused.

Spike is not well it’s very worrying, his walking has been getting worse, he has lost control of his back legs, but despite this he is still a happy dog.

He has many cheerful and playful moments, which is lovely to see, also how well he copes with his wobbly legs.

We got quite worried that we won't have our beautiful little friend for too much longer, so Richie took him to the vets.

Who thought it could be one of two things, both of which could be treated, neither could be cured but medicine could reduce the effects.

This would give Spike another three to four years of a good life, where he would be able to run and play without any problems.

Blood samples were taken and these were sent off to the laboratory for testing, took three weeks to get the results.

We had hoped the blood tests would tell us more but sadly nothing was found, so now we need to take Spike to see a neurologist.

We were lucky to get an appointment at 10.25 on Friday 12 October to the Animal Clinic which is part of Utrecht University.

This is one of the teaching clinics where vets get trained; it seems to have a good reputation.

Now Richie will go to Utrecht on Friday 12 October, with Spike to see if they can help.

Hope they can, would give alot to have him fit again and hear him running full tilt around the apartment.

He is such a sweet dog, my special little friend who takes his job very seriously to keep us both happy and amused.

My Pink Tiger Fake Fur Cape From rem-designs.co.uk

A Wet Wednesday In October.

 

Today has been a cold, grey and rainy day; it stopped raining briefly only to start pouring with rain minutes later.

The day was cheered up considerably by the arrival of my beautiful new Cerise Pink Tiger Faux Fur Gothic Punk Cape.




I bought it on EBay from Rachael @ Rem-Designs, a wonderful designer who has lovely things on her EBay shop and on her website: http://www.rem-designs.co.uk/ and you can find her on Face: rem-designs.co.uk.

Her attention to detail is very good, her clothes are great designs and well made, with everything finished excellently.

Tomorrow I will get Richie to take a photo of me wearing the cape and the matching fingerless gloves Rachael, made as an extra for me which she included for nothing along with a cute little bag.



All in all a good positive experience, one I would recommend 100% to other people, an added bonus if you live in the UK is free postage.

It has been lovely to meet these two bloggers recently:

Karen @ Meandering...One moment please.

My random musings, thoughts and observations as I meander along life's many paths.

http://meanderone.blogspot.com/

And

Robin @ Wheelchair Bird

http://wheelchairbird.blogspot.com/

And to visit Kris’s new blog:

Kris’s new blog @ Where to Vegan

http://www.wheretovegan.com/

And to revisit old favourites like:

Cranky @ Musings of a Cranky Caregiver
A Blog About the Random Stuff that Floats Through My Brain
http://musingsofacrankycaregiver.blogspot.com/

And

Joan @ Joan’s New Musings
Musings of a retired Scot.
http://joansnewmusings.blogspot.com/

And

Friko @ Friko’s Musings
http://frikosmusings.blogspot.com/

And

Libby @ Thoughts….. Usually With Attitude
http://libybil.blogspot.com/

And

Diane @ A Stellar Life
Living a life with Multiple Sclerosis and all the rest. This blog will include my views on current events, disability issues, entertainment and silliness, politics, health issues, and I am sure to offend some; but the celebration of diversity is my main goal.

http://dj-astellarlife.blogspot.com/

Despite the gloomy weather it has been a day made more pleasant by the cape arriving and reading other peoples blogs.

And by getting Spike an appointment at the Animal Clinic in Utrecht on 12 November to see a Neurologist.

It is worrying that recent blood tests did not show any reasons for his wobbly back legs, we are hoping the clinic will be able to find the cause and be able to treat Spike..

Gloomy wet Wednesday in October outside but trying to keep happy and optimistic here inside.

An Important Job

Kathe Kollowitz.

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

This morning started off with a rather unpleasant phone call from Ria, an employee of Arjo Huntleigh, the company who supplied me with the Nimbus 3 mattress.

Ria called me yesterday and we agreed that 11.00 was a good time for her to come round to do her important job, as I needed to get up at 11.30.

She called me two months ago to say, that she had to come by and check that the mattress was still ok, she wanted to come round between 10.00 and 11.00 the next day.

When I told her I had an appointment the next day, for 5 hours from 10.00 until 15.00, she said she would call me back the next week.  

Then I never heard a word until yesterday, should have phoned the company when she had not rung back, as she tried to say, that she had to wait ages to check the bed because of me.

As if it were my fault she had not got back to me before, she said that she had previously called me some weeks ago, seemed surprised when I told her it was actually two months ago.  

 This morning I expected her to be here at 11.00, instead she called at 11.05 to say that she would be late, by 20 to 30 minutes.

As I needed to get out of bed at precisely 11.30 to be ready for an appointment at 12.30, I asked if we could reschedule the appointment, but this was absolutely not possible.

All her visit entails is her coming by and asking me if the mattress was still satisfactory and leaving again, she does nothing else, so asked her if she could not do it over the phone.

Ria’s response was to tell me if she could not come by today, I would run the risk of losing the mattress as it was imperative she made the visit.

She finally got here at 11.45 and asked me if the mattress was still satisfactory, when I said yes she ticked a box and left, all that for 2 minutes surely a phone would have been enough.

Difficult To Wait Calmly & Patiently.

Caspar David Friedrich.

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

http://commons.wikimedia.org/wiki/Caspar_David_Friedrich

Today has been a rather cold and sunny day, had a good physiotherapy session with Mathilde, which is always good thing.

Woke up today, after sleeping soundly and the first thought in my mind was whether my catheter was still inside me or not.

As soon as I was fully awake and could move my hands I carefully slid my left hand under my left leg.

Happy days it was still dry when I brought it back out and I could smell the rose shower gel that Richie showers me inn everyday.

What a tremendous relief that was, especially to discover that the catheter had not popped out.

Good to start the day calmly, did not fancy waking up and right away being taken to the shower by Richie with top speed.

Lovely to be able to have my legs massaged, Richie does not lift my legs anymore as that was causing the catheter to pop out.

Richie got me the table over the bed and my laptop and after taking my baclofen tablets I listened to the radio and read my mail.

A much pleasanter way of waking up, than having to be taken to the shower before I was even properly awake.

Wish that I could hurry the appointment up but will do my best to stay calm and patient, probably better than getting all worked for nothing.

Staying calm and being patient is still not my strong suit, wish it were but despite everything I still find it so very difficult to wait patiently.

                                                        

  

Optimistic And Making The Best Of Life.

 

Roy Lichtenstein.

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

Good nights sleep and no nasty wet surprise awakening this morning which was very pleasant.

Received lots of useful information today, about the Supra Pubic catheter from Webster, a blog friend that is going to be very helpful for me.

Funny how I am almost looking forward to the operation now, but that is because it is so very worrying to have the catheter pop out at any time.

Very sad the other day to discover that Peggy, my first Dutch blog friend had died, she was the first person who told me about the SP catheter.

Had wanted to tell her that I was going to see a urologist very soon, so that I could get an SP catheter, as I really need it now.

Had been puzzled not to get a response from her, but that is not surprising now I know Peggy is no longer alive.

If she had been, she would have responded right away, I did not know her well, used to visit her blog quite often until the beginning of the year.

Shame that I was too preoccupied with my pressure sore and too depressed by it taking so long to heal to visit many blogs.

Glad that it did finally heal, was so frustrating for it to be ok and then to open up a total of 5 times before it finally healed in August.

By that time I almost lost hope of it happening, so happy it did heal and properly too, so good not to be stuck in bed all day and every day.

Despite being depressed, I managed to stay optimistic too and make the best of everything I could, which is the only way to be, optimistic and making the best of life.

              

Being optimistic and making the best of life, is the best and only good way to be.

Saturday Morning Surprise Waking Up.

Giuseppe Verziano.                                                            

http://www.buzzfeed.com/melismashable/the-twisted-mind-of-giuseppe-veneziano-nsfw

http://www.arcadja.com/artmagazine/en/2010/07/26/scandal-for-a-work-by-veneziano-the-madonna-with-hitler-shocks-pietrasanta/

Our good friend Lin, from The British General Stores came by to visit me yesterday, it was as always lovely to see her.

http://www.britishstore.nl/

Good of Lin to come by especially after working in her shop and staying late to do her ordering and administration.

Her shop is worth a visit for those in Amsterdam, and if you ever visit here I recommend you visit Lin’s lovely shop.

Slept very well and very soundly this was good, even managed to fall asleep again when I woke up early this morning.

Today started slightly different than I had expected it to start, we woke late morning, and Richie came over to kiss me, before fetching me some THC.

As he left the room I moved my hands under the duvet, my left hand was difficult and would not move upwards easily.

Tried to touch my left leg and thought it felt cold, touched it again and realised that I was damp and that I must be lying in a pool of urine.

Told Richie when he came back in with the THC vapour for me, he looked under the duvet and said I was right.

So instead of a gentle start to the day, drinking tea, chatting and slowly waking up Richie had to hoist me out of the bed right away and take me to the bathroom.

Glad that I have got an appointment with the urologist on 4 November to talk and 26 November for the poli clinic operation for the supra pubic catheter.

Can’t come soon enough for me now especially after the nasty surprise this morning, hope that once I have the new catheter that those nasty surprises will be a thing of the past.   

Relaxed Friday.

 

James Ensor. 

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

Today was a nice quiet relaxed day which was very pleasant for me; did not do too much when I first got the laptop this morning.

Listened to the radio, in the mornings there are some good short stories and plays on BBC Radio 4, have been enjoying them a lot recently.

Nice to rediscover plays and short stories they been giving me much enjoyment recently and made me want to listen to audio books again.

What I really want to do is go to a bookshop and look for new authors, new books, but sadly my hands do not function well enough to manage books.

Shame as I loved going to bookshops and buying lots of exciting new books and reading them quickly and with great enjoyment.

It was quite a nice day despite it being very changeable weather again; luckily the fingerless gloves I bought on EBay arrived today.

They are very good for keeping my hands nice and warm, makes a pleasant change not to have icy cold hands like I usually have.

The only time my hands are not like ice is in the summer when it is warm, as soon as it cools off so do my hands.

This year summer was too brief; we had three weeks of glorious hot summer weather from 28 June until 18 July then it got cool and very wet.

Now it is cold autumn weather which I hope to enjoy wrapped up warm and snug in my fleece tops, jackets and gloves.

  

Friendship And Support.

James Ensor.
http://en.wikipedia.org/wiki/James_Ensor

Yesterday was a good day, really enjoyed seeing Antje in the afternoon, so glad that Richie had found my disabled parking permit on Tuesday night.

Meant that Antje could park right outside for nothing which is good, otherwise it is approximately 3 euro’s per hour.

She was here for 3 hours which would have cost Antje 9 euro’s for her visit to us, real relief when Richie found it between some old letters.

While Antje was here another friend, Eva came by, which was a pleasant surprise as people generally do not pop by spontaneously.

Everyone here makes appointments, these days they are easier to cope with as we do need to know when I need to be ready by.

In England, I was more used to friends popping by and surprising me, nowadays life is sadly more organised, guess it has to be with MS.

Need to let friends here know that we really would appreciate seeing them lots more, more visitors is  best, as it is not good for either of us to get too isolated.

Easy enough to do especially as we do enjoy each others company so very much, that it is easy enough to forget to organise visitors.

This was no problem when we were both working and seeing plenty of people during the day, plus we could go out in the evenings.

Life has changed so much these days having MS, that I really need to remember that in order for life to be ‘spontaneous’ I have to get organised.

First step is to let our friends know they are very welcome here and we love and appreciate their friendship and support.

 

Time For An Award.

 
Prolific Blogger.

Karen recently gave me a lovely surprise; she passed on a unexpected award to me, The Prolific Blogger Award.

Karen @ Meandering...One moment please.

My random musings, thoughts and observations as I meander along life's many paths.

http://meanderone.blogspot.com/2010/10/award.html

As I was rather preoccupied with burocratic telephone calls and appointments, so I did not get around to passing on the award until tonight.

Am going to really enjoy choosing who I shall pass this award on to, love getting awards for just that reason.

There were rules to follow but as I do not like to many rules, therefore there is just one please link award to who gave it to lyou.

Here is the list of people I would like to pass the award onto:

 Ana @ Justana

 "It has become appalling obvious that our technology has exceeded our humanity." Albert Einstein

http://justana-justana.blogspot.com/

Ana @ Hella Heaven

" To see what is in front of one's nose requires a constant struggle." George Orwell

http://hellaheaven-ana.blogspot.com/

 Kris @ Behold the Metatron

http://www.beholdthemetatron.com/

Taxing Woman @ Carole’s MS Blog.

http://carolemsblog.blogspot.com/

KOS! @ KOS Keep on S’Myelin!

http://keeponsmyelin.blogspot.com/

Lucy @ What Life Is About

Just about family, flowers and various topics, plus living

http://whatlifeisabout-lucy.blogspot.com/

Raga @ The Singing Chef

I'm a singer and cook trapped in the body of an HR professional. Experimenting is the name of my game. What you'll find here is a mixed bag: a treasure trove of traditional and fusion foods, all with two common ingredients, enthusiasm and love. 

http://chefatwork.blogspot.com/

Janis @ Just Breath Janis

http://justbreathejanis.blogspot.com/

Mary @ Travelogue for the Universe

A rambling train of thoughts about the universe and our micro solar system consisting of our dear Sun and other planets in a magnetic dance while we hurtle through space on the face of a rock and stare at flat screens where we attempt to connect while we detach.

http://traveloguefortheuniverse.blogspot.com/
 

Rei @ NecROSEphelia

An endless symphony of blasphemy... 

http://deadtraumfrau.blogspot.com/

Lola @ Lola’s Diner

http://lolasdiner.blogspot.com/

Stephany @ soulful sepulcher 

I am on a journey. Take a walk with me. Life is short. So stand tall. "Always go too far, because that's where you'll find the truth."~Camus

http://bipolarsoupkitchen-stephany.blogspot.com/

Radagast @ It's quite an experience

"Mais je n'ai pas peur" - La Complainte du Partisan (Anna Marly)

http://itsquiteanexperience.blogspot.com/

S.S-O @Multiple Sclerosis & Me

MS: Multiple Sclerosis, My Story... I am a Trinidadian; I will use lots of Trini slang/words and will explain as I go but lime=hang out; i will use that a helluva lot!

http://msxats.blogspot.com/

Rhapsody Phoenix @ Rhapsody Phoenix Authenic Expressions

http://rappingonamelody.blogspot.com/

Globeskater @ It's my Life

Travelling, Speedskating, Cycling, Movies, Books, Writing, Having Fun with Friends, Couchsurfing...

http://globeskater.blogspot.com/

 Mitch @ Enjoying the Ride

skip to main  skip to I have Primary Progressive Multiple Sclerosis and sit in an iBOT wheelchair all day. So why do I lead such a contented life?

http://www.enjoyingtheride.com/

Marc @ Wheelchair Kamikaze

The Rants, Ruminations, and Reflections of a Mad MS Patient

http://www.wheelchairkamikaze.com/

Webster @ Halt Stop Forget Relax

Living a life with MS. This is a place where I say what I want; I can criticize, be rude, and fart out loud if I need to. I can and will get pissed at my MS, but prefer to work along with him. Usually I am well-mannered and gracious and behave myself. So do come in and ride along with me.

http://hsfr.blogspot.com/

Donna @ Arranging Shoes

shttp://www.arrangingshoes.com

Sherry @ Word Salads or the Demyelination of Me

Living single with multiple sclerosis and the loss of a child

http://wordsalads.blogspot.com/

Tessa @ Aerial Armadilllo

FROM A LIFE...A COLLECTION OF IMAGES IN PROSE, PAINT AND PHOTOGRAPHS.
Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in sideways, totally worn out and yelling joyously .... "WOOO HOOO what a ride!"

http://aerialarmadillo.blogspot.com/

Robert @ Daily Athens

ATHENS - THE CITY BETWEEN MYTH AND HISTORY

http://tagein-tagaus-athen.blogspot.com/

Libby @ thoughts...usually with attitude...

http://libybil.blogspot.com/

Friko @ Friko’s Musings

http://frikosmusings.blogspot.com/

 Andy @ Jughead's Baltimore Blog, Our Life With Multiple Sclerosis  

These are the things that make me scratch my head and say "Whaaaaaa"?

http://jugheadsbaltimoreblog.blogspot.com/

Wet And Dark Tuesday Today.

 

Marcel Duchamp.
 

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

Pouring with rain for just about all the day today, very dark and dull day, shame as the weather has been very sunny, typical lovely early autumn weather.

Love sunny cool October days, shame that at the end of the month the clock will be put back to winter time.

Always feel that I have been robbed of some of the beauty of this time of year by the clocks being altered.

Not too worried about the weather getting colder as I have got some good warm clothing and once the rain cape is ready, I am all set to cope well with the winter weather.

Now it has got colder my body seems to have adjusted and I am finding that my arms and hands are working quite well, which is good to see and feel.

Tomorrow we will be getting visitors from Germany, our friend Antje will come by for the afternoon with her daughter Ira.

Be very good to see Antje again, looking forward to her visit tremendously, she has been visiting us every year around this time.

Seeing Antje tomorrow will be very special, met her in 1993 when I was trying to get a place at Middlesex University to do Bachelor of Arts in Criminology.

Sadly she did not get a place at an English university to study medicine, as we had all hoped; instead she got a place at the University of Berlin.

The main thing is, we have remained in touch which is the best state of affairs with good friends like Antje.

Really looking forward to tomorrow, going to enjoy every moment.

.

Happy Mondays

Connor Maguire.
 

 http://www.connormaguire.com/bio.html

Our general practitioner, Dagma, Doctor Van Wijngaarden called us around 12.45 to tell me she had got appointments for me with the urologist.

The earliest she could get was one on the 4 November, that is to talk to the urologist that is the time for all my questions.

The urologist will take a scan to get an idea of where my bladder is so that there will be no surprises on the operation day which is the 26 of November.

Shame it can not happen before the concert, I am sure it will all go well, right now there are no problems with the catheter which is brilliant.

Nice to not be consumed by constant worry about the catheter and whether something will cause it to slowly slide out.

Found on the one of the reasons it does that is if the catheter gets caught when leggings/trousers are put on and taken off.

Have therefore stopped Richie from picking up my legs and pushing them up to my chest as that was causing the catheter to move and therefore start to pop out.

Since Richie has s topped doing this as part of my mornng exercises the catheter has stayed in.

What a relief, even more of a relief is getting the appointments in November be excellent to get the supra pubic catheter and the end of worry.

.

Sunny Intervals For Sunday

 

Unknown Artist.

Slept wonderfully well last night, even managed to fall asleep again this morning when I woke up sooner than I wanted to.

Asking Richie to shut the windows really helped, as soon as the cold air was no longer wafting into the bedroom it was easy to slip back off to sleep.

This is always such a big achievement that on the rare occasions it occurs I enjoy it tremendously.

Feel quite relaxed now after being able to do something as ordinary and simple as falling asleep again after waking up.

Never realised until MS that it would become such a rare event, did not realise before, that relaxing my body would also be a rare occurrence.

When I press the button on my bed that lowers the foot end and then the head end of the bed so that I can sleep, I can’t stretch out and relax myself.

I never thought that my body would not be able to relax very much or not at all, that thought never crossed my mind, certainly not when I was just diagnosed.

I can not move my legs or my torso, so just have to lie as Richie has organised me, can not straighten a leg or tense it up and relax.

My way of relaxing is to fall asleep and hope that waking up will not be by leaps and bounds, literally, as my fingers cramp and twist in jolts of movement.

Hands do the same ball up into tight fists and are difficult to straighten out, then the legs start drumming and gently vibrating and kicking up.

Relaxing only really happens in my mind as I try to override the sensations produced by the nerves transmitting the signals.

Scrambled messages, wrong messages, jumbled messages, nerves are all transmitting them at the same time, or so it feels like and no wonder it feels so awful and can’t be controlled.

If they could then I think that researchers would be well on their way to working out the causes for MS.

Controlling the nerve message would surely be able to change the w ay MS affects us all, what a wonderful fantasy one I can enjoy having many times.

Another Saturday.

Jorge Damiani
b. 1931 Uruguay.
 

This morning I woke up early again, this time Richie noticed and got me some thc vapour which helped me to sleep for a few more hours.

Made all the difference for both of us as otherwise I would have ended up not being able to sleep and feeling every cramp and every spasm.

Hate that happening as it makes me moan with the pain and that of course disturbs Richie and wakes him up too often.

Really wish that I did not disturb him so much, there is however nothing that I can do apart from try to relax and stay calm and quiet, not always possible with pain.

I do try my best as I am aware that Richie needs his sleep after being busy with me all day and evening, sometimes even into the night.

Nice surprise tonight when John, a good friend of ours from Glasgow phoned, lovely to speak to him again after a year.

He used to live in Amsterdam but left here in 1996 and moved back to Scotland; think we saw him for the last time in 1999/2000.

Be very nice to see him again, he says he may come over and visit us soon, even sooner if he gets work over here.

Hope to see him, still miss him being in Amsterdam, funny really considering how many years ago it is since he left.

Guess that a good friend’s absence is always missed, there are plenty of other friends that I miss here, and most either went to new places or like John went home again.

Good to be in touch with friends, hear how they are doing and catch up with their news, nice to get John’s call tonight has cheered me up lots.

Since Thursday my catheter problems seem to have stopped for now, should be getting an appointment with the Urologist next week.

Be good to get the supra pubic catheter done as soon as possible so that I will be able to go to the Drive by Truckers concert on the 17 November without worry.

Looking forward to not worrying about my catheter anymore soon, in fact hope very soon now.

  

Will Do Whatever It Takes.

 
Snapshot of me in August, 2008

Strange day today, dark dull rainy day outside had to put the light on this morning at 10.00 that is how dark it was.

Slept well just not long enough, it was only just light when I woke up and sadly could not fall asleep again, no matter how many pleasant fantasies I had.

Could not achieve the bliss of a couple more hours sleep, did have some great fantasies like floating down a river in a rowing boat with Richie.

Being in a light house looking out at a wild sea and watching the light beam from the light playing over the water.

Lovely fantasies but no sleep not even for a second, hate that every time I am nearly relaxed my arm muscles contract and I find that my arms try to fold over my breasts.

Then I have to work hard to unclasp my arms, straighten my fingers and get my arms down by my side.

By which time I am totally wide awake and the whole cycle repeats, I relax and my arms do the same painful thing, my legs also start to have almost gentle vibrating spasms.

In the end just lay in bed trying to relax and enjoy being on a beach in Trinidad which was pleasant.

My arms were so painful and stiff that it took me ages to get them out from under the duvet, hurt like hell, eventually it worked.

Once Richie helped me to straighten my right arm I could hold on to the handle above my bed and start my arm exercises.

My arms are getting incredibly painful, especially notice this when I am outside these days, this means that I have to work hard to get anywhere.

Had not thought that my arms would be like this certainly not now but guess as with everything with this shitty disease I will have to accept and deal with it the best I that can.   

And I will, have already started by speaking to Johanneke about other ways of steering the chair, good to get action now as these things take months here and I do not want to be stuck indoors.

Will do whatever it takes to keep mobile and keep happy.

                       

Relaxed Day Today.

 

Pursuit of Happiness 1997
From "South Carolina" Series

Kristina Pardue.
Abstract, surreal, expressionist artist.

Slept well last night, after the incredibly tiring day yesterday with two software nerds from RTD Het Dorp.

The appointment started with a bang when one of the men claimed that despite my getting a new bed soon, I had given the ok for them to add their device to the bed.

When I said I had not done so, he told me that was not true as his colleague said I had told him they could go ahead.

I said that there had been no communication about the bed, not until they had done it as they just came in and went into the bedroom without telling us anything.

I told them as soon as I was knew, that they had done the bed that I was getting a new bed; this was when he took my wheelchair table and drilled holes in it for the IPaq stand.

This was even after I told him it was not mine just on loan until mine was made to measure for me.

He ignored me and drilled four holes in the Perspex; Harm from Welzorg who came by the next day was very annoyed about this.

Luckily Johanneke, my occupational therapist was here for an hour from 10.00 to 11.00 so she went through my list of things with them that needed adjustments.

Good she was here as it got quite unpleasant when I was told that I was not being truthful and I countered that it was the colleague who was being untruthful not me.

Richie saved the day by reminding the man and us that he was there for business and it might be good to get on with it which they did.  

Great when they left at 15.00 and we were able to recover from the ordeal of two men being here for five hours.

Nice relaxed and pleasant day today.

Keeping It Brief.

 

Fiona Rae. 

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

Today was very busy; we were awake at 08.00 so that Richie could shower me at 08.30 to be ready for 10.00 when the IPaq Home Servant people were due.

They got here at 09.45 instead of 10.00 which were ok as we were just ready, they were here until 15.00.

By which time we were both very tired from watching them work, luckily they did sort out several problems so that is good stuff indeed.

They will come back as soon as my new bed will be here which should be quite soon now, as I got the confirmation today that my health insurance has agreed.

Halfway through we had to go quickly to the bathroom as the catheter had slipped into the wrong position.

Happened again after Richie put me back into bed, lifting my legs to put the straps from the hoist under me seems to cause the catheter to pop out.                          

Tomorrow I should hear from my doctor whom I have asked to phone the hospital and explain my situation and the urgency.

Am rather tired this evening so will keep this very brief and post after I have found a picture.    

As Little Stress As Possible.

 

 David BEER.

Born in 1943, David Beer originates from Whitstable in Kent and trained as a teacher at Bishop Otter College, Chichester, where he studied pottery as his main subject. He started painting at evening class whilst at Corsham, Wiltshire, where he was a Head Teacher. He also attended the St. Ives School of Painting on residential courses during this period and became captivated by St. Ives. David Beer was co-ordinator of the education working party for the St. Ives Tate Action Group, before the Tate Gallery opened.

David moved to St Ives in 1986 and taught for eleven years in Penzance, where he had special responsibility for art in the school and ran in-service art courses for teachers in the area. He retired from teaching in 1988 and is now a full time professional artist. David paints seascapes and landscapes in oils using a palette knife, and makes life studies using pastel and acrylics.

Spoke to Dagma our doctor today; she had discussed my situation with the urologist who said that there was no rush as I could always put abit more liquid into the bubble in the catheter.

Was quite tempted by the idea but then again really do not want to be constantly worrying about the catheter

Thought about it for awhile and discussed it with Richie and we both decided that it would be better to proceed now, better than having it hang over my head.

Putting extra liquid in the catheter is just putting off the moment and it is clear that I need the supra pubic catheter now.  

Got the name and phone number of the urologist from Dagma and am going to organise the appointment myself tomorrow.

Feel a lot better now that with Richie’s help I have made the decision, still do not like the idea at all, of having an open hole in my body.

Think that having a Foley catheter for three years is long enough and it is time for a change now; be quite pleasant to no longer feel the pressure of the catheter.

Looking forward to not having to worry anymore if the catheter will pop out or not, be very pleasant to not have to think about it like I do seem to right now.

Can think of other things that would be more relaxing and pleasant to think about, think the Foley catheter is causing me too much stress which I really do not need.

Need as little stress and as much enjoyment as possible in my life right now.

Getting Organised.

Keith Tyson.

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

Today started well, woke almost gently think that is because I am getting used to feeling everything tighten up and become painful as soon as I wake up.

Richie did my leg exercises after I had done my arm exercises, then he set me up with the table and my laptop and he had a quick shower.

I settled down to reading my mail, listening to the radio and thinking about various things I needed to organise.

Did not get as far as writing today’s post, as suddenly I felt that the catheter had moved slightly, so I called Richie.

He popped it back in and hoisted me out of bed and took me through to the shower in the shower chair.

Had an excellent shower and Richie dressed me and sprayed me with Jean Paul Gaultier perfume and put earrings in and a couple of pretty bracelets on my wrist and a sparkly brooch and I was ready.

My session with Mathilde went well, although I noticed that my right arm was much more difficult to lift up to my head.

Richie and I had some lunch after my physiotherapy session and we were all set to go out and enjoy the sunshine when I felt the catheter start to move again.

Decided right away that this was happening to often now and for no good reason, had to accept that this is the moment when I needed to get the supra pubic catheter put in.

                             

Before we went to the bathroom I called our doctor and asked her assistant to get Dagma to call me back after her last appointment.   

Dagma called just after Richie had popped the catheter back in and had got me back into the wheelchair.                              

Asked Dagma to organise an out patients appointment for me as quickly as possible to get the new catheter which I now urgently need.

Cried a lot also while talking to our doctor as I am pretty scared about any surgical intervention.

But it is now obvious that I need to get the supra pubic catheter done so I do not need to worry about my catheter popping out.

Feel worried about the procedure and at the same time relieved that it will happen soon, would rather enjoy life without having to worry about things such as catheters.