Taking It Out Of Me.

Roberto Matta.

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

The last couple of days have really taken it out of me, especially yesterday at the hospital.

It was pretty awful lying there, with three doctors and two nurses trying to insert a new catheter into my bladder.

It was very painful, although not as painful as it could have been, but luckily I don't feel quite as much because of my paralysis.

What I did feel was not pleasant, what helps me enormously is being able to distance myself from what is happening.

I'm glad I'm able to shut myself off from what is going on when I don't like what is happening.

This piece is going to be no longer than this because I'm still pretty tired after yesterday's visit to the hospital.

Tomorrow is another day, when I hope to be feeling better, I shall place this on my blog together with another excellent piece of artwork by Roberto Matta.

Tired But Happy.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hospital Negligegnce And Incompetence.

Emmy Bridgewater,The Kill,1942.
http://en.wikipedia.org/wiki/Emmy_Bridgwater

What started as a relaxed day yesterday became quite tense and worrying, but once the Beenhakker engineer had fixed the shower chair, those tensions vanished.

Feel very lucky that Arjan was on call last night, and thought he could make the difference; he made an amazing quick fix, which allows Richie to fully use the shower chair.

So today, I finally can be showered by Richie, which will be an incredibly lovely experience, looking forward to it.

Because of being distracted yesterday, I hadn’t written a post, thought 23.00 not the time to start to write, instead I wrote yesterdays post today.

There was even more stress worrying about my good friends Angela’s mother Myra, who got rushed to hospital, when she fell; broke her good right arm and dislocated and broke her shoulder last week Wednesday.

She had an operation right away, two more are due, because the staff took too long getting the commode last Saturday, Myra wet the bed, a nurse shouted at her and roughly put diapers on her.

Myra was bright over last weekend, starting to get worse on Monday, poor Angela frantically, trying to find the cause of her mother’s deterioration and getting no help from the doctors and nurses.

There was excellent news from Angela last night, that there had been positive developments thanks to an auxiliary nurse, who could not believe the change in Myra since being admitted the previous Wednesday.

She had been off duty until Thursday; she insisted that tests were done, turns out the cause of Myra’s deterioration was a serious UTI, something that could have killed an 80 year old like Myra.

Once Myra could communicate again she told Angela that after the nurse shouted at her she limited her intake of liquids so she did not need to pee too much, this caused the UTI.

I called the hospital yesterday, to check how Myra was doing, I wanted them to realise that there were people who are concerned about her, and I heard she was on an antibiotic drip.

Strange the hospital did not it  give Myra a catheter and drip for fluids right away, as it must have been clear she would not be mobile,  nor did they monitor her fluid intake.

I think the hospital have been negligent, Angela will put in a formal compliant, she could have lost her mother due to the incompetence in dealing with a handicapped woman with broken bones.

It's A Shocker.

Bryan Charnley.
http://en.wikipedia.org/wiki/Bryan_Charnley

Woke up in lots of discomfort this morning, Richie discovered there had been a tiny kink in my catheter tube, which began to flow after he had moved my position.

After that was successfully resolved and my catheter bag filled up I found that I could do my arm exercises much easier than yesterday.

Brilliant noticing that it’s easier today, better than only noticing progression of my MS.

Listing all the things that are no longer possible for me to do is a pointless task, it only causes depression.

This is a symptom with MS, and no wonder it’s depressing, its not easy to be diagnosed with an incurable disease.

The odd thing is that despite knowing it was incurable I still was shocked to find there was really no cure.

Very strange to know and yet be so shocked, be left feeling so bereft, I wonder if others have felt the same way.

I think that I can’t be the only one, I am sure others will recognise how I feel knowing its incurable, so there is no chance of getting better.

That is the real shocker that I can’t get better and nobody gets better, that can’t be right, not after being told everything can be fixed, to finding out this was not possible.

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.       

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.  

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.

                                                        

  

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.   

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.

Devestating News.

Paul Delvaux.

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

Richie was just drying me after a very pleasant shower when he made a shocking discovery that the skin was coming off the spot where the wound had been.

We are both devestated by this, one minute we were happily discussing what I wanted to put on for Marianne's visit and the next Richie was getting his glasses to examine me more closely.

When he said he needed his glasses my heart sank into my shoes, I became really worried and was dreading what he would see.

When he said that the skin was coming off I started to cry as it was even worse than I had thought it would be.

I thought he was going to look more closely at the catheter as he had discovered a problem or he had noticed that I was getting patches of yeast infection due to the sticky heat.

Anything but this, no not this again but I guess this will keep happening as the spot where the pressure sore wound was will always be extremely sensitive.

And there will never be any guarantees that it will not happen again as it obviously will, guess the only conclusion from this is that I can not take anything for granted.

Seems that I did, but I am not going to give myself a hard time about this and demoralise myself just when I am so vulnerable right now.

The only thing I can do; is that I will definitely take every opportunity once it is healed to sit and roll around as soon as I can.

To not do so especially as it is the third time now that I have had to suspend sitting in my wheelchair.

What is more worrying this time is that there is no immediate really obvious reason for the skin coming off.

Previously Richie could identify the cause right away which was somehow reassuring, this time we do not have a clue.

Which is worrying for us both especially for Richie, hope we can work out what happened so we can be vigilant and prevent it happening again?

Hope that it heals up very soon and does not escalate any further and that Ton can come round on Monday to give us his advice how to proceed.

Writing the blog has helped me a lot, can feel my spirits lifting once more, it’s good to put it into words.

Enjoyed The Cooler Temperature Today.

Gareth's Photos From Wales.

It was a disturbed night last night, fell asleep quickly and with no problems but then woke up and felt very damp and thought that I was lying in a pool of urine.

Called Richie in a panic and he came over right away and checked and told me that all was well and there was no need to worry.

Could hardly believe that all was well, heard myself ask Richie again who reassured me before getting some THC which soon had me sleeping again quite quickly.

What a relief that it was sweat and nothing else, the calm way Richie dealt with being ripped out of sleep and the news that there was no leakage from the catheter, plus the THC really did the trick for me.

Today started very overcast and cool, after midday it rained, twice a huge black cloud came over and emptied itself.

Saw people trying to outrun the rain with little success, strange they did not have rain gear on such an obvious changeable day.

Amsterdam is always wetter than other places as it is located close to the Ij an inland waterway which connects to the sea.

That is also the reason that snow happens rarely here and when it does it is usually gone by the next t day.

Winter 2009 was an exception; the snow happened on the Winter Solstice and was on the ground well into the New Year.

The sun has just come out now at 19.00 and the clouds have gone and its blue skies again, it is also instantly much hotter once more.

Was very happy that it was cooler today was good to not feel wiped out for once, really enjoyed the temporary absence of the 30 + temperatures.

Hoped my fingers would be able to function better today but sadly this was not entirely true, my index finger is still not all that especially, now it is very hot again.

Oh well going to enjoy what there is for me to enjoy this evening, Richie is making some food now and will be in shortly.

Remember It Is Business.

Francis Bacon.

http://en.wikipedia.org/wiki/Francis_Bacon_%28painter%29

Its 13.00 already, two huge spasms started the day, felt like I had been pushed violently up and down in the bed.

One second my arms were painful and the next it felt like I had been kicked, big spasms feel like being moved but there is no movement at all.

Tried to regain my equilibrium and get my arms stretched out and do my arm exercises, which all went well.

After my arm exercises, I asked Richie for the leg exercises, also asked if he needed to empty the catheter bag.

When he looked he saw that there was nothing like the quantity he expected, at first it seemed everything was ok, but as soon as he begun to do my leg exercises Richie saw a small leak.

Apparently the catheter was slowly coming out, luckily Richie managed to pop it back in quite quickly, sadly not before the sheet got wet.

So Richie got me out of bed and to the toilet and then under the shower which felt marvellous, it was excellent to get showered earlier today.

Feel very good that everything got sorted out so quickly, once back in bed Richie did the leg massage and exercises and then he set me up with my laptop.

I got an out of office response from Harm, from Welzorg, who should be adjusting my arm supports, the mail informed me that Harm was off on holiday until 8 August.

Have been waiting for him to come round here to adjust the arm support, especially since Michelle, my ARCA advisor called me on June 21.

She called to enquire whether the arm supports had been done or not, when I told her not, she was very surprised and said she thought it had been done during her holiday

Which was at the beginning of June.

She said she would get it sorted right away, from then until now I have not heard from her again nor has any action been taken.

Have just sent my case manager at ARCA a mail expressing my disappointment and sadness that I have been waiting so long, in fact since the end of last year.

Waiting with so much pain and discomfort, for the arm supports to be adjusted so that I can use them and do not have to support my arms and shoulders myself.

Doing that was so very unpleasant, but for a time I actually thought that the painful shoulders and arms was the progression of my MS.

It was a huge relief when Richie made me some temporary arm supports a week ago and I instantly could feel the difference and know that it was lack of support and not my MS getting worse.

What a relief that was, my case manager has just phoned and she and Michelle my mobility aids advisor will be here next week Wednesday, to discuss the situation.

Well after a cloudy and pleasantly cool start to the day, the sun and blue skied are back again its pretty, but hope it does not get any warmer as this is good.

Ok that is if for today will be doing my best to enjoy today and not get too wound up with the shortcomings of burocrats.

Keep reminding myself it is not personal, it is only business, it helps me dealing with them.

As Richie said ´´remember it is business, it´s best to not take it personally, then it won´t hurt you´´

Celebrations.

Michael-Jean Cazabon.

http://en.wikipedia.org/wiki/Michel-Jean_Cazabon

http://artsocietytt.org/cazabonMJ.htm


Woke up this morning and felt very damp, turned out the catheter was not in the right place and I was sitting in a puddle of urine.

What a horrible shock,just yesterday thought I had got away with this happening again.

Sadly not, 17 days after it last happened my catheter popped out again, think we may have missed the signs l
ate last night as it was so hot.

Think that my arms dripping with sweat was a sign that I needed to go to the toilet to poo; instead, we discovered this at 5.30 this morning.

What a shock to wake like that especially as we both did not get to sleep until well after 2 am.

This was due to the Fijnhout theatre across from us celebrating the Netherlands going through and sending Brazil home.

The Fijnhout theatre had their large speakers outside and played ear splitting repetitive music, so loud I could not hear the radio or TV in here.

Netherlands went through around 6 pm, when I went back to bed I felt like I was at a loud and very smoky gig.

Inhaling all that tobacco smoke, made me feel unwell, got a horrible headache and pain in my right ear, felt claustrophobic in the bedroom.

The theatre had their large speakers outside the door opposite my window so I got blasted; initially thought the music would be briefly very loud.

I was wrong the celebrations were still going on at 5.30 and at 6.30, when we came out of the shower, a bunch of the celebrators spent a long time saying goodbye to each other in the road outside our bedroom.

They must have been drama students as their voices travelled well, losing nothing in distance.

Their goodbyes like their music was extremely boring which we also had to put up with at a huge volume.

Luckily I seemed to fall asleep again quickly, without any problems, the first thing I knew again was Spike walking in and clicking his nails on the floor as her walks.

Feel slightly out of sync today, not surprising after the disturbed night, despite that I am enjoying this moment.