Amazing difference in a day.

 

Roberto Matta.

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

Hopefully this time I will be able to dictate without any problems with the Dragon voice recognition software now that I've done a restart of my laptop.

It is Thursday today, when I was still working it was my favourite day because it was followed by Friday which meant glorious weekend free from work.

even though I am not working Thursday is still a favourite day of mine, and I still like the prospect of the weekend approaching, anticipation of a pleasant event is good fun.

Yesterday when I was put back into bed, Richie placed one of the torso supports on my leg just under the knee to lift the area of the pressure sore off of the mattress.

That evening when I was in the bathroom, sitting in the shower chair Richie had a look under the dressing to check whether anything had changed.

He was very pleased and reported that the area was much drier than it had been previously; amazingly the new procedure was having an effect already.

When I went back to bed Richie placed the support back under my knee where it stayed for the rest of the evening and during the night.

When Richie took me to the bathroom to put me under the shower, he removed the dressing and noticed that it was much drier.

How amazing that taking the pressure off the area has made such a difference in such a short time, it makes me feel optimistic.

Learning From Hindsight.

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

It was amazing to realise yesterday that we had not been inviting anybody to come and eat with us since I had to stay in bed on the 21^st of August 2008.

Startling to make this discovery, which there is no doubt has contributed quite a bit to our feelings of being semi-detached from our friends here.

I'm so glad that when we spoke about it yesterday, we immediately decided that we needed to make a change and start to invite people more often.

Shame it happened, however there is no point in looking back and reproaching ourselves much better to look forward to doing something to change the situation.

Much better to look forward to being more proactive about seeing our friends and making sure we invite them often to eat with us.

Before I had to stay in bed with the huge pressure sore in August 2008, we were still enjoying friends regularly coming around for dinner.

When I was in bed for the first period, which was from August 21, 2008 until the end of October 2009 I was too depressed and couldn't cope with much.

The idea of people sitting around me in bed eating was one that made me feel ill at ease and self-conscious so I did not encourage dinner dates with friends.

With hindsight I realise now that it would have been better for both Richie and me, to have had more friends coming by, especially during that difficult first year.

Using this knowledge to make life better for both of us is more effective than endless reproaching; much better get on with life as it is right now.

Realistic Optimism.

Roberto Matta

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

Today the hot weather has been replaced by much cooler weather, which makes it more bearable for me.

Before I went to sleep last night I was thinking about how strange it is to feel my body becoming gradually more paralysed.

What I find difficult to handle is all the pain that goes with it, why does it have to be painful, isn't it enough that my limbs do not function.

Ever since I could no longer walk at all in April 2007, I could not understand why my legs hurt so much when they could no longer do anything.

Thinking about it I realised that people who are deaf are often plagued by horrible noises in ears.

The other thing I heard was that amputees still feel their missing limbs, which must be odd feeling your leg after it has been amputated.

I'm sure many people would agree with me that it is rotten, to experience such discomfort and pain once one becomes severely handicapped.

it is strange that this happens, I wish that I did not have to feel pain in my legs all the way up to my midriff.

Now that my arms are losing functionality, I am experiencing a lot of pain and discomfort in my arms too.

My arms get cramped up tightly, this happens spontaneously as well as any time that I laugh, yawn, cough, sneeze, then it hurts a lot until the tension eases again.

When I wake up in the morning that is the first thing that happens as soon as I am conscious, and it takes quite a while for the arms to feel better again.

Being an severely handicapped as I am now, it feels like I am daily witnessing my constant steady decline which will result in my death I think in the near future.

I hope it isn't for some time yet as I would like to live a bit longer, in 2010 when I had survived two years in bed with a pressure sore and could sit in my wheelchair again it made me feel quite different about being alive.

Because of this wonderful development I was no longer depressed, pessimistic and feeling like I did not have long to live, I wanted to live for at least another five years.

Since my arms had deteriorated so rapidly from the beginning of this year I'm having to reassess my situation.

I still want to live as long as possible but realistically I feel it may not be as long as I want,I am going to I'm going to have to be realistically optimistic.

I Won't Hold My Breath.

Thomas Bak

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

This afternoon was my long-awaited appeal against the decision of the Amsterdam City Council to refuse my application for air conditioning.

When my friend Anja, phoned the court last week Thursday they told her that  I could not be present via Skype or video because they were inadmissible in the Amsterdam court.

I was told that they would however phone me during the hearing and ask me questions.

When Anja was here last Thursday, I gave her letters from Janneke Stolwijk, the Rehabilitation Clinic doctor and from Milou Sloof, the nurse, who is looking after my open pressure sore scar.

As well as a statement from me listing all of my many problems with temperatures above 22°.

In my statement I explain that as our windows are from floor to ceiling and open inwards this means we cannot use sun blinds.

It also means we can't buy a separate air conditioning unit because we can't place it under the window and let the tube hang out of the window as you need to do.

I also explained that my problem is the air temperature and not sunshine, seeing as our apartment faces to the east and to the north it means that we only get sunshine up to 09.00 in the morning making sun awning redundant.

From lunchtime I was waiting quite apprehensively for the court to phone me, sadly they couldn't be bothered to keep their promise to phone and ask me any questions or hear my side of the story.

The hearing was at 14.40 this afternoon no one phoned me, until 15.20 when the phone rang and it was Anja to tell me it was all over and I would receive the court’s decision around 22nd of June.

While I have never had much chance of success, it was slightly disillusioning to hear my friend tell me that they only allowed her to read a tiny section of my statement, and they were still harping on that my problem would be solved with the use of sun awnings.

As if they would stop the heat of the air temperature which causes me all the problems in the summer.

Well who knows maybe the court officials will actually go away and read the documentation I provided and with an open mind make their judgement.

I won't hold my breath.

Thursday, 3, February, 2011. Good At Solving Problems.

Cadavre Exquis - 1997

Acrylic on canvas
Painting made by Leonora Carrington with collaboration of
Pablo Weisz-Carrington.

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

http://weisz-carrington.tripod.com/id18.htm

This morning at 08.30 Harm from Welzorg came round to collect my wheelchair to 

 repair it.

At 11.47 Richie and I were both extremely surprised when Harm was back with the wheelchair.

Neither of us had expected the wheelchair to come back today, let alone earlier than 13.00 which had been agreed.

Amazingly it was not only back, but it seemed to be well adjusted for the table to be pulled right out without hitting me in the face.

When Richie had hoisted me into the wheelchair, he could effortlessly and safely put the table in front of me.

Then we discovered that it was listing to one side, as well as resting on my right knee, which could cause a pressure sore.

Luckily Richie is good at solving problems, so he made some adjustments which raised the table and straightened it too.

Tomorrow we have a 14.0 appointment with Michelle my last advisor who organised the adaption to the wheelchair seat and getting the wheelchair table.

Richie wants her advice how best to adjust the left arm support which is now on inch too low right now.

Once that is done then the wheelchair table will have been well adjusted for me to use safely

''Comeback Kid''

Lucebert.

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


So aware these days of every little change that is taking place in my body because of the MS, notice things that I try to both register and ignore at the same time.

Can see very clearly, that spending so much time nearly two years in bed, because of the deep pressure sore has been extremely bad for my body.

Spending so much time in bed has weakened me considerably; I shall never regain the use of my muscles in my torso.

They have gone for good now; all that time in bed has turned them from muscle to ‘pudding’.

I can no longer sit up unaided, if I try with Richie’s help, I collapse to one side or another.

Sometimes I feel like any longer and I would look and feel like a collapsed Yorkshire pudding.

These two years have been lost to me in terms of mobility, getting around, having interactions with people outside of our apartment.

I have made lots of friends in the blog world and think that without their support and writing my blog things could and would be even worse.

Feel very much that these two years have weakened me and given the MS a chance to move in even more.

Hope very much that what has happened to me will not happen to anyone else; hope that no one else will get such a deep pressure wound.

All because the people who organised and supplied me with my electric wheelchair did not make sure the wheelchair was the right size and provided adequate support.

Neither of those things was done and my feedback. reservations and misgivings were ignored and I was told to give it some time to get used to the wheelchair.

Well I did that and 5 months after I got the wheelchair I had a virtual crater of a pressure sore, which was 10 cm deep as a result.

Coming back from that is difficult and has taken all my strength and will power and endurance and does so every day.

Amazingly there is life after such an event and I am that ‘’comeback kid’’ who intends to enjoy as many moments as possible while I can and I do.

Ernst Ludwig Kirchner.

Celebrate Sitting Again.

Eva Gonzales.

http://en.wikipedia.org/wiki/Eva_Gonzal%C3%A8s

Here it is the 21 August; it is two years ago that I had to stay in bed because of a huge pressure sore.

It is hard for me to not feel deprived of two years of my life, two years that could have been different.

If only my electric wheelchair had been the right size for me, I told the burocrats but they would not listen.

When I tried to get something done to improve how I was sitting I was told that I should give the chair abit of time.

Well I did and look what happened within two months had the first little pressure sore that healed quickly.

Only for it to happen again three times one after the other, action was still not taken even when in June 2008 the Rehabilitation Clinic told them urgent action was needed.

They finally got moving end of July beginning of August but by then it was too late as the pressure sore was too deep.

And I had to stay in bed 24/7 until end of November 2009 when the wheelchair seat and back had been adapted.

I sat briefly until beginning of January when a new cushion for the shower chair caused friction which removed the skin over the healed up wound.

This took three months to heal; those three months caused a lot of additional damage to my torso muscles.

It has also increased my spinal problems because my muscles are no longer working well enough to counteract.

Now I am very crooked indeed all thanks to the inaction of the burocrats whose job it is to ensure the welfare of handicapped people.

Oh well enough of that today I am going to celebrate sitting again on the second anniversary.

I am looking forward to sitting again at the weekend.

Jeannette's Frosty Pictures From New Zealand.



Woke up from a deep sleep I took a low dosage sleeping pill so that I could sleep without thinking about my bottom and what Ton would say.

When I was awake I was extremely cold, for the first time sleeping under a duvet cover was not enough usually when the weather is good I build up quite a lot of warmth but it seems not last night.

Not surprised as the blue skies and sunshine has made place to dull leaden clouds and torrential rain.

So no wonder that I was so cold when I woke, without the sleeping pill I would have woken up in the middle of the night asking for a blanket.

As soon as I was fully awake I realised that there was no shred of warmth under the cover my whole body felt like ice.

Now I have a fleece blanket over the duvet cover and a shawl around my arms and I feel much better.

Ton Peeks has just been and reassured me that it is not a new wound which would indeed require months of healing.

It is he says where the skin around the old scar was recently damaged and a little piece of that skin has been removed.

Both Ton and Richie think the strapping for the hoist caused this when he pulled it down around my bottom.

This confirmed what Richie thought on Sunday that the action of pulling the strapping under my bottom caused the skin to be pulled off which explains why it was bleeding so profusely.

If the injury had been caused by sitting the day before Richie would have found dried blood in the bed and that was not the case.

Ton says this does happens sometimes and requires even more care; Richie has already adapted how he puts the straps on me.

Now he lifts my right buttock and gently slips the strap under me, this is ok in bed and in the shower chair but there is no such option in the wheelchair.

Hopefully Richie will find a way to achieve the same result, which I am sure he will as he has found a way around every problem

I am so relieved by the news that t is not a new wound but the result of another tiny piece of previously skin being removed.

Healing has already happened but it is not totally healed over there remains a two millimetre gap, the size of a small nick in the skin.

Ton even reckoned that I could sit today but I told him that I would rather wait until it has totally healed.

Ton approved that and said he though that it will be healed by the weekend and I could sit then.

What a huge relief this is for all of us even the dogs who had noticed the atmosphere being different since Sunday.

Yippee!!! I will be sitting this weekend and I do not have to be back in bed for months, hated the idea that I would be in bed on the 21 the 2nd year since I first had to stay in bed.

That was a terrible thought glad it is not a reality, glad it won’t be too long before I sit again, glad Tom approves that I wait until it is totally healed over.

I would rather wait a few days until it is totally healed, as I do not want there to be any reason for anything else to happen.

I remember 2008 when I got problem three or four times and each time it healed quickly and I sat again, without any problems.

Only to be told on 21 august that I had to stay in bed, when Ton discovered a new bigger wound.

While the surface of the wound was small the wound was very deep, in total it was ten cms deep.

That took from 21 August 2008 until 7 October 2009, 14 months of lying in bed and seeing and feeling my torso muscles turning into pudding.

There is no way that I want this to happen again, it is reassuring to hear that this latest setback is skin damage of sensitive skin that was damaged by excessive moisture.

Ton thought it was a combination of sweating due to 30+ temperatures for more than two weeks and the catheter leaking.

I am looking forward to sitting again at the weekend.

Still Very Optimistic About Life.

Wheelchair Adaptation.

An interesting article on pain relief through cannabis.

http://www.independent.co.uk/life-style/health-and-families/features/up-in-smoke-cannabis-gave-me-my-life-back-2041640.html

Slept surprisingly well last night, much better than I had expected seeing as Sunday night was such a very bad night.

It was almost as if all my worries had been reviewed many times over and from many angles on Sunday to Monday that I did not have to do it again.

Perhaps I am also being practical as I realise that I can do nothing but keep optimistic and hope healing happens quickly and well.

As it is August now the chances of getting healed and back outside are pretty slim nevertheless I still hope it happens.

Ever the optimist glad that I am an optimistic person, think if I were not like that my life would be worse.

Tomorrow Ton Peeks will be here at 11.30, glad he will come round but also sad as we said goodbye last week we thought for at least a few months not one week.

I am well aware that once you have a pressure sore the skin becomes very fragile indeed; my sore in 2008 was very deep so took ages to heal.

Took from 21 August 2008 to 6 October 2009 for it to heal, I got the adapted seat end of November and sat until 14 January.

When a new cushion on the shower chair caused bad friction which removed the skin this healed end of April when I had my first trip outside, it was 25 to 26 degrees lovely and warm.

The next setback was 16 May when I sat briefly on the catheter tube this healed in two weeks.

The next time was 18 July and it healed on 25 July and Ton confirmed this on the 28 July and the latest was this Sunday just gone the 1 August.

20 day before it is two years that I have been confined to bed, pressure sores are terrible and something that everybody needs to be vigilant to stop getting it.

Once you have had it the skin is fragile and it can and will keep happening, basically I will need special care from Richie to keep me healthy and stop the wound becoming infected.

Heard that it was an infection of his pressure sores that killed the actor Christopher Reeve,
Richie is doing all he scan to prevent infections.

I have a healthy diet of lots of fresh vegetables, fruit, and oily fish: herrings, mackerel, anchovy etc and the occasional chicken curry.

Plus laughter and exercises all of which plus all the tender love from my darling Richie helps me to live and live well despite being in bed.

I am still very optimistic about life.

Still Looking Forward To Good Times.

Drive By Truckers

Sadly I have another open pressure sore so had to stop sitting right away yesterday until it heals again, hopefully before the end of summer.

My estimation is that this, like in January will take a few months so I guess summer will be well gone by then, but of course I still hope that it will heal before then.

Richie saw it when he showered me yesterday afternoon, we are both shattered by this discovery.

We are trying to regain our optimism which is difficult to do under these circumstances, both of us had a very bad night last night.

Every time I was nearly dropping off to sleep I would find myself thinking about this new wound and how it had happened and so quickly too.

This happened every time I woke up, each time I woke and each time I would try to focus on something else, would try to visualise a flower or a favourite place.

But each time I woke the first thing in my mind was the horror of another pressure sore in the same place.

What we both find very worrying is that we do not know how it happened; this is very worrying especially for Richie.

Had hoped to sit longer this time but after just three days I have to stay in bed until it heals again.

Sat exactly three times, the longest was four hours on Friday, each day there was no signs of there being anything wrong.

Hope that it heals up again soon and that I can sit for long enough to get out to see the market and other favourite places in Amsterdam.

We have plans to go to a Drive by Truckers gig at the Paradiso in November which would be brilliant for us both.

Really hope it can still happen, feeling very down today, what a difference a week can make, last Monday Richie confirmed that the skin damage had healed.

We were both very happy, looking forward to getting out of the apartment together and having a life outside.

This Monday I have an open wound and have to do my best to stay in the here and now and be optimistic.

Anything else would be not be good for either of us as we need to get through this with positivity.

Still looking forward to the good times that I hope are still to come.

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.

Visit From Ton.

It is an exceptionally cold day today, with a nasty easterly wind, and snow, which happened last night, just after Richie closed the curtains.

Shame that I did not see the snow coming down, love watching snowfall, mind you always hated how it looked after a few days in the city.

Shame that right now, I can’t go anywhere, not even for a quick look outside; mind you it is a touch too cold for me right now.

This morning all the snow was still here, heard very little noise outside so that was rather nice for us.

Meant we were not woken up very early by excited people, adults and children waiting for their course to start at the Fijnhout theatre across the road.

Have still not heard anything from the pigeons in the mornings, they are not being as loud as they often are at this time of year.

Think the unexpected cold snap has put them off starting their new breeding season, that and the fact that the anti pigeon stuff has been put down over all the guttering.

Good news that people visiting the building will no longer run the risk of getting pigeon poo all over their clothes as they arrive or depart.

So this year pigeons will not be shitting down our neighbour’s baby's bedroom windows or over their balcony and the kid’s bikes and toys.

Quite horrible to see this last summer, poor things every day they had to do a major clean up of their balcony and their windows.

Pretty dangerous stuff pigeon shit, can give you any number of unpleasant illnesses, salmonella is one of them.

Can't believe how difficult it was to get the anti pigeon stuff installed, took me about two years of emails to our landlord until they finally got the whole building done this year.

I feel pretty good getting this done; I shall enjoy it and hopefully will hear how much other residents like this improvement too.

Now there is no danger of being woken up early in the morning by amorous pigeons cooing all over the building.

Ton Peeks, from the Amsterdam Rehabilitation clinic,came by today to inspect my bottom, we were curious as to the progress, sadly this week was no noticeable change from last week.

I am not too surprised; recall how last year the healing of the pressure sore suddenly slowed down too.

It is frustrating but it has not made me feel depressed far from it I feel that I want to do my best to keep my spirits up.

Tomorrow is another day and who knows now Ton has suggested a lighter bandage perhaps the healing process will resume.

Mathilda will be here for my exercise routine and arm massage and Anne will pop by and visit.

A pleasant Thursday, one which I shall look forward to very much.

Still Can't Believe It.

Gareth with his Homegrown Onions and Photos From Wales.

Slept well last night and have taken it very easy today, still rather overwhelmed by the news yesterday that the pressure sore is healed up.

Almost still can't believe it so have been telling myself again and again that yes it is true, it has healed up.

Yippee it is healed!

Nearly 14 months later, seems unreal now but know only too well that is has been more than real.

So glad that I did not feel the full extent of the pain, Richie has told me that the wound was really horrible.

He said he had never seen anything so wide and so deep, so happy now that I did not want to see the photos.

It was bad enough having to stay in bed 24/7 and not be able to sit up even in bed on the air pressure mattress.

Feeling the full pain would have made it totally unbearable.

As it is it has been extremely difficult, Richie has looked after me very well, which made it easier for me to cope.

Glad it is coming to an end, but sad when I heard that the paperwork has not been sent to the Amsterdam City Council yet.

It is three weeks since the modelling session and we had really hoped that this week we would hear that the Summit could make the adaptations.

Have no idea when we will hear now, still hoping that it happens before the end of the month.

Whether I will be able to go the gig at the Melkweg is for now a huge question mark, as I need to start sitting slowly.

To begin with I can sit for an hour at a time and then a week later for another hour, so if I do not have the adapted chair a week before the end of the month at least then I can forget the gig.

I need at the very least three weeks to build up my sitting capacities so that I can be able to sit through the concert.

Shall do my very, very best to keep calm and try to get through these last weeks.

The friendship and support of all my friends has helped me to live through this extremely trying time.

Thanks to everyone who has supported me.

First Tomato and Good News.

Two good things happened yesterday, first Richie came in with our first tomato and let me eat it, it was delicious.

I had been trying since Monday, without success to get Ton, the nurse from the RCA on the phone, needed to know which day he was doing a house visit.

Then just as I thought Ton as not coming around , he turned up, which was good now neither of us had it hanging over us.

It was good that he came as there wa good news about the pressure wound, it is 2 mm, looks like a tiny cut.

Seems the end is really in sight, it is slower than we had hoped but it is happening and well as the tissue has built up nicely so the gap that was the wound has filled up well.

Ton was very pleased that the wound was looking so good and after chatting with us he left, promising to email me the precise date when he would visit again in two weeks time.

Brilliant news just what we need as tomorrow it is one year since I had to stay in bed 24/7.

Hate the thought of a whole year gone where I have not been able to go out, hate the restrictions.

Really hate it, but this year has also been good, I have met alot of good people via the Blog sphere.

My writing has improved and my arms have too because I exercise everyday and since this morning also use the weights that go around the wrists for added strength.

I feel better about myself, have had a year to look at my reactions to things and analyse my behaviour.

It has been a year of being very conscious of what I do have in my life, have become aware that despite the disability my life is good.

I have a great love with Richie, who is a sweetheart and looks after me so very well and brilliant supportive friends and two lovely dogs.

Glad I have been able to use the year well and realise and understand my situation much better.

Have learned to take things one step at a time, to stop second guessing, decided that I did not need to create stress.

Do not need to know everything that will ever be likely to happen, better to live for and in the moment and enjoy everything that I can enjoy.

Well in 15 minutes is our second appointment about the adaption’s to my electric wheelchair, we shall see what happens.

I am feeling quietly confident, can’t do more than that as it is a scorcher just as it was forecast.

They came before I could post, the meeting was very useful, the next appointment is with Summit, the company that makes made to measure seats and back rests.

So next week we will meet Elwin and we will find out more about how they make their product.

I am very excited about it now and have confidence that the wheelchair will be well adapted.

Have a good day, we are enjoying it very much.