Determined.To Enjoy My Life.

Andreas Nottebohm.

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

Not being able to lift or move my right arm, last night, after not having any problems yesterday, was a huge shock.

It was a surprise which I didn’t need right now, when I could feel again, how important my arm exercises are for me.

Tried to see if I could somehow still be able to do exercises, once my arms can’t move, that was my immediate thought.

I wondered if Richie could rig up a pulley, over the bed that would make it possible for my arm muscles to get stretched.

After a short time I had to admit that there was nothing I would be able to do, not without a motor or Richie’s help.

Feeling my arm lying woodenly and unmoving next to me was unnerving, it scared me a lot; I had been hoping to keep my arms active.

My right arm not being to move at all, was horrible, I had hoped that my arms would still be functioning next year.

Last night’s nasty shock, rattled me, for awhile my optimism was gone, and I did not want to go on, with this unequal struggle

That lasted for only a few minutes before I bounced back, determined not to waste any time fighting MS which I can not win.

Instead I intend to enjoy my life with my darling Richie and savour every precious moment that I can.

Getting Happy Again.

 

Clovis Trouille.
http://en.wikipedia.org/wiki/Clovis_Trouille

Strange feeling waking up and not moving, takes awhile before my left arm can even start to move, moving my left arm involves the right arm too, as if they are connected.

Moving my left arm to extract it from under the blanket, results in my arm getting briefly cramped up and the fingers painfully twisted together.

At the same time my right arm is folded tightly on my chest, my hand is in a tight fist, difficult to open, best not to do so before Richie has massaged my arms and shoulder.

Massaging helps to relax my shoulder, my elbow and eventually my hand too, then I can start to do my arm exercises which directly allow me to use my hands.

I think that the massage as well as doing my arm exercises has extended my arm/hand/finger function considerably, I am convinced about that.

As soon as massaging starts to be effective, then my fingers can be gently opened and I can finally reach out and grasp the handle above my bed.

This enables me to do my exercises, as soon as they are done, I can feel that my muscles were stretched out again.

I am now able to type and to write this post, which makes me very happy, Cyril is also happy today because marleen is here.

As soon as Richie brought Marleen home from the vet, Cyril got very happy again, it was sweet seeing him so sad because she was not here, we will know the result in a week

Forget About Tomorrow

 
Remembrance, 1931.
Clovis Trouille.
http://en.wikipedia.org/wiki/Clovis_Trouille

We are having a lovely week of sunshine this week, which is a wonderful surprise after a pretty dismal cool, rainy summer.

Lovely to get some pleasant weather at the end of September before it gets much colder and winter sets in.

I woke up suddenly this morning from deep sleep, no sure why I woke, maybe it was because I wanted to see Marleen before Richie took her to the vet for an operation.

Marleen has a tiny lump on her neck that needs to be nipped off; hopefully it will just be that, and nothing else.

It’s always worrying, until the call comes that tells us everything is fine, then we can totally relax.

Poor Cyril is miserable without Marleen, and now Richie has gone off to his driving lesson he in inconsolable, not even interested in the peanuts I dropped on the floor.

Funny, if Marleen were here he would be very competitive, but not on his own, he has just cried on his way to bed, where he is lying very miserable.

I have been quite introspective recently, not surprising given my situation, sometimes I need reminding that I am extremely ill.

The other reminder is that I need to focus on what I have, I need to be constantly reminded to forget about tomorrow, enjoy today.

The Positive Effects Of Clothes And Perfumes.

.
James Abbott McNeil Whistler.
http://en.wikipedia.org/wiki/James_Abbott_McNeill_Whistler

It’s amazing how it happens, but chances are as soon as Richie goes out I will need him, to help me.

Just now as the door had clicked shut behind Richie, I had a nasty twinge of pain in my guts; I think it’s the first sign of a bowel movement.

Richie is back now and is getting the equipment into the bedroom so I can be hoisted out of bed.

We were on time getting me out of the bed; I had a huge bowel movement all over the bathroom floor.

It was a huge relief for me, once it happened, shame it didn’t happen right over the toilet, great it did not happen in my bed.

A huge relief for me now, after a lovely hot shower and clean clothes I feel so much better now.

I am enjoying wearing more of a variety of clothes, Anja; a good friend altered a big bag full of clothes.

This has made a huge difference to my life and how I feel about what I am wearing.

I also bought myself 4 new gorgeous perfumes: Rive Gauche by Yves Saint Laurent, Woman by Versace, Magnetism by Escada and Little Darling by Kylie Minogue I am enjoying wearing a different perfume everyday.

Really enjoying looking and smelling like me again, amazing the positive effects of adapting my clothes and the perfumes have on me.

Decide For Myself.

Whistler's Mother.
James Abbott McNeil Whistler.
http://en.wikipedia.org/wiki/James_Abbott_McNeill_Whistler

 I was reminded by a blog friend, that not everyone has the right to have assisted suicide/euthanasia, I must admit that I forgot this fact.

Can hardly believe that this is true, but it’s the truth, I wonder how many countries do allow euthanasia.

Seems there are only a handful of countries such as: Belgium, the Netherlands, Albania, Switzerland, Luxembourg.

As well as three American stated: Oregon, Washington, Montana and New Hampshire are thinking about joining.

‘’It was legal in the Northern Territory of Australia between the years of 1995-1997, when the Territory's law was overruled by the central Parliament of Australia, which then outlawed euthanasia and revoked the Territory's self-governing rights concerning matters of euthanasia.

A bill is currently in the Australian Parliament which, if passed, would restore the Northern Territory's self-governance in that area.

Japan is currently the only country that has no law criminalizing euthanasia, although legislation is being considered which would spell out the country's legal view of the subject explicitly.

Euthenasia is legal in Switzerland. In fact many people from the UK (where it is illegal) travel to special clinics in Swizerland where the clinic helps them with Euthenasia. The Dignitas clinic being the most popular one.’’

http://wiki.answers.com/Q/In_what_countries_is_euthanasia_legal

Really dreadful that there are so few countries that will give their citizens the right to decide when they want to die.

I am indeed lucky to be living somewhere that allows me to decide for myself, I am glad that the Netherlands allows me to make up my own mind when the time is right and I want to die.

Time Is Preciously Finite.

Gayane Khachaturian.
http://en.wikipedia.org/wiki/Gayane_Khachaturian

Today is another pleasantly warm day like yesterday; happily that’s where the resemblance stopped as my body was not totally cramped up like yesterday.

I did feel it get tense and cramped up, just not like yesterday, what I felt then, was an extremely intense painful feeling.

All my muscles felt totally stretched as well as tightened right up, I had to struggle to breathe, every breath felt like hard labour.

One I hope never to feel again, it was scary as it seemed to be a look at what could be waiting for me; hopeful I won’t need to experience more.

Sadly I think I would have had to let my body struggle desperately for every single breath, if I could not request euthanasia.

I have requested it, so I know that whenever we let the doctor know she will come here and she will let me die.

Writing this upsets me very much, because I will need euthanasia to avoid the final stages of my Primary Progressive MS.

I am crying as I write, weird to be writing about dying on such a lovely afternoon, strange to contemplate.

Maybe it is good because it makes me even more determined to enjoy every moment that I can enjoy, totally aware that my time is preciously finite.

   

Visiting The Market Gives Me A Huge Boost.

Gayane Khachaturian.
http://en.wikipedia.org/wiki/Gayane_Khachaturian

This morning I had a really unpleasant waking up, it felt like all my muscles were cramped up tight, I couldn’t move or hardly breathe or do anything, couldn’t even open my mouth.

My jaws felt I was feeling the effects of high-speed travel, like g-forces were stopping me moving my jaws apart.

Trying to relax all I could seemed to make it, if anything much worse, after what seemed like forever it finally stopped happening.

It was frightening; afterwards I wondered whether it was nerves, maybe a panic attack about going outside this afternoon.

Somehow I doubt whether that could be the result of panic as it’s never happened before.

Despite being worried at times about going out, I have always overcome it and gone out.

So I think it due to   my muscles tightening up, will put it out of my mind and see if it happens again in the morning.

This afternoon Richie and I went to the Ten Cate market, the weather was good, no wind the temperature was a pleasant 25 degrees

                                        

It was very enjoyable, I do enjoy the sights, sounds, colours and smell of the local market, visiting the market gives me a huge boost.            

 

A Last Late Summer Weekend.

Gayane Khachaturian.
http://en.wikipedia.org/wiki/Gayane_Khachaturian

It’s a sunny day today, just as predicted on the weather forecast last night; I am happy, we will have a last summery weekend.

This will be extremely pleasant, nice to start autumn this way, looking forward to going out in the sunshine tomorrow.

Last night I watched Question Time on BBC 2, I was hoping for good debate, instead felt the panel were being somewhat patronising.

I was amazed, once again at what a great unifier a shared prejudice can be like the discrimination against the travelling community.

The panel were not in agreement about anything, except their shared prejudice against travellers.

I was astonished that anti travellers sentiment could unite such a disparate group of people together.

Liberal Democrats, Conservatives, Labour Party and others were all united against the travellers living at Dale Farm, Basildon, Essex.

Really was horrible seeing such unlikely allies putting the boot into a vulnerable group like the Dale Farm residents.

Seem like no one thinks they being prejudiced but they are, people constantly mention that travellers steal as if non travellers never break the law.

I think it would be much better for us all to live and let live, just as its better to enjoy the moment.

Enjoy the now, the present; don’t put off enjoyment for the future, that’s my motto now.

Seize The Moment.

Gayane Khachaturian
http://en.wikipedia.org/wiki/Gayane_Khachaturian

Last night I must have slept extremely well as I don’t remember much, hopefully my snoring did not keep Richie awake.

This morning I woke up quite suddenly with a small yelp as consciousness reached me at the same time as a leg spasm did.

Waking up to sunshine this morning was lovely, I enjoyed seeing blue skies and feeling the breeze coming in through the window.

My attitude towards autumn seems to have changed, this year I am not so upset that it is autumn now.

Still sad summer has finished, it’s always seems too soon, but this time I am enjoying noticing the changing of the seasons.

The changes would be more noticeable if we lived in the country, they are not so noticeable in a city, what is noticeable are the cars now the summer holidays are over.

My own changes, my MS progression has not been uppermost in my mind today which is pleasant almost like a holiday.

Good to enjoy the moments, I am happy to notice that I am getting better at grabbing those moments and appreciating them.

Moments are so important, never realised before how important it was to make the best of them all, glad I became aware of what seize the moment really meant.                              

Always Looking To Improve Life.

Gayane Khachturian.
http://en.wikipedia.org/wiki/Gayane_Khachaturian

This morning Richie got me up at 09.30, to go to the toilet, before putting me back in bed with the support cushion moulded around me.

I have a small piece of foam put behind my left shoulder; Richie tried many things to stop me from sagging to the left, before trying this, it seems to work well.

Nice to sit in one place without sagging to the left which has not been very pleasant for me, i have hated the feeling

Also hated having to keep calling Richie to adjust me, sometimes this happened every five minutes, he would adjust me, it would feel good for 5 minutes.

Then within minutes I would be almost lying on my side, before it would became totally unbearable, then Richie would be called for help.

Last night as well this morning I managed to remain pretty much in the same place as where Richie had sat me up in bed, thanks to the foam rubber.

It was good to sit confidently in bed, while Richie was away for two hours having a driving lesson.

I did enjoy sitting up, without any problems, nice not to sag instantly, even nicer did not need to call Richie to help me.

Richie really does make my life much better in every way, everyday; he is always looking to improve life for me.  

Really Will Stop Worrying Now.

Claude Cahun.
http://en.wikipedia.org/wiki/Claude_Cahun

Today I am trying to relax and not worry about my condition, nor am I going to monitor whether my hands, arms are getting any worse.

Certainly not now Richie has demonstrating to me that he can get me totally dressed without me doing anything..

I have been so worried ever since my arms have started to get weaker, because putting my arms around Richie’s neck so he can pull my tops over my head was getting very difficult.

Hated that I can only put my arms around Richie’s neck with help from him, he puts my arms around his neck, and then he holds them there until I can clasp my left wrist.

I had been getting quite concerned, how Richie would get my tops on once my arms got even weaker than they have already become, until they are totally paralysed.

Now I have seen he can get my tops on, I am no longer worried, not now I have been reassured that Richie will be still be able to dress me.  

That is a huge relief for me, as I started to wonder about what would happen when my arms became useless.

I even got panicked one day about no longer being able to do the few things I could still do, I got upset and freaked out.

Knowing Richie can do it has been very reassuring for me, now I really will stop worrying and relax.

 

        

No Interest In Conflict Resolution, Just In Conflict.

Claude Cahun.
http://en.wikipedia.org/wiki/Claude_Cahun

All day BBC radio 5 has been broadcasting on location, about the evictions at Dale Farm, in Basildon, Essex of the travelling community that live there.

http://www.guardian.co.uk/uk/video/2011/sep/18/dale-farm-eviction

Ten years ago local councils stopped providing sites for travellers; Basildon Council encouraged the group to buy their own land.

So they bought a piece of land, which had a scrap yard on it, they cleared this up and the group started to live there, they even got planning permission for half of their land.

Giving their children a good education was the reason the community wanted to settle, but from the minute they got there they had to put up with a lot of abuse.

 Blind, unthinking prejudice against the travelling community is evident in England, just as in other countries around the world.

I am continuously amazed that there is so much prejudice and discrimination against them and there are never any legal sanctions taken to stop this or punish people.

Racial discrimination laws do not seem to cover discrimination against travellers, if people treated any other group of people like they treat them, stiff sanctions would be imposed.

The travelling community are not allowed to live according to their traditions, as they want; they can travel but can’t park up anywhere as they will get moved on instantly.

Before the election last year, The Dale Farm residents were close to reaching a compromise with Basildon Council, since the Coalition Government is in power the talk is only of eviction.

The Conservatives and the Liberal Democrats have no interest in reaching any compromise; they have no interest in conflict resolution, just in conflict.

http://www.guardian.co.uk/uk/blog/2011/sep/19/dale-farm-evicitons-

             

’

EnjoyingThe Autumn.

 

Claude Cahun.
http://en.wikipedia.org/wiki/Claude_Cahun

Today it is obvious that the weather has changed, it has got cold quite suddenly, amazing really, last Friday it was too warm to sleep under a fleece blanket.

Last night, a mere week later it was already cold enough to sleep under my duvet; this is earlier than in other years.

I guess the thunderstorms and rain means the weather has switched to autumn now and any chance of another hot day like last Saturday is gone until next year.

Shame about that, very glad I went out last Saturday and enjoyed the balmy 30 degrees tee-shirt weather.

I am looking forward to warm weather again next summer, and trying as always to focus on the positive.

Thinking about next week is easier than next summer for me; I am hoping that I will be able to enjoy next summer, but who knows what will happen for anyone.

So I am not going to assume anything and when I catch myself wondering about what my future holds I will tell myself to concentrate on now.

Better to do that then give myself a hard time, I am getting better at not worrying but I do need to keep reminding myself.

In a day or two I will have adjusted to this abrupt weather change, and will enjoy trips out in the autumn sunshine.

Really Determined Not To Worry.

 

Claude Cahun.
http://en.wikipedia.org/wiki/Claude_Cahun

It’s been another dull rainy day, I watched football this afternoon, saw Arsenal lose their advantage over Blackburn and get beaten by 4 goals to their 3.

Shame they couldn’t play as a team a win, hopefully they will go away and practise being a team not a loose group of individuals.

No point being part of a team and not working as a team, when a team works well things get done, I have experienced good teamwork on a couple of IT Helpdesks I have worked on.

I hope the Arsenal football team soon learn how to cooperate, start to work together, enjoy their teamwork and begin to win their games.

When I was working I loved being part of a team, guess I do miss that very much, miss going to work.

These days I am part of a team with Richie, he does all the work while I cooperate as much as I can, which I am happy to do.

I hope that I will be able to do that for as long as possible, recently it’s been scary feeling my arms getting weaker and my right hand is often tightly, painfully clenched.

These days I can’t move the mouse anymore, I can hold it, after getting my fingers unprised and after I have held onto the side of the table, then I can transfer my hand onto the mouse.

I manage by using the keypad mouse to steer with my left hand and click with my right hand, its clumsy but it works, no point in worrying about the future, it will happen whatever happens, so I am determined not to worry, instead I want to enjoy.

Overcast Friday.

Claude Cahun.
http://en.wikipedia.org/wiki/Claude_Cahun

 Suddenly realised that I hadn’t written a single word for my blog, in fact I had not given writing it a thought, instead I was enjoying surfing the net.

I have been looking for another JR terrier to join our two happy dogs, Marleen and Cyril; I even found one in an animal rescue.

A Jack Russell pup, she looked lovely, she was born in March this year, sadly the internet page froze and I had to close the page, now I can’t find the dog anymore.

Once I have written today’s post, my dog search  will continue, who knows I may even find that Jack Russell pup again or another who also needs a new home.

We both think that Marleen and Cyril would be happy to have another dog join their pack; Richie likes the idea of finding another dog that needs a new chance, so do I.

Today has been overcast with occasional moments of brightness, no sunshine though not like yesterday

The lack of sun did not upset me, seeing as I was so relaxed today, I slept well last night, Richie got me out of bed at 09.30 so I could use the toilet.

Once I was installed back in bed, Richie went off for his driving lesson, two hours later he was back, which made Cyril happy, poor Cyril had been crying ever since Richie went out.

Right now after inhaling some mediwiet vapour my right arm is finally less painful, then it was for most of the day, it felt like my muscles were getting shorter and being tightened, finally my arm is relaxed, making me happy.

A Beautiful Sunny September Day.

Alfred Georges Regner

http://en.wikipedia.org/wiki/Alfred-Georges_Regner

My session with the physiotherapist, this afternoon,  was not easy because of the spasticity, the incredible stiffness in my right arm.

On Monday I could still touch my nose with my right arm, today I could only raise my hand as far as to my chin.

Not nice to feel and experience, this afternoon, I am going to try not to let it upset me; all I can do is stay cheerful and keep doing my stretching exercises with Richie’s help.

The new worry is that my left hand and forearm are also getting stiffer now, on the plus side,  I can still move my left arm freely and I can still type, although laboriously.

As long as I can write my posts, write and answer e-mails, read newspapers as well as surf the net and play free cell and solitaire I am happy.

Seetech software will allow me to do everything I want to, so I am looking forward to seeing the package Herman is putting together for me.

I can hardly wait to get the software and start to use it to write my posts, it’s good to know that there is software available when my hands stop functioning.

Hopefully once I read and; agree with what Herman has suggested, it will not be long to wait, think that I am going to be optimistic.

Today is a beautiful very warm September day, sunny and dry, nice for friends returning from their holidays in warmer places.

A nice goodbye to summer today, as the forecast is for high winds as well as a lot of rain, all because of the tail end of a hurricane, shame a sunny autumn is nice, but who knows it maybe still lovely.

   

Bravery Was Never My Ambition.

Homage to Stravinsky, 1976.
Endre Rozsda.

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

Strange sensation waking up in the mornings and realising that I can only move my arms with an enormous effort.

It makes me aware how much I have been taking things for granted, until I stopped being able to walk I never thought I would not be able to walk.

It’s a scary feeling waking up feeling my arms are stiff and painful, and my arms do not move automatically anymore.

These days arm movements need encouragement, I almost have to talk to my arms as I try to get them to move in the mornings.

Some days it feels like my arms are wooden, often I wake feeling enclosed, entombed which is extremely worrying.

I remember reading an article about a man with Parkinson’s in an old copy of Reader’s Digest; it was a moving story, of how he coped.

He talked to his arms and hands to encourage their movement and to direct his hands to pick up his tea cup and get it to his mouth, sometimes he did not spill anything much.

Those were the days, when there would be tea left in the cup for him to drink, I remember reading this in 1988, and being impressed and moved by how bravely he coped.

At the time I had no idea that 23 years later, I would also have to cope bravely with my own degenerative disease, being brave was not how I saw myself or imagined I could be.

Support Is Essential For Everyone.

 

Chagall's Parents.
Marc Chagall
http://en.wikipedia.org/wiki/Marc_Chagall

Today is not the day I hoped for, my hand/arm function is bad, worse than I expected much worse than yesterday.

I used valuable energy dealing with messages from a Face Book group to which I had been added, without my consent.

The friend that included me took my name right away off the list, of people who did want to join, as soon as I asked.

He told me  was shocked to bits, as he hadn’t realised that FB had changed their policy and no longer sent invites, how typical of them.

Which you can accept or reject; now you only get informed, one solution you can go to the group page and delete your name.  

What a relief once it was all sorted, I hope that the new FB support group does well and everyone involved enjoys the support and friendship.

I think support groups are excellent, I just did not want to join, I am happy wih my blog, it gives me the chance to post everyday and tell my story.

Which helps me come to terms with what is happening to me, writing everyday is good it stops thoughts and emotions from being bottled up inside.

My blog and other bloggers provide me with the best friendship and support, in fact for me it’s the best support group.

 

Not Worrying Is Better.

 
Norma Bessouet.
http://en.wikipedia.org/wiki/Norma_Bessouet

After a dreary start to the day the sun is breaking through which makes everything look better, despite it not looking nice it’s a warm day.

Today was the catheter change day, again it was easier, which is good, I hardly felt anything; Richie is getting very good at replacing the catheter every 6 weeks.

He puts a dab of KY jelly around the opening so he can slide the catheter out without causing me any discomfort, which works well.

He removes the liquid in the bubble; he always empties it twice as there is always abit of the saline solution left in the bubble after the first emptying.                

This can cause pain when pulled out, today I hardly noticed anything, at the moment Richie removed my catheter I breathed out.

It seemed to work well, and now it’s been done I am very pleased that I do not have to think about it until the next time in 6 weeks time.

I shall put the next date in my calendar then I do not have to even think about it for one moment, on the day I will get a reminder.

When I have posted this I will do my leg exercises on the Motomed, 40 minutes and after that I want to relax and enjoy the late afternoon sun.

This time I did not worry about it at all, which was brilliant, I am very pleased how well I am doing not spending any time on worrying.

This Wait Will Be Well Worth It.

 
 The City.
Alisdair Gray.

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

After only rainy cool, overcast days since Tuesday, it was wonderful to get such a warm, dry day as yesterday.

It was a bonus going out in my tee-shirt with no need for a jacket, every time that I can do that this month will be an enjoyable bonus.

I asked two lovely friends who can sew and have sewing machines if they could help out, by altering some clothes.  

Anja came by just now to collect a big plastic bag full of trousers and tops that she will adapt for me to wear.

Another friend Marianne will come by tomorrow and take away another bag of zipped tops and trousers.

When I get them back, it will feel like several Christmases and birthdays have all happened at once.

I am feeling pretty bucked up by this, really looking forward  to wearing clothes that have been impossible for me to wear since early 2007.

A lovely perspective for me to look forward to wearing favourites once more, brilliant to get back some pride in my appearance.

I will have to wait yet again, this wait will be well worth it, but I will be counting the days until I can wear my clothes

Always Looking For The Positive.

 

Vilhelm Bjerke Petersen
http://en.wikipedia.org/wiki/Vilhelm_Bjerke-Petersen

I was so happy the last couple of days about Richie’s ideas for adapting my clothes that I totally forgot to mention my appointment with Herman on Thursday.

The appointment was     so Herman could demonstrate the Seetech software that is operated by eye movement.

It was very interesting being shown how it worked, it is better than the head mouse software, no need to move my head and neck, just eye movements.

Herman is going to organise an application for Seetech, which will hopefully not take months for me to get, as I need it now.

I will try and remain optimistic that I won’t have to wait for ages, not easy right now as I have been experiencing alot of discomfort in the wheelchair and in bed.

The new wheelchair seat is being made, so that discomfort will be over in two weeks, I will make an appointment with Maurits, my occupational therapist to get his advice about the discomfort in bed.

The discomfort in the wheelchair is just manageable indoors, as the floor is a smooth surfaces, not so easy outside, and because I do not have the support I need, this means I get rattled and shifted around, not a pleasant experience.

This afternoon we took advantage of the weather being pleasantly warm and dry to go to the market, we had to pause every few minutes for Richie to adjust my position.

Again today it was noticeable that we are both still nervous; the memory of falling out of the wheelchair is still scary for both of us.

Nevertheless the market was wonderful; it was warm, t-shirt weather and the Greek stall being back was the icing on the cake.      

kleren aanpasen, Seetech software, Head Mouse software, nieuwe rolstoel kuip,ongemak in rolstoel en in bed, Greekse kraam

Pride And Self Esteem Are Important.

 
Vilhelm Bjerke Petersen.

http://en.wikipedia.org/wiki/Vilhelm_Bjerke-Petersen

Richie’s idea about adapting my clothes has already revolutionised my life; it has not only made it easier to put on and take off clothes.

It has also given me pride in my appearance again, which was very patchy, almost non-existent these past 4 years since I can no longer stand to get dressed.

This has been made worse by losing the muscles in my torso, due to being in bed for so long while my pressure sore healed.

Standing up is important in order to get clothes hanging and sitting well, not being able to do that means looking quite dreadful, like a sack of potatoes, despite Richie’s best efforts.

Having no muscles means I can’t sit up, so my midriff does not get stretched at all, it is compressed, so it looks like I have a pot belly and I don’t have one.

Not having Richie wrestling to get garments on and off will be easier for both of us, and it is great to look well presented again.

Pride in my appearance, gives me a lot of confidence, which helps my self esteem, and allows me to feel like a woman and not just like a severely handicapped invalid.

Before my diagnosis I was well dressed and presented, always wore well fitted trousers, I never wore jogging trousers unless I was jogging.

Since 2007 I have only been wearing baggy elasticated trousers, I have not wanted to see myself in the mirror, now I can look again, I no longer dread how I look and I can be proud once more of my appearance.

Lovely To Be Well Dressed Again.

 
 Vilhelm Bjerke Petersen.
http://en.wikipedia.org/wiki/Vilhelm_Bjerke-Petersen

It’s windy, rainy intensely gray today, on Monday Richie and I ate two big, tasty strawberries from our plant on the bedroom balustrade, we have had the plant for over 11 years.

It is a plant we had in the Haarlemmerdijk; we moved away in 2000, this plant has consistently produced good strawberries.

Richie has made a wonderful discovery, which will have a positive effect on me and my clothes.

Yesterday Richie cut the bottom out of a baggy pair of trousers; he also cut the waistband, cutting a large part of the bottom out of trousers means it is much easier to get them on.

Up to now a lot of my clothes have got ripped being put on me, I get dressed in the shower chair, Richie has to somehow pull trousers up over the hard plastic chair.

That causes strain on the clothes which end up getting ripped, better to remove than to rip trousers.

What is good about this is it makes dressing me easier for Richie and it means that my trousers will finally fit well again.

All Richie has to do is pull the trousers up my legs, then lay it over me up to my waist and tuck the sides and waistband around me.

This is a wonderful development; it means that I will be able to wear smart black trousers and black jeans again.

Beautiful prospect, not be bundled up like a poor invalid, it will be lovely to be well dressed again.

A Gray Wednesday.

Gordon Onslow Ford

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


We are having a more relaxed day today, the last two days there were appointments so I have been out of bed earlier, today I won’t get out of bed until later this afternoon.

Once Richie has done the shopping, he is also looking for additional kitchen cupboards, which are urgently needed, so that the kitchen is more efficient.

This morning it looked lovely, blue skies, sunshine, sadly once the curtains were opened, the clouds drifted back and it now looks like there could be more torrential downpours like yesterday.

The rain was so heavy our dogs did what they had to, and then they wanted to get back here as quickly as possible, I am sure they will be happier once they get to run, play, and bark to their heart’s content.

Cyril has become more relaxed, now he has been here for 8 months, which is very noticeable; he is showing every sign of liking his new home, Marleen and us.

And the good life he has here, walks everyday, toys every week, they are good for his confidence.

Confidence being built is the most important thing for Cyril, after nearly 6 years of neglect, no exercise, isolated at home.

He is a good quality dog, I bet they paid alot for him and then did not know what to do with him, one good thing they did was find him a new home, and not a moment too soon.

We got him just before he reached a critical stage; he had long nails, no walks/exercise for 3 years, malnourished, no muscles, he was nearly 6 and looked like a 9 month old puppy.

Better Being Calm.

A Present ForThe Past, 1942.
Gordon Onslow Ford.
http://en.wikipedia.org/wiki/Gordon_Onslow_Ford

Typically for this time of year, the weather has changed dramatically from hot summer on Saturday to very warm on Sunday as well as Monday to wild autumn weather today.

I woke up to thick cloud cover, alot of wind and rain today, with no chance of any sunshine, it was a rather abrupt weather change.

I am sure we will get some nice days after this wet weather front has moved away, it’s a shame this happened now, as a whole week of sunshine would have been excellent.

Instead it’s a rainy gray windy day, Richie is having his driving lessons and the two dogs are sitting by my wheelchair waiting for him to return.

Today is parallel parking, I am sure Richie will do it well, his driving instructor is pleased with his quick progress and so am I, it’s brilliant.

I am looking forward to taking trips out of town, it would be nice to find pretty countryside, I hope we can find some.

Anne came by to visit us briefly this afternoon, typically at the very moment she rang our bell, I had a surprise extra bowel movement.

Luckily this happened in the bathroom and just before Richie had pulled on my clean clothes, so no harm done, but it meant Anne had to wait for me to be ready.

Funny how almost blasé I have become about being incontinent, but then again, what would be the point of getting upset, there would be none, so better for me to be calm.

It Felt Like Progress Today.

Joan Erbe.
http://en.wikipedia.org/wiki/Joan_Erbe

 It, has been a good day today I feel like progress has been made which is a pleasant feeling, it makes a nice change.
After a nice shower Richie sat me in my wheelchair at 11 o’clock, ready for my appointment with Ruud from Summit and Maurits, my occupational therapist, from the Amsterdam Rehabilitation Clinic..

We contacted Ruud at 12.45 when there was no sign of him arriving, turned out he had complications at his other appointment and would get here as soon as he could.

Maurits had been here on time at 12, sadly he couldn’t wait for Ruud to arrive, however we discussed several things, which was extremely useful.

Maurits made an appointment with RDT Het Dorp for a gadget that would fit on my wheelchair and support my left arm which would allow arm movement, maybe even let me feed myself.

He also sent an e-mail to Edith, who is standing in for Annelies, to ask her to organise an appointment with Permobile, my wheelchair supplier, to investigate other ways of steering.

Ruud arrived at the same as Mathilde my wonderful physiotherapist who did a few exercises with me and massaged my neck, shoulders while Ruud set up his equipment.

Then Mathilde and Richie assisted Ruud in moulding the seat around me, this took an hour, it felt like it gave me much better support, finally I can sit up properly.

A first for me, I have not been able to do that since I had functioning torso muscles in 2008, I can’t wait for it to be made, it takes 2 to 3 weeks, Ruud will try to get it made in two.

Sunless, Cloudy, Hot, Muggy Sunday.

 
Joan Erbe.
http://en.wikipedia.org/wiki/Joan_Erbe

It was difficult typing yesterday, more difficult then I ever experienced before, the index finger had no strength, it went floppy so I had to type with my left thumb.

It took hours for me to write 200 words, something that usually I get written in 30 to 40 minutes not 4 hours like last night.

Very frustrating, fortunately I have the appointment with Herman this Thursday to try out Seetech, software controlled by eye movements.

Dragoon voice recognition software and Seetech will be how I shall be able to keep writing, keep in touch with friends and feel in touch with world news.

It is worrying noticing that my hand function is getting weaker, I need to be realistic and not fight the progression.

Instead I am going to use anthing I can to help me being able to keep using my laptop, that is something I need to do..

As long as I have any hand/finger function I shall use my hands, good to use everything I can use.

I intend to keep doing my arm exercise for as long as it is possible for me to do, even with Richie’s help.

It’s good to keep going for as long as I can.

                    

Good To Confront My Fear.

Joan Erbe.

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

Yesterday was a nice warm day, but today was even better, beautiful and sunny; it must have been about 30 degrees.

My first trip out to the market since I fell out of the wheelchair crossing the road coming back from the Ten Cate market on 9^th June.

It was wonderful being outside once again I really enjoyed going out, we even bumped into Marianne, a friend, on the way.

This was just after we crossed on the crossing where I fell in June, my shoulders were rigid with fear remembering falling, but we did it, we got there.

It was very enjoyable, later Richie told me I had grinned all the way around, looking at all the colourful stalls.

A great trip, even if my favourite stall, the Greek one was not yet back from holiday, shame we both fancied eating olives, stuffed peppers and vine leaves.

I was so happy being there, I didn’t want to waste time bemoaning what wasn’t there, not when I was enjoying myself so much.

Not enjoyed myself as much in ages like this afternoon it was brilliant, good to confront my fear and be successful.

I am glad we went out and enjoyed the unexpected bonus of what may be the last hot day for this summer.

Actively Involved.

Joan Erbe.
http://en.wikipedia.org/wiki/Joan_Erbe

Today has been lovely, warm and sunny, as if to give us one last summer weekend before the cooler autumn weather starts.

I just heard the weather forecast for next week; apparently it will be much colder and wetter, always amazes me how quickly that happens every autumn.

The Fijnhout theatre across the street, are busy tonight; they are having a performance and a party to start their autumn season.

It was good to find out recently that the theatre will not be redeveloped into a hotel and discotheque.

At least not in January, but who knows what will happen next, I have found out that the local papers and the local council know nothing about a hotel.

I also got good advice from the local council’s Planning Department, to keep an eye on their website for future planning applications, that’s good advice.

It felt good to find out what was happening with the theatre, very empowering, better to be proactive than just worrying about what was going to happen next.

Much better for me especially right now when I am feeling so powerless, good to realise that being severely handicapped does not stop me being able  to be actively  involved.