Sunday, July 31, 2011

A Sunless Sunday In July.

Still Life.
Alfano Dardari.

Today is another cool grey overcast sunless day, such a shame we are not getting a pleasant summer again this year.

Spring was gorgeous so probably should not complain, as I did enjoy going out in a t-shirt without many layers of clothes. 

I prefer going out in less layers, as they take ages for Richie to put on me, they add more than 30 minutes to every journey.

Its quiet here right now, it is summer holiday time, the Fijnout theatre is closed, so no loud parties not until September.

Willis, our ex neighbour told me that because of the cuts to public spending, the theatre like many others is losing their subsidy.         

The Fijnout theatre will fuse with another theatre, they and everyone else will
move out.

The building will be sold at the end of the year and in January it will be rebuilt, refurbished and turned into a hotel and disco.

What a shame that terrible mismanagement and now the cuts have finally closed down the last remnants of what was once community based projects.

Apart from the theatre, there used to be a printer’s workshop, cycle repair workplace, a computer collective and a community café, the Fijnhout is the last to go.  

Saturday, July 30, 2011

Hindsight Is A Great Thing.

Miguel Cubiles.

I recently discovered that the passing of time no longer worries me, the days of the week flash by me in bed or wheelchair.

Time passes, the days they go by extremely quick, weeks zoom past, it used to concern me, not now.

Now I that I do not need to do anything but enjoy my life, it may not be as full a life as I once had before MS incapacitated me, but it’s mine.

Somehow having this horrible disease means that life is now more precious to me than ever before.

I spent too much time worrying about what was going to happen next, I can see now that spending so much time worrying about the future was a waste of my time.

Much better to have enjoyed the moments, because they never come back, everyday is  unique, it will never be repeated.

I think it would have been better not to get so caught up in worrying about what was to come, that daily life got forgotten.

Hindsight is a great thing, if I knew then what I know now I would do everything differently, I would have enjoyed every moment I could.

Some good things have come out of this time, such as a determination not to reproach myself and to enjoy the here and now.


Friday, July 29, 2011

Just Not So Soon.


Dark Fire 1980
Oil on canvas
©National Trust/Ithell Colquhoun bequest
Courtesy of Royal Cornwall Museum

Ithell Colquhoun

When I woke, I was not sure that I would be able to move my arms, for a minute it felt like no movement was possible.

I had to face the facts and accept that my arm movement may stop and scarily this seems to be starting to happen now. 

I was relieved when I managed to get my left arm clear, then I could slowly get the right arm out from under the sheet.

Doing this took minutes; luckily I managed to move both arms without my arms or body totally tensing up.

Difficult to describe what happens when my body tenses up and becomes cramped up, it’s very painful; it takes awhile before my body relaxes again.

I am trying to take these developments calmly, this is not easy, I am finding it very difficult.

Not surprising as being able to move and use my arms is something that like everyone, I took for granted.

I am realising now that this function will stop working, horrible to know that this will happen soon and become my new reality.

I am scared about this, I have been aware for awhile that my arm function would get worse, then stop totally, just not so soon.

Thursday, July 28, 2011

It's A Shocker.

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.

Wednesday, July 27, 2011

Important For Me To Keep Going.

Bryan Charnley.

The sun is trying to break through the clouds today, sadly apart from a promise of sun nothing is happening.

We could really use some summer weather; yesterday I was wearing a fleece top that I usually only wear during the winter.

That was the only way that I could be warm enough, sitting adequately dressed is important for my comfort.

Being comfortable is important, whenever Richie adjusts my body position; we are both aware that my clothes need to be checked out for wrinkles.

Each wrinkle I lie on will after awhile feel like I am lying on a knife edge, which is very painful, especially after several hours.

Quite often it is not obvious right away that there is a problem after being moved, then we give it 5 minutes to pinpoint where the problem are and then Richie adjusts.

So much for thinking that not being able to move meant exactly that, because it doesn’t, my body is constantly moving, all involuntary movements.

Strange all those movements when I can’t move when I want to, I am starting to notice how stiff and unresponsive my right arm is.

Richie has to massage my arm so that I can grab hold of the handle above my bed to start doing my arm exercises, it’s so important for me to keep going.

Tuesday, July 26, 2011


After waiting for over two weeks for the appointment from Welzorg, I got a call from them this morning to arrange an appointment.

The woman that called was very friendly, when she mentioned my falling out of the wheelchair, I recognised her voice.

I spoke to her when I called Welzorg, to thank them for their quick work unbending the bent table support on the wheelchair table.

She was amazed that I was calling her to thank her; she told me that she had never once been thanked in 5 years of working for Welzorg.

That is a shame, this convinced me that thanking people was a good thing to do; I have no problems complaining, so I need to be aware that saying thank you is good.

It is important, not just to complain but to remember to say thank you, when it is in order, this morning’s call from Welzorg was proof that making that call was well worth it.

Nice to get a friendly call, especially from Welzorg who are not known for being a friendly company.

Today I got a mail from Maurits, my occupational therapist; he is standing during Johanneke’s illness.

He has made an appointment with Quattron’s Dennis Klein, to see what adjustments still need to be made, so that the support cushion will support me adequately.

Monday, July 25, 2011

Looking Forward Now, Always Looking Forward..

Gunther Gerszo.

It is Monday again, seems almost too quick, I guess that’s because I am sixty and have experienced a lot of weeks.

Time seems to have speeded up, a week is not as long as it felt when I was at school, then it felt like a month.

A year was forever then and almost did not bear thinking of; contemplating my birthday in March, around May was a very long wait.

Having done the administration with Anja recently has enabled me to relax and enjoy life.

Right now I am doing just that, relaxing and enjoying the sight of the wood pigeons ‘’sneaking’’ into their nest just across from my bedroom window.

I enjoy the things I see/hear from the bedroom windows, the birds, the kids playing football, people singing, playing drums at the Fijnhout theatre.

 These are some of the things that gave me a feeling of being part of this neighbourhood, despite being in bed for such a long time from 2008 to 2010.

Looking back now its quite incredible that I had to stay in bed for so long, I almost can’t believe that it happened and I survived.

Amazing that I managed to cope so well, so glad it’s in the past, looking forward now, always looking forward.

Sunday, July 24, 2011

Dark,Cool Rainy July Sunday

Bernard Dumaine

Today its another cool, grey, overcast rainy day, it could be any other time of the year, Richie says it reminds him of summer holidays camping during his childhood.

Memories of picnics in the car because it was too wet to get out, I remember them well, of sitting in cars with steamed up windows not being able to see much outside.

Remember well the arguments between my parents, the unpleasant silences, and my discomfort.

Funny how memories come back like that, I have many memories of going for day trips in England with my parents.

Of being quite worried the whole time, if my parents were having a good day the trip would be enjoyable otherwise I had to watch out.

I heard from friends here who are on a camping holiday now, that they have had lots of rain and it is very damp and cool.

I hope this coming week will be better weather for them, so they can have a relaxing time for their second weeks camping trip.

After the tragic news from Norway, of many lives lost, of youngsters having their lives snatched away.

Yesterday there was the sad news of the death of soul singer Amy Wine house; she was 27, a huge talent, of which only a fraction had been heard.

Such a waste of youth and talent, all of them are such a huge loss to their families, friends and communities.


Saturday, July 23, 2011

Tragedy In Norway.

No Man's Land, 2002.

Yesterday was one of those days when violent spasms alerted us that I needed to be taken to the toilet.

Seems to happen at least once a week, Richie described MS turning me into python woman, I eat get a tummy and have a huge bowel movement every few days.

He has painted a charming picture of me lying in bed with a protruding stomach, a lovely image.

It Saturday again, I have been enjoying having another relaxed start to the day, it is noticeable how much better I am sleeping since getting the mediwiet.

I slept until 10 and did not even hear Richie moving around, an involuntary movement caused my whole body to contract, all my muscles tensed up in unison.

This happens everyday, today it happened too many times, one after the other which made sleeping exceedingly difficult.

I did my best but eventually gave up and called out to Richie, who I heard cry out in great distress.

Richie had just heard on the radio that the gunman in Norway had killed 84 kids on the island where they were attending summer camp.

What a terrible thing to happen, first the huge bomb blast, then killing kids, despicable acts of violence, he has wiped out a generation of youngsters setting out on their adult lives.

Friday, July 22, 2011

Mediwiet/Cannabis Is Better Than Valium.

Mixed Media On Canvas
“Eclipse Annee 2000” earned $26,070.
Enrico Donati.

Just spoke to the doctor’s assistant to check why the mediwiet was not brought here yesterday.

Seems they had a problem with their internet and had not received my request, either by e-mail or on their website.

The prescription would be sent right away, I immediately phoned Hannah Gomes, our chemist and asked if the mediwiet/cannabis would be indeed be delivered today.

She told me that I would have it between 17 & 18 today; this is a relief, good to know that the mediwiet will be here later today.

This is confirmation that this will be a regular occurrence and not a one off; I am probably being too suspicious.

But this is learned behaviour, as I have often been disappointed by burocrats and did not want to experience this again.

I was suspicious that the permission to get mediwiet free on prescription would be perhaps limited, but now I knew it will be delivered I feel reassured that it really is for the entire year.

Next year I will get this authorization for 2012 which will make life abit easier, since I have had the mediwiet I have not used Diazepam or Lormetazepam.

This has been good, I prefer not to use valium, remember only too well how long term use, disrupted my mother’s and our lives.

Thursday, July 21, 2011

Not The Only One.

Ricardo Lacsamana
My ears were rinsed by Dagma, our doctor; I had been worried about this, but was reassured by Dagma.

Now I can hear again, which is brilliant, this is the first time since May that my left ear works.

Really good to be able to hear with both ears; I am happy I do not have to constantly ask Richie to repeat himself.

Despite not much dirt being rinsed out of my ear, when Richie dried my ear by putting a piece of tissue in the ear it came out dirty.

Whatever is clogging up my ear is still there, I shall get Richie to repeat the cleaning after his driving lessons.

Mathilde, my physiotherapist will be here at 14.30, for our exercise session, I am looking forward to it.

Sadly the weather is not sunny; hopefully it will stay dry and not rain until after midnight and stop at daybreak.

Typically when Dagma was here just now I forgot to speak to her about a couple of other things, this often happens to me.

If I do not have it written down in front of me I will forget, sometimes everything, I am sure I am not the only one.


Wednesday, July 20, 2011

Day Trips Out And About.

Antonio M. Ruiz'

I am feeling really optimistic and happy today; this is because Richie had his first driving lesson yesterday.

He is hoping to do the driving test in three months, then we can get a van and get out for trips.

We can either lease or buy a van, I am all in favour of leasing, Richie wants to buy, he saw a black/red one, my favourite colours.

In this van I can sit next to the driver, which will be good, nice to see where we are going, lovely to get a good view.  

Prefer being able to see out of the van, I have been in some mobility buses where the only thing I could see were shop doorsteps and the back of the drivers head.

A frustrating journey, all the more as it was through a part of Amsterdam I had not seen for years and I was looking forward to seeing again.   

It would be nice to be able to get out of town when we feel like it, it will be pleasant to wake up and plan a day out.

I would like to start early one day and drive to Germany, be nice to visit Aachen, buy a packet of Aachen printer, a gingerbread biscuit which is a speciality there.

In 1963 I was at convent school in Eschweiler, next to Aachen where my’ mother, uncle and my grandfather lived

Tuesday, July 19, 2011

Phone Hacking At The News of the World.

Mario Bencomo.

I am listening to BBC radio 5 to the House of Commons Select Committee interviewing Rupert Murdoch and his son James.

Before them was Assistant Commissioner of the Metropolitan Police John Yates and Sir Paul Stephenson, the Commissioner of the Metropolitan Police.

Listening to Stephenson made me wonder how he got his position as he seemed extremely incompetent; he kept saying he did not know.

By the sound of it he did not want to know, he is a policeman, who should be checking things out.

Paul Stephenson saw nothing wrong with his second in command John Yates being friends with an ex News of the World editor Neil Wallis.
Both men will go to the Independent Police Complaints Commission for the way in which they handled the phone-hacking inquiry.

Yates will be questioned over why he failed to tell the culture select committee or the home affairs select committee that the former deputy editor of the News of the World Neil Wallis had been employed by the Met as a strategic communications consultant. 

He had been cross-examined in detail by the MPs Tom Watson and Jim Sheridan over his relationship with Wallis, but did not mention the contract or his friendship.

Nobody asked the obvious question whether Yates’s friendship with Wallis didn’t make him the wrong person to investigate phone-hacking at the News Of The World as he did in a limited way in 2007 and refused to reopen in 2009 despite new evidence.                                                                                          


Monday, July 18, 2011

Everything Will Get Sorted Out.

Mattia's Visions.
Norma Bessouet.
Waking this morning to discover that I could not hear anything with my right ear was not pleasant.

Richie cleaned it for me, we were both amazed how dirty my ears were, luckily I can hear once again.

Our doctor will come by on Thursday to syringe my ears; Richie thinks that would be the best, this too is the result of MS, as I can no longer clean my ears.

This will be the first time this is done, really hope it will clean my ears, as it would be great to hear clearly with both ears.

Now my right ear is working again, I feel better, not hearing anything clearly was worrying, quite upsetting actually.

I got a touch over dramatic, felt overwhelmed, my ears, my glasses are falling apart and I need someone from Welzorg to straighten the support bracket under the table.

None of these things are dramas, just for a moment they seemed to get to me, glad I remained calm.

Can see now that everything will get sorted out, one by one, now my right ear is ok I feel more confident.

Today’s weather has not helped; it is cool, gray, overcast and raining, the weather forecast is for cooler autumn weather and rain   

Sunday, July 17, 2011

Laugher Is Good.

 Pierres, 1960.
Jean-Claude Fourneau.

We were up late again last night, neither of us could stop talking and laughing, Richie invariably will tell me a joke every night just as I am trying to swallow my baclofen tablets.

Swallowing tea is not compatible with laughing and nearly always results in me not being able too anything but laugh.

Often laughter can trigger off spasms and it makes my arms as well as hands go rigid, never realised before that laughter could be so painful.

It also upsets Cyril, whenever we laugh or are loud he gets worried, he leaps out of his bed and starts playing with his toys.

Perhaps he wants to distract us, to try to stop our laughter, it usually does the opposite makes us laugh even more.

Poor Cyril needs a cuddle which Richie provides, Cyril lies right against him, pressed up close and growls the whole time.

We have never had a dog like him before, we will probably never know whatever made Cyril so worried, all we can do is give him a good life now.

After 6 months here with us he is more relaxed, happy and seems to like his new life with us and Marleen.

In time he will be more relaxed and really enjoying life, we are happy that we gave Cyril a new life.

Saturday, July 16, 2011

Beautiful Memories.

Joan Erbe.

Today is a grey, rainy but calm, relaxed day, no spasms warning me that I need to be got out of bed quickly which is nice.

Richie fed me delicious raspberries and a small banana; they remind me of the small bananas in Trinidad.

There was a tree outside my bedroom window; we called them bird bananas because the birds always got there first when they were ripe.

Every time I would find the tree covered in birds and would have to run fast to get any as the birds could eat quickly.

Before you knew it all the fruit was eaten and we would all wait for the next time, sweet memories of Trinidad

Still find it amazing that we had banana, coconut trees and pineapple in our garden there, we had family as well as friends who had mango & avocado trees.

We knew people who had cashew nuts, cocoa pods, people who fished regularly; we had chickens and grew some vegetables like pumpkin, spinach, tomatoes, aubergines and herbs.

I remember helping bringing in the fishing net at the beach, joining in with other children and thoroughly enjoying myself.

Also remember helping friends collecting their lobster pots, at their large families beach house, the lobster curry for lunch was delicious, beautiful memories pleasant on a rainy day like today.

Friday, July 15, 2011

Never Be My Favourite Moment.

Shoji Ueda 'Composition' (1937)
Image courtesy of the Tokyo Metropolitan Museum of Photography

Kansuke Yamamoto.

Summer seems to have come back; sunshine and blue skies are gorgeous as are the happy street noises drifting in the open windows.

Richie is going to get me out of bed quickly because I had a huge spasm just as he was leaving to go shopping.

It means I need to go to the toilet; the spasm and subsequent feelings of something about to happen are an urgent warning.

Neither of us wants me to have an accident in bed; Richie put the heating on right away so we can go.

 Richie got me into the bathroom, sadly I pooed on the floor as soon as he pulled off my underpants.

This has happened so often now, luckily I am no longer ashamed, now I know Richie will shower me and I will feel better again.

It will never be my favourite moment, but it is good to know Richie will sort everything out.

Seems that every week there is one day where I have one huge bowel movement, often starts to happen without any warning.

This is obviously happens because I can’t walk, don’t have good muscle control; don’t process food as efficiently, all because of my MS.

Thursday, July 14, 2011

MakingThe Best Of Everything.

Medusa Sky.
Jan Wheeler.

Today is a very unpleasant looking day, it has been raining since yesterday and it looks like it could be February or November.

It does not look like summer not right now; maybe this cooler weather is better for me as it’s often 30 degrees or more this time of year.

Seems a shame not to see blue skies and lovely sunshine at this time of year, instead its a grey day.

But this year summer seems to have happened in the spring and now it feels like autumn.

Guess we will make the best of it, and enjoy everything we can enjoy, just now I enjoyed my physiotherapy session with Mathilde.

Yesterday there was a surprise in the post, a card from Quattron apologising for the delay in getting the support cushion.

Amazing to get an apology here in the Netherlands and a written one too that is quite incredible.

I think I will keep this card, maybe frame it, as this really is quite amazing to have received a card.

After I post this I shall read the newspapers online and do my leg exercises when Richie returns from the Chinese supermarket with fresh Tofu,Tempe and other delights.

Wednesday, July 13, 2011

Use My Time And Energy To Enjoy My Life.

Lesbia Vent Dumois.

This morning Jacqueline, my case manager called me to talk about my air condition application.

Seems she had spoken to somebody from the department that gives the permission for such applications.

Apparently last week they already decided on a negative response, this was before I had even sent in my appeal.

I hope that they look at my appeal with an open mind, but they seem fixated on us having blinds as well as awning.

Blinds won’t work here because our windows are floor to ceiling, we have 11 such windows and we do not get much direct sunshine, not after 10 am.

Jacqueline says I should monitor the temperatures and include this information with my application for next year.

Oh well I shall put it out of my mind and not let it dominate my life, I have let that happen too often now,

It’s been good to think things through, to realise that getting worked up and upset is a huge waste of my time, energy.

Getting upset about things that I cannot influence or change is not what I want to use my time and energy on, I want to relax and enjoy everything I can enjoy.

Tuesday, July 12, 2011

It Puts Everything Into A Better Perspective.

Lesbia Vent Dumios.

Today started sunny then got overcast and started to rain and by the end of the afternoon it was not so pleasant.

Marianne phoned to check it was ok for her to come by for a quick visit, I was delighted and she came here for a cup of tea.

Very nice to see her, it has been ages since I saw her, Marianne’s hours have changed so now she works from 10.00 to 18.00.

This means she can’t visit me in the afternoon anymore which is a shame as we used to enjoy our afternoon visits.

It used to be fun going to the market with her on a Tuesday afternoon; perhaps we will go there again soon.

It was good to see Marianne this evening and to see how well she looked, the dogs got very excited to see her.

So much so that Marleen jumped up on the sofa next to her and cuddled up to her, sadly as soon as Richie picked up his camera to take a photo she jumped off again.

A real shame as it would have been a great photo, typical of terriers not to cooperate at the last moment.

Since I have got the mediwiet last Thursday I have slept well every night which has been wonderful, it puts everything into a better perspective.

Monday, July 11, 2011

It Feels Good To Overcome My Fear.

Lesbia Vent Dumois.

Today is a changeable day, clouds come and go, when they go the sun comes out again which is lovely.

Mathilde, my physiotherapist was back from her summer holiday in Slovakia, it was good to see her again.

It was pleasant having a break of 3 weeks from my physiotherapy, equally nice to have a physiotherapy session again today.

After Mathilde massaged my shoulders at the end of the session I felt much better, having this done has become an important part of my daily routine.

Richie does it several times every day, it seems to have a very positive effect, last thing at night  a shoulder massage helps me to sleep well.

I am feeling pleased about myself today, because I got an e-mail with a 8 page form to fill in, this is to apply for a 2 year extension of my Carer’s Allowance.

The allowance pays Richie to look after me, so I am glad that I quickly put my fear of forms to one side and did it.

Luckily I could open the attachment and fill in the form digitally, then print it out with no problems, Richie put it in the post box, so it will be there tomorrow.

It feels good to overcome my fear and get this done, even better to acknowledge and accept that I can do well.

Sunday, July 10, 2011

Happy Sunday.

Cyril in Rembrandtspark 9th July 2011.
Today is another relaxed day, I am sure this is all thanks to Anja’s visit yesterday and her helping me with my paperwork.

Felt so good last night to be free of stress, realised again that getting upset so often about things I can’t influence is a waste of my time and energy.

I hope that this fact will finally sink in, so often I find myself getting worked up by events that I can not influence.

So if that true I intend in future to stop getting upset and try to focus on things that I can do something about.

I feel more confident that I will be able to stop myself getting upset about things, events that I can not change.

The other thing want to stop doing is reproaching myself, and giving myself a hard time, as I do so frequently.

When I got the letter from Agis that I would get cannabis on prescription instead of just being happy at this success, I had to reproach myself for not writing sooner.

As soon as I reproached myself I became conscious of what I was doing, instead I concentrated on enjoying the incredible good result Anja’s letter achieved.

Feels so much better to give myself credit for getting things done, without immediately giving myself a hard time.

Saturday, July 09, 2011

It's A Pleasant Day Today.

Le cortège de Vénus 1949
Alberto Martini.

It’s a pleasant day today; my good friend Anja came by this afternoon, which was very nice, always good to see her.

She helped me with some administration, feels good to do this on time and in the post, nice to get these things done.

Richie has done some alterations to the cushion, it is much better now; he has taken some of the filling out of the cushion that stopped my right arm from moving.

There is abit more remodelling to be done, Richie will take some more filling out of the pillow end and put it under my left elbow, as that needs building up.

Brilliant Richie can remodel the support cushion; already it is so much better to use noticing the difference Richie made yesterday has changed everything positively.

It feels so much better to use the support cushion than it did right away, I am so fortunate to have Richie adjust it for me.                            

I am feeling relaxed now, Anja has gone home, Richie took the dogs to the park for some running and playing.  

While they are gone I can write my post and enjoy the sunshine on the street and the happy relaxed sounds from the street.

In awhile I shall watch some of the Women’s World Cup in Germany with Richie, we watched some last week which was very good.


Friday, July 08, 2011

A Pleasant Perspective.

The Workshop of Dedalus
1939, Masson Collection

Andre Masson.
Yesterday late afternoon the chemist brought my mediwiet/medicinal cannabis which was a wonderful surprise.

It is good quality weed, a Haze which is excellent for relaxing my painful muscles; the weed gave me a great night’s sleep last night.

Brilliant that finally the effectiveness of cannabis is recognized for some diseases such as Multiple Sclerosis, ALS, and Cancer.

Shame not also for depression, as I am sure THC is better than opiates and their side effects, but who knows how things develop.

Yesterday Percy from Welzorg came by with a bigger handle for the joystick, sadly it was too big, Richie is working on a solution.

The good news is that next week Welzorg will pick up my wheelchair and take it to their local workshop to move the base of the w/chair to make it more stable.

If possible this would make going out less worrying, knowing that the wheelchair was safer and less likely to tip forward again.   

I got a call asking if I would be interested in a new adapted ground floor apartment with garden that was just being built.

This neighbourhood is lovely and if we had a garden it would be perfect here, so this call gave us both a boost, it’s a pleasant perspective.

Thursday, July 07, 2011

Listening Is Good.

Andreas Nottebohm.

It is day 3 with the new support cushion; it is good, but as yet not good enough.

The top of the cushion has been slightly altered by Richie, but needs more tweaking to get it really good, right now I am disappointed but will persevere.

It is early days still, the only way for things to be improved is to use the cushion and note the problems that need looking at.

The material is too warm; the cushion behind my arms is too bulky and needs reducing as I can’t move my arms.

At the moment I can not stretch out my right arm or move my elbow which makes everything more difficult for me.

It is upsetting that after waiting 5 month and one week the support cushion is not providing me with what I need.

Frustrating that this has happened, sadly it is not the first time, it shows again that it would have been a good idea if they had listened to what I needed.

Seems to me, that money gets wasted by not listening and reacting quickly to the needs of disabled people.  

I am fed up, and I bet others are too with getting aids too late, or getting things that are no good, shame there is so much waste especially when resources are stretched.

Wednesday, July 06, 2011

Testing Of The Support Cushion.

Cy Twombly.

Last night I used the new support cushion for the first time, after Richie reduced the size of the pillow.

Sleeping was difficult, I am well aware that I need to get used to every new bit of equipment, just hadn’t expected to be quite so enveloped by the cushion.

I shall give the support cushion lots of use before I say something about it to Johanneke, my occupational therapist or to Quattron.

Last night was a rotten night for me, lying with the support cushions all around me, which made me feel claustrophobic.

The material covering the large cushion is towelling which is too warm, I discovered that despite being totally surrounded by cushion, I still needed adjusting.

I was hoping to sleep well, especially after the support cushion was brought, sadly this did not happen.

I felt really tired but could not sleep, my arms were too high on the pillow which resulted in strained neck muscles and shoulders.

Plus despite being enveloped by cushion it could not stop my body moving or my pelvis twisting around, I am going to test it out thoroughly before giving my verdict.

Of course I was hoping it would be perfect, which it isn’t right now, but it can be in due course.

Dennis Klein from Quattron, Johanneke my occupational therapist, Quattron's support cushion

Tuesday, July 05, 2011

Life Is So Much Better Without Valium.

Orakel und Spektacle (1960)
Unica Zurn.

Yesterday I received written permission from Agis that I can get mediwiet/cannabis free on prescription.

At 14.50 I phoned the doctor and asked for my first free mediwiet prescription, she said she would send a fax to the chemist.

I hope to receive 4 tubs with 5 grams each of fine Haze cannabis either tomorrow or Thursday.

Be great if this all goes smoothly, I hope it does as it will make my life easier, be nicer to not have to use any opiates such as Diazepam and Lormetazepam to relax or sleep.

Much better if I can use Haze, no side effects as well as no anger of nasty side effects which can happen, especially with Valium.

This is an unpleasant drug that is very addictive, like Temazepam sleeping tablets which I used for a year every day.

Until Richie suggested he made me a cannabis bonbon at night to help me sleep, this worked very well.

The doctor was relieved as she was concerned that I was getting addicted to the Temazepam sleeping tablets.

I felt so much better too once I had stopped and now I want to make sure that if I use a sleeping pill it is an emergency not a regular occurrence.