Access denied-living with multiple sclerosis

Sunny and Blue Skies in November.

2009-11-14T16:16:00.005+01:00

Autumn.

Seemed to be drifting off to sleep only to realise hours later that it was not happening so woke up Richie for some help.

Soon went off to sleep and slept until 11 am which was very pleasant indeed, woke up dreaming about making bread out of black eyed peas!

A strange dream, though guess you could add black eye peas to bread dough, but would I really want to do so.

Did have a space chocolate but it did not seem to have any effect, so after several hours of sleep not happening, got Richie to give me a muscle relaxant tablet, which seemed to work reasonably quickly.

Richie says I seemed to go off to sleep quickly after the tablet, wonder whether the space chocolate finally worked too.

Might have done when I was no longer worried about was it happening or not, that is the time when both worked.

Could explain the excellent sleep which I had last night, nothing woke me up, which was wonderful.

I usually hear everything; can be annoying, as Richie can’t creep off to the toilet, without it waking me up.

I think that both worked which gave me a brilliant peaceful night’s sleep.

Today is sunny with blue skies despite the forecasts of terrible weather, down pouring of rain along with high winds.

So far nothing, just blue skies and the occasional white fluffy cloud and a never ending line of little Great Tits and Blue Tits landing and departing with nuts at the bird feeder.

November through to February and March are top visiting times at the bird feeder after March the birds all concentrate on insects.

Life is Full of Ups and Downs.

2009-11-13T14:09:00.009+01:00

Highdown School, Emmer Green, Reading, Berkshire, England.

It is amazing that it is Friday again so quickly, guess it has always been this quick, just sometimes it seems slower.

When I was at school and things were not going so well the week seemed to be endless, especially when we had classes with an unpopular teacher.

Maths lessons took three times as long as an art class and music classes seemed to be finished before they started.

Except when the horrid boys decided to tease the teacher, he was such a nice shy man, he would blush bright red which made them persist in teasing him time and again.

All so they could see him turn puce and start to get extremely nervous that he would be seen by his colleagues.

They would carry on until he got so worried and nervous he would start to stutter and drip with sweat.

Really did not like the boys that did this, they did stop it when they realised how unpopular they had become with the rest of the class.

I think if they had picked on the teacher who bullied the class it would have been supported by the majority.

The music teacher was liked by most of the pupils as he allowed them to play pieces they liked and he was fun.

Soon the tormentors found they were isolated which was not what they liked so they stopped and faded into obscurity.

I recently looked up my old school and discovered that it is a very good school these days, it is not called The Grove anymore, it is called Highdown School and is linked to Microsoft and other computer companies based in Reading.

Really good to discover this, nice to see that my old school is no longer the worse school in town, as it was when my parents placed me there.

This was the school where the class teacher greeted us on the first day by telling us he did not expect any of us to achieve anything in life.

According to him we would be doing very well if we got managed to get jobs with Courage’s (local brewery).

Or Huntley & Palmers (biscuit factory) or Sutton Seeds (seed and bulb company).

These were the local companies, Reading was known for its beer, bulbs and biscuits, by the eighties the brewery moved to the outskirts of town.

And Sutton Seeds and Huntley & Palmers were both taken over by other companies, and both moved to other locations with different names.

In the eighties Microsoft and other computer companies moved into Reading and by the sound of it not only changed schools like Highdown but changed Reading from a county town into Silicone Valley England.

Think the pupils at Highdown School will be doing work experience at Microsoft and will be able to pick and choose where they will work.

The days of pupils being treated like we were at the Grove seem to be long gone now and Highdown School is a wonderful community school.

Life is full of ups and downs.

Nice Visit. Today.

2009-11-12T18:51:00.009+01:00

Another good night’s sleep last night, although I did wake Richie once in the early hours, think it was around 4 am.

The THC helped me back to sleep after a short while, was surprised to hear it was 11 am when I woke up again.

Sat today, but not for as long as I wanted to as a friend was visiting, it was extremely good to see Toos.

Met her here in 1982, her birthday is the day after mine on 18 of March, unlike another friend Lucy, who is precisely 6 months younger, Toos does not tell me that she is a day younger than me.

Lucy used to tell me often that she is 6 months younger than I am.

She does not have to say anything these days as I just think it for her, guess that is how brain washing works.

Found out how brain washing affect children too, when Carole and her son were here, found out much to our surprise that her son would only eat food from Tesco.

Baked beans had to have the Tesco label; he also liked bean burgers from Burger King, and had to go there at least once a week.

Heard his mother moaning about Burger King, so I just said ‘I wonder where he gets the money from’ she went pink and dropped the topic and her son giggled

While he was here he watched Richie cooking, and he was especially interested in how bread and pizza were made as well as ice cream and curries and cakes.

The year after pizza and salad with balsamic vinegar were his favourites and burgers were right out, glad to think that my comment has helped him to like good food.

A very pleasant visit with Toos, she was here for nearly two hours, great fun chatting and having a good laugh.

Nice to see her looking well, Richie and the dogs have just gone for a walk around the park, sadly not on the bike as the lift is again not working.

Looking forward to a fine dinner of cauliflower cheese and baked potatoes and tomatoes and mushrooms and for me two lamb sausages.

Yummy a tasty Thursday treat.

Herrad Sitting for the second time on Thursday October 2009.

2009-11-11T22:37:00.003+01:00

Herrad sitting for the second time on October 29 2009.

Spike sitting next to my bed November 11 2009.

Pleasant Day with good news.

2009-11-11T18:37:00.013+01:00

Totally changed my routine today, got up, well was hoisted out of bed at 12 noon after I had done my arm exercises and Richie had done my leg exercises and massage.

After I had been showered and dried and dressed in a clean top, I got sat in the wheelchair to do my leg exercises with the Motomed

As soon as I was finished Richie put me back in bed and Ton arrived to look at my bum, he could see nothing wrong with my bum, no sign that sitting was causing any problems.

The good news is he wants me to try sitting for two hours everyday, if I am tired after one hour then I should lie down and do the other hour later on in the day.

So who knows maybe the gig on the 21 is still possible after all, have found out that I can hire a small adapted van from local car hire firms like Diks and Hertz.

In the next days hope to move around more with the chair and perhaps even go out if the jacket arrives soon.

It is very exciting also finding out about LDN need to know more about how it reacts with weed (THC)

Looking forward to sitting up again, think Richie wants to do it soon.

One other good thing was doing the post today with Willes, looked like a big pile but some was advertisement and other things I had already dealt with.

All bills have been paid so apart from a couple of queries everything has been sorted out now, so sleeping will be much improved by the lack of stress.

Looking forward to a pleasant evening now hope your day has been good and your afternoon and evening will be too

Nice Visit Today.

2009-11-10T17:02:00.010+01:00

Great visit from our good friend Marianne this afternoon, she bought me a delicious prawn filled crispy roll from Surima Suriname Takeaway.

They never seem to believe her when she tells them to put alot of hot pepper sauce on the sandwich; luckily we have pepper sauce here.

Since I posted about LDN yesterday I have had several comments, seems not everyone has the same reaction to this drug.

Some it helps and others not at all and one person actually got worse; the Dutch website MS Web has been very useful.

Annemiek who reads my Dutch blog told me to go to the MS Web Forum where I could read a variety of people’s comments about LDN.

The forum is very good, quite a few people have left comments about their experiences with LDN, seems there is also a diet that some people also follow.

The other good news is that doctors will prescribe it here that is reassuring, did not like the idea of doing it without medical support.

Have heard from one doctor from the OLVG hospital today, suggesting a telephone appointment to discuss LDN.

Which I will do and hopefully I will hear from the other doctors so that I have a wide pool of information.

Really need to research this thoroughly before making a decision whether or not to try this treatment.

Would appreciate if you will carry on leaving information about LDN as it would be very useful for me to be able to have as much information about this treatment as possible.

As soon as I/ we have made a decision I will post about it and tell you how the decision was made.

Low Dose Naltrexone.

2009-11-09T16:38:00.019+01:00

Was contacted by Linda Elsegoed on Facebook and invited to join the LDN group.

Had a look for information about LDN and discussed it with Richie after which I joined the LDN group and am keen to find out more.

This is the first drug that I have heard of for the treatment of PPMS, am amazed that I have never heard of it before now.

It seems to have been around for awhile now, it started off being used to neutralise drug overdoses.

Since then, it has been successfully used for other diseases MS being one of these.

I am very interested in LDN, understand it is administered orally in capsule or powder form.

Wonder what the side effects are?

This drug is very interesting but because there have been no drug trials/tests there seems to be only personal testaments not scientific facts.

Wonder why the neurologists I saw did not mention this course of treatment, they told me that there was not treatment possible for PPMS.

Is this is because it is not in patented at the moment, to any one drug company, so no one wants to spend money on doing tests/trials on a drug that they do not have the patent on.

From what Richie tells me he has not found anything that says LDN causes any harm, there does seem to be evidence that LDN will stop pain relief from opiates.

The way I feel right now about the quick progression of my MS, is that I do not have anything to lose by trying this drug, this is made more attractive by the fact that it is an oral drug.

Would very much appreciate other peoples input about LDN,

Have sent an e-mail to my general practitioner Dr. Wijngaarden for her feedback.

As well as to two neurologist Dr Professor Polman from the Vrije Universitieits Ziekenhuis Amsterdam and Dr. Kalkens from The Onze Lieve Vrouwen Gasthuis Ziekenhuis, Amsterdam.

I am interested in their views about LDN, but even more interested in the views of other people that I know with MS.

Have you tried it and what did it do for you, please let me know, your feedback is much appreciated.

Links to LDN:

http://www.ldnresearchtrust.org/

http://forum.ldnresearchtrust.org/index.php?/topic/982-2008-ldn-fact-sheet/

http://forum.ldnresearchtrust.org/index.php?/topic/1304-linda-elsegoods-story-2009/

http://www.ldnresearchtrustfiles.co.uk/docs/November_2009.pdf

http://www.lowdosenaltrexone.org/

http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone

http://glasgowldn2009.com/category/conference-sessions/

Sunny November Day.

2009-11-08T15:37:00.008+01:00

Amsterdam Street Art.

Watched football until very late, the Saturday night extravaganza on BBC 2 TV, before that we watched David Haye box and win against Nicolai Valuvev.

Slept very well until I got woken up by leg spasms and my arms seemed to lock solidly together.

Richie got up then, so asked him for THC which got me back off to sleep again for a few hours until 11.30.

Then did my arm exercises quickly as my arms were hurting alot, good idea to do the exercises quickly so my arms get stretched out and can function well.

By this time it was nearly 1 pm when our friend Antje was due to visit us; she did not manage to get here yesterday.

She brought us some delicious treats from Germany which we will enjoy later today; it was nice to see Antje again.

This time she introduced us to her new boyfriend, Carsten, who seemed to be a nice man.

Antje visits us once a year she promises to return sooner, especially as her daughter Ira really enjoyed her brief visit to Amsterdam.

Hope they come back soon and that we get a chance for a really good catch up this time they could only stay for an hour.

Richie is watching football on the telly, Hull versus Sunderland, hope Hull do well otherwise their manager Phil Brown will get the sack.

Would be a great shame as he is a good manager, hope he will be given the time to prove that he is the best manager Hull have ever had.

Today has been a sunny day with beautiful blue sky; the sun is starting to fade away now a sit is already 4 pm.

Dusk will be starting to happen soon and it will be very dark, already the clouds have come back.

Ah well soon it is the shortest day and longest night, and after that it is not too long before the days will get longer again.

Happy days indeed.

Abrupt awakening this morning.

2009-11-07T13:39:00.016+01:00

Slept well last night and until 10 this morning when leg spasms and arm cramps woke me up rather abruptly.

They woke me up instantly, there is no way that I could ignore it and sleep on, no way and once it had happened there was no way I could slip off to sleep again.

Shame as I really fancied another half an hour of snoozing to get me used to being fully awake.

It is another grey, wet and cold day today; Amsterdam is like this alot, often all year round, but especially in the autumn.

It was an especially good summer this year, quite unheard of for here; we have not had a really good summer here for almost ten years.

It was strange to hear the countries all around were having a dreadfully wet weather, we kept expecting the rain to arrive here but it never happened.

It was amazing how dry and hot it was here; mind you not dry enough for it not to be dreadfully humid.

That made the heat unbearable for me, I think probably for lots of other people too.

Keeping this short today as I am off for a lovely shower and then do the Motomed exercises for 30 minutes sitting up in the wheelchair.

A good friend from Germany is in town for the weekend, looking forward to seeing her later this afternoon.

Hope everyone has a good weekend.

No Sun outside plenty of Sunshine inside.

2009-11-06T14:39:00.007+01:00

Quite an eventful day already, I rang the bed company yesterday, to report the problems with getting the bed to go flat.

It is often quite a trial to ring this company, feel like I am being submerged in treacle as a very nice voice (a patronising woman’s voice) tries to find out what my problem is.

I tell her the bed won’t go flat and she takes me through all the things you have to do like press the green button and pull the plug out and re-plug it.

They never seem to believe you have followed the correct procedure.

Sadly it happens each time regardless of me telling her right away we followed all the instructions and the bed did not respond.

It usually adds 5 to ten minutes to the conversation, which should only be a quick phone in, establish the facts and organise a visit.

This time I did not volunteer any information until asked so our ‘conversation’ only took about 10 minutes with her cross questioning me, until she was satisfied.

She promised a call back sometime that day, with the time they could come around, hours later someone phoned to say the engineer would be around between 8am and 12am the next day.

Got them to make that between 10am and 11am, felt abit less bad than 8am to 12am, though 12am would have been perfect.

As it was getting them to agree to come between 10am and 11 am was pretty good.

The engineer was puzzled that he was here again so soon, as he had only just brought round a new handset on the 17 September.

When he saw that the only way the bed would go flat was to press another function at the same time he was amazed, but I think he won’t be puzzled for too long.

He had a look of someone who was going to get to the bottom of the reason the handset had malfunctioned and quickly too.

This engineer is a very nice man, he is a pleasant relief from having to put up with unpleasant people who all seem to make it their life’s work to sneer and patronise.

I guess vulnerable people are their targets, so a nice man like this Revacore engineer is a real find.

He has been here three times now and each time even waking me up this morning was not too unpleasant, it was good to be greeted nicely and have the bed problem sorted right away.

A relief as every time it went ok we wondered for how long and wondered when would it suddenly pack up for good.

Not the sort of questions you need to have as they detract from the main event, our day.

Everything is much later today, Richie is making me a fruit smoothie now, can smell pineapple and banana and oranges yummy my favourites.

It is a grey cloudy Friday with a hint of sun behind the clouds; don't think we will see sun and blue skies today.

Feel so good and refreshed that lack of sunshine outside is more than compensated for by the sunshine here indoors from my darlings.

Hope everyone has a good Friday too.

A Word With Four NNNN's.

2009-11-05T00:27:00.013+01:00

That was funny, just found a comment which puzzled me from Robert saying he assumed this post was seeking a word with 4 n's, and he promised he would search too.

When I published the comment I came into posts and the mystery was solved.

Had wanted to post a small post, but first wanted to see if it would still be Wewdnesday.

No it was already Thursday, forgot that I did not delete my test post which had nnnn in it.

Quite a laugh discovering the meaning of the comment.

Last night wanted to post that I had took two awards from Mrs Blogalot and have put them on my sidebar.

The intention is for anyone who likes them to take them and place on their blogs, these are no strings attached blog awards.

So feel free to take the Divine Blogger Award and the Rock Star Award, look forward to seeing them on lots of blogs.

It started off cloudy and grey day but now the cloud cover is a touch thinner and the sun is more in evidence.

Who knows by the time Mathilde gets here for my Thursday psyio 'torture' session the sky could be blue and cloudless and the sun shining.

Hope so as there are a few strawberries outside almost totally red, hope they go red before the first night frost happens here.

The sun is nearly got through the cloud layer so Mathilde must be close by, yes i can see blue sky.

This is getting very exciting looks like this afternoon will be sunny after all.

As soon as Mathilde has been Richie will get me out of bed and shower me and I will be ready to sit up in the wheelchair.

Sunshine yippee I intend to really enjoy this afternoon.

Hope that it is a good day for everyone.

The Importance of Being.

2009-11-04T14:46:00.015+01:00

Wild Mushrooms.

Last night ate a couple of space chocolates Richie had made for me, very good chocolates but did not feel totally reassured that they would get me off to sleep.

This was because Richie had showed me a big new pile of post and added to the pile that is already there for me to deal with, could feel myself getting very tense.

Think showing me the post just before we went to sleep was not a good idea, hope we can eat and then deal with them as I am sure its fear of the unknown that is getting me in a right old state.

Until I see the post I shall be having all sorts of thoughts which I am sure will not happen.

Think despite the cool weather I do need some air in the room as it feels very stuffy in here.

The dogs came in all damp from the rain and have filled the room with aroma of wet dog, wet and not so happy dogs.

Going around the block in the rain is horrid, going to the park in rain; even pouring rain is glorious fun.

Funny wee dogs, our first dog Daisy was like that too, if anything even more of a princess.

She hated it raining when she went round the block and would take ages to find somewhere dry so she could piss on.

A weird dog, our little princess Daisy.

She had alot of funny little ways, she would show her disapproval by sniffing, lots of different sniffs, and if I laughed she would pick Richie out as the culprit and glare at him.

If that set us both off and we both laughed she would do her Lady Bracknell (Importance of being Ernest by Oscar Wilde)impersonation and sniff very loudly and leave the room slowly and elegantly and leaving us in no doubt of the reason for her departure.

She was an incredible dog, if you said to her oh my poor darling Daisy aren't you so well today she would let her head hang down slightly and look like she had a very hard life.

Her whole body would change; before you said anything she would be standing full of vigour her coat gleaming.

And as soon as she started to play along her body would sag and her coat would not look as good, it would look a touch baggy and have no shine.

She would look like if she could talk she would tell you horrendous stories of hunger and fleeing from hostile enemies and escaping by sheer hard work and persistence on her part.

She was a wonderful brave heroine of a dog.

Looked like she took in washing to keep a family of 16 and the rest of the time she was washing floors, poor girl.

Daisy could go from happy to abysmally miserable in a second just by our suggestion, a wonderful dog.

It was very sad that she died in June 2006, on the Saturday she had a wonderful time in the park and came back very happy and immediately went out onto the b balcony with her treat, to show and bake in the sun.

She had a great day, the next day Sunday she was abit tired after Richie brought the dogs back from the park, but again took her treat out on to the balcony.

As she had water out there we did not see her again until near the end of the afternoon when she suddenly sounded in distress.

Her breathing was strange and difficult; she was gasping and looked in great pain as well as being extremely scared.

Richie gave her some painkillers that night, which seemed to do the trick as she was calmer and could eat her dinner and anything else that was on offer.

The next day Richie took her to the vets, who sent him to one with a scanner; this showed that her longs were totally full of tumours.

We very sadly arranged to take her to our vet, who already knew the test results, the next day.

Daisy was with us for one more day, where we both did our best not to show her how sad we were really feeling.

Richie had to carry her up and down the steps, two flights were too much, we had enough painkillers to take the pain away and give her a last good night with us.

She still could eat her treats and biscuits which we were very liberal with, the next day we took the tram, she moved very carefully.

We got to the vet’s and she was very happy to be there, and meet her friend Barbara, the wonderful vet and her assistant.

She even w anted her usual biscuit and after checking we wanted to go ahead Barbara gave Daisy the first injection while Richie held her in his arms.

She went off so quickly and then Barbara gave her the second injection and our beautiful Daisy was dead.

This was in the same week as my first MRI which did not make me optimistic that all would be well for me.

As it turned out despite my thinking on Daisy’s last night at home that I would not be alive for too much longer than Daisy, I am still alive and here and planning to be here for as long as possible.

We will always miss Daisy, she was an incredible dog, a lovely friend, we have so many wonderful stories we tell each other about her.

Telling stories is how we coped with our grief of missing her, that is I guess how we humans deal with life.

Story telling helps us to understand and they also help to remind us of friends who are no longer with us.

As long as we are remembered none of us will be dead, we will live on in stories and thoughts of those who are alive.

PS Will be sitting for 30 minutes later on.

Be Here and Now and Be Positive.

2009-11-03T14:49:00.014+01:00

Psychedelic Mushrooms

Yesterday I finally sat for 30 minutes and did my leg exercises with the Motomed, it went very well.

Was quite tired afterwards and happy to be back in bed, we ate our dinner and relaxed watching TV.

Really nice and relaxed and ready to sleep when we discovered the bed would not go down flat so I could go to sleep.

Richie pressed the green button on the plug nothing and unplugged the plug, did both lots of times but nothing happened.

Started to feel very uncomfortable as the position was causing too much pressure on the back of my neck.

I was just saying we either call the emergency telephone number of the company the bed is from or I take a sleeping tablet.

At that moment the bed went down thanks to Richie not giving up and pressing the hand set for over ten minutes.

One more bag of thc and I went to sleep, the dogs managed to stay in the bedroom so we got woken up three times by Spike shaking himself, his ears sound like pistol; shots.

Luckily got back to sleep each time which was brilliant, think that was because I had finally sat in the chair.

Friday I had been too tired and Saturday we forgot and Sunday I did not want too do it, claimed it was too late.

So yesterday almost did not want to again but Richie persuaded me it was good if I did sit and it was good.

Even more aware that I will have to take it very slow and easy and take my time building up how long I can sit.

Now I have done it I feel confident and will sit everyday, feels good also deciding to go at my own pace with no deadlines to worry me.

Not having sat until yesterday had upset me quite abit, realised that this morning after a good night sleep, that it had stopped me from sleeping.

Thursday night I had no problem sleeping but did have a problem Friday, Saturday and Sunday.

Have to remember that this happens and make sure to make my good intentions reality before I start to critize myself and give my self confidence a knock.

Need to build myself up and not take myself down, really be here and now and be positive and then I can and will enjoy my life.

Taking it easy.

2009-11-02T15:48:00.016+01:00

Was unsuccessful in getting off to sleep last night, woke poor Richie up, turned out it was 5.30 when I did.

After some THC went off to sleep and had a few hours, was woken by a dog barking and people talking outside.

Could not get back to sleep again, so heard all the street noises, like the glass container being emptied very noisily.

Then more loud conversations, the rain had obviously stopped and despite it being a cloudy day it was pleasant enough for people to hang outside.

I was not too pleased with the weather as I would have preferred gentle rain which would have put anyone off from being outside for longer than they needed to be there.

Felt abit mean for thinking that but after such a bad nights sleep it was understandable, well sort of.

Still made me feel like a curmudgeon, not my favourite way to feel, hated those thoughts, but could not change it.

Sleep was my goal and that eluded me.

Richie woke up around 11 and got me some THC, which brought the dogs in who were in good spirits.

When Richie drew back the curtains, the weather was cloudy and did not look like it would change today.

The dogs were no0t put off and played very energetically with Richie and as I had already done my arm exercises I put my arms back under the duvet and relaxed and kept warm.

It was 2 pm before I knew it, and Mathilde was here for my 30 minute exercise session, which also happened so quickly.

During the exercise session the clouds got thinner and the blue skies appeared and the sun was visibly shining.

Now it is 4.20 and the sun is starting to fade slightly, autumn is well and truly here now, the temperature is dropping daily.

I do not like the fact that summer is over and the days are shorter and the nights are darker, but on the other hand it is good that the season has changed.

There is no doubt that this is autumn, unlike previous years when it got wet but not obviously autumn.

Will be sitting in the chair in awhile, have decided that I am going to take it very easily getting used to sitting again.

Would love to go to the punk gig but have realised that 21 November is not enough time to get used to sitting without danger of reopening the wound.

Have found a gig by Biffy Clyro at the Melkweg at the beginning of December, think that this more likely concert for me to get to.

Saw Biffy Clyro on Later with Jools last month and liked them.

Well that is it for today; hope it has been a good day for everyone.

It's already 1 st November.

2009-11-01T19:02:00.007+01:00

After all the activities of the week I am very slow today, luckily there were no loud parties last night to stop me sleeping.

It has been a peaceful day of visiting all the blogs that I follow, am almost too tired to write a post.

But just wanted to write a small post and tomorrow I will write more, have enjoyed visiting and reading other peoples posts.

It has been very good and very inspiring and thought provoking, some of the blogs I had not visited for sometime.

Sadly a few blogs have gone, will miss them.

It has been a cloudy, grey and rainy day here today.

Hope a fine Halloween weekend has been enjoyed by all.

That is Life.

2009-10-31T18:27:00.012+01:00

Last night I was quite dreamy as we were getting ready to sleep, two things did not aid sleep one was talking to Richie.

And the other much more disturbing thing was the parties with their dull droning bass beat, which is sadly all the neighbours hear.

The dull droning bass beat and lots of excited screaming and screeching of happy party goers were not exactly good to go to sleep with.

The dull drone really had control of the airwaves for what seemed like eons but was only for several hours, I think that I must have lain awake for three hours.

Realised at a certain point that I needed to do something to resolve the situation; a pill and a bag of THC, the THC to relax me while waiting for the pill to work.

Guess the pill worked as I slept until 11.30 which is not bad at all rather disappointed that I had to use a pill to sleep last night.

Really want to get back to the happy days of inhaling 3 bags of thc and this would let me sleep until 9 to 9.30, sometimes even to 10.30 and to 11.00.

Found myself thinking about books both when I was drifting off as well as when I woke this morning.

In 1974 I went for an interview for a job as an offset litho printer with Metal Box in Baker Street, London.

I was interviewed by the head of the Personnel Department, a stern looking woman, called Vera Wood.

She asked me about the books I was reading and seemed quite surprised when I enthusiastically told her all about the author I was reading at that moment called Laurens van de Post.

Laurens van de Post is an Afrikaner, who wrote amongst other books The Lost World of The Kalahari; he did not agree with Apartheid, his books were about the life of the Kalahari Desert and the lives of the African people.

Laurens had been fortunate to get to know Africans as a child and with a child’s lack of prejudice.

I got Vera Wood so interested in his books, that I lent her a couple there and then that I had finished already.

I also got the job which started with a six week offset litho printing course in Acton, West London before starting work at the Metal Box Head Office in Baker Street, Central London.

The train journey was excellent for my passion for reading and I read quite a few books before the end of the course.

And once the course was finished I was travelling daily to Paddington Station and then because the short tube journey was so crowded and claustrophic.

And there was always the chance of being taken a stop further, just like I was the first day when I got taken to the next stop, which was Madame Tussards.

I decided to walk the twenty minutes to and from Paddington Station everyday, this was a good decision as one of my colleagues and her husband did the same journey everyday.

We ended up getting 40 minutes exercise every morning and every evening.

Some of the other authors that I read in 1974 and 1975 were:

Black Boy and The Outsider by Richard Wright.

The Little Foxes and Pentimento by Lillian Hellman.

Hear The Grass Singing and The Golden Notebook and The Four Gated City and The Good Terrorist by Doris Lessing.

Living my Life and Anarchism and Other Essays by Emma Goldman.

Jane Eyre and Emma by Jane Austin.

Vida and Woman on the Edge of Time by Marge Piercy.

Sexual Politics and Flying and the Prostitution Papers by Kate Millett.

The Female Eunuch by Germaine Greer.

Beyond A Boundary and Letters From London and Minty Alley by CLR James.

A Bend in the River and A House For Mr Biswas by V.S Naipaul.

The Tin Drum and Dog Years by Gunther Gras.

The Buddenbrooks and Tonio Kruger by Thomas Mann,

Washington Square and Portrait of a Lady by Henry James,

Patterson and Collected Poems by Carlos William Carlos.

War and Peace and Anna Karenina and The Death of Ivan IIyich b y Tolstoy.

Metamorphous and The Trial and The Castle and The Penal Colony by Franz Kafka.

A year later Metal Box moved to a brand new office in Reading town centre a mere twenty minute walk from where I lived.

Although it was excellent not having t o catch the train at 7 am every morning I really missed the train journey and especially the reading time.

There are always swings and roundabouts and ups and downs.

That is life I guess

Optimistic now that I can sit again.

2009-10-30T12:56:00.007+01:00

Yesterday was the big day that the adaptation was finally brought around, only realise now how much I had been anticipating the appointment and how worried I had been.

Had not realised how worried I had been but know that I have been and am no longer worried as I slept very well last night.

What amuses me today is that I was lying there last night convinced that I would not sleep and promptly fell asleep.

Just before they all arrived yesterday I felt terribly nervous and then they all got here and I was instantly ok, just wanted to get on with it and sit.

I was sat in the chair, Elwin had a good look and Ludwine made some adjustments and Elwin made some marks where he needed to reduce the mould.

At this point I was put back in bed and after some adjustments; I was hoisted out of bed again and sat back in the chair to see if there were more adjustments needed.

Elwin made some more drawings of the parts that needed adjusting, and Jenny arrived with the pressure gauging cushion which was extremely useful.

It pinpointed exactly where the pressure was, and it turned out to be exactly where the wound had been.

Ludwine and Jenny gave Richie a master class in how to recognise how I am sitting and how to rectify and correctly position me so that I am sitting properly.

It was a very tiring day, all the anticipation and then twice being hoisted in and out of bed and at the end of the afternoon Elwin had to take the chair and the adaptation away with him to finish it off at his work.

Shame as had wanted to sit up for awhile after the appointment, had wanted to leave the building and go downstairs and round the side and say hello to Willes.

Still never mind, the wheelchair and adaptation was back here early this morning at 8.30 and this afternoon I can sit in it and gradually get the hang of sitting again.

Am so curious how it will feel to move around of my own free will and without someone else pushing me.

That is quite an exciting thought that I will be able to move from room to room when I want to.

Not sure that I can actually cope with visualising that idea, think it will make more sense when I do it rather than try to visualise something that I have not been able to do for over 14 months now.

Right now I am looking forward to sitting again this afternoon, in fact I am really looking forward to sitting for an hour a day to start with, and hope that it goes exceptionally well and by next week I will be able to sit for two hours.

Not sure whether there is enough time for me to build up enough hours sitting in the wheelchair so that I can go to the gig on the 21 November.

That is why it is such a shame that I did not get the adaptation fitted onto the chair earlier as every day really counts in order to build up enough time sitting without ant negative affects on my bottom.

It would upset me a lot if I am not ready to go the concert on the 21 November, but it would upset me even more if I developed another pressure sore that turned into a deep open wound.

That would for sure be much worse indeed.

For now I am optimistic that I will be able to sit up for four hours by the 21 November.

Optimistic and looking forward to what happens next and new adventures to be had.

It is Friday again so quickly, this time it it is the day after getting the adaptation, the day my life starts again and the day when I can decide when I want to sit.

Hope everyone has a good day too.

Life is Moving Along Again.

2009-10-29T14:12:00.015+01:00

In an hour’s time they will all be here, I believe there will be my advisor Michelle,
and Harm from Welzorg and Elwin from Summit and Ludwine, the ergo therapist and her colleague Jenny, both from the RCA.

When they get here I will be placed in the chair and Elwin will check that the adaptation is giving me the support that I need.

When Elwin has made all the adjustments needed then Ludwine will check that I am indeed sitting correctly.

At this point Jenny will get me lifted lightly off the chair so that the pressure gauge cushion can be placed under me so that Jenny can check that the pressure is well distributed.

Once that has been completed I will be able to test out the wheelchair and adaptation, and after two weeks Elwin will make an appointment for an evaluation.

Where he will no doubt check whether he has to adjust or fine tune anything to give me better support.

Of course if I need help before the evaluation appointment I am sure that I will be able to get assistance should I need it.

Well it went very well, I was placed in Summit’s chair to test the adapted seat and it felt good, felt like I was sitting well supported in a comfy armchair.

Elwin checked whether I was well supported and Ludwine double checked to see if my pelvis was in the right position.

Then I was put back into bed so Elwin could adjust the left arm rest so my left leg had a touch more room.

Once that was done Jenny arrived and placed her pressure gauging cushion on the seat and Richie placed me on it, at first the laptop showed too much pressure on the right side where the wound had been.

Then Ludwine and Jenny showed Richie how to carefully adjust my pelvis so that I was sitting better, this instantly removed the red pressure from the screen.

Richie saw very clearly how I need to sit and is confident he will be able to put me in that position.

It was a tiring experience especially with so many people here, tiring and busy but so worthwhile.

A good friend Skyped me just as I was put back into bed, it was very nice to talk to Lucy and tell her what had just happened.

Feeling kind of tired now and keen to get out of bed and have a shower and then eat dinner.

A pleasant feeling knowing that tomorrow the chair will be here and I can start to sit up for an hour a day.

Hope that by next week I can start to sit for two hours, life has become really very exciting now.

Sleep proves elusive before Thursday.

2009-10-28T16:21:00.014+01:00

Last night seemed so relaxed but no matter how much I tried sleep eluded me for hours.

When at 5.15 I still could not sleep Richie gave me a lorazepam and that seemed to do the trick and I slept until about 12.30 when I was awake again.

I do feel that I have taken a pill; it makes me feel slightly weary of everything which is not how I usually feel or how I like to feel.

It is a sort of seedy feeling as if you have rented out your body and are not sure the temporary tenants did not trespass where they should not have.

Think opiates always give you that feeling, the feeling of being lived by proxy that is why I do not usually like to use these pills.

It was just did not want to go totally without sleep especially as I want to be relaxed for the big appointment tomorrow.

So may take one of those lorazepam tonight but then right away and not when the night is near over like this morning.

No wonder I feel so seedy today, as I did not sleep for the full time that I could have slept.

The day has been bright and sunny, the blue sky is now get ting cloudier as the afternoon comes to an end here, and it is 16.35 here.

This is why I hate the time being changed as we can never fully appreciate these fine autumn afternoons and evenings.

This is end of the afternoon, the blue tits have been stocking up on peanuts, so have the parakeets, today eating and not squabbling with each other.

Have to get Richie to top up the nuts soon so as to keep the birds well fed; they do need it now there are fewer insects.

Love to see the birds at the bird feeder, realise more these days how much I still miss the beautiful wildlife in Trinidad.

Had not realised that there were over 30 species of lizards in Trinidad and as many types of frogs.

Also an amazing amount of birds a real treasure chest of wildlife, thankfully they realised what a little gold mine they were sitting on so the wild life in Trinidad is being protected now.

Sadly not in time to save the ocelot, there are no wild ocelots roaming free in Trinidad but it is the place to visit if one is a wild life enthusiast.

Here is a link to the Asa Wright Nature Centre

http://www.asawright.org/

Here is a link to the wiki Natural History of Trinidad and Tobago

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

All Set to Sit Again.

2009-10-27T16:52:00.015+01:00

Frogs and Lizards.

Slept pretty well last night, shame that I tend to wake up early and then can not get back off to sleep again.

And today was no exception, woke up when I coughed which triggered as always a big spasm.

I was now officially awake although did try to pretend I was still asleep, did not work, so lay here moaning quietly.

I was very happy when Richie got up and closed the window and put the heating on briefly to warm up the apartment.

As soon as it was warm I did my arm exercises and Richie did the leg exercises and massage.

Then a delicious fruit smoothie and later on oatcakes and Wenselydale cheese with Branston pickle and a couple of spicy pickled onions.

In between my new red winter jacket arrived, it has zips up the arms which make it easier to put on.

Also got a warm black protective bag (like a sleeping bag with zips) for my legs and up to my hips, nothing under my bottom which makes it easy to put on in the chair so no extra transfers with the hoist.

Looking forward to testing them out this Thursday when my adaptation will be fitted onto my electric wheelchair.

I am all set to go out and enjoy myself, first have to take it easy and slowly build up the length of time that I can sit.

But soon I will be out and about in my new red jacket all snug with my legs well protected.

Feels good to me.

The Rich Tapestry of Life

2009-10-26T15:12:00.013+01:00

Trinidad Art.

It is amazing how time flies by these days; a day is over so quickly especially now it is getting dark sooner.

Can smell the delicious aroma of mince pies wafting from the oven, mince pies full of currants and raisins and mixed peel.

Feel in the mood to eat a few, they are particularly nice warm out of the oven, hope that I will be able to hold them ok.

Hope I do not smash them to pieces, which do happen as the feeling in my fingers is bad, often grip too hard.

Mathilde, my physiotherapist was here at 2pm to supervise my exercises, after 20 minutes hard work, I am happy for her to relax and rotate my arms and massage when needed.

I always notice the benefits of a session with Mathilde, and it is not just the exercises.

We get on well and she teases me mercilessly, which I enjoy, so does she, we usually have fun doing the exercises.

This Thursday there will be no physiotherapy, as it is the appointment for the important fitting of the adaptation on to my electric wheelchair.

I am excited about the idea that I can start to sit up again, am very aware that it will be extremely tiring.

Will have to build up the time that I sit bit by bit, do not want to do anything that would cause the reopening of the wound.

It so0unds very obvious that I need to be careful, but it is not obvious enough that pressure sores can happen easily.

Really need to be aware of how long I am sitting and hope that I will not be tempted to extend the times because I am too impatient.

The reason the pressure sore healed is because I did not sit up, this would have put too much pressure on my bottom.

Even the Roho cushion would not have been able to cure the open sore; once it is open you can not sit up until the sore has healed.

Last year my pressure sore first showed itself as a red patch, then it opened, but each time, about 3 x that it opened before last year August it also healed up.

Then in August last year, the pressure opened again and this time it was a deep wound, one that I did not want to see, eventually Ton, the nurse from the RCA stopped showing me the photos.

Well my new resolution is to be optimistic about sitting upright, it feels a wee bit scary but that is because it is so long ago that I could sit up properly.

The idea of sitting and going outside is overwhelming, hope that I can cope on Thursday, will try to concentrate on the important aspects.

Which is the feeling that my life will be richer if I am not physically isolated in the bedroom everyday and all day.

Here ‘s to life in all it’s variety and wonders and even the downsides are all part of what a friend once called ‘ the rich tapestry of life ‘.

A Bright Sunny Day.

2009-10-25T15:41:00.015+01:00

Trinidad.

The clock went back last night, so we are now living in winter time, not my favourite time.

Not much that I can do about it so this year I will not bore everyone plus myself with going on about how much I hate winter daylight saving time.

In the past I would not change the time on my watch preferring to work out each time what the time really was.

Perhaps finally I am coming to terms with the idea that things that I can not change will not get my attention.

Could be good for me if I have learned this, as I do use up valuable energy on things I can do nothing to change.

Think that someone like Dorthe would have her card well marked these days, she was an example of a friend who one ends up tolerating because of a vague memory of friendship.

When I first knew her my self confidence had taken a nose dive, this did leave me open to peoples abuse

My self esteem has taken quite a bashing from the MS but I have managed to get to grips with that and really have understood that MS does not define me.

I am alright; I am still quite a woman even if my body won’t cooperate these days, it is not easy to be so handicapped.

As soon as I wake up in the mornings I am confronted with my bodies inability to move and the first spasms happen and my arms clamp shut as I yawn, and again I am aware of the pain.

I do my arm exercises, when I get my arm straightened out, which does seem to help, am sure that the exercises have helped me retain the use of my arms and hands.

Today has been a bright and sunny day, nice to look out of the window on sunshine and birds hopping about on the bird feeder.

Have to relearn to love this time of year again and I will once I am back outside and able to feel the wind and smell the outdoor scents.

Looking forward to the prospect of being liberated from my bed and tasting the delights of the outside world once again.

Me and Dorthe in Trinidad.

2009-10-24T13:41:00.016+02:00

Surrealist Art.

Yesterdays visit and post brought back other memories of 1997.

Later on after Richie moved back in March 1997, Dort he seemed to have stopped trying to steer my life.

Thought at the time that she had finally understood that she must not meddle with other peoples lives.

Later on in the year she came to me with her plan, she wanted to visit the Caribbean, she knew that I was in touch with my cousins in Trinidad.

They wanted me to visit and I found this a very exciting idea if a little bit scary too as it was so long since 1962 when we had left.

Dort he’s suggestion was that she pay for my ticket, if she could come out with me, that way she would get her Caribbean holiday and I would see my cousins and Trinidad again.

I let her persuade me that this was a good idea, and my cousins were delighted so the tickets were booked and paid for.

Dorthe was told how important this visit was to me, by myself, Richie and other friends and she kept saying she would be on her best behaviour.

She also promised that as she had a credit card, should I need it she could pay with her card and I could pay her back when we were back in Amsterdam.

We flew out in November 1997 for three weeks and stayed with my cousin Aileen in San Fernando.

It was amazing being back in Trinidad again, sadly Dorthe did not keep her word, and she was very difficult the whole time.

Afterwards I wish I had not done my best to avoid arguing with her, but had not wanted to spoil the atmosphere.

But that I guess was already badly compromised by Dorthe herself, she never once managed to show pleasure or say thanks once.

Very strange way of behaving, most people would be doing their best to let their hosts know that they were enjoying their stay.

She never did that, my cousins and their families were puzzled by Dorthe, I told them repeatedly that Dorthe's English was not very good.

Hoped this would explain things for them.

On the day we left Aileen and her lovely daughter Susan Christine drove us to the airport and bought coffee and sandwiches and cakes.

We sat and ate and talked before we had to go through to the Departure Lounge, we said our goodbyes, me in tears.

Heard Aileen saying ' Ah I see you are enjoying yourself' she always says this when people cry, while giving you a box of tissues.

Dorthe and I went to the Departure Lounge and right away she told me several things about Susan-Christine, Aileen's daughter that I did not know.

Before I could ask how come she knew she told me with a grin that she had read her diaries.

So that is what she had been doing every afternoon when she had been having her afternoon siestas.

She had not been sleeping she had been looking through the young woman's things, I was so angry with Dorthe.

Also for telling me now, luckily we had to move from our seats in the front row of the small plane, which was needed for mail and bottles of coca cola for Tobago.

We were seated at the rear of the plane, after the first landing Dorthe returned to the front, but I stayed in the rear of the plane.

I was only too happy to have nothing to do with her until we boarded the plane home in Barbados.

That gave me a couple of hours to regain my composure after the news Dorthe had read Susan-Christine diaries.

It seemed to work and in Barbados we had to sit together in the seats reserved for us.

I had decided that when we got back to Amsterdam I would not seek Dorthe out and instead would let the friendship go.

Could not be friends with Dorthe not after she had been so rude all through the visit and never said thank you once.

My cousin Aileen and her husband Philip and their kids had given us a brilliant visit.

We had been taken all over the Island, had been to a wonderful street party, been down the Islands and to the beach, visited Port of Spain.

It was an incredible time, we had eaten out regularly in top restaurants, all paid for by my cousins.

Dorthe had also refused to pay for things like cricket books and magazines for Richie, which I had wanted to bring back for him.

It was really dreadful that each time that I asked for financial help she would quiz me as to what the money was for and then refuse.

So deciding that once we were home in Amsterdam I would let the friendship go, this made it easy to sit next to her on the flight home.

Even then right at the end when we had come through baggage check and customs and I was waiting to see Richie, she tried to sow seeds of distrust.

She told me several times that seeing as I had such bad luck with men I should not expect to see Richie, as he was surely long gone.

Then just as it seemed he was not coming, Richie and Anja appeared and I blurted out to Richie ' oh wasn't sure you would be here' and Dorthe left right away for her train.

So well had she got to me just before Richie and Anja had arrived.

I burst into tears and Richie who had realised that Dorthe had got to me gave me
a bunch of flowers and said welcome home.

As it turned out I did not have to do anything, as the book saga finally terminated our friendship.

Dorthe promised me a C.L.R James book she had bought in Trinidad and did not want to read, she started to promise the book in February but 3 times she came round she forgot the book.

She promised I would get the book at my Birthday drink down at Cafe SAS on the Marnixstraat.

Again she forgot and eventually on Good Friday 1998 she phoned to say she was working in the bookshop and could I come down and fetch the book.

I went and we had coffee and she passed me the book and I started to remove the book markers.

She queried this and when I said that I was removing the markers now the book was mine she laughed and said ´give you the book, don’t be silly I am only lending it to you.

I nearly swore at her but decided not to and to leave quietly, which I did saying I am going before I let myself go.

This seemed to trigger an attack of rage in Dorthe; she started screaming abuse at me.

The customers in the shop looked on startled as she followed me through the shop screaming obscenities while I said nothing at all.

I cycled home very quickly and told Richie what had happened and said I wanted to phone and scream abuse at Dorthe but would not do this.

A week later just when I nearly called her I got a letter which started off by saying ´´Who do you think you are´´.

Got Riche to read the rest and he did and said it got worse and I decided to throw it away and never got in touch again.

A year later I got a call from someone whose voice I did not recognise, the voice told me that Matauk´s Trinidadian pepper sauce was available on the Albert Cuyp market.

When I asked who it was I heard it was Dorthe and when I asked why she was phoning me now.

She told me it was because she had decided to forgive me, when I said nothing she asked me why I said nothing.

I responded that I had nothing to say, and if I did I knew where to find her and became silent again and after a few minutes of silence Dorthe hung up and we have never spoken again.

This was in 1999 and I have never missed her once in all that time.

Great Visit From a Good Friend Today.

2009-10-23T22:05:00.016+02:00

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

Grayson Perry.

Last night neither of us got of to sleep easily as we were both too tired, weird would have thought that being tired would make sleep inevitable.

It was eventually, but it took us both hours, I finally drifted off between 4 and 5 this morning and Richie after 5.

We did catch up on a little sleep by sleeping until midday, it was 13.30 by the time Richie had done my leg exercises and massage and I had done my 30 minutes of arm exercises.

An hour later, a good friend Anja came to visit, she brought us bagels and humus, sadly my directions were not too good so she went in the wrong bagel shop, Bagels and Beans who do not make real bagels, they make bagel shaped bread rolls.

Real bagels are chewy, these were very nice light bread rolls, but it did not matter, it was so pleasant to have a visit from such a good friend as Anja.

Realised today that we know each other quite awhile now, first saw her in 1983 and got to know her the year after.

Something really good about getting a visit from someone who knows you so well, like Anja knows me.

Remember how in 1997 when I told her and another friend that Richie was moving back to Amsterdam to be with me, their reactions were so very different.

Anja's reaction confirmed again that she was a real friend, whereas the other woman, Dorthe showed she was not a real friend by shouting out 'That is a bad plan'.

Anja on the other hand said 'If that makes you happy then I am all in favour'.

Think poor Dorthe was quite confused by my reaction, she had not expected me to disagree with her, so when I told her that her opinion had not been asked for, and she was stunned.

Poor thing, funny how you can sometimes suddenly see who really is a friend and who not.

Anja showed by her comment that she was in favour of what made me happy and Dorthe, that
she obviously did not care about my happiness.

It was sad to have this confirmed but that is life isn’t, sometimes you get disappointed but there is usually a silver lining my silver lining in 1997 was Richie moving back to Amsterdam.

I came back in the summer of 1996 to work on my final dissertation and stayed on after I finished my Masters degree in Criminology.

My silver lining is still with me now and I am happy each day that Richie is here in my life.

April 1989 will always be my favourite month, that is when we met for the first time, amazingly that is twenty years ago now.

Quite incredible that it’s 20 years already, does not seem like it at all, but then the saying is ‘Time flies by when you are having fun’.

And I really do have fun with Richie, even now time flies when we are together and we can always see the funny side of things.

Life with Richie is good, despite the MS we still have good times together, and long may it go on.

http://www.guardian.co.uk/artanddesign/2003/nov/21/art.turnerprize2003

Yesterday Was Not The Day That We Were Expecting.

2009-10-22T15:46:00.015+02:00

Frida Kahlo (born Magdalena Carmen Frida Kahlo y Calderón;[2] July 6, 1907 – July 13, 1954) was a Mexican painter.[3] She painted using vibrant colors in a style that was influenced by indigenous cultures of Mexico and European influences including Realism, Symbolism, and Surrealism. Many of her works are self-portraits that symbolically articulate her own pain and sexuality. Kahlo was married to Mexican muralist Diego Rivera.

Absolutely shattered today, we were about to go to sleep, Richie folded the duvet over to check whether he needed to move me, if I had shifted over in the bed.

We were both very tired; I was on the verge of falling asleep, when I heard Richie say that I was totally wet.

As soon as the duvet was not on me I felt intensely cold, not surprising since I was drenched in urine, and I was very wet and smelly.

Only smelt and felt it there and then and not before, no wonder I had felt so cold all evening, even after eating

Seems the catheter tube and come out and urine had drained into the bed instead of into the bag.

A rotten surprise at 1.30 in the morning, especially as we had stayed up late to see Dizzi Rascal at the famous Roundhouse on the Electric Proms on BBC 2.

Had enjoyed seeing his performance, it was very good, we were both surprised at how good the performance was.

And then we were really shocked that sleep was not going to happen, certainly not before yet another shower.

Richie had to get me out of bed and take me into the shower, which was starting to warm up when we finally got there.

Then he removed my top and showered me thoroughly, my t-shirt had also become soaked in urine too.

He dried my torso and put on a clean dry and pre-warmed t-shirt and then he carefully showered my bottom and legs.

Then he applied cream and put on a clean, warm pair of thermal leggings and got the hoist around me.

Finally he got me back into bed and after checking that all was still ok and the tube had not come out during being hoisted back into bed.

The really horrible thing was that it was my second shower, twice the work for Richie yesterday.

Just when he was getting me out of bed in the evening, I started to have a very large poo, an upsetting experience.

One that Richie always makes it much easier for me by getting me washed and clean and dry and dressed without any additional stress.

Nevertheless it is a very unpleasant event for us both, and extremely smelly and another reminder that I do not have as much control as I used to.

Especially with such a good diet full of fibre, have been eating alot of mangos recently as well as oats and dates.

Horrible to be reminded once again how handicapped I am these days, glad that I do not cry anymore when these things happen.

I am very glad that Richie does everything he can to take the stress out of the situation, something he is very good at doing.

Today we are both very tired indeed, it was 4 am before the light was turned off and it seemed minutes later when we both had to wake up and face the day.

Despite being exhausted we still had to cope with all the pre arranged appointments like my physiotherapist and the meeting with my new Case Manager Jacqueline Janssen.

Seemed to go well, I think that she will be a good Case Manager, she certainly could not be any worse than the one I have had.

That was the woman who ignored my requests for some action is taken to give me more support in the new electric wheelchair.

And the woman who once asked me to let her know the amount of rent subsidy one was entitled to as a handicapped person.

I had asked her and she said she did not know the answer, but could I let her know when I knew the answer, as she was regularly asked this question.

Always felt like I was my Case Managers, Case Manager, think Jacqueline Janssen will be different, she will I feel be a good one.