The Benefits Of Hindsight.

 
Alice Rahon.
http://en.wikipedia.org/wiki/Alice_Rahon

In 2006 I got the diagnosis of Primary Progressive MS, and I got very worried.

I realise now that I should not have worried as much, I now know that worrying never makes positive differences.

Especially to MS, worry causes stress which is bad for MS that is the benefit of hindsight, which I did not have in 2006, then I was faced with the unknown.

I had an insensitive neurologist, and a disease that thousands have but no one knows the cause.

This lack of knowledge has been exploited by Pharmaceutical companies who have produced many drugs which they claim control and modify MS.

‘’Many of these drugs have potentially serious side-effects especially in combination with other medications.’’
‘’It should be emphasised that none of these drugs are a "cure" for either MS nor for any of its symptoms.’’
‘’The only medications available at the moment either slow down the course of the disease at best or are palliative on its symptoms.’’
http://www.mult-sclerosis.org/mstreatments.html
If the cause were known and drugs were developed that can help; I would love a drug that could help me.
Not drugs which have nasty side effects while making huge profits for the Pharmaceutical companies.

Keeping Us Happy And Amused.

Spike is not well it’s very worrying, his walking has been getting worse, he has lost control of his back legs, but despite this he is still a happy dog.

He has many cheerful and playful moments, which is lovely to see, also how well he copes with his wobbly legs.

We got quite worried that we won't have our beautiful little friend for too much longer, so Richie took him to the vets.

Who thought it could be one of two things, both of which could be treated, neither could be cured but medicine could reduce the effects.

This would give Spike another three to four years of a good life, where he would be able to run and play without any problems.

Blood samples were taken and these were sent off to the laboratory for testing, took three weeks to get the results.

We had hoped the blood tests would tell us more but sadly nothing was found, so now we need to take Spike to see a neurologist.

We were lucky to get an appointment at 10.25 on Friday 12 October to the Animal Clinic which is part of Utrecht University.

This is one of the teaching clinics where vets get trained; it seems to have a good reputation.

Now Richie will go to Utrecht on Friday 12 October, with Spike to see if they can help.

Hope they can, would give alot to have him fit again and hear him running full tilt around the apartment.

He is such a sweet dog, my special little friend who takes his job very seriously to keep us both happy and amused.

Onwards and Upwards to the Start of Spring

Salvadore Dali.

Funny how as my MS progresses my feelings about myself have progressed too, at the start really did feel that every shred of self worth had been stripped off me.

That is how I felt, somehow worthless and useless, guess that is all to do with not being able to work anymore.

Not nice to suddenly not being able to go to work, see now that it may have been better for me to stay at work for longer than I did.

My problem then was I could not get further than my front door when I could still get down the steps.

Really needed my work to get me there every day so that I could have been part of the action for a wee while longer than I was.

They were quite happy not to see me, meant out of sight out of mind until they could get rid of me which they did in 2008.

It did give me 2 years to get back to work, well in theory it did in practice my bosses did not want me at work as then they might have had to adapt the office.

Did hear that my work’s policy was to get rid of anyone who became long term ill, if that happened they would first try to reduce your hours.

Reduced hours gave you less sickness and unemployment money and less rights most people do not have any knowledge of any of this.

When I fell and broke the cartilage in my knee they were nice briefly but when they realised I needed to go to the physiotherapist 3 xs per week they liked it less.

Then my bosses got really unpleasant and very month there was meeting where they would tell me about all my misdemeanours.

Seeing as I worked at the Serviced desk with 4 colleagues and we all logged on with the same password it was not possible to tell who had done what
.
But that did not stop them from accusing me of all sorts of things, these meetings were very stressful

At night I slept increasingly badly would be constantly thinking and dreaming and having nightmares about the meetings and accusations.

Until the accident I had been the best Service desk employee, the shining example for everyone else and then suddenly I got demoted.

And I was a fair game to be harassed out of the job, then the stress became too much and my balance went and then I was sent to the neurologist.

I think that all the stress at work hastened the onset of my symptoms, something that even my former employer would I think be shocked by.

Suddenly the clouds have gone and there is blue skies and sunshine, looks like tonight will be noticably longer light.

Yesterday it was still daylight at 6 pm.

Yippee onwards and upwards to the start of spring.

Feeling Lucky Today.

William Blake.

It was brilliant seeing Gareth and Paul, strange to think that our friends are already back home in Wales, their visit to Amsterdam was over much too fast again

Today is another could, wet and windy November day, slept pretty good last night, think the lavender oil helped me drift off.

When Richie drew back the curtain this morning I wished again that we could change the colour of the glass.

Am convinced that pink windows would be so much more cheerful during the winter months, have tried to convince Richie to stick pink transparent plastic over the windows.

That way even a grey day would look pleasant.

He does not think it is a good idea which is a shame and there is no way that I can convince him otherwise.

Ton Peeks from the RCA (Rehabilitation Centre Amsterdam) came by today to check the healed pressure sore and again he was very pleased with how good the skin looks.

I have been waiting to hear back from the neurologist’s assistant Dr. M. Temmings from the OLVG Amsterdam, he had responded quickly to my request for information about LDN.

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

He suggested that I could either have an appointment at the polyclinic or I could have a telephone appointment.

I mailed back that I would prefer a telephone appointment and got an immediate out of office response telling me he would be out of the office until the 16 November, and then never heard anything more.

Have sent a couple more mails and finally got a reply from Dr Temmings today, telling me to ring the hospital for an appointment.

Wish he had told me this on 10 November, and then I would have called to make an appointment the very next day.

Shame about these constant miscommunications, last year Dr Temmings told me any time I wanted to discuss my condition I could mail him for a telephone appointment.

Oh well that is life, tomorrow I will call for a telephone appointment, perhaps I will get one with the Neurologist Dr Kalkers herself.

Why talk to the monkey when I can talk to the organ grinder.

Will post more as soon as I have spoken to either Dr Kalkers or the assistant Dr.Temmings.

And who knows perhaps this time I will manage to get some information from a neurologist.

It has not happened so far but I am feeling lucky today.

Having a quiet day after being woken up at around 8 am by enthusiastic people arriving at the Fijnhout theatre across the road from us.

As they are actors, their voices carry along way so we could hear every beautifully pronounced word.

All was punctuated by theatrical laughter it was a wonderful performance worthy of a bigger audience than just the half a dozen apartments who got the benefit this morning.

Had to remind myself this morning that it was a treat when I got so cruelly woken up.

If the actors were not enough, the dogs heard another dog, I did not, but that of course was not the deciding factor as just as soon as the actors stopped braying with laughter the dogs started barking big time.

Luckily Richie managed to persuade them that it would be better for them to shut up which they just could manage to do.

It is another hot and stuffy day, the sun is mostly behind the clouds but it is there as you can feel it.

The first thing that I say to Richie in the mornings lately is please turn the fan on before I can manage ‘Good morning’.

Wonder how other people with MS are feeling today, I am feeling vey limp and rather looking forward to the cooler evening.

My hands are pretty useless in this heat every time I stop doing something my hands clench up into a floppy fist.

Everyday as it gets closer to the time when I get hoisted out of bed, my fingers start to bunch up and it becomes more and more difficult to do anything.

Have been very fortunate that I can sleep alright these days which is brilliant as did not enjoy waking up regularly at 5 am and having to try to lie quietly for hours until Richie woke up.

What really annoyed me about waking up so very early was hearing the pigeons try and make a concerted effort to work out how to use the bird feeder.

The last time I heard the pigeons try to climb onto the bird feeder they just looked at me and that was it until the dogs came trotting in and sorted it right away.

Of course that sort of stuff gets rewarded so they rushed off delightedly to collect their biscuits.

The dogs love their biscuits, used to be made by me but Richie does it now which I still miss doing so much.

It's a very rewarding thing to do as homemade are so much better and you know precisely what you have put into them.

Ours are a mixture of flour,oats, baking powder and olive oil and chopped up peanuts mixed and gently kneaded into one lump and pushed onto a baking tin and flattened and pre-cut into pieces and put into over for 30 minutes on a slow cool oven.

When they are crisp enough they are ready and need to be left to cool, usually take two out to cool off and give to the dogs that have been waiting patiently, usually n front of the oven.

The recipe is

Dog Biscuits:
1 mug flour
1 mug oats
1 mug chopped up peanuts
1/4 mug olive oil
1 spoonful of baking powder
mix oats and flour
add oil and mix throughly adding 2 spoons of water if needed knead slightly and form into a ball and push into a flat tin, push flat with hand rolling pin.
cut into squares so when cooked can be broken up into biscuits
place in cool oven@ 150 degrees
for 40 minutes or until cooked
they must be crunchy, can be baked twice.
cool and break up and keep in air tight tin.

At the moment the dogs are off monitoring what Richie is doing, and what he could maybe be doing if they only used their thinking capacities.

Wish I could use my capacities better than I can;wish somehow I could still work but I keep forgetting that I am a cripple, a bona fide poor sick person and as such will never get harassed again.

Unless their computer system goes very strange I will never be called up again and there will be no more work for me.

Something that was a great relief to me when I was at home just after my shock diagnosis in 2006.

It is pretty amazing to me now that it is only a mere 3 years ago since our lives got turned upside down so drastically.

Wish now when my work put me on inactive that I had refused and demanded to get back to work and made them carry out adaptions to the Service desk office.

At the time I was so shocked at the diagnosis and the fact that walking pretty much stopped just after the diagnosis.

I managed to get to the neurologists appointment to be assessed ok and even managed to shuffle down to the hospital for the results but the next appointments had to get on the bus at the end of my road,

Then just managed to get there and back with help from the bus driver and passengers on the bus that drives long the Prinsengracht, and Richie helping me on and off.

Took me forever to get about but could still get about, after I went for the first MRI I had a couple of weeks holiday.

Being at home made life easier as could manage to move around there by holding onto everything and until mid October 2006 could still get up and down the steps to the front door with a little help.

Did still get over the road for my physio sessions though noticed that every time I finished I was in great pain and could hardly manage to drag myself upstairs again.

Realise now of course that was my last gasps of mobility, if only I had some support after diagnosis.

But there was none available which amazed us both as we expected this aspect to be well organised here.

At the time the hospital I attended had no MS nurses, so there was no one to talk to or turn to for help and advice after diagnosis.

So we did then what we do now which is use our own common sense, shame though that there was no one to talk to.

Felt very alone and isolated with my problem as if I were the only person with MS.

Every now and then recently I have had moments when I think ‘It’s not fair’ sometimes followed by copious crying as I cry over what has happened to me.

Of course it is not fair, would it have been fairer if someone else had got the MS and not me?
Don’t think that would have been fairer for the other person.

Why should I be spared when MS is something that anyone can get?

It is like Russian roulette we can all be the ones hearing the diagnosis.

With hindsight I realise now that I have had MS for a long time just never noticed it: only noticed the other stuff that happened.

If there was something noticeable, like the time that I could not walk properly for a few weeks, when it returned I thought it was amazing and never questioned it.

And why would I? I was after all just following logic if it goes wrong keep trying and then one day it works again (so no need) to investigate that anymore.

I never questioned things like that, ok I fell over but doesn’t everyone fall over sometimes?

I am also not superstitious so did not put any supernatural meaning on things for example was very aware of words that I could have used instead of amazing such as miraculous.

Do not believe in miracles as I am convinced everything has a rational cause, I might not always understand everything but believe everything is understandable.

And what was happening to me seemed very understandable until my birthday in 2006 when suddenly my walking got much worse and with it my balance.

This was not understandable at all in fact could not understand what was happening so went to the doctor and was sent to the neurologists who sent me for an MRI.

Finally there was a diagnosis and we finally understood what the cause was of all the events that were not explainable, now we understood.

Very quickly it was clear that there was no help and support available from the neurologist who never took the time to explain the diagnosis properly.

He tried to stop us from looking on the internet promising time and again that next time he would tell us everything.

Which he of course never did, all in all have never met anyone so badly equipped to deal with people.

We both independent of each other explored the Net for answers to our questions and we both found a lot of information.

There is a hell of allot of information but difficult to find out the information that has been tried and tested.

There is a lot of stuff about diets and of course there are those that offer cures (that appeal to our vulnerability but) of course have no basis in fact.

After researching MS and diets for awhile a writer friend of mine suggested I get a blog and write about what was happening to me.

This seemed a brilliant if somewhat scary idea which I fully embraced when I could not go swimming at my local pool.

It has just been rebuilt at huge cost and was receiving huge subsidies to make it accessible and when it opened the disabled access was not ready and would not be finished for at least 6 weeks.

The disabled access was round the back, none of this was exactly in the spirit of the law on access.

I immediately started my blog and quickly derived great benefit from being able to express myself and ventilate all my emotions about the diagnosis and the disease.

Later on I found other MS blogs which gave me a tremendous boost, rememeber the first time someo0ne put a comment on one o0f my posts.

Wow that was quite something, at first did not dare to leave comments on blogs but gradually did and quite quickly got to know some bloggers.

Now can not imagine a day without posting on both my English as well as my Dutch blogs as well as posting photos on a blog for the dogs and one about diets and one Not in this house for other writing.

These day can’t imagine a day without reading other peoples blogs and putting comments on theirs and receiving comments back.

Really love the support and encouragement that I get from the blog world and love the fact this is totally reciprocal.

The Internet and blogs are real tool for communication which we need so that we can support each other by communicating our stories to each other.

Those stories are important they help us understand each other’s situation and what the challenges are that are being faced.