'' Go Where No Man Has Gone Before.''

Suddenly and without warning I felt thoroughly miserable yesterday afternoon and tears started running down my face.

Could not stop them so let it happen, l figured the tears were happening because of all the stress that I have.

This week has been full of expectations, not all of which happened; the one that really has got me upset is the lack of arm support on my wheelchair.

It has been obvious since last year that I need to have the arm support adapted to suit the adaptation of the back and seat.

In my naivety I thought that the agreement from the Amsterdam Council covered the adaptation of the whole wheelchair.

Have to keep dragging myself back from looking over into a pit of despair and hopelessness, I am always positive but sometimes things get too much for me.

I find that a howl of outrage and anger and despair usually helps me and I can go back to being positive again.

Doing just that helped me resume being me yesterday, but just for a moment I could not see any point in being here.

Glad crying relieved the pressure and afterwards I felt much better.

Just read an article in The Independent newspaper about 4 drugs which went on trial seems the report was not published for 7 years afterwards.

http://www.independent.co.uk/life-style/health-and-families/health-news/ms-drug-trial-a-fiasco-ndash-and-nhs-paid-for-it-1991104.html

The drugs were supposed to delay the progress of MS but seem to have the opposite effect.
The Independent’s Jeremy Laurance, the Health Editor says

‘’The most expensive publicly funded drug trial in history is condemned today as a "fiasco" which has wasted hundreds of millions of NHS cash and raised fresh concerns about the influence of the pharmaceutical industry.

The scheme involved four drugs for multiple sclerosis launched in the 1990s which were hailed as the first treatment to delay progression of the disabling neurological condition that affects 80,000 people in the UK.’’

Jeremy Laurance goes on to say:

'The first report on the outcome was due after two years but was not published until last December, seven years later. It showed that the drugs failed to delay the onset of disability in patients – defined as walking with a stick or using a wheelchair – and may even have hastened it.’’

Not pleasant to read that drugs which are sold to delay this shitty disease makes the progress of it even quicker.

In his conclusion he says:

‘’ Multiple sclerosis is a chronic disease. It may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions which the drugs appeared to prevent, and gave quicker results.

Some experts thought the lesions were the disease but little effort was made to check. But preventing lesion formation does not prevent disability caused by the condition. The drugs deal with the lesions, not the disease.’’

Seems they have been approaching this research from the wrong end and have wasted valuable time and money trying to stop the development of lesions.

If only more research were done to find the causes and try to find a cure and not only a way to slow the progress.

The later is a pharmaceutical company’s ideal drug, one which people will need for the foreseeable future.

That‘s perfect for these ‘drug dealers’ as ever more people become hooked and can not stop for fear of their condition getting worse.

The influence of the pharmaceutical industry needs to be minimised, they need to serve us and not the other way around.

I know it will not happen in my lifetime but would it not be good if money were abolished and instead of tiny majority getting all the wealth the majority could be sustained by the earth’s natural bounty.

It is not pure fantasy, this world has more than enough resources to feed us all and provide everything we need.

If only we could dare to explore these possibilities and like they say in Star Trek

'' Go where no man has gone before''

Happy Anticipation.

Geometric Design.

It is Thursday, shame Steve @ The Wheel of Fortuna can't pop by again today, that would be brilliant.


http://spinfortunaswheel.blogspot.com/

Think we will have to wait until Star Trek technology is available to us for that to happen.

Visiting other blogs is I guess a virtual reality way of beaming around the blog world which is brilliant.

I am very happy that I started my blog when I did in 2006 as it has been such a great way to be in contact with so many people.

Brilliant to have somewhere to tell my story and give my point of view, it is wonderful that so many people want to share the experience with me.

It is great to get so much support and friendship and love from so many wonderful people in this great blogging world.

I am very cheered up by Ton taking a loo0k and saying that he thought that the skin should heal quickly.

Hope he is right, Richie said that it was half the size it was on Sunday so sounds very much like the healing is well on the way.

So I am hoping Ton's prediction is correct and I shall be sitting up in my wheelchair very soon and enjoying being outside again.

I can't hardly wait but wait, but I will in happy anticipation.

Hot and muggy weather.

Luckily it is a tiny bit less hot and muggy today, but only by a fraction as it is still 28 degrees, as it was at gone midnight last night.

Yesterday was really awful, every time Richie had pulled me up the bed and had got me sitting good, then literally within minutes I would have slipped back down the bed and also be sagging too much to the right.

It was difficult for both of us, me because I could not maintain my position for more than a few minutes.

The worse thing was trying to maintain a good sitting position so I could eat, but every time as I ate I could feel myself sliding exorably down the bed.

Made me feel very uncertain and even more handicapped, as well as worried that I was experiencing a further progression of my MS.

On reflection think that it is the heat that is intensifying all my symptoms to an incredible degree.

That is what is causing me to slip and slide in bed; I am just too hot to maintain my sitting position at the moment.

This makes sense especially when I can see a noticeable difference as soon as there is a cool breeze.

Today it is hot and overcast, with a forecast of rain, possibly by the end of the day, and also tomorrow and Sunday.

Feel sorry for friends returning from holiday if the weather is not going to be so good for them getting home.

A drop of rain would be extremely welcome after the muggy heat we have been having, might also be better for plants, fruit and vegetables.

Certainly would be better for me and everyone who can not cope with the heat.

I hate the way this MS makes a heat wave a truly horrible experience, which is strange as I used to love the heat.

Now I really can only cope with the fan right next to me and pointed directly at me, the only time when it is not on, is during the night.

Then if I wake up, I lie here aware that it feels like I am extremely hot and I am lying in very hot liquid.

Not too different to golden syrup, it is an odd feeling lying there like that unable to move an inch.

Just totally unable to do anything, that is when I feel totally handicapped and that is when it hurts the most.

It is also the moment when I have to be very aware and not let myself sink into gloomy, negative thoughts.

Do not want to start crying as it is so difficult to stop crying when you are lying down.

Once you start crying ling down all the tears run straight into the ears which is a horrible feeling and always makes me cry even more.

If I can’t stop crying, I have to activate the bed and press the button on the remote control and lift the bed.

That usually does the trick.

I have always been quick to cry, I cry when I am sad, when I do not feel well but also if I am happy.

I cry if someone else is crying.

When I visited Trinidad I was taken by my cousin to see her mother’s old house which I remembered so well.

It was the house we used to visit regularly every week; we went for lunch and often stayed overnight.

I burst into tears when I saw the house again.

That evening my cousin Aileen was telling her husband Philip where she had taken me that day and she told him that I had cried when I saw Auntie Jo’s old house.

Well, when Philip heard I had cried when I looked over the gate at the old house, he started to cry too.

Later on I was shown the video of one of their 5 son’s weddings, 6 months before, it was an incredibly moving video with all the family crying as they watched the wedding ceremony.

This made me cry and then one by one everyone in the room was crying and when Philip came to see what was happening he joined in too and we were all crying.

My cousin Aileen was the only one not crying, she was handing around the box of tissues saying like she did that day at her mother’s old house ‘’ glad to see you enjoying yourself ’’

At this point I realised that it was nothing to be ashamed of, in fact it seemed to be a family thing to cry easily.

As the visit progressed I realised that it was also national characteristic and basically we are emotional people who are not afraid to show their emotions.

A very simple answer, and yet for most of my life I have been made to feel that I was not in control, that I was a hysterical mad woman.

As this came from my mother, I accepted it as the truth; it was only after I had got away from home that I realised that it was not me, but my mother who was not ok.

But even so I still felt very self conscious and it is only really talking with Richie that I have finally accepted that I am ok.

I have always been ok, but my poor mother was not she was too disturbed by what she experienced in the war.

She and many others like her did not have any counselling or support so all the traumas suffered during the war was left untreated and unresolved.

And then we moved to England and she went on to valium which turned her into a pill addict and someone who became very difficult to live with.

The only way that I could cope was counting the days until I was 18 and then leave home.

Which I did, not too long after I was 18, and I could leave home legally and no one could make me go back.

I was free at last.

If only I could get away from my MS like that, if only there was a way for us all to escape MS.