Playing Football with the Dog

Playing Football With The Dog

I miss my son when I play football with the dog. I can still hear the laughter and the growl as boy versus small terrier took place. I let my mind take me back to those moments in time. As I wind my way around the garden, with my son’s image following me. Before I could control those images of time that has passed, a soft sadness wrapped itself as I took a look at the landscape I once loved and enjoyed.

I turned sharply to avoid the capture from the frenzied ball of fluff, when I slipped on the freshly made mud, as it splattered up my face, my foot sliced open the sludgy earth and I knew I had to make ready for the squidgy impact. I started to laugh and was still chuckling, impressed that I managed to evade complete coverage. But that joyous echo of fun and calamity was hollow and empty. I stood up slightly stiffly, what a silly thing to do and such a mess to get yourself in. Slightly bruised in ego and thigh, I looked up to my son’s room and saw a shadow in the window.

In those webbed and filtered moments my son and I had spent together, spinning a dazzling history, I could hear what once would have been his sarcastic retort at my incompetence to stay on my feet. The shadow disappeared and Amber had got over enthusiastic, bouncing up and down splattering mud and barking at the ball. I wanted to retreat into the house, having fun with free movement just seemed so wrong.

Amber had taught my son how to tackle with finesses of speed, with the agility that a professional footballer would be proud of; he had shown great promise and had been spotted by a local team coach, before tragedy struck. My son’s presence was on every blade of grass, I could no longer stand the emptiness. Amber sat down and looked at me with her crooked cropped face; note to self, let the dog groomer do her job!

That little dog had more empathy and understanding than most of the medical team we had met. They seem to be willing to let my son just fester in pain with no real understating of why. I attentively start to move and look at the mud pack on the side of my leg. Perhaps that was a little unkind, in reality because of the history of ME they were wrongly informed by those that did know better, but out of profit and gain promoted that it was just a case of getting your mind over the fact your body was or had been ill. You try to say otherwise you are met with a caustic reaction. Mental health in this country is being let down. Explore the physical and you are half way to healing the mind. Addicts throughout the ages have taught us that. Understand the withdrawal and how that has an effect on the chemical changes in the brain, and you can make miracles happen.

I breathe in deeply as I pass all the medals in the porch and touched them with the sadness I felt. I must get lunch I sighed, so I went to clean myself up. It was no good; the mud was so extreme I’d have to have another shower. I sighed with a downward glance as Amber wagged her tail up at me. The sloppy sucking motion of the tunic I had been wearing clung to me as though it did not want to let go, and enjoyed covering me more with the gooey stuff. Amber was now waiting in the spot where the water falls in the shower. I looked at her as she turned her back to me and water stared to power wash her body. I rolled my eyes as Amber tried to bite the flowing water, but as soon as I stepped in she calmly waited for the soap.

Disasters come in differing forms, for different people, don’t you think? Someone’s disaster is another’s slight inconvenience. One person’s pains are another’s insignificant discomfort; we all see things differently and cope in differing ways. Most days I can put the past where it belongs, shut it away and look to the here and now as researchers don’t know what my son’s future holds, I have learnt not to look too far ahead. But bad days start with those times in my life when what used to be insignificant and such a part of life you rarely thought about them. They are now the ones I long for, those insignificant happenings have become those which mean the world to have back, as my everyday reality. I smile as Amber lies under the radiator to dry herself. While I dry myself down and change my clothes.

With determination I put on the radio and clean the area to prepare the food, my hair still wet and limp. A couple of years ago I would never have dreamed of letting my hair look so un-kept and free. But who was here to see or care.

Once a great joy of mine, I would indulge myself in preparing a meal that would be eaten with gusto, each bite swallowed without a chew, I would scold him and he would shrug his shoulders. Indigestion was nothing to be afraid of, just a burp to resolve the discomfort. Coeiliac is part of the autoimmune picture I try to paint with eloquence to educate the people I know, but end up painting unsightly blobs they don’t understand. With one autoimmune inconvenience came more, with his ME we have found many lurking in his tortured body.

I become aware of the conversation between interviewer and promoting psychologist, the kind and friendly way she spoke, that put across the plight of these poor people and how they could simply improve function by moving. I could hear the presenter of the program taking the bait, of just need to re-educate your body back to health. The specialist that was reportedly the expert with regards to ME, was as sweet as acid on an open cut, in her narrative.

One vertebrae at a time, prickled with the dismay of it all. I shouted at the radio, “their bodies produce twenty times the amount of acid in their muscles than normal people, you should know that! Lactic acid causes damage to their brain, don’t you know!” But they didn’t hear. Somehow the science is not getting through. Mental health being a buzz word at the moment, “we are all mental, all dealing with problems in life. Few of them can be resolved by thinking that the world is fine and dandy.  You need to physically resolve the issues and kind people to support you while you deal with  the shit that is left!” The words bounced off the walls.

I remember reading the psycholobabble when my son was first diagnosed. These people with the power to control everything to do with ME astound me! The lengths they would go to and the harassment they give out. How they were allowed to do that and how stupid they are.

Coeliac was to do with modern day demons they explained. This explanation fed into our, “bless these poor unfortunates” reasoning of mental health; they convinced crowds of doctors and politicians, who were only happy to comply. Don’t bother doing test on these poor people, you will be feeding into their belief system that they are truly ill? Researchers should understand the damage they are doing to these poor people, giving them reason to stay ill instead of working to be well! Everything to do with your body can be controlled by your mind, don’t you know, strong mind and stiff upper lip, is all they need!

I am sure that if they said that broken bones could be healed by the patient’s own determination, our government and the NICE people would wholeheartedly believe them. We all like to think we are in control and to blame lesser mortals who don’t happen to get better, as if it was their own weak will that was to blame!

I enter my son’s room, just as he flings into flight landing on the bed making a duvet angel. My stunned face looks down on a face of a zombie like child, who just can’t help himself but to live and get the most enjoyment out of life he can.

Mind body continuum does not figure in his life, psychosomatic behaviour is nothing to him, control over his world not given a thought; just the need to live life to the fullest he can, whenever and however his able. You have to admire him.

I thought, as I put down his plate and sipped from my coffee, and looked upon his smile from his grey green face; if it was a matter of your mind controlling your illness, therefore your body, he would be fighting fit!

The End

The above story is a work of fiction, but Amber plays herself. What kicked off the story was the quote from some of the papers I have read about the school of thought that kicked off the notion ME was not a neurological disease, but a culture bound syndrome? These little nuggets are real tell-tale signs of how the man thinks. It’s a bit like reading about Cinderella not being able to go to the ball, because the stepmother has a plan.

A quote from Weesley:

"The epidemiology of environmental illness is reminiscent of the difficulties encountered in distinguishing between the epidemiology of myalgic encephalomyelitis (ME), a belief, and chronic fatigue syndrome, an operationally?defined syndrome...These patient populations recruited from the environmental subculture are a subgroup of patients who can be expected to show unusually strong beliefs about the nature of their symptoms, associated with a high percentage of psychiatric disorder...These total allergy syndromes are akin to culture?bound syndromes afflicting modern developed societies where sufferers from unexplained symptoms no longer see themselves as possessed by devils or spirits but instead by gases, toxins and viruses."LM Howard, S Wessely. Clinical and Experimental Allergy 1995:25:503?514"

Weesley should tell that to my sons Villi!! My son was diagnosed as having Somation disorder and was never checked for Ceoliac disease, because the medical profession still believe when they suspect CFS, it is somation and no testing should be done? The sad thing is Wessley is still believed even though the evidence has always been there that ME is a Chronic neurological illness, but there again Donald Trump is still sounding off; its funny old world.

Ceoliacs is an autoimmune disease that flattens the finger like tentacles that collect the vitamins from the small intestine and can go hand in hand with ME.  I have no idea how long he has suffered or if this could have been avoided if a more sympathetic approach had been followed.

My son was diagnosed with PoTS and because he was put on GET I wonder what effect this had on him. As far as I am aware no Paediatric looks for PoTS (Postural orthostatic Tachycardia Syndrome)

Most of all I think Weesley and all his followers should take full responsibility of taking Millions pounds out of research by producing a very bad trial called PACE and protecting it by calling people  who ask for the data as "vexatious". They should apologise for the appalling things they have said about  the people they were supposed to be supporting through their illness. How they have hounded and treated other Doctors and researchers.  As Maureen Hanson put it:
“Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.”
Her resent research:
https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

The Tymes Trust has given me invaluable information over the last year or so, Jane Colby has tirelessly worked and campaigned to protect children and their families like me. As I was just finishing this story Jane's Blog fell into my FB page, great minds think alike, especially when they stand up in stripysocks!

http://www.methenewplague.net/blog.html

They have a new leaflet to explaining Paediatric ME:

http://www.tymestrust.org/pdfs/mecfsseid.pdf

Researchers like Julia Newman are proving what we have known all along, but still get less notice in the headlines. Prof Julia shows and explains the effects of exercise on ME sufferers.

Standing up for Fatigue - Professor Julia Newton and Professor Jason Ellis

https://www.youtube.com/watch?v=auFEYiDrJts

And now Julia has another paper, which proves that the heart and the blood volume are affected
http://openheart.bmj.com/content/3/1/e000381.short