How to Control The Pain When You Are 10 With ME!

How to Control The Pain

When You Are 10

With ME!

I’ve been sitting here for over two years now! My head hurts with it all and I don’t like or trust the doctor, she don’t listen.

She sits there with her put you down smile, thinking she knows me and my body better than me and my mum! She is one crazy lady, and I have to sit here and listen to her babble on. I just choose the things I want to do apparently; I sag in my chair. She twists and turns everything my mum tells her about our life. That I choose to avoid the things in life I don’t like, the only thing I want to avoid in my life, is her! I hear my granddad saying ‘She is no good for man nor beast!’

 I’m ten, who is going to listen to a ten year old? No one in this room and that’s for sure. At ten you are stuck as my granddad would say “between a rock and a hard place”. He would continue ‘you’re up a creak without a paddle my boy; don’t let them grind you down.’ My Granddad loves a good metaphor, and he mixes them with a passion. I would like to be in the classroom when he meets my teacher, who hates them just as much. Not sure if either of them would come out alive.

I should perhaps explain I haven’t been sitting here for two years solid, I was being sarcastic or is it ironic? Sarcasm is not the lowest form of whit; it is a way to survive when you’ve got ME. Not many people get that though. I’m lucky my mum gets it, she understands, she calls it my frustration monkey. ‘Put that monkey back in the cadge and feed it a banana, now is not the time or place to let him out’ I hear my mum say.

 I’ve been coming to the hospital for two years though, and I might as well of sat in this chair the whole time. Nothing has changed, well that is a little untrue, my world used to open to everything, now my world is just the house on a good day, my bedroom on a bad day. Somehow, and I don’t understand or know why, but my body just deflates like a soggy balloon when you are really trying hard to and blow it up. The one balloon in the whole packet that has tinny pinprick holes in it and the air just wheezes through.

It is so scary when your head feels as if it is going to burst open, when you’re legs and arms go numb and you can’t see, but they think I’m a fool for being scared, or I’m just being over anxious.

How can your body do that; make everything you do suck the energy and leave you in so much pain! It’s a big pile of shit! “Mountainous mounds of shit”, my mum calls it. She makes me laugh. We make huge shovels in our minds and shovel the shit away. I pile mine on the “She Devil”, but I don’t tell mum that, she might not like that bit.

I can’t talk about ME much, I can think, and that don’t seem to bother my bones too much, but if I try to talk it through it makes a fuzzy sponge in my head, that I can’t think around it or through it. The sponge grows with cold water; it fills all the space in my talking and logical mind. The worst thing about that, even when I Skype my friends it zaps me. Over excitement or just plain looking forward to things can make my brain freeze, but I don't stop. I have to time it though, would like to throw the timer away, whizz out the window.

I try concentrating on the soundless mouths around the clinical room. She Devil didn’t put her lipstick on very well. It looks like she can’t stay inside the line. I’m beginning to hate colouring, holding my arm and concentrating just gets to me, as if a boy of ten wants to do that anyhow. Colouring it seems is the latest cure! It’s on her teeth and now that is all I can see. She calls this way of distracting your mind as ‘deflecting the pain!’ It shuts out the pain most of the time until your mind gets too tired of playing tricks on your body, and then as granddad would say ‘ya buggered’.

Just think if I sat here still and quiet no one would notice. Who am I kidding no one notices me anyhow! I’ve already blended into the background, I've just become a statistic. If I try to explain what is going on, I’m accused of negative thoughts. So there we go, the truth is negative!

Mum is fighting to have a test done for Lymes disease. She is willing to pay for the right ones. I look at the She Devil, and for the first time in my life I feel real hate. The way her eyes look at my mum… I turn away.

Just think if I stayed here I could whisper advice to all the poor kids that have to listen to all her bullshit. Her management is ‘keeping calm, close your mind. The pain is not there! Really, try telling that to my eyes. There are no organic reasons! Now that is simply not true! What is the point, she is too dumb to understand the situation with ME. ME is a complex autoimmune disease and it affects the whole of your body.

Anyhow can anyone explain how the hell my mind will be able to help if I have an infection? I don’t know a lot, I’m only ten, but I am sure that a virus or bacterial infection will not just jump out of your body when you tell it too. Who is the immature one?

You see my legs, brain and stomach just aren’t listening to me, no matter how hard I tell them there is nothing wrong. I wonder how many kids have had to sit and suffer in this way. If She Devil was training a dog the way she treats me, someone would report her to the RSPCA! They would take her to court!  Where are the NSPCC when you need them?

My mum says that we need to come; we have to play the system until the system becomes fair and starts to understand ME. Perhaps they should go back to primary school! We are taught to be inclusive and tolerant to individuals that are a little different to us. I don’t see that happening in this room.

Perhaps at the primary school my Psychologist went to, they didn’t uphold the tidy rule or respect one and trying to understand the difference in people, was defiantly not part of their curriculum. I want to smile, but know that just would not be a good idea.

Maybe they didn’t have the right sort of discipline? Though she expects my mum to discipline me, she thinks a strong will, will get me back to school. I play a game of darts in my head. I use the She Devil for a bull’s eye. CBT shows you to deflect negative thought, I guess it works, I scored a bull’s-eye, and it made me feel better.

The mention of school makes me sad. I try everything I have to block it out; She Devil picks up on it and interprets it in her own special way. I try to block the memories, but it’s too late. The faces of my friends bounce joyfully in my mind. I remember the park we played in after school, how climbing felt and the freedom of movement under the sun. Freedom from some of the pain would be a start. I don’t see that is going to happen anytime soon.

The game I brought on our last shopping trip still sits on my table. I haven’t been able to tolerate the games on the TV, old films are OK but new ones take it out of me. It’s sat there untouched for a year. I can’t wait to show my friends and play it with them, not sure when it will happen.

I look at her as she asks a question but all I see is her hair. Did her mum not teach her to brush her hair either? Why do some people just give up on themselves? I can’t understand what she has said .

I start to wonder how she would feel, if someone behaved the way she does to my mum, to her. I wonder what her reaction would be. But there again when you are ten you’re not allowed to think your own thoughts, and you have to behave in a certain way. When you’re ten, you’re not a human you’re a child!

Her hair is a tidy mess though, another of my granddads sayings or is it mum’s. How can a mess be tidy?  I wonder if she looks in the mirror before she leaves for work. My mum tells me not to be so unkind. She Devil is, she is the unkindest person I have ever known; she hurts my mum with her power. I don’t know what they teach them at university, I wonder if they give out dragon degrees. She makes a good dragon!

All of me hurts, and I just want to switch off. I try to find a sitting position that is comfortable but nothing works. The pain is making me feel sick. I feel cold inside and I just want a cuddle, to feel the warmth of mum. If I get close to my mum though, they look at me as though I am playing on her.

I can feel my mum’s pain and frustration. I feel as if I have let her down. I don’t answer their questions, I don’t hear their questions and my mum looks so disappointed. I’m sinking into the world of fog, as the sponge in my head fills up with cold freezing water. Cold damp fog that has seeped through into my bones!

I feel like a performing monkey in front of her creepy beady eyes.. I know that whatever I say she will be putting pressure on us to comply in the opposite direction, regardless of the facts. We could not possibly understand medical matters, I’m just ten.

Finally we are allowed to leave and it is as though a spell has been broken. I’ve wasted all of my energy on what? Made to feel I am not trying to get better and how is that going to help? Get back to school with a cold wet sponge for a brain. My teacher is going to love me.

My mum squeezes my hand as I try and get my legs to work. I try to hide my reality, they would disapprove of it. I feel like we are in the film of Forest Gump, ‘Stupid is as Stupid does’, I suppose and no matter what the researchers say we have to dance to the tune of the She Devil.

Kids with ME have a hard enough time with ME but the medical profession, through lack of understanding give the wrong advice. Their advice is based on the "Mass Hysteria" at the Royal Free hospital, may I remind everyone we live in 2017? 

Dr Speight Helped us to understand 

https://www.youtube.com/watch?v=208JacsB5kM

Mark Van Ness has some understanding and we now use a heart Rate and Blood Pressure monitor which helps us see what is happening to Angus's body to some extent

https://www.youtube.com/watch?v=q_cnva7zyKM&t=48s

A blood test would help, but it could take a while

https://app.secure.griffith.edu.au/news/2016/03/01/screening-test-for-chronic-fatigue-syndrome-on-its-way/?src=hp

Should Dr make amends, yes but also NHS, NICE, DWP, and the Government

http://www.telegraph.co.uk/news/health/12033810/Its-time-for-doctors-to-apologise-to-their-ME-patients.html

If mass Hysteria was a thing the Ebola should have made the world hysterical and all of us should have ME?
https://www.royalfree.nhs.uk/news-media/news/infectious-diseases-our-history/

Thank you for taking the time to understand some of the problems kids with ME have, now could I ask you to spread the word :-)

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

A bit of word Tomfoolery on a Monday morning

If you have any form of Chronic illness you will know the Hell in Beauty

Add your condition and the beauty of your life: Family, friends, cooking, gardening or just a small amount of time pain free. I want to build a landscape that we live in X

The Living Hell of Beauty

Meet and greet great disaster

With every punch and blow

You stand still

Stand firm I say

Take it like a man my girl!

What the bloody hell is an upper cut?

Oh... there it is!

There is something deep

Within that makes me hold

Hold it in, and take the blow

Solar plexus

Perplexed

You’re from shoddy family

Connections far too low

To be strong of will?

Listen to him, listen close

He makes sense

Does he not?

Shadow boxing

Does not make you stronger you know

Weaker

Hold firm

The truth do will out

Eventually

In the end

Take a look from histories landscape

Torturous

Forsaken

Beleaguered

That soft foggy landscape

Where no beauty should aspire

But see the poppies

The lowly nodding poppies of beauty

Do you hear the voice of the nightingale?

It rises with the truth

And the hidden beauty

And yet, the weasel and the stoat

Gnaw and bite the beauty back

Hide the truth

Behind the veil of fog

That covers the beleaguered soldier’s agony

Their hypermobility flung out with PoTS

A belief system

Not a living hell?

Quiet contemplation will fix the landscape

March I say, march!

Accept you are mentally ill

Because I say so!

You are not living on a

Battlefield!

You are living in a dream world

My Girl!

Because I say so!

It does not smell that way to me Sir

The sun of truth

It does burns bright in my eyes Sir

I see the world as it is

Thank you

I see the poppies

On the gentle breeze of change

I hear the nightingale singing the truth 

In Berkeley Square

And beauty

It has always been there

And is set to rise!

Beleaguered soldiers young and old

Will walk hand in hand

Solid, strong  

And united!

They shall not be forgotten!

Nor will you Sir

Nor will you!

Needles in a Haystack

They are looking for tinny needles in a ravaged haystack! Jostling for funding making claim and counter claims, while people struggle to gain some sort of life. I thought to myself as I plunged the toilet brush down and around the u-bend, giving the toilet another good dowsing of cleaner.

This is defiantly going to be a defining Tilly Moment, I smile to myself. I took a few moments to watch the vortex suck the cleaner away. It’s like needles in a haystack on a farmyard of disgruntled animals, I considered with the loo brush suspended in thought. There are a lot of fluffy ducks; I chuckled as I attacked the floor with gusto, a Cockrill, a grumpy donkey that is flogged for being slow. A picture of an idyllic scene popped in my head as the idea gained momentum. Where there are animals, there is normally a lot of… well stinky manure to clean; that’s the story of my life I shruged as I turn on the shower with my determined furrowed brow. I pull up my rubber gloves.

This analogy sums up our knowledge of ME/CFS, Fibromyalgia, MS, coeliac and Alzheimer’s, I continued thinking as I rammed the double duvet in washing in the machine. The salesman had said it would take a king size duvet, but it don’t, frustration started to set in, coupled with my anger, I decided the best cause of action was to sit and write.

If you take the haystack as the central nervous system with the many complex issues hidden inside, that haystack contained within a farmyard (the body of the patient) with many animals (cells, organs, glands and limbs) around it, that are being damaged by ME/CFS (the needles). Even though it has been proven beyond any doubt the needles are there, not everyone accepts this – they cannot see/find the needles, so dismiss the damage being done, choosing to impart the blame to all sorts of behavioural disorders. I purpose it’s not their fault? They don’t appear to possess the intelligence to understand we still do not know all there is to know about the human body. I sip the hot coffee and think. Perhaps they are like the pre-Socratic philosophers who; bless them, believed that the world was flat. Philosophers are full of barmy ideas, but you cannot reason with them, they are all knowing.
Unfortunately the people that have proven the needles exist don’t know what the needles are made from, or how to find them. This means they cannot find the right magnet to locate or get rid of the needles before long-term damage is done.

The poor farmer (the brain or in our case Angus) has been running around shouting about the danger, but no one has been listening. His animals are being hurt (animals being the organs, glands and limbs) are in pain as the needles surge through his/their body. I hold the steamer in mid-air as I once again try to get rid of the toffee on the cooker. I think the Philosophers are barmy, I giggle as I start to write my outline of a story. Here I am thinking in terms of sheep and pigs as though it would make ME more understandable, well it makes it more fun, so I make a coffee and give the story my full attention.

The farmer, I thought needs all of his animals to be fit and healthy, as they make up the ecosystem which makes the farmer’s beautiful and diverse farm. But the longer this situation carries on the more dishevelled his haystack becomes, no matter how hard he tries to rebuild his haystack, another wind comes and blows it down. The animals then are left to forage around picking up bits of hay, and are then in danger of finding the tinny needles and consume them or roll around in them. No graphic illustration needed of what could happen to the animals.

Now the Mother of the farmer has being witnessing his plight, and has watched over a long period, helping as much as she can. She understands that the best thing for the farmer and his animals, is that a huge magnet, but knows the right one has yet to be found or made. Maintenance is the only option open to her for now.
She constantly runs around all the people she can think of to find out how and when the winds will come and bring yet more needles. Some dismiss her and don’t understand about the needles and the winds, which she is surprised about. The concept of winds carrying needles are not new – coughs and sneezes spread diseases.

The wind however is like a swirl of nature that hits at unreasonable times and by the time the disbelieving people come and see the farm; her farmer son has cleared up and hidden the damage. He is a very proud and hardworking farmer, which loves his ecosystem and wants it to work properly. He wants everyone to see the beauty of his farm and not the chaos. His ecosystem runs around plugging gaps as best they can, but they are fighting a loosing battle.

For now the farmers mother has put a huge cover over the haystack, she knows it’s not strong enough if the winds come down again, she knows the animals will nest, pull at and rummage through the haystack, but it is the best she can do for now. The ecosystem shows its determination, but how long can this now flimsy covering contain those sharp implements of destruction? She also knows the cover keeps the haystack dry and brittle and at any moment could burn out! Then how would they be able to sustain the farm animals? She has taken the farmer inside the farmhouse for a rest. But the farmer is all forlorn without his farm and the friends that help him to maintain it all. His mind wont rest, he needs to get on.

People come and go with their new brooms and sweep, taking all the good hay away with them. She shoos them away, but they come back with bigger brooms. She is a strong and determined Mother but that does not bode well to the people who still believe the world is flat and that, positive thought techniques is the only thing that could possibly drive a body to wellness.
At last it’s time to put the animals away for the night and the farmer and his mother start to run around the farm trying to catch chickens, the three Billy goats gruff, geese, fluffy and the not so fluffy ducks, find and catch the errant pig, convince the stubborn donkey it’s time to go in its stable and cuddle daisy the cow. They fall in a heap and laugh about their topsy turvy days. They dream separately for a while of the farm they know they could have.

When  the farmyard falls quiet and the farmer is asleep at last, the farmers mother goes out to the haystack and has a closer look, ties down, as best she can the flimsy covering. Sweeps the debris and pushes it under, hoping it will be contained and out of harm’s way. She walks slowly to the hill near the duck pond; her favourite spot. Her faithful dogs by her side, she starts to wonder at the magic the farm holds, as the sun sinks on another exhausting day, where the animals have ran rampant through the haystack.

She reflects on when they found a beautiful butterfly struggling to fly in the wind. How they both giggled with joy when they caught it, and put it in the huge greenhouse full of plants so that it could be free to fly without the winds hindrance. How it danced and bobbed around on the warm breeze of the ventilation fans. She hopes they will be able to see it tomorrow. But you can never tell with butterflies, fleeting beauties as they are. Perhaps she can draw one. She looks across the sky to see the stars and the silvery moon, there are a lot of things to marvel at and a lot of people that will never take the time to see what happens to be in-front of them. She hoped that she was not one of those people.

We had once been told that the world was flat and if we set sail we would drop off the end, and look how that ended, she smiled to herself. What if we just took the word of those people who said our world was flat? She remembered she had been told that infants didn’t feel pain when they teethed, and that nappy rash was most defiantly not caused by the infant teething, when it was so clearly the cause, she started to giggle. Scientists said it was impossible that Bees could fly, due to the aerodynamics of their shape, but they do. ‘I love honey’, the farmer’s mother laughed to herself. ‘Sometimes’ she whispered out loud, ‘we see and we don’t look, we hear but we don’t listen, we think we know, but simply, we don’t understand.’

Most people choose not to listen to her, for she is just the farmer’s mother, and no one will listen to her farmer son, as he is considered too young to know what the world is about. Worst of all, some think he would rather have a dishevelled farm with no ecosystem. How little some intelligent people want to understand, or open their mind to. But as always there is money to be made in muck. She sighed and her shoulders sagged.

She had read that Katerina Netolicka, a Prada Model, died from working out too much, she was only 26. Rowing as hard as he could didn’t do Andrew Marr any good either, and that Henry Worsley died after developing a serious gut infection, when he had pushed his body to the point of no return, he was only 55. He thought he just needed to rest and recoup. Why is it that we think we can push our bodies so hard with no detrimental effects? She mutters as she looks across at the purple huge that covers the slumbering farm, they don’t see the chaos because they don’t look for it, they can just deny it happens, because we all cover it up.

She looked out over the flat land with its shades of purple darkness and up to the moon, now plump and round in the sky, if only they lifted their chins and really looked at that the silvery moon, they would understand that this world is round, full and slightly surreal, and that’s ok! If only they could offer a blanket to keep her warm, so that she may enjoy the moon and not fight the cold of despair, it would be a help.


Change what you can, and learn to live with what is left, she softly said to herself.

Prof Julia Newman has found some very interesting needles

https://www.youtube.com/watch?v=0UFTngBp7ek

And here with Simon Ellis they give a good understanding to the full round picture emerging of the complexities of ME.

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

They need all our support and encouragement! One day I feel sure, they will come up with an answer for us. A day where we can go to a doctor and feel confident they will understand, and do no more harm to us!

ME\CFS Is a Big Fat Bully

Tilly Don't Like Bullies!

A month ago I explained the constant circle that Angus and I are in, expecting that circle to be broken at some point as the weather changes. In fact Angus managed to get back to school for a few hours each day and we extended that time by an hour on returning back after half term. He was more tired but we expected that. But suddenly on 29^th February and Angus broke out again in soaring temp (40 +) and painful hips. A trip to the hospital confirmed my fear, ME/CFS has struck again and this latest symptom is unlikely to go away any-time soon.

Angus, it has to be said has taken this on the chin - I really don’t know how he does it! Perhaps by naming and shaming ME/CFS it no long can bully us, we know we have to fight and that is exactly what we will do!

Our battle this morning is to find something Angus can eat. His appetite has depleted and his sense of smell, taste distorted. His most favourite foods are now hard for him to face. Children with this condition are labelled fussy eaters, but would a child really turn down ice-cream if it was their mostest favouritetest kind ever!! And normally would have walked over hot coals or sand to eat it? I think not fussy, just too ill to eat!

With this in mind I went down stairs and made some toast, put cereal in a bowl on the same tray and went into the lounge to have breakfast with Angus. Angus tires out when sitting at the table, and I have found if we have a slow start to the morning he gets less headaches, and has more energy later on. I ask him if he would like a drink. His anxiety hits the roof because he does not know if he is thirsty. He flaps like a chicken who knows it’s for the butchers block, comical and I find I have to stifle a laugh. I go and get a glass of water from the kitchen, and hand it to him, while I hold his hand. He looks at me with those confused eyes, and begins to focuses on the reassurance on my face, takes a sip and starts to calm down.

‘I don’t want to eat mum, I feel so sick’

‘I know my boy, but you have to try, your body needs energy.’

‘I know’ he replies with that resigned voice that yells at my heart strings ‘you unfeeling bitch’. I sit and eat the toast that I would rather be porridge with blueberries, but the blueberries smell make him feel even sicker, and I need to encourage him to eat. He munches on dry cereal dutifully. With each swallow I see his struggle. When he finishes he shows me his empty bowl. We smile, as the first days struggle is over.

‘Are we going for a walk today mum’ he asks,

‘No I think we will play with the dogs in the garden’ His face falls ‘how about we set up some jumps for them?’ I encourage him, he smiles and our second struggle begins. Angus now has to rest so that at 11 am he will be able to play with the dogs in our garden. Yesterday we went for a walk and we got down the road when his fatigue hit like a bolt out of the blue. His legs went to jelly and he was incredibly dizzy. Car drivers are not very considerate of a dog walker with two dogs and a ME/CFS child.  I was a little scared to how I was going to make the 300 yards back home, and now find I am a little hesitant about putting myself through that again. Even without the dogs I would not be able to carry Angus back home. Tilly also hates Car Bullies!!

Some hope from http://www.ayme.org.uk/news

On Friday 27^th February, there has been some coverage of new research into ME/CFS which is being described by the researchers as ‘the first robust physical evidence’ that ME is biological condition. This means it is not in your mind and cannot be controlled by your mind! 

Dr Esher Crawley, Reader in child Health, School of Social and Community Medicine, University of Bristol who has had some funding and is supported by AYME, said:

"Studies of biomarkers are important to help us develop hypotheses about this important illness.”

You can read her full report on the link above. In reality it means that they now know without a shadow of doubt that there is a biological cause to the immune dysfunction in many conditions. They now have to track down, through a parallel project how and why the dysfunction for many conditions are triggered and target treatment - at the moment there is no treatment available.

If they can establish this biomarker, this will then become the foundation of understanding this very complex illness causes doctors and will be able them to diagnose and treat suffers. It is a big hope, but a hope all the same.