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!

If your car was broke how would you try to fix it?

I wrote this post two years ago. As my son was going through Graded Exercise Therapy and Cognitive behavioural Therapy. Angus was deteriorating and was left bedbound. Having never being listened to I got quite cross with the medical profession, but that was no help to anyone. Two Years on we have learnt a lot, it is a shame NICE and the medical profession, NHS chose not to!

Yesterday I was taken by my family to the seaside; you cannot begin to imagine how this felt. I do not have the words to express the 101 emotions and joy. My twelve year old boy wanted me to hear the sea; I love the sound of the sea in summer. He wanted me to trust him. He wanted me to listen to him.

I took my own advice and I did listen to him, I did and do trust him. We ate fish and chips, we had ice-cream and we played on the amusements.

He took his own Heart Rate and Blood pressure readings, and I did not say a word. I have an amazing young man who is my hero, who is unique, my prize possession along with his sister who took me out for a Sunday jaunt to Felixstow.

How things could have been different/should have been different if they had only listened back then at the beginning. They seem to think that if the wheels move then don't look under the bonnet but: 

If your car was broke how would you try to fix it?

Say you had this car, I'm not talking about any car but a unique, your prize possession of a car. You had this car from new and lovingly looked after it.

It is a glorious and beautiful sunny day, a good day to go to the beach. You know the sort of day I mean; the one you have been waiting for after a long hard winter. There is a crisp joyful tingle to the air, the blackbirds are singing. The sky for the first time, has that watery blue that makes you want to bath in the light of the warming sun. You really need to get out of the house and the idea of fish and chips along the sea front, with an ice-cream as you watch the sun slowly sink in the sky. Those sort of days that warm the cockles of your heart and soul. The days that make life worth while.

You go to the little car that is your pride and joy and marvel at the paintwork gleaming in the morning sun. You check everything is as it should be and you turn the key. The little engine splutters into life and although your a little puzzled to the haphazard running of the engine, you can't wait to get started, so brush it off as one of those things. Gently you start your journey but the buzz of the engine makes you just want to go with the flow, and as the engine fires into action and everything looks and sounds OK, you put your foot down and the little cars revs with joy.

The top is down the wind is blowing the cobwebs away and the simple pleasure of the beach starts to sing to you as the salty air fills you with memories and dreams. You hear the little engine misfire, and you start to loose speed. You are still moving, so not to worry, we will get there, we are in no hurry. You pat your pride and joy with reassurance and confidence, that when you get home you will be able to sort the problem out.

On the way back home, after just managing to get the fish and chips, you say not to worry we will come back when we have sorted the issue out and have an ice-cream next time. Your little car slows to a stop and you call the breakdown services out.

But they have no idea what the problem is and as you both stand there and scratch and look for problems it starts to rain. The emergency services advise you to fill the tank up with fuel and try again. many times you try to get the little car to the garage until finally you decide to go and get the fuel and fill the little car up where it stands at home.

While you check everything you know to clear the unseen problem out you dream and plan. Glorious days at the seaside getting that ice-cream you never had. going to summer shows, visiting friends and being with family. The little car keeps trying but even if you get to where you had planed to be the little car can barely make it home afterwards. For days and days you try to get the engine fired up again but it just wont turn over.

On the days you have it booked in to the mechanics for an overhaul, it runs - perhaps not perfect and not as it should be, but the engine ticks over. They say to you, just take it out for a good run, and it will be fine, it will clear out of all the gloopy stuff and will be better after that.

Each time you do this your pride and joy's engine keeps misfiring, and the paintwork somehow dulls no matter how hard you try to polish it. Other days it fires into action and you have a hard time catching up with it and fill your heart with hope, but this never seems to last very long. You sit with the little car, dreaming of past outings, the fun with family and friends you could be having. You plan.

My question is what would you do?

Try to keep starting the engine?

Run it flat out to try and clear the problem?

Trust the mechanics with their spanners and wrenches?

Try to look closely at the fuel?

Check the battery?

Look at the alternator?

Everything is just very slightly damaged in Myalgic Encephalomyelitis (ME)

In Dr Myhills Second Edition of Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis it's mitochondria, not hypochondria 2017 she has the same sort of analogy

Think of the body as a car:

Engine = mitochondria
Fuel = diet and gut function
Oxygen = lungs
Fuel and oxygen delivery = heat and circulation
Accelerator pedal = thyroid glan
Gear box = adrenal glands
Service and repair = sleep
Toolkit  = methylation cycle
Cleaning - oil = antioxidants
Catalytic converter = detoxification
A driver = the brain in a fit state

Every thing on this list has been effected by ME

Tilly Moments: Learning to Catch ME/CFS Before They Fall One of t...

Tilly Moments: Learning to Catch ME/CFS Before They Fall
One of t...: Learning to Catch ME/CFS Before They Fall One of the most important things I have learnt throughout Angus crash with ME, is learning ho...

A year on and Still learning to Catch ME/CFS Before They Fall No Data released from the PACE trial either

Learning to Catch ME/CFS Before They Fall

One of the most important things I have learnt throughout Angus crash with ME, is learning how to catch him before ME strikes yet another blow; it is difficult and very frustrating.

Knowing triggers is important, but it’s like trying to hit a moving target. The symptoms it causes are complex and immense, as it affects all the functional workings of the body: flight/fright/stand survival mechanism, immune system, brain, spinal fluid, respiratory function etc. in other words the whole of you, the way it reacts and how you behave and think. Nothing is left untouched, and can be misunderstood.

Listening to the body’s slight shift and changes is the key I suspect, but again it is very difficult and time consuming. Being prepared for the ever changing ways as you progress up or down the functionality scale is a little tricky, and I am beginning to wish I had a full troop of special ops, trained to kill and a couple of spies wouldn’t go a miss either. Fluffy socks – I’m only a mother.

The worst thing of all with this slowly squeezing the life out of you disease, is that as soon as the sufferer looks, and moves better, they and the people around them think they are ready to strive forward and recovery is on its way. In reality, hidden within their cells is a silent assassin.

After a good day or even a week or two in Angus’s case of being normal – comes the slow stealth of the assassin, killing the ability to produce energy, then the pain of every muscle shouting the assassin is coming, every movement a hidden struggle as the assassin moves through your immune system, opening the doors wide for any little bug to crawl in and cause havoc. A slight sore throat, a tender ear, they rest but it’s too late, the assassin has done its work. The scary part is that you never know what you are going to be left with, as each attach takes a little more away from you with a longer period of recovery (that part is very scary).

And what do most people see – someone who nearly got better, but gave up.

On the outside is my Hyper 9 Year old son, who thinks, and we believe is invincible, because he looks it. He is strong of will and determined – life will not hold him back!!! Is he frustrated you bet!!!!

On the inside everything is eroded and corroded by the silent assassin, wires of pain left bare.

Every assassin leaves a trail and a signature, Angus’s ME telltale clues of this disease:

v     Slight change in his apatite and taste, even his favourite treat taste funny

v     Sounds become irritating – unbearable ­– painful

v     Cold and painful muscles even when he is resting

v     Becomes confused – can’t answer basic questions

v     Temperature changes from high to low

v     Sore throat

v     Painful ears – congested – eardrum bursts

v     Because of the toxins in his body he starts to feel sick

v     Eyes feel uncomfortable – painful – light sensitive

v     Clothes and cloth feels harsher than they did

That is just the beginning; the signs can come gradually or are quick to set in. They never come in the same order and they can go quick or take days to subside. The scary thing is that some never leave.

Angus is soon going to be 10, he has learnt to live with chronic pain for the last two, nearly three years, with his ability to recover on a go slow. What you must ask yourselves HOW WOULD YOU COPE IF IT WAS YOU???

We don’t want sympathy - there are a lot of people out there coping with pain and have life shortening illnesses. What I do need you to understand is that if we push people into recovery with ME/CFS Fibromyalgia we can do great harm, prolonging their suffering and making it life long.

Evidence shows that if you take your time, stopping at a sustainable level for a long period before you increase your level of activity (you have no idea how frustrating it is), you can regain some or most of what you have lost.

The question is how do you do that with a hyper nearly ten year old? How do you catch them before they crash to the ground? bouncy castle? Safety net? Or Loving arms?

2017 and my son has been housebound for all this time. Because I found out what this illness needs by myself his symptoms are only brought on when he over does things, a price he often pays to enjoy some life.

Research has moved on but still we fight the powers who want to silence us, why do they want to do that? We can only but guess.

Perhaps soon we will have a test and then some progress for treatment the proof is in the blood:
https://www.healthrising.org/blog/2017/03/08/davis-strategic-approach-chronic-fatigue-syndrome/

Tilly Moments: Learning to Dance in the Rain

Tilly Moments: Learning to Dance in the Rain: Angus has slowly slipped down, yesterday (2 nd April 2015) was a difficult day (his friend was off to see a film and he was desperate to g...

Learning to Dance in the Rain

Angus has slowly slipped down, yesterday (2^nd April 2015) was a difficult day (his friend were off to see a film and he was desperate to go to; we talked through how we could do this; but he even needed help with getting dressed, so we kept busy with other things. This morning he seems brighter with none of the awful tummy cramps that he suffered most of yesterday. So I’m hopeful that by allowing him to find his own way of recovery, he has got himself back to his low baseline of activity. This baseline causes no extra symptoms and many rest periods of just talking to friends and watching YouTube. He wanders around trying to keep as active as ME/CFS will let him.

Listening to others who have to control activity etc. like people with diabetes and thyroid, they seem to understand their bodies, but can’t necessarily tell you how. This whole controlling, because we know thing is not working for us/Angus, it feels as if we are constantly putting a round peg in a square hole.

It is very hard to make or talk about plans for the future, and therefore almost impossible to stay upbeat and look forward. It is more crushing to make a plan for the future and not be able to set a date to do it.

For example: Just before his last setback we had planed to go and see “Home” a new film that looks a lot of fun and one we would both enjoy. I was all set to book tickets for its first showing. We planed to take a few of his friends and have a pizza afterwards; this was to be his birthday treat/party. In our eyes this was most defiantly achievable. He relapsed and we had to go to the hospital that journey has had a long recovery attached to it. At the moment there is very little chance of us being able to go at any point in the near future.

You learn to cope with the setbacks, but it is very difficult to plan and therefore very hard to look forward. I keep telling myself as long as the “here and now is as comfortable as it can be, that’s the best…. I never do get to the end of that sentence.

Learning to dance in the rain x

Tilly

This year November 2016 we went to see a film for the first time in a year. His tummy cramps are part of the normal over exertion we have learnt to accept and this is slowly being recognised by the research now coming out. Soon there will be more understanding, and perhaps doctors will give our children more support and we won't have to fight so hard for the basic human needs. But for now, I'm just so grateful that with Dr Speight's understanding. His knowledge of ME, gives confidence is us and allows Angus to take control. He is in less pain than he was a year ago. 

Doctor Speight's wisdom has enabled me to allow my son to tell me how to support him. This is a wonderful gift.

It is now summer 2017

Angus is learning to live within his confines of his bodies ability to produce enough energy; cognitively and physically. It is hard to watch and support when you know how much he loves to do. 

The cruellest things are said by the doctors who just cannot accept this is a physical disease/condition, and wont support you or your child. When you sit in a room and they talk about keeping up with the social side of life you want to; well I am not quite sure? Put them in a suit of lead and tell them to dance the night away? take their oxygen away and tell them to keep a conversation going? Do they not understand how cruel it is? A young boy cramped in a cocoon, wanting to burst free?

I look across at his crestfallen face, one in which he thought doctors would be able to have some answers to the paradox world he lives in.

What do I say to this now young man, ill for four yeas with no answers, when he turns and asks 'When will it be over mum? When can I do anything but this" his arms fling out to the four wall of the hospital room, the only outing he will probably be able to have all summer. 

He is in less pain now, but we miss the sea, we miss the cinema, the shopping, coffee out for me and a hot chocolate for him, getting to see friends and taking the dogs for a walk, sand on our toes, we miss people that we will never meet again, the talking and enjoying the freedom of movement, just popping out for fun, ice-cream, the lake, Bury in Bloom, the theatre, the atmosphere, LIFE!

So please the next time you have an ME patient in your room, take a leaf out of Dr Speights book and give a little empathy. 

It is now 2018 and nothing much has changed. We haven’t been to see a film this year and it’s now the 6^th July.

He was 13 this year and we took him for a weekend away so that he may have an experience of riding a quad bike. It took a lot of planning and what I term as training to get him in a fit state to travel, and then partake in the event.

I explain in this video https://youtu.be/DNNeE6rhTm0

After that weekend he stopped talking to his friends. I am not entirely sure why. He heard a conversation when his friends thought he wasn’t listening, where they explained that they only talked to him because their mum’s make them. That he was faking his illness due to being able to go out and riding a quad bike, so he was not ill.

I would like to say this is just children talking, but sadly it is how society is made to think. If you are sick you have to show it either with the treatment you are having or being in hospital.  Chronic long-term conditions never get the publicity, they are hidden and used as a pawn in the game of politics. The undeserving sick is the way my son is seen.

Most Social Workers, Attendance Officers and teachers are there to stop the bullying, but when it comes to hidden illnesses; where you don’t die, they are just as bad. They are now actively looking for Fabricating and Inducing Illness, though there is no evidence to support that every mother with a child who has a complex illness suffers from FII. No records of wrong accusations are kept by anyone and no support given, and records wiped of the falsehoods. Who cares as long as it is not you right? No smoke without fire. Reading some court reports the lack of understanding is sickening. Some senior judges have questioned the increase. However they can only act on information they are given by the research and the medical profession.

 So, when I was questioned about this birthday event that also celebrated our 25^th wedding anniversary, I was not surprised. The fact that my son works harder than anyone just to sit up and take part in a conversation, is dismissed out of hand. Neither is his condition understood due to politics and empire building.

Foster homes are littered with children like my son, as Fabricating and Inducing Illness becomes big business and another empire to belittle the battles having a child with any form of illness, chronic condition or disability, and no one knows, because the mothers like me and their families are not heard or believed. We are silenced by constraints put on us by Governments with no accountability of wrong doing, we are easy targets. Taking away from us is lightening the burden on society?

This is not a new problem, I have met mothers who have been under this pressure for decades and as they become older, they worry about their now adult children becoming victim of the political landscape. Those who strive to make Metal Illness untreatable and unresearched unless it is in their field, makes every illness a mental priority with no support, just blame and guilt changing people’s reality through differing disorders, that a logically approach would spell out the human condition and difference.

How is it that in the year 2018 we are going back to Tarot Card reading as a way to diagnose conditions. Mix this with science, to make it believable and sell it to the public as a treatment and then only offer that treatment if you pay privately. These types of trials and treatments have been ripped apart for decades. Why then are they still around, I can think of 101 reasons none of which are ethical.

We read books and watch films in the comfort that they are nonfiction, but very often those books are based on observations and I for one feel very much like the Handmaids Tale

One day at a time - So how was Angus yesterday (31/03/15) one day after the hospital appointment?

So how was Angus yesterday (31/03/15) one day after the hospital appointment?

He was slower and wanted to be left alone. His apatite was not good and his sense of taste and smell effected; he asked me if I used a different butter to cook his pancake with, I even had to show him the pack to reassure him it was the same. He could only manage a quarter and that was visibly forced down and not enjoyed with his normal gusto.

When he went outside (part of his baseline), the wind “hurt”, not surprising as it was gusty and colder than he had expected. So I told him to wrap up warm to get his body temp back, and not to worry about going out and brush the dogs instead. His brother surfaced and he played on his game instead. Tink and Amber were devastated and were not impressed with my best efforts at appeasement.

Periodically he wanted to throw the American football around to practice his throwing and catching skills, and I must say we are both improving – though my skills as a thrower need to be perfected; I hit him in the mouth and on his bad and very naughty baby tooth that is hanging in on in there, stubbornly and at a jaunty angle.

I had no choice but to leave my two boys to have fun, it would have been – over anxious, I thought to try to stop them when Angus looked and felt OK. After all he had gone to the hospital like I asked, payback was to let him have fun, and there can be no better reward, or way to recover.

Cramp set in at bath time – which was handy as one warm and soothing bath and wrapping his legs to keep them warm as he went to sleep helped. Sleep was hard to fall into and he said this is when he worries. After an hour or so he did fall asleep and even now he is still slumbering. The time is 9am and his normal waking time is 8.30am.

My anxiety is on a typical mother level, accomplishing the jobs before the children wake so that I may enjoy being with them. My sadness level high, I would love to get out of the house for a whole day.

Deepest joy, although Angus has the sniffles, his colour is in the “pink spectrum”, perhaps by this afternoon (his best time of day) he will be up for a Pizza Hut, fingers crossed everyone x

By the time I had hung out the washing, tidied Angus’s bedroom it is now 9.45 he is happily dressed (without being asked) and talking to his friend.

With much joy

Tilly x

Am I Just An Over Anxious Mother? Well actually NO!!!!

Am I an Anxious Mother?

You bet I am!! For two years I have had to drag the medical profession kicking and screaming to accept my young son’s physical illness.

Two years ago I wrote this after I was severely reprimanded for taking my child’s symptoms as a problem, that I must understand that this has an impact on my son's perception? I ask you those symptoms caused me great concern and anxiety, should I just ignore what nature is telling me. 

I have since found out many underdiagnosed and treatable conditions that have caused those symptoms and I wonder how many children and parents are groomed to believe they are mentally ill rather than they are physically suffering. 

How many mothers have been forced quiet by the PACE trial. The lead researchers and advocates could not even determine what recovery meant? For fluff sake this is not an intellectual debate about how far the mind can control the body - this is people’s lives we are talking about!

This is what I wrote:

So it was decided that we must address my anxiety. I acknowledge my anxiety and would hate to inflict this on Angus and agree if I was doing this it would indeed be a very bad thing.

I explained that my anxiety is mostly upped a few notches on the richter scale due to the chronic pain Angus is left with when he has over exerted himself, or enjoys a game, reads a book or film. So what do I do when he is rolling around in pain I asked? Divert the pain and take his mind off of it, the answer came as it always does.

The trouble is all the way through this illness we have been dismissed this way. It is nothing new and it makes the sufferer and career feel as if they are just the ones that are unable to cope. New and old studies and research prove what this illness does to the sufferer’s body physically, but these are just nonchalantly waved aside! It astounds me, and yet I have been forced yet again, to keep him moving and told it is possible to take his mind of the pain, don’t fail him!

While I was being talked down to; with none of my concerns taken or listened to, Angus at this time was in another room with the physio getting out of a chair 27 times and throwing a ball around. And it seems to me no matter how many times I tell everyone in the medical profession that his problem is not moving or lack of wanting to move, it is the fact that when he stops for days and weeks afterwards the pain is constant and unbearable. But it is my anxiety that brings the pain on I’m told; if I do not acknowledge the pain the pain will go away? Perhaps they are right. Last night Angus was more himself – hyper and buoyant full of life. He mentioned he had a headache as he went to bed, but nothing out of the ordinary.

Perhaps the weeks it has taken us to get Angus in a comfortable state, was just a figment of my imagination, I see the pain more acutely as a parent (undeniably true, I would move heaven and earth to stop anything from hurting the people I love) and Angus does not have so much of a problem with it now? Indeed most people who do not deal with it on a day-to-day basis feel this way; we are conditioned to believe that over anxious mothers adds to our children’s suffering. I wonder if a study has been carried out to see how many children’s lives have been saved by these those over anxious mothers.

ME/CFS history has been littered with mothers that are apparently over anxious and distressed. Only for it to be proven this condition is acute and caused by an ongoing infection. There are also many littered children turned into adults left to fester in the belief they are willing themselves ill.

Angus never travels well, he walked through the hospital because they frown on me using a wheelchair, and then they exercised him, knowing full well my concerns. They do not do this maliciously I would hope, but because they believe they are right and that I am over anxious. That is what they have been taught.

The next couple of weeks will show me if I am what they accuse me of. I have decided to live each day as it is, change what you can for the better and keep calm and carry on to be happy x

Well a Year on and he has never recovered from that day. 4 days after that visit to the hospital he was more or less bed bound! We moved hospitals and this is what he has been tested for so far:

Coeliac: Diagnosed two years after Angus became ill with damage to his Villi beyond repair now? Coeliac is an allergy to Wheat that crumples your villi! Without your Villi working, you cannot take the goodness out of your food. So for two years my son has been malnourished.

PoTS; He has just been diagnosed with Postural Tachycardia Syndrome (PoTS) it is an abnormal increase in heart rate after sitting or standing up. Nice was aware of the connection of PoTS and ME and in 2010, they made a note to look into to this further. They have put ME/CFS on the static list, so that it will not be looked into now for a very long time. Why?? This condition can cause so many problems with day to day living and can be life threatening!

Still looking into his connective tissue problems.

I cannot believe how mothers of very sick child are treated. With total disregard to the actual damage to their child’s health and the very physical illnesses they have. As you read this, one of the so called leading Paediatrics into this condition, and one of the only Charities to help mothers and their children are funding a PACE trial for children called MAGENTA.

We are now in 2017 and yet another trial called FITnet-NHS has started and we should all hang our heads in shame. Tymes Trust has had more than 180 parents accused of Fabricating or Inducing Illness (FII).

How does that feel ?https://youtu.be/sjWjCaIoJPs

The leading paediatric in ME/CFS who researchers on children and is doing the FITnet-NHS trial gets the parents involved but look at the wording "address the parents beliefs and behaviour" if you read that would you start to think about the parents involvement in their child's health. I think this needs to be addressed and  the researchers held accountable? Mar-Jane Willows is now part of Action for ME and so this adds to the seeming legitimate questioning of the parent and misinforms about the physical medical problems of ME? 

Dr Ramsey in 1986 yes in 1986!!! For havens sake defined Myalgic Encephalomyelitis:

A syndrome initiated by a virus infection

A multisystem disease

Neurologial disturbance

Musculo-skeletal dysfunction.

So it is not as though we do not understand how it affects the body, but because we have no test a group of psychiatrists could theorise, fudge the figures on a trial paid for by the Department Work and Pensions and get away with it!

Our society would never knowingly groom or harm children would it? Our Government would make sure the right thing is done? NHSE would demand the correct treatment and NICE Guidelines would not recommend a treatment that would harm us? GMC is there to protect the public from malpractice not for other medical practitioners to use it for their will and biding. So how come treatments can harm and not be routed out and the people that use and advocate them can become so powerful?

I do not use the term “groom” lightly, but ME patients are groomed to believe they are capable of living:

It is only when dealing with "CFS/ME" (and Gulf War Syndrome) that these psychiatrists are regarded by Government bodies and the medical insurance industry as "experts". These psychiatrists are on record as being actively involved in social engineering via the deliberate creation of "psychosocial" illness. They believe that the biomedical approach to healthcare (ie. that ill-health and disability is directly caused by disease and its pathological processes) is (quote) "a blind alley" and that the correct approach is the psychosocial one, in which "aberrant" thoughts, feelings and behaviour can be "modified" by their own brand of cognitive behavioural therapy with graded exercise (CBT/GET), resulting in restoration of health and productivity.

Sophia was forcefully taken from her home and put into a mental hospital she died as a result and her autopsy proved how much damage was done to her internally.

http://www.sophiaandme.org.uk/collusion.html

That was back in 2011 when the PACE trial was taking control of ME. 2017 with all the evidence now showing ME is in the blood NICE refuses to budge and Angus?

Well Angus gets no treatment we get no help. We don't have a blue badge due to the PACE trial believers, but that blue badge could give back some of his life.

What of his future? No one can tell me. But we hope the many good researchers will get the funding they need.

Angus is now 12 and has an hours lesson once a week and it takes him four days to recover which is better than the 15 minutes with a weeks recovery. it is progress.

If the flaws in the PACE trial was looked into at the beginning Angus would not be as disabled as he is not?