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 :-)

Suffolk County Council The Stealth Bombers of the Education System

With the news of the bankers breaking all around us it is hard to take in how our society is. But we have always known, haven’t we? You walk a hundred yards down any street and you will hear the common people of this land, voice the common and pragmatic approach. They know when they are being hoodwinked, it has always been that way, and bullies have always enjoyed power and find it hard to say that they are wrong.

The government has sent the stealth bombs of deceit that has been falling down on our schools. Bombs veiled in a parents wish to do the right thing for their children and their teachers. The devastation is hard to see – a hidden crater in our education system, covered loosely by twigs of statistics.

As far as I can see, there are three phases to these cluster bombs. The first cluster has done their job well. They have fragmented the teachers, parents and information, dividing us in order to conquer us. One by one our schools have fallen. Stowmarket Middle school the latest to close, no announcements made. Now so close to the end of the academic year what can anyone do? Bactons fate is sealed. No information has been given out willingly, no plans have been shown, no structure put into place just teachers fighting for a jobs, funding and salaries.

Second, take all the best students and put them in a few schools. Bacton, will be taken over by a free school, so adding to this phase. Does it make sense – picking the best pupils and putting them altogether? What happens to the rest? The council try to show us how the middle schools have been failing, but are they?

These schools have done their best with the majority of lower achieving or troubled students. How is it going to improve, certainly not by taking space from our primary schools to make room for the extra classes and overloading our high schools!

Bacton primary school set aside a room for those children with social issues. They had a safe place to learn about empathy – something that is hard for some children with learning difficulties. This protects the class from disruptive behaviour allowing the teacher to get on with teaching, this along with half of the new library will be taken away to allow another classroom. A playground and the swimming pool will have to go too. Soon primary schools with 200 or less pupils will close and what will happen then to the primary schools that are left?

All through these so-called discussions, meetings hurriedly arranged so parents find it hard to attend let alone gather information together. The Plans and changes are always conducted with the middle schools left out in the cold?  Divide and they have conquered us. They have veiled our concerns to hide the ticking bombs and made us parents hold them in silence.

The third and final phase is the sixth form, now what will happen to them? No one has been told – a shrug implies they will stay as they are but how can they with an extra 200 pupils on site.

What is their ultimate game plan to improve education? Surely, the two-tire system will give greater consistency. Well very little true information and a lot of misinformation has been given so it is hard to guess. Maybe a few top schools in the area that make it all look good are the best we can hope for. And the rest? Well the other schools will have to do what they can.

In the reforms that endlessly go around in circles of harping back on the past. It seems to me a few things get forgotten – educating teachers to teach is vital but rarely mentioned. Children are not robots and with more children with learning difficulties this seems to me this should be the priority.

Parent teacher Associations should take pride in providing fun equipment for their children. Supported by the governors the teachers would feel valued. Valued teachers teach well.

The reality is not everyone can teach. We should all be able to understand that children are difficult. A quiet child is hard to engage just as much as an enthusiastic disruptive one but blame seems to take over and this is an error society can not afford.

A good standard of teachers – supported by parents, facilities and Heads

= Engaged and happy students secured with understanding

of what is expected of them behaviour and exams

gives good education

It is not hard to work that out!

This is a letter that I have sent in the vein hope it will be read before a meeting that I have just heard about takes place. In reality I'm not sure how much difference it will make but I thought we lived in a democracy, the way this has been handled I don't think we do.

The impact of restructure is a mighty one and at the moment we just seem to keep going through endless circles of change for the better? I think not. Why restructure when you can think wisely and tinker, to get things right.

My name is Tina Rodwell I was educated in a two-tier system in Cambridgeshire, and I’m dyslexic. I was in the lowest classes at school; my teachers and I were exasperated with the situation. They thought I could do better and saw intelligence and blamed lack of effort on my part for my exam results. I just thought I was thick because I could not learn the way they wanted me too.

My husband’s education, caught up in the struggle of putting the three-tier system in place was unsettled. Parents at that time, being told it was a good system. I firmly believe with the right support it could be. If children going up to the middle school were “buddied up” with their pier group of the previous year and again when they first go through the high school, transition would not be a problem. That way there would be no six weeks of worry over the holidays to what would be expected of them or what to expect. I believe this is what the pyramid system was all about and was persuaded of its merits.

My daughter went through a year of turmoil when teachers left because they thought Bacton was going to close.

My eldest son at Stowupland has had drop out teachers with constant replacement teachers. The biggest issue with schools no matter where you live or system you use, is keeping good teachers. I would guess that the conflict between school in fighting – caused by the uncertainty and their hands bound by the job they do, must be unbearable. Overall they are – people that want and need to teach.

All three of my children are dyslexic and have dyspraxia tendencies and a thing called Irlen syndrome. It does not matter to me what you call it but I do understand that we all learn in different ways – people and therefore children are not pre-programmable items. We live in a diverse society yet we still put constraints on it. This is used as a very valuable commodity by government when putting forward fluid statistics to support their ideas, after all it sounds good.

My eldest son wants to be a doctor and would, I think make a good one, but with his disabilities being misunderstood, and lack of consistency of teachers this is unlikely to happen.

The impact of rhetoric of government makes it all sound so plausible but expects us (the bound and gagged public) to walk a walk we instinctively know has no foundation and does not work.

Teachers are not allowed to express themselves, neither are the governors of our schools and trying to get a polite and courteous reply to a simple question has so far been beyond the council.

On Tuesday 26^th 0212 a meeting is to be held in Stowupland high school where no independent parent representative will be asked to attend and they will only discuss one proposal, my question is why?

This has been going on for six years and my children have suffered. Yet I was told to be quiet in one of the first meetings held, as this would not concern me, my son at the time was too young so this would not effect him. My family has been and will continue to be badly affected, with the coercion during this process unforgivable.

My daughter will be at high school taking her A levels when the restructure takes place. She will not know what school or teachers she will have through her A levels. How is this going to work for her and her teachers?

My youngest will be forced to stay in a Victorian school with substandard facilities with two extra year groups. He will no longer have subject specific teachers going into his sixth year of education. Let me just clarify that. He will have one teacher that will teach all subjects with no subject specific equipment.  He will have to wait until he is 11 going in 12 before he will be able to get to school safely (I kid not have you seen the primary schools in these areas) there will be no question of walking our children to school and no proper exercise at school.

He wont have a dining hall he can comfortably eat in, don’t get me started on toilets, a football pitch, tennis court so sport will be out.

Maths teacher and the equipment that they need in these computer frenzied times.  No support for English, not to mention the Sciences, but it is the teachers I morn the loss of, without the teachers what is the education system and that is what this proposal will take away form Angus.

My Question is for what or whose benefit are we changing the system?

Even after two more meetings have taken place, I still have no reply.