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 :-)