My Octopus on Speed Has Gone Missing

So what do I mean about my octopus on speed? Well when any child enjoys doing things they know they shouldn’t but don’t quite know why not, they go through a really hard period of time when that is all they seem to do. Angus use to like; on the odd morning I was unprepared, to go straight to the cupboard I used to keep the biggest box of washing powder I could buy and spill it all over the floor, as I would’ve reached that point he would have scarpered to the dogs bowl emptied that then run through to the living room and emptied all of his numerous books all over the furniture, put some in bags and all his hiding places as fast as he could. So I had no hope of any damage limitation. He would then calmly sit and read as though he was the book worm and not the octopus. By the time I had cleared up the aftermath of his arrival I would be running late and stressed. I would then look in on him and there he would be oblivious happy and content.

The thing is that he would go for long periods of time in-between these outbursts so I was lulled into a false sense of security, I’d let down my guard with ‘Oh that phase has passed, good!’ so the explosion of activity always caught me off guard. Then he would go full pelt and headlong into a situation I could only live and breathe through; if I was lucky.

Angus enjoyed doors especially ones with locks on so when we went for a sort break to Paris and booked a family room I was on my guard. When we got there and found that the bathroom door was solid and had no emergency lock on the out side, I was on my high alert setting. Every time one of us wanted to use the bathroom I would stand near the door making sure Octopus boy could not slip through below my radar and lock himself in. Axl 10 Years Angus’s senior had just came out and as I was on century duty holding the door to make sure little man could not trap his fingers or lock himself in I turned to ask Axl if he had brushed his teeth. I felt a slight force and as I turned back the door slipped shut and the lock was engaged and my heart filled my veins with a cold dread.

While Kev went searching to find help, I held Angus’s attention as close to the door as I could, while reaching across the hall to pick up the fire extinguisher to bash the door down. I clouted that door with all my might spurred on by my over active imagination running through all the possibilities. There was a long mirror near the toilet that was fragile when you consider that a phone was opposite and I could hear him clunking the mirror with it, as I was thrashing the door with every fibre I owned. Then there was the fact he could run the hot tap by himself and climb into the bath unaided, put the plug in slip and fall on the marble, climb onto the sink with all the chemicals to sniff and drink. 

So when Kev arrived back with help, I was relieved. The man went straight to the phone understanding this was a very dangerous situation, so picking up the phone to get an engineer to take off the door - I though we were home and dry. That is until I heard Octoboy picked up the phone cutting off our help line and his voice full of enjoyment and fun said clearly ‘Hello, Hello, Hello’ which was all his vocabulary held at that time and put the phone down, only to do it all again on an endless loop. This carried on for a few more failed attempts when my ‘would be hero’ asked me to tell my eighteen month old son to put the phone down. I looked instantly at him and retorted not too politely, if I could have that sort of conversation with him I would have asked him to unlock the door.

Well the poor man asked me what he should do when I suggested he should use his long legs and go and get help before my son did real damage to himself. Again everyone departed and I was left coaxing Octoboy to the door again. I asked him if he could wiggle the handle and to my pure relief he did. I then asked him to reach down and push the lock; I was ready to shove with all my might. I then heard that most wonderful sound of metal gliding on metal quick as a flash I grabbed him like a mother possessed, just as a non English speaking engineer came through the door. Putting as much distance between the room of horrors I tried to breath through my sobs.

Although Angus was out, I knew he was still in danger, the door had to be sorted before he was safe and this man I could not communicate with was going to be my hero. He picked up the phone and handed it to me and through my uncontrollable sobs I tried to explain to the main desk what had just taken place. I then handed the phone back. Comprehension and empathy erupted over his face and he hugged me with such compassion.

Sometimes words are not needed especially when emotion is shared.

This was nine years ago and today my Octoboy has gone missing and mostly forgotten. Today my boy is in constant pain. Over the last year or so there have been medical people that should know better and more informed tried to explain the mental state of my son. They tried to convince me the virus he had, had left him so he had forgotten or he did not want to live as he had. Now I tried to get my head around that and it was like watching one of the ugly sisters ram the glass slipper on her foot. It was never going to fit! What they described to me was their theory and not my reality.

It now makes me wonder about the mental state of our mental health providers. We need proper research into mental health, not sticky plasters over physical problems.They so wanted a theory to fit, they ruled out a physical component to my sons health. Unexplained physical symptoms are just that, that is to say the medical profession are just not able with their ability at the moment to figure it out, it does not mean to say we should blame the mind of the sufferer for the lack of knowledge of the medical profession. Perhaps all mental illnesses have a physical element and this need investigating.

If you understand the 80 or so autoimmune illness that have a devastating effect on people, then why cannot they believe in ME? what sort of dangerous situation are we heading for if we give physical control of the health of our nation to Psychiatric theories. Psychiatrists convinced the NHS that Cognitive Behaviour Therapy was a good idea for people suffering with ME. They came up with inappropriate research and trials. Now we have a fresh trial called Fitnet, the coverage has been extensive through the BBC as a treatment like no other they seem to gloss over the PACE trial fiasco. Yet since 2011 a connection has been made to the autoimmune system and ME. Reading the literature regarding Cognitive Behaviour Therapy there is a stark difference between the delivery and I would shameful.

James Gallagher in a radio four program Inflamed Mind sensitively tackles the subject of the autoimmune on psychosis, yet talking about ME he tells how the treatment will  change the way children think of the disease then tells how 'that some activists say that Cognitive Behaviour Therapy (CBT) just treats the mind. He omits the fact that the World Health Organisation list ME under a neurological condition and immunoglobulin has been used with some promise around 2011 with ME. .

ME sufferers are so good at managing their pain and determined to be normal, that medical jargon can get away with saying they are fatigued. ME is about the whole body being affected in the most crippling way, not about fatigue. Psychiatrists can not understand or diagnose  PoTS ceolacs and if they could not tell that, why are we giving them control over our health service with regards ME? PoTS or some form of orthostatic intolerance (OI) along with PEM is two of the criteria and Fitnet does not include either. How can we trust them psychiatrists with our bodies when they just want to blame out thinking minds regardless of the ongoing evidence?

Inside my son even now there is Ocotboy meets monkey act waiting to burst out as soon as his body is able. On good days I can see them waiting in my sons eyes. He does not need CBT to get him better, he needs his condition understood and most important of all a cure. Psychiatrists prolong and mask the agony, they do not have the answers biomedical research does!

The sadness I feel looking at my child with hope that some part of his day will be enjoyable, I cannot describe. I reflect on those days I was stressed over the pile of washing powder, how he looked on top of the pile of books when he was young and I wonder who will take the responsibility over those who fall like my son?