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?

ME/CFS is bullying Angus again

We are off again to the hospital (30/03/15) ME/CFS is bullying Angus again.

Angus who is acutely aware how this can effect him, questions my judgement on this front. Can’t say I blame the poor little fellow. His thoughts are: his brother is home and is willing to play with him (if and when ever he wakes up) so why should he waste his energy on doing something that will not make any difference at all. His other point is – why should he put himself through the pain of it all?

I have no answers. But we going anyway, what else can I do? This journey of only twenty minutes duration can not have that much of an effect on him? Grit your teeth and carry on?

We shall see, He has defiantly improved over the last couple of days. He has started to doodle and move about much more, so perhaps this is the beginning of his recovery?

I am sceptical, because we have been here so many times before. If you follow this just keep in mind the effects of any exertion can take 48 hours to emerge. Over the next week I will try to post how it all turns out for him, us.

Wish us luck x

Needles in a Haystack

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Prof Julia Newman has found some very interesting needles

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

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

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

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

ME\CFS Is a Big Fat Bully

Tilly Don't Like Bullies!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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