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?

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.

After CBT and GET they promised recovery, what happened?

We now know how harmful Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) is in 2019. Yet the reluctance to take it down is in my view criminal and against Every Child Matters.

Living with a child with ME/CFS


For the last couple of years Angus has been struggling through constant viral infections, they keep going around in constant circles. Sore throat > painful glands throughout his body > cold sweats > low body temperature >headaches > stomach cramps > willy infection > ear infection > sickness and diarrhoea > repeat. Slowly the fatigue set in, and not in the way I understood fatigue; as fatigue to me was a warm uneasy inability to stay awake or move, for Angus its pain. Predominately it’s his head that hurts, with his tummy going in and out of spasms. When these abate he realises his whole body aches. The symptoms he describes are those you have when you first have flu. We can all remember how awful flu can be, but my little boy at 9 years old has these symptoms all day and most days.

Last year we got him back to 70% of his former self by August 2014 which took us a year. In early September he had a slight relapse, I was told to push through. When I questioned this they turned on me, by end of October we had lost 50% of that recovery and now we are down to where we started from. Since the end of term of winter term 2014, he has been on the loop described above constantly.

Graded exercise and keeping him mentally strong are the only things we are given to combat the symptoms and the condition seems to be rampaging through his body none stop now. Trembling as he grips onto me, he asks for my help to stop the pain, and when it will ever end. I hold and kiss him, but can give no answers as there are no answers they tell me and no real clinical trials, or research to give us a way forward.

So it has to be said I’m a floundering fish. I need to relax and stimulate Angus but never over stimulate. He must rest, but not for too long! One of the symptoms is insomnia (he can’t relax to sleep as he is in so much pain) but he needs to sleep to recover. He needs to eat regularly and keep his day normal, but if he does asleep late does this mean - I wake him and force feed him, or let him sleep and rest? Fluffy ducks I can’t tell. But I know this much – I have to stay positive (while I have very little to be positive about) and determined.

This morning (12 January 2014 7.30am) I went into his room at the normal time and kissed and held him while he tried his hardest to wake. But I left my angle to slumber and now at 9am I will again try to wake him by reading for a while, hoping to try and wake him up slowly, and cross my fingers that I’m doing the right thing. As I wrote the previous sentence he came in the kitchen to find me, bent double in pain, grey in complexion, active in mind, foggy of thought, deflated in spirit. My resolve sank deep as my heart fell, but it’s my job to inflate him with life, and hold him tight and say it will be all alright?

Now our daily struggle begins. We are not alone; all around us and the world there are people making the best of their day, in pain and in anxiety. How will we cope? Thinking of them, knowing they are there and coping with grit determination, that’s how I intend to cope, knowing I am not alone and I will grab a smile and send it to you.

Wish us luck, have the best day you can, and smile at least once for us x

It is now November 2016 and now with the the right advice from a world renowned paediatric Doctor Speight I have learnt how to support my son into a better place and lets hope recovery. Reading back over this post it is tinged with sadness.

The sadness has less to do with the disability that my son lives with constantly now and more to do with the people that perpetuate the cycle of harm.

It is now so apparent that Autoimmunity is at the heart of this disease

Update on Angus 17th October 2019

Well he is not doing very well at all and in the same place I left him in 2016. I am shocked that still autoimmunity is not looked at especially with young children who are newly diagnosed neither is Lymes and still mothers are targeted as the perpetrators of the their child's illness.

There is much nonsense about anxiety and that appals me and I have learnt my lesson about not waking him when he is in recovery from activity. When you feel your body fail you have anxiety that is only human and a safeguard when you look at the damage done by any activity to the patient with ME then it is not hard to understand.

Those that find it hard to understand the human process of coping with a failing body should not be in healthcare.