We Will Never Give Up Or Give In

We Will Never Give Up

Or Give In

‘She who will not be named for fear of bursting a blood vessel, has only gone and copied in the GP, paediatrician, CAMHS, school and a load of other people who will be breathing down my neck for explanations! School have already rang to see when can they expect Sian back in school. The sheer stupidity of it, it states and I quote that “Sian can manage 3-4 hours high energy activity per day without increasing her fatigue!” How the bloody hell does she know that? I told her fifteen minutes four times a day is all she can manage, add that up by my reckoning it’s an hour. Brushing her teeth on a bad day can zonk her out! You go to these professionals and you wonder if they have any ears, because they sure don’t listening to what we say, and they must have grey fuzzy bits instead of working brain cells! Dr Ramsay in 1986 listed the criteria for diagnosis of ME and now the researchers are getting the technology to prove it all, and still the psychobabble twaddle lot, gets heard above reality.’

Carman had opened the chilled bottle of Prosecco, the neck of which she tightly squeezed and twisted cork harshly, as she handed the letter over for inspection while she grabbed the flutes.

‘Four years ago they proved that the heart rate and blood pressure was down to ME and not deconditioning, the harms that bloody PACE trial did, is still doing.’ Becky said as she scanned through the letter, and her shoulders sagged as small whimpers of condemnation escaped. With each little escaped concern, Carman’s shoulders lifted, her back straitened and her normal resolve restored.

Becky went to speak a couple of times, but had to rethink and squirmed in her chair as though this would shed some light on the perplexity her mind was in. Intently Carmen looked at her friend; they gulped on the wine in syncretisation, quenching their joint indignation.  Carmen trying to calm down, intently looking at her friends facial reactions; Becky would never make a poker player Carmen thought, as she refilled their glasses.

‘What meeting is this devil woman talking about?’

‘The one we went to last week!’ relief flooded through and warmed Carmen’s aching limbs that were tightly coiled round her dismay.

‘See Becky, there is no explanation of what high energy activity is? So those muggles will now think Sian can go to school - hence the phone call. Sian can’t even cope with full daylight now.’

This was like a punch to Becky, she had not realised things had got this bad, hopefully she thought it was just going to the hospital and the journey that had brought this on, and she would recover given time.

‘They assured you that high energy is sitting up for Sian at the minute, and not to worry.’

‘I know, but reading down they also go on about shopping as being a good social integration and will support her back into school? The hurtful thing is it’s her favourite thing in the whole wide world to do, you know how she is with designer clothes, she collects them like stamps, it’s like putting needles under her finger nails and telling her to cope, as her nails pop off one by one.’ Exasperation dropped from both their shoulders.

‘But we explained all that. Oh honey your wizards don’t use their wands’ Becky’s flabbergasted reply needed quenching, she took an angry gulp of wine. At this rate they will both be seeing double shortly, thought Becky, as she tried to focus her mind on the letter in her hand. But reading down the words and their implied meaning, just did not make sense. She could forgive someone who had never been involved with Myalgic Encephalomyelitis, god knows ME is a multitude of complexities, but for a so called professional, this letter is disturbing as it is disgusting, she obviously did not understand severe ME.

‘We don’t have wizards, we have muggles, the worst kind of muggles the ones that think they are wizards! When will your wizard be back in action?’

‘The General Medical Council are taking their time, they need to think carefully they say.’

‘What are the Dark Lords trying to hide this time?’

‘Who knows! It’s like a fairy-tale nightmare; muggles find it hard to believe. Unless you have lived in the world of so called medically unexplained illness, only it’s not medically unexplained is it. Four years ago they dispelled that myth of deconditioning. Medically unexplained my deodar, not looked for because you are labelled “the undeserving sick!”’ Becky blew-out through her relaxed lips that expelled soft pillows of air, as she threw the letter down.’

‘That theory was promoted by the dark Lords of psychobabble so a political battering ram could be used by Department Work and Pensions, now the cuts can go through?’

‘It’s just so wrong, remember the hours our girls spent looking at stuff on line to occupy them while they were both so poorly. It was their only joy. Their need to shop at all cost was the one thing that convinced me the psychological element to ME had very little to do with them. Physically unable to live gave them emotional consequences of being SadMad, that dragged them down on the odd occasion, but that was as far as it went. Rather remarkable considering what they were missing out on. The support they gave each other was amazing. That reminds me Beth is coming home next week from Uni and wanted to know if she could come and see Sian?’ Becky could see the pain through the warm smile and regretted her lack of tact. Maybe half an hour or so?’ Gently suggested Becky, ‘She could dry shampoo Sian’s hair make her feel….’

They both took a large gulp of wine, her and her big mouth thought Becky.

In the early days of Fiona’s illness she could remember feeling jealous of Carmen and Sian. The odd time they would go out to a shop, had felt at that time like a knife was being inserted and twisted inside her. Now the reverse was true and how do you cope with that? What the hell can you say to make things a little easier?

‘Have you managed to get out lately? Bite your tong off you over large buffoon in a tutu, Becky shouted at herself.’ I should know better than that, sorry.’ She thought as she sipped, how the hell can Carman go out while Sian blacks out and has nose bleeds all over the place? You prize pilchard, if someone had said that to you, you would have flattened them with a lashing of your tongue.

The tears close to Carmen’s lips were drowned by prosecco; the lightness of its flavour, easing away her need to escape.

‘What I would not give to be spending a fortune on clothes right now, just looking on the internet with Sian would be a joy. They quote socialising twice, did you notice?’ she pointed to the letter ‘and as one of her main targets. For the love of fluffy ducks! Out with friends coping with the lolling around talking frenzy of teenage girls, is just unthinkable the consequences of all these things would put her back weeks, let alone trying to do 4 hours a day!’ Carmen realised what she was saying and looked across apologetically at Becky, who she could see was pained by her earlier suggestion ‘That does not include Fiona, Fiona understands and will...’ Carmen turned round to unnecessarily tidy the work tops. ‘Bless ya, I know you are both desperate to help. But sitting up for Sian is high energy these days, her blood pressure and heart rate goes on a roller coaster ride all of its own. Having to go down stairs is like a Tibetan mountain hike, with all the organising that goes with it, pity there is no shirker, I could do with a shirker.’ Forlorn she put down the bubble filled flue, with a cherry bobbing around the cool fizz and both women giggled into the sadness, their memories floating on the bursting bubbles of time.

Becky did not need telling how body destroying this illness was, and the impact on someone who was suffering like Sian; her daughter had been hit hard by glandular fever for a couple of years, but the two girls treatments had been pols apparat and none of it made sense.

Unlike Fiona, Sian had heroically carried on, while her daughter was flattened by the virus from the very start. When Fiona had pads over her eyes as the daylight felt as if it was burning through to her brain, Carman had stood firm and more or less carried Becky through the bleak times, with her humour, wit and determination.

There was a year where the girls were at the same level of illness and although couple of years apart in age, they supported each other through Skype and the media of the youth. In those days they were mostly bedbound and yet Fiona picked up and started to recover slowly, with dips and troughs, but a steady rise in ability and yet Sian, who had been stronger at the beginning, just kept the same, no increase in stamina. It was like watching your friends family have a slow car crash that you could not stop or avoid, whatever you did.

Unlike Sian’s, Fiona’s GP and paediatric never pushed and explained how long it could take to recover. They had a system in place that wrote letters and talked with the school, organising Occupational Therapists, getting a disability badge which was a god send to enable Fiona to go out. Becky had none of the letter writing that Carman has the five folders full of reports and letters stood to attention near the phone. All the time Sian just kept slowly detreating, it was shocking. She had no tests and Becky could never understand the rational of her medical team. When they had gone to the hospital last week, it had seemed as though some understanding was reached over the seriousness of Sian’s condition, but this letter was a worry.

The conflict of emotions she felt over seeing her dearest friend’s daughter fight against this hideous illness, the same illness that her daughter had gone into remission from. Fiona had struggled through school, but they were always gentle and kind with her, made to understand by the wand of the greatest wizard. Now she was at Uni; admittedly not able to partake in a full Uni life, but had some life, was deeply painful for her. She felt as though her heart was being wrenched out, and the guilt was over whelming.

‘Oh I almost forgot; your YouTube video has gone viral!’

‘What YouTube video Becky?’

Cautiously and with apprehension, she screwed up face as though a blow would be administered at any moment, Becky explained.

‘The one we made last week, when we did the ME challenge. You know how many times you can say Myalgic Encephalomyelitis while sucking helium and being paint bombed’

‘But I couldn’t say it, and we gave up’ Carman stunned expression was a joy.

‘I know.’ Becky broke out in a girlish grin, widening her eyes and raising her shoulders in excitement! ‘That’s what made the clip so funny; they seemed to like middle-aged women pratting about- look we’ve had…’

Carmen had snatched the phone and started to play the clip, at first she winced. Seeing herself in a Victorian bathing costume with a duck inflatable was a little distressing, she really must go on a diet. The shower cap with its sparkle was over the top. She most definitely looked like a pantomime dame. When it came to the part when she was trying to suck helium, being shown by Becky, who was also dressed in the same attire, they started to giggle together heads resting on one another. Her trying to focus on saying the difficult words with a tongue that was semi paralysed by prosecco was hilarious, she had to admit. Sian was maliciously setting off the paint bombs trying to get them in the faces, from her wheelchair. Carmen did not know whether to be annoyed at her stupidity or proud that she was brave to keep going, what harm could a little fund do? The smile Sian had on her face was worth the payback, and when she is able to watch it will give her endless fun.

Her embarrassment was nothing really, no one would know who she is, and those that did would enjoy the spectacle. It would be worth it to get some understanding of this illness out there, even in a small way.

When she looked at the mega amount of hits, it blew her mind, and when she looked at the “Just giving Page” it was heart-warming. People can be so kind.

‘Like you said at the end Carmen’ Becky put her arms around her friend, who she was so indebted to and admired from every angle. ‘We never give up, we will beat this!’

For the first time in five years, Carmen really did believe it!

If you can just give a £1 to my just giving page so that people with ME get the research needed to stop this illness from robbing 25,000 children of any fun in their lives. 

Thank you

https://www.justgiving.com/fundraising/Tilly-Moments?newPage=True

Fighting for Truth

Happy Birthday Sophia

We will Keep fighting for you and everyone with severe ME

Sophia’s life should be celebrated and honoured! Her mother should have had an apology and become a Dame, but still we fight on. What more evidence do doctors need that this disease does untold damage than from her autopsy and the evidence of the different forms or orthostatic intolerances ME patients have? Low oxygen gives you brain issue!!

Her life should have shown us how to treat people with ME and respect those who have CFS.  But we still fight over a name because we have to see the wood, the trees, the branches and the leaves and all that live around and on them. A name matters to research! A proper diagnosis matters to patients and treatment!

Her life should have given us clues where to search to find some answers, her death should have shown us the way!

 Our bodies give us clues to our state of mind? I am appalled that how doctors are allowed to treat their patients and refuse to find causes. If you disagree we are still draconian enough to throw them in asylums and tell them to behave better? They write books to show how disgusting our thoughts/beliefs are and people read them and quote them? Mental health should be about understanding that chemicals released by the body affecting the brain and therefore thought process. They should be supporting not ridiculing? Or is that just me who thinks lobotomise and ECT were the wrong treatments for misunderstood coeliac to Alzheimer’s and goodness knows what else in-between! Have we forgotten history, do we choose not to learn, do we not take note of research and think hold on we could be doing harm here?

It is how they behave medically that upsets me- over 200 hundred families and many more are threatened by all sorts of medical and educational staff that they will be taken to court, that their children will be taken from them! When you fight them to get truth, treatment and research, you get hung out to dry in public or gagged and bound by establishment. If I go missing after writing this come and find me x If I get hung out to dry don’t stand and point and laugh - try to understand the truth behind the myth.

A list of doctors I have read or heard derogatory remarks from the establishment or whose good solid research gets hidden from the public from the PACE trial advocates, whom should have been sorted out in 2011:

Dr Myhill, Dr Speight, Dr Bell, Dr Montoya, Dr Ron Davies, Dr Mark Van-Ness, Prof Light, Prof Newton, Mady Hornig, Prof Kerr, and so very many more.

Worst of all those who stand up for ME sufferers to say Graded Exercise Therapy (GET) is bad for ME sufferers are threatened too? These brave Doctors, researchers and professors stand up in no man’s land to be shot at while the brave lay in droves in their near death beds.

Her life should have given the NICE guidelines changes to treatment accordingly.

GMC should have supported the doctors and this family in particular! 

As long as they keep you thinking that we are mental, whatever that means! As long as they keep you thinking we do not suffer real pain, we can be dismissed. You, whoever you are, are keeping physically ill people in rooms to be tortured by one of the most hideous illness known to man! It takes decades to die.

The Freedom to Work - Yes Please

This short story still in its rough form is dedicated to Nicki  and Cathy and all those that have to chose to suffer in silence.

Freedom To Work

Yes Please!

I’ve been living in this flat now for almost six months, and each and every day I get a quick hello from my neighbour, who then decides to come round for coffee, unannounced, with her cat!

Now for some with the simple freedom of choice and with a “normal ability to live”, they would think this innocuous and what appears to be friendly, neighbourly thing to do, a charitable and much needed contact with the outside world, especially for someone who is chronically ill like me. So do I, well in a way. You see the problem I have is that I don’t have the freedom to walk away. I’m pinned down by a body that can’t. I have to say and be lectured everyday about how working could improve my spirits – I don’t need to be told this, I know this. My mind craves difference and when I give it a go, something pulls the plug on my neurons and I am left with intermittent thinking, of the fuzzy kind, no crystal clear thoughts for me.

She explains how the money would give me the ability to live so that I no longer live in squalor! Yes she actually used the word squalor! As if I am some complete moron who never gave that a thought! What makes it so awful and wretched is that she is right, it is a squalid flat! What can you say to that, how can you defend yourself? You see, each night someone, while I am asleep pumps my body with lead, seriously I’m not kidding! Some days just looking after my own hygiene is all my body can take. Innately I am a very organised and tidy person, squalor makes me depressed.

Anyhow I bet even a saint would lose their patients under this much scrutiny, and believe me I’m no saint, nor would I want to be. I’m more of – live life to the full type of gal, why walk when you can dance, why dance when you can rock?

I’m rocking now, although I’m not entirely sure if I’m rocking to get out of the chair Sam sees me as she walks to work or in pain. I just don’t want to face that encouraging smile this morning; I’m not in the mood! My halo has gone missing! But I’m too late; her face is at the window of my bedroom.

‘Morning Katie, How are you this morning?’

‘I’m fine, and you?’

‘Oh I’m loving the spring, perhaps we can go for a walk when I get home - blow a few cobwebs away, make you feel better?’ I slap a smile on my face and she is gone. I know what I would like to blow away.

‘I don’t want to think how I am Sam!’ I grumble and groan as my body adjust to the upright position. I close my eyes as the dizziness kicks in. It makes it real, and I don’t want my reality to be all there is thank you very much – I want to live in a dream world of fluffy clouds for as long as I can. I look across at the time on my phone, ‘I bet a get a shimmy on, my mum will be around in two hours and I haven’t even brushed my teeth yet!’

As I had feared Sam came round that evening, she promised she was on a flying visit. I know though she is trying to get me out of the house as promised this morning. I told her I was waiting for company so now she is waiting to see who that could be. She sips at the coffee that I have just made her. Which means: I won’t be able to finish the prep for my evening meal – I simply won’t have enough energy to do it now!

Sounds stupid doesn’t it? You can’t explain it to anyone who has no difficulty in moving, their blood flow, breathing, with their energy all being normal. Looking at me I don’t look disabled. I ponder on that thought as the devil cat winds her tail lazily and lovingly around my leg. I tense up, not because I hate cats but because I know what is coming, but I don’t know when. The pounce of the Duchess the devil cat is always unpredictable and unprovoked.

‘I saw you out at lunch time with your mum. That must have been a nice change for you? Made you feel better?’ Duchess devil cat jumped upon my legs and purred comforting soft velvet purrs the kind that makes you sleepy. Her warm soft fur comforted my knee joints and a connection was made between animal and human.

‘Yep’ I false smile into my hot chocolate, no point telling the truth. I remember my mum’s face when she took the full force of abuse hurled at her this morning. You see I have a disability badge; it took two years to get it! Even though I am house bound, I still have to go to see the GP, and there is no parking nearby, and the journey alone will make me so sick it will render me bed bound for the next week or more, apparently I still did not constitute a badge! I refuse to use the wheelchair, so it makes it worse. You see the whole process of getting the badge and Department Work and Pensions forms and interviews; they insisted I attended, not only put my health in jeopardy but made me feel worthless.

The process of losing all your function after you do any daily living, is innocuously called Post Exertional Malaise; PEM for short. It is more a kin to having a heart attack or stroke though; as my body closes down to conserve the precious oxygen my body craves. Because my brain is constantly starved of oxygen when I over do things. My body just cannot utilise oxygen or energy, every system in my body is compromised. It is a hard concept to get your mind around. My mum has been a rock for me and she has got her head around it, but we are all allowed to lose it from time to time, my mum lost it big time today.

‘Where did you go?’ Sam asked. I didn’t want to say disability aids, so I lied.

‘We fancied getting so good underwear but we were naughty and brought the most glamorous frilly knickers’. I wish my life could cope with frilly knickers I privately thought. ‘We are fed up with the Polk Dot bloomers we normally get’. She had to gulp down the coffee; she had been daintily and slowly sipping! I lowered my eyes as I smugly smiled into my hot chocolate.

My mum’s beleaguered face haunts me, her frustration hurts me. I had just finished my degree you see when I was struck down with a virus that left me this way; I was diagnosed with Chronic Fatigue Syndrome, the most hated condition of modern time, with I have to say the most stupid and misleading name. Fatigue, everyone has fatigue and I wish it was just a case of fatigue.

My mum was so so proud of me at my graduation; all those struggles to get me through Uni were worth it she told me. My job was to die for, and I would have if my body had let me. We value ability is highly prised; I have no ability, so I am worthless? Today for the first time I felt worthless to my mum. All her dreams had been shattered, they had splintered like a mirror, we only caught glimpses of our former happy self’s. Mum had to give up work to look after me; she lost most of her friends and a life she loved.

Sam drew out of her bag my latest prescription, it was a trial medication and I could see she was itching to ask questions. Sam worked at the Health Centre; she was the softly spoken dragon that refused to help in a helpful manor that mirrors her personality. This job perpetuates her belief that she is a most helpful and understanding person. I’ve seen people staring at her in disbelief at the reception with the comments she comes out with. It makes me smile; I am not the only person she does this to so now I don’t take it so personally.  

‘Would you like to take the cups in the kitchen, I’ve finished my coffee.’ Sam encouraged me to move. I bit my tong but –

‘No that’s Ok Sam, just put it on the coffee table next to you’ Duchess digs her claws in very painfully. As I knocked her off my lap and Sam was about to protest the door opened, and in walked in Peter and his crew followed by Dr Burns.

The suit was amazing, worn under clothes you could not tell you had it on. Even I was impressed with my design and I don’t get impressed with myself very often. The head band was the same and I marvelled at the lightweight and complexity of it all. A small app was transferred to my phone and Sam was bristling with pride that she knew me, which was a first! She was visibly astounded when the whole team congratulated me and said they were in ore of me, considering my disabilities and how much thought had gone into the concept.

‘We have all had a go with it, and boy - were we pleased with the function. Not all of us could cope with wearing it though’ He looked over to Dr Bures. ‘Possibly a couple of tweaks would be needed after someone with a non-biased opinion could be found.

Well what would you do if you were in my position? Would you take full advantage of it, and put your neighbour forward - an ability to get the truth over let alone some well-earned revenge? Well I didn’t have to worry about that, as though by magic with Sam jumped up and offered herself as a guinea pig.

‘Although there is nothing that could compare with what you go through on a day to day basis’ Tom looked at me with such earnest eyes that it made me bloom inside. ‘I think if we did anymore it would be torture for torture sake, and not research practical.’ I have always loved Tom, from our first lecture together. His like a universe of possibilities.

‘Dr Burns was going to take part and as kindly agreed to ask his staff, if they would like to take part in the trial.’ Tom sparked interest in Sam in more ways than one and she took the suit and bristled up to her full height of 5ft nothing, patient high heels, formal skirt and diamanté hairclip in her perfectly plated blond hair, leaning into Tom.

“What a splendid idea Dr Burns”, Sam’s smooth as treacle and sweet as acid voice oozed something like sincerity; which she may later regret. I understand how this illness is.’ Dr Burns looked over to me puzzled. ‘I live next door to Kate; I’ve taken her under my wing’

‘Smother me more like’ I grumpily whispered out of earshot of Sam.

‘I think we should all have a go with the suit, so we can truly understand how it is for these poor people.’ Big mistake lady I thought to myself, as her condescending ways got stuck in my throat so no worlds came out. She had asked no further questions, silly woman.

‘If I try it on now and give it a go, then you can tweak it and the sooner we can start to trial it out’.

‘Splendid beamed Tom.’ I opened and shut my mouth. I should warn her?

Now the thing you must remember of Sam, she has a condition which she equates to every other long term illness since she found out about it. Now, I would not belittle anyone’s condition, but just having one condition does not give you a right to say you understand, or give out the impression you would be able to take on any illness and work through it. You can see my dilemma can’t you? Should I go easy or should I ramp up the ‘muscle cruncher’?

They took great pains in explaining how the suit works, now that she had it on. The electrical currents to simulate the pain, the tightening and how it took impulses from the brain to collect data, how the joints had sensors to show instability and how that affects lactic acid expression, the heaviness of the thin material and how they could control it. She did try to ask how light material can make your bodies limbs feel like lead, but she was no geek and they were off the geek Richter scale. They did explain that they could only cope with 7 on the pain dial app themselves. The dial went up to 14 which is about where they thought my pain was at. I saw a flicker of I’ll show them how it’s done, dance with glee across her face.

Sam was giddy with her own importance, and eager to show everyone including me – probably more me, how she was a trouper and could carry on regardless. They explained with equal puppy dog excitement (that Duchess seemed impervious to) that their aim was to get slowly go up to a 7 while taking notes at each stage.

“It’s just like spandex hold it all up, tuck it all in and give shape underwear” she followed her shape from boobs to hip. Who could blame her with these dishy intellectual types all around you. Sadly for Sam however, her timing was off, they were too engrossed in the app on my phone. All of a sudden she squealed, and went cross eyed. I tried to stop myself from a giggle, but the corners of my mouth curled into a smirk and the giggle bubbled out.

‘Perhaps the inside thigh should be modified?’ I suggested

“What number have you got that on” Dr Burns asked suspiciously. I looked down as I was not too sure myself, they all looked at me clipboards in had for the answer.

‘Two!’ I replied blankly.

‘Two? Are you sure?’ Sam’s eyes were sort of watering. Simon and lead researcher unceremoniously stuck his hand up the sleeve of the suit.

“Yep, it’s a two; crank it up two more, than we will leave it for a while, see how she copes.”

I did as I was told, but instead of the pleasure of showing someone how it feels, I felt and pang of uncertainty as I saw the familiar pain flash over Sam’s face.

“No that’s OK turn it up to the” Another ripple of muscle contraction took the breath away and she held out her hand to steady herself against Simon.

“Just go for a walk hold onto me so your body can adjust to the sensations.” Simon suggested.

We all held on to the childish giggles and comments as Sam walked out of the flat and onto the street like a person constantly hit by a lightning bolt.

They all decided to make a cup of tea while they were out walking and adjusting. We sat drinking and nibbling while talking about the technology and what it would do for the medical staff with their teaching, about other chronic conditions. How it all brings a new dimension to care. They all thought that my idea of being able to process the information gathered by the sweat on how the lactic acid and the heart behaved was - a genius way of gathering and furthering research.

Out of the corner of my eye I could see Sam walk like a cat on hot bricks, the sharp intakes of breath, closing of the eyes and pausing to gain the will to move again.

“Perhaps we should get her out of the suit and make sure it is working properly” I suggested. Perplexed they looked over to me, then out of the window where Sam was teetering in high heels, unsteady and shaking her limbs. Duchess was following looking confused at her mistress, sitting down and looking around and I felt certain I could see the cat’s eyes roll.

Two days later they had the data from Sam’s trial in the suit and they had tweaked it, so that lower settings were incorporated with differing incremental settings for many other conditions and individual tolerance to pain.

Sam had not been round to see me in those two days since she ore the suit, and was frosty towards me as she went to work in the mornings. Today was not a good day for me the PEM had kicked in big time. Tom had been my constant companion. He had said that they had caused the relapse in my condition, the least they could do was support me back until I was better.

They asked Sam to try on the suit again. I could see the horror on her face, but she became my hero when she silently took hold of the suit again. But it was her words that grabbed me the most, when she looked at me in the eyes with determination and grit.

‘I’ll be happy to’ and as she passed me she touched my shoulder and privately stated ‘I have the freedom of taking off the suit, others don’t.They don't have the freedom to work’ She squeezed me just a little and there just right at that second I lost the ability to fly on a dream cloud, as a reality sunk in, but I gained another hero and a true friend!

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.