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

Children with ME may look normal, but you would not like to run their race for life!

I was asked a very good question from a friend’s daughter a while back. She had asked her mum what is and how does ME (Myalgic Encephalomyelitis) effects Angus. I found this hard to respond to for a whole range of reasons but most importantly because the medical profession and researchers haven’t had enough opportunity or funding to research, so therefor cannot give a definitive answer to the question.

ME is a complex, acquired multi-system disease, with profound dysfunction and dysregulation of the neurological control system; notably the immune and endocrine systems, dysfunction of cellular energy metabolism and iron transport, with cardiac impairments; well how do you explain that to a eleven year old? Well it’s a bit tricky but I’ll give it my best shot.

OK imagine it is sports day, and this year they have decided to make things a little more equal for the children with ME. So they have given the children without ME, weights on their arms and legs; you know the type that strap on with Velcro. This is how my son’s legs feel all the time - held down by weights that sleep does not refresh. There is a peg for their noses, as ME Sufferers have a problem with the flow of oxygen, and a tight elastic band on their head, headaches are a major problem for Angus and many ME sufferers.

So - imagine walking to the start line with all those constraints. It will take a little longer than normal and you will already be feeling the heaviness in your legs and breathing will be a little more difficult, but you  line up at the beginning of the obstacle race. There are sacks, egg and spoons laid out at intervals, you have will have to put stones in your backpack at these intervals; to simulate the lactic acid burn that ME gives you. At the end of the race you are given a sticker and told to sit down until the next race.

Remember you still have a peg on your nose and the stones in the back pack with weights on your arms and legs and a tight band around your head, sitting still is starting to hurt. You're not allowed water; ME children get more dehydrated, so it does not matter how much water they drink they still get dehydrated. You are then asked to line up to run the next race, after which you have to do a maths test. Because of the lack of oxygen and dehydration you are finding it hard to concentrate and your head is hurting. Now imagine how you would feel to do this every day, never feel as if the stones and weights are lifted and even after days or weeks that muscle tiredness or spasms that comes with over exerting don't stop aching.

It seems unbelievable and unkind to make children do this! But this is how a child with ME feels every day they go to school. Playtime is both physically that challenging, but because you cannot see the weights on their arms and legs they are never taken into account. We cannot comprehend how it must be. This though is the comparison of how ME affects the body, in just one part of the multitude body parts that are affected by this illness.

Unfortunately the medical profession are not taught about Post Exertional Malaise (PEM) or as me and Angus like to call it Post Activity Increase in New or Severity of Symptoms (PAINSS). PEM is the dividing characteristic or diagnostic criteria for ME.

The child with ME does not have a peg on their nose, no weights on their ankles or arms and no heavy backpack on their back for people to see, ME is invisible and children look no different from healthy children.

The only publicised research is about activity. I find this astonishing when you look at the research into the damage done to their brains and know that a buildup of lactic acid is 20 x that of a normal person, and yet the NHS fund exercise research on the young children that struggle? This however is for another or many other blog posts, which you can find on my page.

Please remember ME children hidden in rooms with an invisible peg on their nose, weights on their legs, tight elastic bands around their heads and heavy backpacks that never come off. They are true heroes that learn to live a restricted life, against the humiliation forced on them by a few.

We need biomedical research and we need it now!!! For all the 25,000 children who are #MEheros

Children with ME may look normal, but you would not like to run their race for life!

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

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!

My Mum and Dad's 50th Wedding Anniversary

On the 3rd of march 2012 a village, friends and family walked together to celebrate 50 years of life together. 

What I remembered about those years when we were small

Best idea yet, get someone else to drive

Then came the toasts 

The pomp and ceremony were worth it for the memories we will all hold of the day Winwick came together with the Church, bell-ringers, Skiffle band, neighbours, friends and family to make merry and enjoy. 

My dad taught the bell-ringers and was very proud of them on that day for the dongers and dingers and no clangers could be heard with the song of the blackbird, made this country scene idyllic.

Parallel Universe Part 6

Tomorrow will be the last part of Parallel Universe. Let me know if you enjoyed it  x

How on earth am I going to figure this one out? And why did he want to be part of our lives and why now? Why did he track me down and come and live a stones throw from my door? I have never been one for conspiracy theories but it was beginning to feel like one.

‘Should we ask the children what they think would be best? Ian suggested what I would’ve done in any situation like this. I couldn’t ask the questions buzzing around my head, I was too desperate for the right answers and I wasn’t sure I would get the ones I wanted. I could feel the pain of my heart breaking already.

‘Yes, I guess we should ask Sophie and try to explain to Henry. They could stay with my friends until I’ve decided what’s best.’ I was thinking out loud but the shift in the atmosphere caused a tension that vibrated through Ian. I prickled with irritation over not being brave enough. But the situation was diverted when I got a call from Sophie and Zara was bringing the children over on Sophie’s instructions.

I dressed with the help of Ian which was compromising and eventful. As he had packed my bag my, his intentions was leapt out of it. None of the comfy clothes were there. He defended his reasoning with that they were easier for me with a plastered leg. He examined each delicate item until he got a smile or a laugh from me. I would have preferred to slide down the stairs on my bottom but having a very nice dress on made that impossible and he conceded that perhaps it was a little intractable but enjoyable.

We were sitting in his large bright modern kitchen that still held the historical charm of the building when Henry came rushing in to find us. Excited and bemused by everything he saw which brought warmth to Ian’s face, it brought chills of anticipation all over me. Which object would he get a fascination with and break? As Sophie followed by Zara came in he asked the question…..

‘Daddy Ian what’s a bummer and can I see Harley?’

I choked on my coffee, Sophie uttered

‘Oh my god! You just can’t say anything around him.’ And Zara’s eyes nearly popped out with laughing.

I could have rushed to Ian’s rescue and explained about young children’s minds but it was too precious of a moment to spoil with common sense. I just looked straight into Ian’s eyes with the joy of the humour and let him find his own way out of this one.

He decided to skim over the “daddy Ian” bit and got to the ‘Bummer’ and to my surprise he knew what the little chap meant.

‘A Hummer is a big American car.’

‘Can I ride in it?’

‘If your mum says that’s ok.’ I nod my head at the two boys with exciting toys eyes.

‘A Harley is a motor bike’ Henry was beside himself with pleads that would not abate so Ian held his hand and took him off to show him his toys, explaining that they were loud, leaving Sophie, Zara and me to have a catch up.

‘Why is Henry calling Ian, Daddy Ian?’ Sophie looked down mortified

‘I was talking about my dad.’

It was the first time she had had a dad she could call her own and I just couldn’t rip that away from her but how could I stop Henry from getting the illusion of having a father figure back in his life. I could see the glassy tears start to form and my heart cracked a deep crack that only your child can give you.

‘I think Ian understands.’

‘That’s not the point Zara, I’m forced into a situation I didn’t want and I’m not sure I can cope with.’

She came around to me and they both put their arms around me and the tears fell from us all. We pulled away at the same time Sophie started to explain her and Auntie Zara’s cunning plan.

Zara was an interior designer and property developer with Ian. They had a few three and four bedroom houses for rent around Bury St Edmunds.

‘Zara said we could take one that had just come up for rent, fully furnished over Christmas rent free so we didn’t have to stay with Ian.’

Sometimes I thought I would burst with pride.

‘Sophie you can call him dad, we will just have to get to some understanding with Henry later ok?’ She nodded and I saw the tears well up again. I held her hand.

‘You would be doing me a favour as houses empty around Christamas can be a liability. Another good thing Mum doesn’t know about this one either so you will be safe…. for a while.

Can Henry call me auntie?’ I smiled and loosened the grip of control just a little more they obviously could sort things out well enough without me. Now how scary is that!

‘Of course he can.’

Rafe walked in and put his arm around Zara hugged her and came over and kissed me on the top of the head. Love oozed from them as I coloured a little after what I had said to Ian about him and as we discussed moving into the house I tried to get my mind around the ever shifting relationships. 

Parallel Universe 5

Fifteen years of responsibility came tumbling out, of not sharing the burden or the joy. In the time it took me to fall asleep I know I spoke of loss but they all merged and mingled. In the middle of his bed I lay alone as I had over the years. I took no heed over his pleads to console until exhausted I quietly slept.

Voices and the pain woke me and my eyes took a while to focus. I flinched every time I remembered some of what I had said last night. My innermost thoughts and concerns rang in my ears and the contortions it caused on Ian’s face. I had never vented those emotions to anyone before.

I had to decide quickly what I wanted to happen, what direction I wanted my life to take and how to let go so I could guide Sophie so that she wouldn’t get hurt. I tried to move but the pain was intense and I had no idea where the painkillers were.

I assumed that only having one leg incapacitated would mean the other three limbs would oblige and help me out but silken sheets were slippery suckers and before I knew it I was sliding onto the floor. Boobs slipping their anchorage just as the door opened and Rafe and Ian came in. My bottom half was cocooned within the bed covers and as I grabbed anything to cover my dignity I fell flat on my face.

They ran to my aid, rearranged and straightened me out.

‘I was looking for my painkillers, my leg woke up hurting.’ They both smiled down at me. Ian went to find them leaving Rafe to sit me down. The room was elegantly beautiful and I sat taking it in as Rafe fussed around raising my leg.

‘You ok, you look…’

‘Like shit? I tried to give myself cheep Botox on the floor but missed and enlarged my nose instead.’ His concern left as his humour took hold of his face.

‘I have to leave soon, do you need anything? I can call back’

‘I’m sure I do but I can’t think of anything.’

‘Well call me if you do.’

‘Would but I don’t have your number.’

He gave me a business card and we both felt uncomfortable, unsure. In came Ian and put a tray on a writing table.

‘Have you boys kissed and made up?’

They looked over to me and smiled. I took the tablets that were being offered. They started talking business and it transpired that Rafe was Ian’s agent. Ian held off two shoots that he was due to do this coming week rearranging and rescheduling. Squeezing my shoulders and kissing the top of my head Rafe left. Now life was complicated and shit or was it shitly complicated? No such word as shitly but in my world there should be!

Coffee with warm milk poured by the type of man I find irresistible in attitude and looks, first thing on a Saturday morning without the kids, oh how I had dreamed of that! Always be careful what you dream for is a warning I should heed. All my friends that were divorced, divorced their feelings towards their ex’s. I seem to indulging in my every fantasy. He sat there studying me as I sat indulging my daydreams, well lets face it, that was as far as it was going to go, I might as well enjoy it.

‘I know you are going to be sensitive to any suggestion I make and suspicious but I think the kids should live here over Christmas. They are off from school; you need a few days of rest and a bit of a recoup.’ His face twitched when he knew a sensitive subject was coming and as far as reading me he was doing rather well but like all men he didn’t see the bigger picture. I tried to keep emotion or thought out of my face.

‘What do you think?’

‘You just want the kids?’

‘No I just assumed you came as a whole package.’ A nice touch I though using Sophie’s words against me so softly and gently.

‘What about after Christmas?’ He was confused I enlightened him to my thinking. ‘After they have lived in this space and had the life you are willing to give them for a week, what then? How will it be for them when they have to return home?’ I knew there was no room for all of us back at mine but I was concerned how this would impact on the children, mostly Henry.

‘Henry is so very young to understand that his father dies and Sophie gets a new one who lives in a house like this. When they have got to know you, what then? I could never offer them a life like this and your mother will not be able to stop herself from reminding me of that!’ He could have defended everything a thousand different ways but he chose to agree with me. But it was his next statement that had me in turmoil.

‘I want to help out, I don’t want to make their lives or yours harder than it needs to be or has been. I’ll do what ever you think is best I just want to be part of your lives.’

Parallel Universe Part 4

As promised here is the next part. 

I sat on the edge of the bed as my ex-husband ranted and raved to his friend about keeping his hands off his wife. I couldn’t help the bubbles of giggles that erupted the absurdity of the man was amusing in a strangely perverse way. He had never shown that amount of feeling to me when we had been together. The idea that a complete stranger would find me attractive was a little silly too, did he not see that?

Anyhow if Ian had kept his lustful needs under control just a little he wouldn’t be in this predicament. This last point I think he must have forgotten. The fact that he felt he could still treat me as a position of sorts narked my sensibility so that my sensible side just evaporated. I felt my left eyebrow rise and my eyes widen. In the middle of his illogical argument he looked at me, I had the slightest of smiles that held his attention. Rafe followed his gaze squeezed me and got up to leave.

‘You don’t deserve her’ he looked over to his friend and then back at me ‘Will see you in the morning. Give him what he deserves is my best advice. There is a good man deep inside sulking’ as he walked past Ian he laid his hand on his shoulder. ‘It’s a good job I know you but she is a free woman so don’t screw around or you will lose!’

As he left the threat lingered on. Confused a little and loosing the will to think it through, a stiffening, starchy anger built up that erupted a little within my mind but exploded out of my mouth.

‘I want a drink.’

‘You can’t your on painkillers.’

‘It’s time I was taking some more so they are out of my system so it don’t count! I want a drink, wine would be good, whisky if I have to and then you can sit down and tell me what the fuck you think you are playing at.’

I never knew I could glare but it worked its magic and off he trotted with his good looks shining through. Bugger him!

I heard his footsteps as he came in with the wine in a cooler and as I lay on the bed he sat on the pillowed chair his feet on the sumptuous matching stool. I had braced myself and had thought of what I wanted to say. It was witty and classic, organised and grown up but that was not what came out of my mouth Oh no! What came out was truthful and childish.

‘Let me just get this off my chest before you explain yourself. You have no claim over me or my daughter. For one tiny sperm and one second of pleasure does not give you the right to take the last fifteen, nearly sixteen years away. And for your information I like sex! And I will have sex with whom I like. If you can fuck my friend when we were married I can fuck your friend when we have been divorced for the last sixteen years. Got it!’

There lingered for a time thoughts of retrospect on his lips but he swallowed them and took a big gulp of whiskey. I sipped the lush refreshing wine, composed myself and carried on.

‘Why have you moved here and did you track me down?’ With his eyes averted to his whiskey he nodded.

‘Why?’

He searched for words, ideas and reasons but he just shrugged his shoulders.

‘Just knew I had too.’

‘That is so typical and so selfish.’ I saw the pain and wondered why it was there. ‘I’ve had enough of today; I can’t be bothered with it quite frankly.’ He laughed a small ripple of a laugh that vibrated through the air and touched me ever so slightly.

‘Why the laugh?’

‘Because when you’ve had enough you just close down, because you can never stay angry for long. You are never bitter.’

‘You have no idea.’

I took another sip that was bigger than the last one and savoured its flavours, closed my eyes and took in a breath to heighten the taste. Tears for no apparent reason started to fall he made a move to come over to me and I held up my hand and stopped him. I didn’t want his comfort. Then it all came tumbling out.

Would you like to read the next part the more likes the faster I write :-)

Slamiming in the Ham 2011

Finally the needles have been pulled out of my eyes and the cotton wool that clogged up my brain has now been replaced with their usual fluffy clouds. I did indeed miss all the fun but I was there for the cooking of the turkey; that by all accounts tasted lovely.

This slower pace of life suits me just fine though as I feel less guilty about doing nothing in particular. The only regret truly I haveis that I haven’t been able to write, I miss writing :-( So here I sit with my boys doing their best cleaning the lounge impression while fighting, my daughter is picking what to

weare and I’m enjoying writing to you all, a perfect start to the day.

I have prepared all I can for when our guests arrive in a couple of hours when the ceremony of SLAMING IN THE HAM! will take place, I love the Christmas meals. After the turkey and all the trimmings comes the bubble and squeak on boxing day; for those of you who are not familiar with this meal, you take the cold mash from the day before (if your husband has not tried to dish them all out, Kev is very partial to mash) with the brussels and sweet chestnuts that take on a whole new taste when browned to that lovely golden crunchy brown add a fried egg making it a perfect and easy meal. I make the basis of a soup too from the turkey at the same time boil the ham leaving the next day relativly free. When I do 'slam in the ham' I only have to baste the joint in what ever recipe I fancy adapting it to my liking (for any one that is remotly interested this year it consisted of brown sugar, mutard, mango chutney and honey) adding a baked potato, salad a few friends and frolics and you have the one of Tilly Days of Christmas x

What are you up too and what is the best meal for you over this festive time

And Finally

Tilly has grown a Pair of Male Appendages!

It’s just a pity they are the size of raisins

Just think little fairy with small balls trying ever so hard to grow a bigger set! It is so wrong on so many levels but you have to admit it makes you smile and gets the point across. You have to prepare yourself for the world of writing.

Everyone has a view on what they read and the beauty of the written word is in the eye of the reader I guess. But when you have spent hours slaving away compiling a story or any piece of written work, you need someone who is going to take just as much effort giving you feedback.

My friends enjoy reading my work and so are bias. I have to say I like writing for them and would hate to turn that relationship into a professional one but I do learn from their reactions and their thoughts. None of them are trained in the field of critiquing and like everything else it has to be a professional art form to be constructive to the writer.

I had researched to find someone that was not going to rip me off and whom I could trust the opinion of but all they came back to me with was a couple of typo’s and your work is very nice! My fairy don’t do NICE what can anyone do with a word like nice.

My poor little scrotums were sucked up hiding and quivering. Was my work so bland nothing could help it improve! Well I started again and from small beginnings I have grown them into the size of raisins. This week I sent off my work to two competitions, now I have to inflate them to the size of plums and send my novels away.

Stephen king in his book ‘On Writing’ said something on the lines of ‘grow a pair of bollocks’ those five words have stayed with me and I have chanted them to my self all this year, ‘write and grow a pair and send your work out’. After all a writer needs to be read! Hence this blog and three nearly completed novels and one ready to send. More inflating needed I feel.

It has worked well so will be chanting all of next year too and I'm aiming for them to be the size of watermelons by the end of 2012.

Fig Hunting in the depths of Suffolk

Well I went fig hunting today and no fresh figs could I find. What to do think, think! Coming up to Christmas there must be some pickled or something. In desperation I looked round the local farm shop in Needham Market and there sitting on a shelf calling me were ‘Figs in light Syrup and Port by the Cottage Delight Speciality Foods’ It sounded good, it sounded like my only chance so I hot footed it back home.

            I prized those plump figs out of the jar; even though they put up a fight and mixed a salad dressing and put some of the syrup in it too. I whizzed some mixed nuts and fruit with cinnamon, in my little whizzer thing and sprinkled them on the lettice mix I picked, for its colour and taste. I baked the figs with goats cheese and drizzled the salad dressing and held my breath to wait for its taste to hit my buds……… not bad, possibly even good and will let you know what my girly friends think.