A Tilly Moment while living with ME - Sitting On A Bunch Of Keys

ME is Myalgic Encephalomyelitis

PEM is Post Exertional Malaise

I had packed the car ready for the two-hour journey for my son to have treatment. I have 101 things to say about that but will leave that for another day. Going anywhere for my son Angus, is like getting ready for the Olympics, so much training has to be done in order to do an event and should be an Paralympics sport as a ME triathlon event. Event 1: getting out of bed Event 2: dressing Event 3: travelling in wheelchair of a distance of 100 meters, not self-propelled but pushed.

It sounds far-fetched and when I explain about this to any medical professional, it is met with utter disbelief and lack of understanding. How can simple movements; innocuous as they are for any ill person, have such detrimental effects that it takes weeks, months or never to recover from. The science is there but is complex and too much money is to be made from “Cognitive Therapies” to ever look at the truth.

The only problem with those who have ME entering an event is that they may never recover from even the training. You think I am over exaggerating, sadly I’m not. Look at the overtraining of the Olympians and you will find ME symptoms. In fact, there was a paper that showed the similarities, there is also a paper that explains PEM when doing a hand gripping test. Fluff, I broke my promise - to save the science for another day. Back to the event of the Key sitting.

Angus had struggled to wake that morning and this alone in enough to make the next week a bad week for him. He knew the importance of the tests and treatments so tried not to moan too much. I had to help him get dressed; he finds this so hard to accept. For any 14-year-old privacy and dignity are keenly felt and how do you honour that when he is so incapacitated on some days? The physical exhaustion was taking his ability to be mentally alert and is the first sign of him reaching the over training state and I knew we were in for a quiet drive. My heart sank to my boots and it took all I had to pull those bootstraps up. But pull them up I did, with my stiff upper lip.

You know that dreaded question about who you would invite to a dinner party - alive or dead, well very often at these times I think a lot about this. Among my invited guests would be an alert Angus. You see he can, at the right time of day and when he is not suffering PEM, be full of conversation, asking questions that only a quantum physicist could answer; like what Dark Matter is and how did the big bang theory start. I normally retort with who wrote the big bang theory for the TV series. Only I have to quickly go on my phone and find out their names as I’m not good at remembering names “Chuck Lorre and Bill Prady”, I respond. We both giggle; which is not good for Angus and this pushes him deeper into PEM, due to laughing being like a physical workout and his aerobic capacity reached. There is research to prove that laughing can be part of your exercise regime – I kid you not.

I have my own way of explaining complex matters which Angus finds both funny and exasperating. I tend to break them down to my level of thinking and use everyday objects I’m familiar with. So here goes for a Tilly Moment explanation of the big bang theory (not the program).

In a dark room, void of all matter I flack my duster which causes a bang - we have particles and static electric - the beginning of life starts. It takes a few minutes for his stunned silence to explode with his indignation of “you cannot be serious mum”. The joy of it has to be experienced at least once in your life; seeing someone so depleted in ability and suffering, to still be able to laugh and put a good forceful counter argument together, of how wrong you are, is so delicious. However, the guilt after the event is very hard to cope with and it is Angus that then pulls my bootstraps up and reminds me, it is not my fault.  

On our 2-hour journey we normally stop for something to eat, another simple pleasure that most people take for granted.  A break from the movement, cars flashing by and the rolling countryside that makes it so difficult for his body and brain to cope. He can’t get out of the car so a drive through is the only option. Those few minutes have become precious to me, a few seconds of normal life and to glimpse at the growing understanding of the complexity of the life my son now has. I don’t think anyone could be prouder than I am on these journeys, even if he won the Olympics or world events, I don’t think I would feel the way I do on those few precious moments. To know and truly appreciate the complexities of ME, you have to live through it to understand why I am so dam proud of him and why this young lad is my ME hero of epic proportions.

When we arrive at the centre, we all eagerly await for him to recover enough from the journey for his banter to start. His unfolding personality and his humour that brightens up their day is another rare joy that we want more of. We can all see the incremental improvements and with just a blood test to go we then make our way out to start the journey back home. This is one of the handful of times my son in the last 7 years has had outside his home. There are no charities that showcase his illness by sending him to swim with dolphins or to theme parks. No personalities that want to go on catch phrase to support my son in any way. He has no elevating carefree times, just an expanse of time like ground hog day, where the only thing that changes is his age - going from child to young man in the same state.

Navigating the doors with his wheelchair we treat the journey out of the building and into the car like a slalom, which I am happy to report I am getting better at. Time trials next. He has to sit for a few minutes before he attempts to get in the car; because we have laughed so much his body goes into a whirlwind of refusing to do anything but keeping his world dizzy and crippled with chest pain.

While he summons up the determination to move again, I put the bags in the backseat and busy myself so he can take the time he needs. I have to wait for him to move trying to engage with him at this point puts him under pressure to do things against his bodies better judgment and causes more problems later on. When he has got himself in the seat of the car, I pack and lift the wheelchair in the back and tie it down. As yet I have been unable to get a blue badge; again for 101 reasons but mostly because just trying to get proper healthcare for him is like taking a Mensa test while doing downhill slalom at speed. I have found I have needed a fully operational office and know a system that is as fragmented and hidden as Dark Matter. Getting a wheelchair in a car in a normal parking spot is difficult, two herniated discs prove that.  I then proceed to find the keys that I have put in the endless pit of doom I call my handbag. No keys. I know I’ll empty it onto the backseat of the car. I find everything I have lost in the last 6+ months much to the amusement of Angus. But no car Keys. It’s not as though they are easy to lose either for the love of plucked feathers where are they.  I must have put them on the folded seat in the back of the car while putting wheelchair in? No keys near the wheelchair? No keys, In the bags, they may have dropped in there? No keys.

We start to giggle as I look all around embarrassed, in and out of the car using my phone as a torch. Taking my own advice that I give to others; I start to think and visualise what I had done since unlocking the car. Where did I put the keys? Did I definitely unlock the car; self-doubt creeps in. Could I have left them in the building? By this time, we had everyone looking for them. I eventually asked Angus to get out of the seat so that I could look under the seat to see; in a vein hope, if I had dropped them there. Knowing this would cause him more physical problems I apologised and felt so guilty. However, there on the seat were the keys. “How could you not feel them” I asked? It’s not like there was just one key, there was a pile of them. We giggled about his insensitive behind and remembered when he forgot the chocolate, I had brought him one day that he sat on and which melted and made such a mess.

The elation of the everyday is a short-lived joy but one that I hope, in time, we will have more of without the PEM. For readers that do not know the ramifications of ME and PEM probably do not appreciate what a day out like this means to me and Angus. Angus has been 95% bedbound for the last 6 years and ill and house bound for 7. The next morning, he could not wake until 11.30 and it took him until 1.30 to be able to speak to me. His lips looked as if he had gone in the dessert with no water for days and the pain was painfully written on his face. He asked me to leave him, to let him recover he needs solitude, quiet and no interaction.

Living through these times is the hardest to cope with for me. This is compounded knowing what my other two children were doing at his age. For Angus like all athletes it is part of his discipline and the price he has to pay. Unlike athletes he has no one patting him on the back saying he is amazing.  The feeling of inadequacy deepens for him. His bodies inability to live frustrates him beyond any endurance training.

This enforced solitude hurts beyond any words I have found or any analogies to equate it to. It takes all our strength of character to get through these dark times and he manages it better than me.

It can take weeks or months for his body to ease the grip it has on him and we both know from experience it may never come back. With the new treatment it fades in just over 2 weeks and back to the normal pain and difficulties that most of us would find intolerable, that he has had to learnt to accept as his new normal. We get ready for the next outing and one day; soon I hope, we will be going out to something he would like to do instead of doing something that he needs to do.

Like the opening of those glorious spring flowers now popping their heads out in the bitter wind, he starts his conversations and my heart leaps with uncontrolled joy on the inside and a loving smile on the outside.

The banter of a mother and son can be heard once again. The subject of my inability to keep safe hold of keys and his inability to feel those keys while sitting on them becomes a verbal tug of war and one of those family anecdotes you keep hold of and love the retelling of and long may that continue.

 

I love the changing months, don’t you? I find it the greatest pleasure in life I think, the freedom to explore those changes. Be it rural countryside, town or city to see the changes of the seasons is a way of viewing the landscape with fresh eyes and senses.

The excitement of January leading into February with the lengthening of the days, everything is just waiting to leap into action. The fresh buds forming this year’s display of beauty is in every tree and shrub. You have to admire the Crocuses popping their heads above the grass, opening up in spectacular glory, delicate and oh, so brave at this time of year don’t you think?

Those concealed and tightly cocooned buds are like closed bursts of joy, filling out and loosening their grip waiting to pop out their magic. Plants and trees waiting to build on the previous year’s growth and those daffodils popping up in more abundance than they did last year, like little family gatherings building into that “host of golden daffodils” invigorates my thinking.

As I struggle against the bitter gusty wind and drizzling rain to retrieve the washing and the odd sock from our beloved sock killing terrier, Amber, I look up to see my son’s window and wonder if his “inward eye” can still remember how it all felt; that freedom of wondering around pain free and able to breathe easy?

I giggle as the line in William Wordsworth poem “I wandered lonely as a cloud” plays in my head. Looking up at the sky with its canopy of clouds I ponder - are clouds ever alone? We may just see one in our felid of vision but there must be more in the sky around the world.

Solitude, I used to dream of solitude. We all need it, to gather thoughts and allow our brains and minds to think with wondering thoughts. However, when it is forced on you when you are a carer or due to a body being unable, how do you fill your heat with pleasure?

Sometimes you know when I look out at the blackbird and the robin singing or tugging at worms; mostly when I’m doing the washing up, I’m finding it harder to look on those wonderful sights with pleasure and the frustration of being bound and gagged by my son’s ridiculed illness, is becoming harder to bare without that bubbling anger.  Over the last seven years I have learnt a lot about self-control while being gaslit by those out of control gaslighters.

That poem reminds me of those long walks of babbling fun with my youngest son; a double edge sword now that can cut deep. Those carefully kept moments in time, when we had taken his older brother and sister to school, that I laid down so carefully to look back on are empty and hollow now.

He was never happy lying down, so pram walks were out of the question. I carried him in a pouch and then in a backpack. He wanted to be upright and able to see as he slowly slipped into slumber. This was my quite thinking time while the baby slept, and the dog wagged its tail while sniffing the undergrowth. This time, however, was short lived. Quiet reflective time was out of the question past the first few months. In the backpack he would babble with authority and would communicate all sorts of tricks to Grace our black lab.

As soon as Angus was born, he was alert, active and so full of life it was breath taking. He was never happy taking a passive role, if there was action, he was right in the middle of it and mostly the instigator of it. Some days I would stand back and marvel at his ability to cause mayhem in the most unexpected ways. He liked to do things in a pattern but occasionally he would break that pattern and all hell would break loose.

You see most mornings he would play with Grace next to me while I got on with putting the washing in. Hoping he was exhausted enough to just read a book or possibly having a little nap so more of the morning’s chores could be achieved. That gentle routine had been established right? Only a matter of planning another activity and well life was sorted - right? However, that gently and well-established routine had lulled me into a false sense of security.

Welcome to a Tilly Moment

I had my back to him, that cold and exhilarating morning, I was sorting and putting in washing while making a list in my head of the plan of action for that day. As children often do, he would copy me and as he sat there book or ball in hand and sock in Graces mouth his gentle babble and odd garment thrown that routine had put a glorious smile on my face.

I was mindful that Grace thought she was a washing machine and her spin cycle was out under the apple tree, which would only stop when she had found just the right spot to lay the item or items freshly laundered on the most muddy spot she could find. She would then sit and patiently wait for my arrival. This was playtime folks, oh the joy of it!

So far so good and everything under control take a deep breath.

I had just seen the tail wagging like a starting flag at the beginning of a race and wanted to turn on the washing machine before I started to “retrieve it or lose it” game and yes I did wonder which one of us was the dog, Grace for the “chase me” or me as a “retriever? I would find the odd bra when planting bulbs or stuck in the oddest of places in the kitchen - normally when I was making a drink for a client. Have to give it to them, they definitely kept me active, mind, body and soul. 

This day however, for whatever reason was not going to that well-ordered routine. Turning round I was gobsmacked as I surveyed the carnage. The washing powder all over the floor, in Graces Watering bowl along with my sexiest and only one left, bra being used as a tug of war rope. It took me a few moments to register the fact he had unlocked the baby lock, opened the seal of the childproof box and where did he get the jug from, and the chalk, glitter and glue?

Grace’s tail was causing him to go into hysterics as it wagged. Adding to the hysterics was my flapped around trying to retrieve as much powder and put it back into the box. I grabbed the chalk from his mouth and dumped the jug in the sink. I wondered if I could use the rest of the glitter festooned washing powder in my husbands work clothes. After all he did tell me his life could do with a little extra sparkle.

I took Angus over to the only Angus safe room in the house. I was too stunned to be cross and as I put him down. He just got up off the floor wagging his finger at me as though I had done something wrong. Turning back from him and the child gate, I couldn’t help myself but to chuckle.

After cleaning up the mess, I made a coffee to get ready to read the book he would have chosen from the bookshelf. It was our time - me for a coffee, him for a story and Grace for a bone. I made notes not to buy powder ever again and complain about the child locks, childproof box, surely Angus can’t be the only one who could open them?

I found him, however sitting on a large pile of books reading one to Grace who was intently looking at him. Not sure if she was listening or just waiting for a bone but it was a wonderful sight and I stood listening for a while. When he saw me, he tried to scramble off at such speed he rolled down the mountain of books and bumped his head. Wondered if he should cry for a second or two but decided to carry on reading, red mark forming on his forehead like a large egg and grace with her chin on his chest - his constant guardian and the ultimate companion and protector from his mother’s telling off. Her golden amber eyes all-knowing and loving, just put things into a perspective. He is only young once - he will learn - let him be.

Grace died when Angus was around two. Our companions now are two Norfolk x terriers’; mother and daughter. They taught him to ditch jump and run in circles of joy. There were times I just wanted 5 minutes peace to listen to the bird song, breath in the fresh icy air and drink it all in. Or to sit for a while and have a quiet cup of coffee looking at the robin and blackbird, as they sung in our garden. The feeling of satisfied exhaustion settling down my day while I read to him and he slowly slipped into sleep. I would look on him as I did the tightly closed buds of that emerging spring. He was so full of potential, joy and wonder just ready to burst into life and make his mark.

It is these memories and times that I remember now when I walk. They bring never ending tears in my heart, that prick my eyes so that I can no longer see the beauty around me. I am riddled with guilt when I walk, as I walk free and easy while he is cocooned in pain and in such depleted energy.

The exhaustion I felt back then was one of fulfilment, the exhaustion I feel now is of frustration of being let down by a system that is hell bent on portraying me and thousands of mothers like me as “demon mother”. There are 101 reasons for this you can read them in my blog over the last 7 years.

However, nothing compares to my son’s exhaustion. It is like watching your delicate promises of this year’s perfect rose being frozen, while gradually seeing tears appear in those delicate petals, one petal at a time.   I feel as if I’m watching that most glorious rose bush, stand alone with stunted growth, riddles with viruses, mildew and green fly, wondering how much more it can take.

I have always dreamed of writing a silly little blog, full of Tilly Moments for friends and family to enjoy. That came to an end when Angus fell ill with Myalgic Encephalomyelitis (ME). They renamed ME with Chronic Fatigue Syndrome (CFS). My son does not have fatigue, he has exhaustion in every cell of his body. Heart breaking as it is, the worst thing about it is the abuse of mental illness, being used as patient blame and demonising motherhood. It is easy for the medical profession to convince the public those that suffer with complex conditions, are unworthy of support or biomedical research or treatment.

So, what to do? How do we change things? I can’t leave it like this can I?

Change will only happen if we start to talk about what ME means and allow those young people like my son to have a voice. Problem is, he is too ill to engage and talk. I need the public to get behind mothers and bring back the respect and common sense. The evidence that mothers have been keeping children safe for millennium is there for us to see and how many children needlessly die because a mother is not listened to or discredited.

My son’s body has changed not his personality or his mental state. The only suppression of his personality is the debilitating illness he suffers from.

He maybe frozen and damaged but his humour is intact and from time to time we have still have “Tilly Moments” and by hook or by crook, I will continue to write our silly happenings to bring awareness to the lived reality of ME but mostly to bring a smile, a giggle or perhaps a belly laugh.