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.