April 9 2020
A story about Myalgic Encephalomyelitis and hidden illness.
Gemma Everson talks about her husband’s diagnosis of Myalgic Encephalomyelitis; how it impacted on her family and led her to write a children’s book.
Our story began in July 2017. We had just welcomed our second daughter, Gracie, into our family and life was seemingly perfect.
I was on maternity leave and enjoying a break from my job as a primary school teacher and my husband Tom was looking forward to a long summer break from his duties in the Royal Navy.
Tom had been working hard, away from home, in a stressful role which he loved. Before his leave began, he had floated the idea to me of joining a team of military guys who were looking to complete a Lands’ End to John O’Groats bike ride.
It was over five days, so looking to complete roughly 200 miles a day. We were knee deep in nappies and bottles and I was still recovering from birth but I wanted to support him. Tom can be very persuasive! He was also more afraid of the Royal Marines who were trying to recruit him than he was of his hormonal, postnatal wife! Well that’s what I like to think anyway…
An Epic Cycle: Land’s End to John O’Groats
So the ride began and day by day I couldn’t believe the distance he covered as I tracked him on my phone. Lands’ End to Taunton on day one, followed by Taunton to Warrington on day two, passing our own home in Shropshire. It was staggering and I felt so proud of his accomplishment. By the third day, a couple of guys had to dropped out due to injury and the team was much smaller. This meant the days became longer, the effort became greater and nutrition and sleep went out of the window. But he was committed and was not about to give up or let the team down. Anyway, it would be over in a couple of days and then he could rest all summer…
When Tom talks about the penultimate day, he describes almost an out of body experience he had. Like his brain and body disconnected and he stopped feeling anymore. It still hurt but that brain and pain connection just went. He carried on for another two days until finally he arrived at a very bleak, foggy John O’Groats.
Tom arrived home the following day and Georgia, our eldest who was then 3, proudly placed a handmade saltdough medal around his neck. He was such a hero in her eyes. We listened to his tales of the ups and downs of the week and I was in total awe of his mental and physical strength. I ran him a bath and helped him get in and out as he was very bruised in places he didn’t know existed!
A Summer Rest?
The summer break began and he continued to feel a bit tender and lethargic. We had relatives and friends visiting and lots of time spent lounging in the garden in the hot sun. A few people commented on how tired he was, but said it was no surprise with a newborn baby in the house. I knew he wasn’t the one getting up in the night though and at the time it was a bit of a sore point!
On the August bank holiday my cousin was visiting, he took me to one side and said “there’s something not right with Tom”. I think I’d realised this too but I’d needed this affirmation. He had been having lots of nosebleeds after the shortest of bike rides or physical exertion and would fall asleep as soon as he sat or lay down. He’d always been so hands-on when our first daughter arrived and this time it all seemed so much effort for him.
Fatigue sets in
By September, he returned to work. He was just so fatigued and after a week they sent him home to recover suggesting it was stress related. I mean he loved his job but it was stressful. Stress is stress after all.
It was Georgia’s 3rd birthday party that weekend and I remember him crawling to the top of a soft play and just sitting there, propped up against the ball pit. Being part of things but not quite part of things. Alarm bells started ringing.
Over the next seven months, Tom became more and more fatigued to the point that he was practically bed bound. Unable to do anything more than shower before his body ‘crashed’ into exhaustion and he would crawl back to bed for days on end. Maternity leave was largely about caring for him and I was so grateful that I had the time to do that. At this point he had seen a GP and they had also suggested stress as a cause. Cognitive Behaviour Therapy (CBT) was recommended but Tom knew it wasn’t mental health related.
After doing our own research and speaking to people we knew it seemed obvious that what Tom was experiencing was classic Myalgic Encephalomyelitis (ME) symptoms. ME or Chronic Fatigue Syndrome (CFS)It is a long term neurological condition that causes symptoms affecting many body systems, in particular the nervous and immune systems. It affects around 17 million people worldwide and yet it is very misunderstood and has not cure.
The diagnosis was devastating for us both. Explaining to family, friends and colleagues was difficult as very few could really grasp what was happening. It was more than just tiredness and not something that could be easily fixed.
It hit our daughter hardest
Georgia particularly found it difficult to deal with the loss of her fun and energetic Superhero Daddy. She could not understand why he was unable to do all of the things they had once enjoyed.
Bike rides in the park, family swims and ‘rough and tumble’ were all suddenly a distant memory.
All of the plans we had dreamed of when pregnant with both girls felt crushed and the weight on me to carry us all felt heavy. Particularly as I was dealing with my own postnatal anxiety, which was exacerbated by Tom’s condition and I had recently just returned to work.
Most days, whilst putting on our shoes, Georgia would ask if Daddy was coming out with us. This felt like a stake to the heart as I had to repeatedly explain that he wasn’t, that he couldn’t. Then came the next predictable question of ‘why not?’. After a few months of saying Daddy was ill, sick, poorly, not well I just couldn’t do it anymore. Each time I saw her hopeful smile lessen a little bit more. I knew she had an anxious mind and I worried about how much she was really understanding.
She came to me one day with batteries from a toy and asked if we could give them to Daddy to fix his broken battery. Her role play started to involve making magic potions and then administering then with oversized toy syringes to daddy’s big toe.
One particular bedtime in March, she asked me a question I’d been hoping wouldn’t come. Will daddy ever get better? And then she asked me something I just hadn’t banked on, ‘will Daddy die?’. It was heart-breaking and at that moment I realised Georgia needed a new story. I took to Google and found nothing that seemed quite right so, Supercharged Superhero was born!
A Supercharged Superhero
Supercharged Superhero, is a moving and true story about one little girl and her super energetic, superhero Dad whose battery suddenly and unexplainably becomes broken and will not fully recharge.
The rhyming story explains their journey through change, loss, grief, despair, acceptance, readjustment and hope as they come to terms with her father’s condition.
Not just about Myalgic Encephalomyelitis
I shared the story with a few friends and quickly realised how relatable it was to other invisible illnesses, disabilities, injuries and mental health conditions. The story has also helped family and friends understand more about Tom’s condition which has really helped. I’ve also learnt so much about things that people around me are living with which I wouldn’t necessarily have known about.
It became my new year’s resolution in January 2019 to turn it into a book and I have been blessed with the most talented and generous friends, Hope and Becky, who have illustrated the book for me. This is their first illustration project and they have captured our family’s story so perfectly. Supercharged Superhero will be available on Amazon.co.uk from March 28th 2020 and we cannot wait!
This powerful story changed everything for our family and suddenly, although Tom was still struggling physically, Georgia was given the language and understanding to help her accept that things had changed and move forward with this new version of her Dad. Together, they learned to have fun together in different ways and slow down and appreciate the small things in life which is never a bad thing!
I am passionate about getting this book into the hands of those families who need it most, particularly for young children in caring roles. Tom and I firmly believe that everything happens for a reason and if this is our reason then it makes the last couple of years a little bit sweeter.
About Gemma Everson
Gemma’s family live in Telford, Shropshire. She is a primary school teacher and her husband Tom is a Chief Petty Officer in the Royal Navy. In eary 2018, aged 34, Tom was given a diagnosis of Myalgic Encephalomyelitis (ME/CFS).
He has spent the last 22 months at Hasler Naval Service Recovery Centre based in Plymouth. Since then, Tom has made some progress, both cognitively and physically. He may never recover fully but as a family we are so very grateful to the staff there who have equipped him with the tools he needs to live a relatively normal family life. He is expecting to shortly be medically discharged from the Royal Navy, due to the myalgic encephalomyelitis and hopes to transition into a new career in IT.
The illustrators of the book are Hope Gwilliam and Becky Rawlins – friends of the family and live in Telford, Shropshire. They are graduates in surface pattern design from Staffordshire University and directors of ‘Hopefully Made’ an eco-friendly company specialising in hand screen printed gifts. They are both talented artists who are passionate about children’s picture books and aspire to become professional children’s illustrators. This is their first project and Gemma is delighted with how they have perfectly captured her family’s story.
Like this blog? Click here to read more.
Tell us about local places that are helping vulnerable people during the Covid-19 crisis. Write a review and click the Covid-19 Help icon!
Join our conversations! Click here to ask questions, find solutions or share your experience.