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The Story Tellers Story ( one person’s journey with Fibromylagia)

picture of author

It’s said that everyone has two stories – the story of their life and the story of how they wish their life could be. Anyone that can tell more than two stories is a writer.

“You’ll never believe how we met.”

I say the above a lot in my life. So when I saw it as a prompt by an online publisher, I knew I could draw on my experiences to create a story. A lot of my friends are writers, and have had ambitions to be published since they were children. I’m slightly embarrassed to admit, I had no such ambition! This was the first story I’ve ever written with the intent of being published, and my story was accepted immediately. I have my friends to thank for this, as they highlighted the pitfalls they had experienced in becoming published, which I skilfully avoided with their advanced knowledge. Community is a fabulous thing.


I decided to write with the intent of being published because it was a challenge, and it didn’t matter if I did not succeed. My finances don’t depend on being a successful writer. I would have the satisfaction of knowing I tried something different to add to my experiences of life. It was certainly an experience! Physically it was no different to writing for my University days many years ago. The voice recognition software that I was given as disabled assistance to complete my studies - sharing the text creation with my voice as well as my arms – is still useful, as is the laptop. But the mental side of creating characters from nothing and imagining situations they found themselves in was very alien to me, and the new headaches certainly indicated that!

The deadline for the stories came and went. That didn’t bother me, and I continued to write the story as fast as I enjoyed the process. As it happened, the deadline was extended by a month, and my story was complete for that deadline. Any misguided idea I had about that being the end of the hard work was quickly shed. The editing process to make a harmonious voice between the publisher and I took three months. I made them aware of my health and how much time I’d need to rest between edits, and they agreed without qualm. If only all employers were like this! It’s another community where we’re working towards the same goal – everyone enjoying the process of creating stories that are good enough to share with the world.

The story of The Photographer’s Closet is one of a middle aged Welshman who pretends to be a Victorian aristocrat from a fictitious TV show Yesterday’s Tomorrow. His hobby enables him to help a photography student who is studying the community of the TV show. In return for helping the student, the Welshman overcomes a mid-life crisis. Fellow Fibro-people will relate to putting on a persona to the world to give the impression that everything is fine. Hopefully people will read this story and overcome their own fears about leading a different life; a life that does not conform to outdated beliefs that govern our society. I identify English as well as Welsh people, as while we are all British, we are a collection of unique individuals. In one way, we have no peers, as no-one has my exact DNA so I cannot be judged by anyone for being me.

Perhaps it is ironic that my worry about financial security came after my story was accepted for publication. Fear is from creating fiction about potential futures, and all I kept creating in my head was a brown envelope coming through the door telling me my income from the government had stopped until they had assessed my fitness for work because of this sporadic income. Then I learned how little money I get from the sale of each copy, and let’s just say I won’t be telling Her Majesty’s servants that I no longer need to endure the stress of form filling any time soon!

Perhaps the hardest part of the publishing process was deciding who to thank. My family are obvious, as without their care I would be dead. But to my friends, who pick up the tasks I struggle with and who want me to enjoy being with them. I developed FM in 2001, and the experiences I’ve had and the people I know now are because of my illness. I wouldn’t change that. You soon learn who your friends are when you become ill, and I’d rather have one good friend than a lot of people that don’t really care. It’s also refreshing to feel confident to tell the truth to my friends about how I am rather than the default fiction of “I’m fine”.

The story of my life with FM in recent years has been transformational for my happiness levels. Someone loved me simply because I exist, and they have an amazing level of happiness knowing me. And I wondered – why don’t I love myself the way they do? So I chose to love myself because I exist. Within a day of this, a book appeared in my life called You Can Heal Your Life by Louise L Hay. In it are affirmations – things you say out loud every day - that change your physical body. As it was, a friend lent me this book, but a one-off investment of £8 for a lifetime of tools seems reasonable for a support group. Part of me knew I had nothing to lose other than feeling a bit silly for saying things to a mirror, but I did some research about positive thinking and vocalisation having an effect on the body. The research led me to Dr. Masaru Emoto, who photographed water crystals that had been exposed to positive and negative thoughts and words. It was plain to see in these photos that saying the right things really does change the physical for the better. After all, we are 70% water. Two years of affirmations later, I think of myself as a special snowflake! My health is better than it was, and using my voice doesn’t cost any money or rely on anyone else doing something for me.

At some point in the last two years, I decided to stop the very British thing of queuing – that is, NHS waiting lists – and go to the information about potential help rather than information coming to me. I realised that I’m the one that has to live with it, not the various medical people who get paid regardless of how successfully (or not) they help you overcome your health conditions. I realised that it’s okay to be ill, as it’s our body’s way of telling us that something needs to change. I’ve discovered NLP – Neuro-Linguistic Programming – that doesn’t involve reliving traumatic events as it deals in identifying how you think rather than the contents of your thoughts. Once you have the awareness of how you think, you can work on changing it for the better. I quietly fainted at the price of having someone perform this on me, but thankfully I found an online Groupon that meant I could teach myself the techniques as a one-off payment on state handouts.

My most recent (9 months ago…) health appointment with neurology (to do with my sleep problems) had me answer a question: Do you hear voices that other people can’t? My answer is, yes. Part of being a writer involves having fictional characters in my head that absolutely insist that I tell their story. I’m sure when I next see the neurologist (in 9 months time…) I will discover if they have a sense of humour. The last time I had that question my answer was, “Yes, because my friend is deaf”!

On the more immediate physical side, my research discovered that most of our bodies are too acidic for our immune system to function properly, and FM is an auto-immune disease. Perhaps the cheapest way to increase the alkalinity of our bodies is baking soda (NOTE: Heart conditions and high blood pressure are often caused by high sodium levels, so an alternative to sodium bicarbonate is potassium bicarbonate.). Currently, my skin is covered in spots in a quantity last seen in puberty, so I know my immune system has had a kick start! (It would be pretty awesome if the solution to our disease was in our kitchen cupboards.) I am pleasantly surprised that changing my diet to alkaline and organic foods hasn’t increased my food bill, as the higher nutrient content means that I’m not eating as much volume, so my excess weight is also dropping. I’ve always known that we are what we eat, but I’m only just discovering what it is that I’m eating. Food labels don’t come with acidity information!

Hot off the press is the notion that the acidity of my body is allowing a chronic and widespread growth of Candida that’s taking up nutrients that I eat so my body can’t repair itself. I do wonder if the widespread pain and slow repair is because of a fungal infection in the tender points. The fungus is something that isn’t tested for on the NHS, but the Internet has options for low-cost removal, that I may embark on once my budget recovers from the NLP course.

If you’re still reading, then I must be a good writer. My story comes with notifications that it is in UK English and that the ending is Happy For Now. It’s a reflection of my life. I do have a character talking to me who is disabled by FM. He may have sprung up to show the world what day to day living with chronic health problems is like.  When his story will be seen depends on how much my FM lets me write it. My FM depends on how much reading I do about the potential causes and solutions. It’s not an endorsement for a particular treatment. It’s just me sharing my experience with the community, in the hope it will inspire them to find what works for them. After all, we’re all unique.

Take care of yourselves, and keep reading.

D.T. Dragon



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