When the party’s over

By Orkney Fibromyalgia Sufferer

If you entrust your data to others, they can let you down or outright betray you. – JONATHAN ZITTRAIN

Receiving my Fibromyalgia diagnosis did indeed feel like “the party was over” looking back on it. It was. It still is to some extent.

Finally, It was confirmed after 3 years of declining health. Initially, I felt a brief moment of relief. What followed, was one slap in the face after another. Some of them before I had even left the neurologist’s office.

“You have Fibromyalgia,” he said. My first thought was “phew I’m not going mad, I really am ill” I’d already received a diagnosis of Functional Neurological Disorder and ME/CFS a few years previously.

“There’s no cure,” he said. That was the first face slap. “What about treatments?” I asked. The neurologist let out a heavy sigh before looking down his glasses at me like an imbecile. Yes, there are medications you can take” he said condescendingly. Ignoring his tone, I again thought “Phew, I am not going mad, I can control this, it’s manageable” “Can you tell me about them?” I asked. It was at this point he looked over at his assistant with the get her out of here expression. Shortly afterwards hurriedly they both ushered me out of the consultation room The door slammed behind me. “Oh well,” I thought. “My GP will help me”, “She’s been brilliant”

Little did I know then I was about to embark on the most treacherous journey of my life. I was to receive many more slaps in the face from consultants, doctors, specialists, friends, work colleagues and family.

Admittedly I knew very little about Fibromyalgia all those years ago. More than a decade it feels like I am a medical encyclopedia. I had to take to the internet to educate myself. It was clear that the NHS wasn’t going to help me. This was my problem. I had to do something about it. I had to learn and learn fast. I’d just been diagnosed with yet another life-altering condition and all the NHS were prepared to offer was prescription after prescription after prescription.

I avidly read as much as I could about Fibromyalgia. It is a continuous journey of self-discovery. I’ve learned about my body and its limitations. Which changes day by day, hour by hour. No two days are the same. A complete transformation has taken place. I no longer recognise or identify with the healthy person I once was. Nor do I recognise the sick person in the mirror.

I feel like my body and mind has been taken hostage by a squatter, one I cannot get rid of no matter what I do or how hard I try.

Despite this adversity, I have kept hold of my humility, wit and sense of humour. I believe that laughter can get you through the darkest of situations.

Becoming chronically ill has magnified my empathy, kindness, compassion and understanding of others. I might not agree with someone but I will always understand and respect their point of view.

As I have aged I have learned to care less about what other people think of me. I no longer fear judgement from others. I am secure enough in myself to know that I am doing my best in a situation where my whole world’s been turned upside down. Something I didn’t cause, something I cannot cure and something I couldn’t prevent.

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