In 2012, after 2 years of a sharp decline in my health, I was diagnosed with Fibromyalgia. I was expecting it as I just knew from my symptoms that Fibromyalgia would be the cause but that didn’t make the diagnosis any easier to accept. I felt a small sense of relief as I now had a name for what I was experiencing and I wasn’t going mad, making it up or imagining it. But that small moment of relief quickly turned into shell shock. How do you accept being told you will be in severe pain every day for the rest of your life and that there is no cure? I still haven’t accepted it; I don’t think I ever will. I don’t want to either as I refuse to let this illness define who I am.
I feel like I am locked in a continuous cycle of grief. Jumping back and forth between the stages. Tumbling around them like clothes in a washing machine.I feel destined to be stuck in this loop for evermore. Anger is one of the stages that I always skip. I don’t feel that being angry about my health situation is productive or helpful. Instead I bounce between denial, bargaining, depression, acceptance. My refusal to accept my limits, continually negotiation with my body to permit me to have some semblance of a normal life. If I were to accept it, listen to my mind and body and it’s constant cries for bed-rest. I fear that I would end up housebound recluse for eternity. Retiring from the outside world forever.
I lost my job in 2016 because of Fibromyalgia. I enjoyed my job and had worked there for 16 years, climbing the ladder as far as I could. This was one of the most difficult experiences of my life and became a very dark time for me. At the same time, my friends began to slowly distance themselves and drift away because I wasn’t getting better. You soon find out people only hang around for so long before they lose interest and become fed up. People don’t understand the magnitude of a chronic lifelong illness unless it’s something they have experienced. There’s an expectation for you to somehow miraculously recover and quickly. I was alone, I had no friends with Fibromyalgia or chronic illness and no family members with the condition either. There was nobody to understand or talk to.
I decided to seek out support and advice online and joined a few Fibromyalgia Facebook groups. There were no local support groups available for me to join or meet with so online groups were my only option. I then decided to start my own Facebook page “Orkney Fibromyalgia Sufferer.”
In the beginning, I did it for myself and it was a place for me to share my thoughts and feelings without my Facebook friends becoming bored or fed up with my constant sharing of Fibromyalgia-related content but what I really wanted was for them to understand what I was going through. So I started a blog called “Orkney Fibromyalgia Sufferer” and shared my entries and I received positive feedback from friends and strangers alike.
Writing helped me greatly – just getting my feelings out on paper made me feel lighter. It was like therapy to me and to find out it helped others too gave me a real sense of purpose at a time when I felt I had none. Whilst writing my blog I realised I was also passionate about others suffering from invisible conditions as I not only suffer from Fibromyalgia. I have Functional Neurological (FND) and Chronic Fatigue Syndrome (CFS) as well. So I created a Facebook Group called “Invisible Illnesses Orkney” and the group has grown slowly but I’m happy with that.
We are a close-knit group of people who share similar experiences and prejudices and it is a safe space for us all to communicate with each other without judgment. I’m particularly passionate about creating a support network in Orkney, not only for Fibromyalgia sufferers but for others with invisible illnesses too. We are a small island community with little access to services and there is nothing available specifically for Fibromyalgia. I have met so many wonderful people through the network I have created and it has cultivated in me a real need to continue building on that and become an advocate for Fibromyalgia and other invisible conditions in Orkney.
After a long period of writer’s block and Fibro fog, I have again begun to write. I have missed it so much. I found it extremely difficult in the beginning not being able to write. My means of catharsis was cruelly taken away. In the beginning, I was desperate to get it back. Many weeks and months passed and I learned to accept that I must wait patiently for the “spark” to return. Now that it has returned I am keen to hold onto it for as long as I can before the heavy, dark, fog again descends; rendering my cognitive function to nil.
I continue to support my small but mighty online community with members locally and all around the globe. I submit my written pieces to magazines, blogs and online newspapers. I write about life with chronic illness and island life living on the island of Orkney, Scotland. As well as volunteering for a Fibromyalgia charity covering social media two days a week, studying and my part-time job as an administrative assistant. I am also a mum to two boys, they keep me going. Without them, I fear things may have been worse. I won’t say that it has been easy bringing them up whilst so unwell. But they have given me a reason to get up and out of bed as much as I can. Some days I have no choice but to get up to look after them. They are both very understanding of my health problems and never complain when I am unable to perform my duties as a mother.