Fibromyalgia – Wading Through Mud
I was asked by my sister-in-law to write about my journey with a little understood, debilitating and often misdiagnosed condition. Honestly, it’s taken me weeks to put pen to paper, not least because there is so much I could tell you that I find it difficult to know where to begin! It really makes me anxious to think about how my life has changed over the past six years too. My concentration is poor, my short term memory is shocking – meaning that thoughts I may have evaporated into the ether very quickly and often remain outside of my grasp, which is in itself exhausting and frustrating, to say the least! However, I’m still here living life, and here is the first part of my story.
My name is Bev, I am 54 years old, live in a small rural market town in Lincolnshire, England, and I have Fibromyalgia, coupled with Osteoarthritis. Fibromyalgia is a canny little blighter as it’s often invisible to others but can manifest itself in many ways. My main symptoms are severe, widespread pain, chronic fatigue, cognitive dysfunction and memory problems (“fibro fog”), sleep problems and irritable bowel syndrome – but there are many more that affect me to varying degrees. Like many people with fibromyalgia, I can look much better than I feel – and the condition is often described as an invisible illness for this reason. Because you don’t look ill, or there is no obvious cause for the symptoms, people may not believe that you are as ill as you say you are – and this disbelief can come from work colleagues, medical professionals, family and friends, as well as from complete strangers. On a good day, I’ve become adept at hiding it from others, (particularly my family). I mean, who wants to be around someone who is constantly whinging and moaning about how you feel, right? But woe betide you do too much, put additional stress on your body or feel stressed for other reasons. Fibromyalgia will pay you back eventually, and may keep you in bed, unable to leave the house for several days or weeks resulting in what is commonly called a “flare-up”. The simplest of tasks can become overwhelming, such as making yourself a meal or washing the dishes and climbing the stairs is like climbing a mountain!
It’s difficult to know when my fibromyalgia began really. In my late teens, I was diagnosed with epilepsy. I was already living on my own in a city 35 miles from my hometown and was loving life as a chef in a large hotel. Moving back home was difficult as I valued my independence (and still do by the way). Once I was on the right medication, I began to recognise triggers so that I could manage to have a full and active life. I was lucky, I was able to just got on with it, got married, had two wonderful children and worked full-time. No way would I let epilepsy define who I was, in fact, many of my friends were unaware. However as time passed I began to experience sporadic periods of fatigue, depression, an aching body and no-one who knows me would ever describe me as a morning person! I always put these symptoms down to the medication though. However about eleven years ago, a couple of years after my divorce, I decided the medication was impinging on my general health too much. The depression was becoming more frequent; I experienced anxiety and bouts of anaemia, leaving me exhausted. I decided enough was enough and rightly or wrongly weaned myself off the medication. That was around 2008.
They say that Fibromyalgia can be brought on by stress or a virus. Fast track to 2014/15 and a series of events happened which changed my life. My son had been experiencing serious mental health problems which came to a head that year, as he tried to commit suicide on several occasions and had to go into a rehabilitation facility at the other side of the country 200miles away: my daughter ran from the tension it caused in our family to work in Egypt. I got her home after she was duly hospitalised after being mugged, my 21-year-old niece died after having a major epileptic seizure, my partner left, my dog and cat died. I had also started a degree course at university and a new job, bad timing or what?!!!
I think I lived that time in a sort of anaesthetised state. I became a machine, my moto being – just get your head down and get on with it. To some degree, I think I used both work and my studies to get me through it all. Again the sporadic periods of pain and fatigue crept up on me. I thought it inevitable considering what had happened and at last towards the end of 2015 and the beginning of 2016, things began to settle down for my children which made me feel better too of course. My daughter had reunited with her boyfriend and bought their first little house as she was expecting my granddaughter (they’re now happily married with two children), and my son was back home and in a relationship with his bride to be.
All was well until March 2016. I now worked with my son in law’s mum. When we first met in 2014 she struck me as being this gregarious and kind lady full of life and fun. We became friends but it soon became apparent that she too had mental health issues. I tried to help, I nagged her to let me take her to the doctor. Her behaviour reminded me so much of my son’s but she took her own life that March. As a consequence, my son in law came to live with me for a while as the house they were purchasing was being renovated. His brother, who now had nowhere to live came too. There were five adults sharing my little two bedroomed house – all grieving. It affected everybody for different reasons of course, but as my maternal instincts to them, all grew stronger, my heart became heavier and my body became weaker. By the Autumn of 2016, I contracted a winter virus. If you’ve ever had the flu, you know how it feels, you ache all over, your head feels like it’s full of cotton wool and you’re so full of fatigue you can barely get out of bed to go to the bathroom. It’s like gravity is pressing down on you, making you feel heavy and weak. That feeling has never left me – It’s like wading through mud.
Don’t despair Fibromyalgia sufferers, I do realise that my experiences don’t make for positive reading, but I’m still here alive and kicking! Oh yes, indeed I am!! I’m well aware that many people experience much worse than me, but I was asked to share my story such as it is. What’s happened in the last three years to getting a diagnosis is another story.
Watch this space for part 2 – The Diagnosis