Getting to Know….Me

Hi! My name’s Jen. I’m a friend, wife, mother….and I also have Fibromyalgia. Not that long ago, that would have been one of the first things I would have told people about myself. A mere three years ago, my life was consumed by Fibromyalgia and the support I needed to try and improve my symptoms and quality of life. When I started to think about creating this blog, I wondered why I wanted to do it. Why dredge up so many painful memories from the last five and a half years and publicly share them with you all? Was it a need to feel like I was still relevant; that I was achieving something greater after being away from my career for so many years? As a means of catharsis to finally express all the fear, frustration and sadness that this condition has brought me? I think ultimately, it was just something that I instinctively HAD to do. Before I was personally diagnosed with Fibro, I had never even heard of it. Or known anyone who had it. When I was well enough, I started to try and educate others around me about the condition-through Facebook posts, open dialogue and to support friends close to me that had a possible and actual diagnosis. My lack of awareness of Fibro before diagnosis I feel is a broader reflection about how little society knows and understands about chronic pain conditions. By discussing it in a very organic and open way, I would hope that I could remove some of the stigma that sufferers regularly face. To provide insight for their friends and family into what a journey with chronic pain looks like and foster empathy for their struggles. If I achieve even some of that through this blog, well, then I will have achieved more than I had hoped to.

So, now that you know why I’m here, you’re probably wondering what’s my story? Let me tell you, my whole story of Fibromyalgia to date is waaaaay too long to fit into one post. I want you to know who I was before diagnosis first. I guess you could say that I was a middle-class girl from the ‘Burbs, well educated and used to being fairly high-achieving, at least academically. After completing two Bachelor’s Degrees (seriously, the first one was a bit of a waste of time….how many people really know what they want to be when they’re 18 years old and fresh out of school?!), I went into social work. I enjoyed the social justice aspect of it and wanted to get the best possible outcomes for my clients. I think I drove some of my co-worker’s crazy at times with my stubborn attention to detail and the desire to “get things right” that sits so incongruously with the actual notion of social work itself. But I was good at my job. After seven years in that field though, I started to search for something that suited me even better. The time that followed was (briefly) when I felt the most settled and excited for my future to come. I had only recent married my boyfriend of 7 years and was studying a Master of Policy and Social Research. The course was tough, but again, I was achieving good grades and felt like I had finally found my “people.” We had also moved out of our unit and bought an actual house in a difficult market for a young couple. It was an exciting time. When I became pregnant with my daughter, I initially had dreams of having one of those “Fit” pregnancies as I was finally in the best place I had ever been physically. I had never been an overly robust child or adult. 5’4 and 43 kilograms, I had always struggled with my weight. Overall, I would have said my health was fair but with no major issues until after the birth of my now, Miss Five.

You know those stories about those fabulous earth mothers who rave about what a beautiful and joyful experience their pregnancy and birth were? That was not me. Suffering from morning sickness throughout most of my pregnancy, I had trouble making it from the vomit bucket in my car to classes, so I decided to defer until six months to a year after she was born. There were some real moments of joy – she was an active bub and I was lucky enough to feel her swimming around in my tummy like a little dugong (as we referred to her) from as early as sixteen weeks. I was also so thrilled to be having a little girl. So, I bided my time until her arrival, knowing the discomfort was only temporary with an incredible outcome at the end of it. The birth….for the purpose of keeping this post brief, I’ll say it was less than ideal. Forty hours from the time my water’s broke, my little miss arrived via emergency c-section, safe and well. I found the after-effects of the c-section extremely disconcerting. Some of those who have had c-sections will understand. I was exhausted and emotional at not being able to freely get up and tend to my baby. And then there was the pain that endured around the c-section scar. I was reassured that this was normal and expected after the surgery and would disappear with time. Five days later we arrived home and that’s when my Fibro journey really started. As I was weaned down off my opioids given to me after the surgery, the pain across my abdomen intensified. It was unlike any pain I had experienced before-a burning feeling that deepened when anything, like clothing, came in contact with it. Those first weeks and months became a living nightmare and trying to explore that in this post alone would not do them justice. The pain in the abdomen soon spread to the arms, shoulders and upper legs. At one point, the only place I didn’t experience pain was on my head. What should have been a beautiful time to bond with my new little lady, was a time of pain and fear and even her little head resting on my arm to feed, caused me pain. The intensity of my symptoms accelerated quicky and within weeks of her birth, I was readmitted to hospital for further investigation and pain management. It was not my only admission to come and the journey from then till now has been a rocky and frustrating one.

Has this journey been all doom and gloom? No, not necessarily. I can confidently say I am a stronger person for having gone through what I have. I have been fortunate though, to have had great support from family and friends and lucky overall in the care of the health professionals I have chosen. But financially and emotionally (and without a doubt, physically) chronic pain conditions take their toll. From accounts I have read on Fibromyalgia forums, I am dismayed at the lack of understanding and empathy that forum members have encountered from both health professionals and friends/family alike. That needs to change. The trauma that “Fibromites” experience from their condition alone is great enough, without the judgement or lack of awareness of those around them. Each individual pain journey is different, but what we have in common is the need to be understood and supported. And isn’t that something we all should have?

Thanks for reading. Feel free to leave comments below, remembering to keep it kind and respectful. If you have something you would like to discuss in future, let me know! Catch you on the next post.

Xx Jen – The Girl on Fire

jenthegirlonfire

Hi! I’m Jen the Girl on Fire. Diagnosed with fibromyalgia in 2016, I started this blog as a way to raise awareness about fibro, share helpful tips and tricks and to allow others around me a space to contribute and share their own experiences with this condition. I am a mum, a wife, a singing and dancing enthusiast and fibro blogger, working hard to achieve new dreams despite a chronic condition.