Chronic Fatigue Syndrome, Chronic Pain, Fibromyalgia, fibromyalgia warrior, Spoonie

I Suffer Deep Grief for the girl I was before Fibromyalgia, by Amy Bevan

Fibromyalgia warrior, Amy Bevan suffers from Fibromyalgia. Amy has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that Amy has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Amy by following her on Instagram.

I Suffer Deep Grief for the Girl I was before Fibromyalgia, by Amy Bevan
I Suffer Deep Grief for the Girl I was before Fibromyalgia, by Amy Bevan

️I used to be a girl who deep cleaned her house three times per week, and now cleaning a surface in my bedroom needs a ten minute sit down afterwards. I used to be a girl who worked hard at her academic studies, managed her own company, went to the gym several times a week, worked a part time retail job and maintained a good social life. I was ambitious, tenacious and driven. I am now the girl who has virtually no short term memory and consistent brain fog, walking is painful, EXISTING is painful, my social life is suffering and I can no longer work. I used to be a girl who lived away from home, had more than enough appetite for a family of four. Now I’m the girl who lives back home five stone lighter with minimal hunger cues, IBS and nausea. I’m a girl with uni debts and dreams, I could have never imagined this would be my life at twenty five years old.

I suffered from persistent tonsillitis for ongoing years as a child that did impact my education and attendance so these were removed when I was fourteen. But when everything changed for me was after a series of unfortunate events. In June 2017, I had a quad bike accident in Morocco. Grade 2 tear of my ACL ligament and a snapped hamstring in the left leg so I began physiotherapy. Not long after this in early September 2017, I was walking to a taxi and my ankle gave way and I shattered my 5th metatarsal in my right foot. This led to four months bed bound and a delayed union fracture that still showed slow healing a whole year later.

Following these accidents, I went back to university in the January of 2018, determined to catch up on all that I’d missed. But soon I was so sick and didn’t know why. I became bed bound so I had to move back home in April 2018. I honestly believed I was going to die. I was diagnosed with significant B12 Deficiency/Pernicious Anemia and began the loading doses right away (I now have injections every quarter for the rest of my life).

I saw some symptoms improve over time but the chronic pain, digestive issues, debilitating fatigue and variety of other symptoms did not seem to improve, only episodically and never entirely. I just thought my body needed time to recover so I was patient but I would often complain to my doctors that I did not feel better post injections, which they denied would be the cause. I kept trying to reassure myself that I was getting better even though deep down I knew something was still wrong.

I was working full time, trying to piece my life back together after a rocky couple of years, but I was in deep pain. Things took a turn for the worse, new symptoms appearing and pain/fatigue becoming debilitating, I was scared. I had my new job and I couldn’t afford to get sick but I was in so much pain I could no longer walk. Every inch of my body was in undeniable agony. I was convinced the doctors needed to urgently increase my B12 injections but they began suspecting something else. After all tests coming back healthy, my medical history of symptoms, numerous doctors appointments, I was diagnosed with Fibromyalgia Syndrome (FMS) in July 2019.

Although in some ways it was a relief to know what was wrong with me, the diagnosis of Fibromyalgia still couldn’t give me my life back. Poor medical understanding of this condition and not knowing ‘the cause’ of it creates complexity in its treatment. There is currently no cure for this condition. It is not uncommon or rare. There may be around 1.5-2 million people in the UK with fibromyalgia. It does not discriminate against gender (despite being 80% higher in women), men and women both can suffer with this debilitating condition. I am 25 years old and I have been told that I will know pain the rest of my life. Fibromyalgia does not discriminate against age.

My perfectionist personality suffocates deep inside the body of an old woman causing a deep grief for the girl I was before and the life she had ahead of her. Now I spend the majority of my existence in sheer pain, discomfort and debilitating exhaustion. In a flare up, the pain can be so unimaginable, pain relief won’t even touch the sides and your mind can desperately ponder to dark places in hope of escaping the torture of being stuck inside your own body.

Chronic pain tests even the strongest of people.

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