I woke up one morning and my leg didn’t work. I stood up then fell over.
I was 14 years old and I couldn’t stand up by myself. My leg didn’t hurt. It just wouldn’t bear my weight. I was living with my father at the time and had to call my mother to come and collect me. We spent the morning at the hospital . In between the x-rays and blood tests, I got to have a conversation with an utterly bemused police officer who was trying to interview some teenagers who had been in a car accident. Trying to convince him he was in the wrong room helped pass the time at least.
In the end, I was told I had had the flu and that the virus had attacked the liquid in my hip socket resulting in the bones grinding against each other causing permanent damage. I don’t remember having the flu, just a runny nose, however the blood tests showed influenza so influenza it was. I only stayed on crutches a few days. I should have stayed on them for a few months to let my hip heal, but when you’re the class victim of bullying an imaginary disease doesn’t exactly improve your street cred.
Whether or not this is when I developed fibromyalgia is open to debate. Some medical professionals say yes and others say no emphatically, my favourite doctor takes a “who the fuck knows” approach to it. I did remain asymptomatic for about a decade after. When I got sick, my body took longer than others to heal – a frequent indicator of fibromyalgia – something that did not make me popular with teachers. And, Mr Stewart, I do still remember you insinuating I was faking illness to the rest of the kids in the class. That really helped with the bullying issue.
I was relatively healthy though. I had my first daughter when I was 19 and managed to get honours in two undergraduate degrees and a masters degree as a single parent. It wasn’t until I moved to Edinburgh to do a PhD that the symptoms got worse. My right leg collapsed again and I struggled to walk. I was sent to a neurologist and an arthritis specialist. For over a year, I was treated as though I had arthritis and used crutches or a cane to walk. This is the exact opposite of the treatment recommended for fibromyalgia. I gained weight because I couldn’t walk. I failed my PhD because I couldn’t work: I was exhausted all the time and I started losing words.
Then I got pregnant. Pregnancy and fibromyalgia are not the best of buddies. My asthma resulted in hospitalisation. I had constant nausea and migraines. These culminated in post-natal depression which went undiagnosed for years. My baby was not a sleeper making the exhaustion and depression a whirlwind of hideousness. I was so sick for so many years that I have lost huge chunks of time.
On the positive side, I haven’t had real trouble with my right hip for years. I can predict the weather depending on how stiff it is but I can walk. My body has compensated in other areas: migraines at the base of my neck, excruciating pain in my left shoulder, pain in my right arm and elbow, migraines in my right eye. I also have fibro fog, aphasia, anxiety, depression, inability to control my body temperature, and sleep deprivation. Fibro fog effects my short-term memory, my language skills (hence the typos), and ability to communicate. I have huge pauses in my sentences and sometimes I forget what I was actually trying to say.
These are the medications I’m on for good days:
- Vitamin D
- iron fortified water supplement
- soluble aspirin
On the bad days nothing works.
I’ve had fibromyalgia since I was 14 years old. I lived most of my life with a disease that no one understands the causes of or how to treat it successfully – never mind cure it. I live everyday with exhaustion, anxiety, depression, and extreme physical pain.
And, I’m one of the luckier women diagnosed with fibromyalgia. Most women have it much worse than I do.
This is my lovely friend Cath’s experience of fibro. I also wrote about feminist mothering whilst living with fibromyalgia.