I'm a total nerd.
My fibro story starts eight years ago. It wasn't a climactic beginning; it was just achey low back pain that got worse the longer I sat writing my MA thesis.
It seemed like a common enough problem to have, except for the fact that I was 23. The nurse told me to take ibuprophen 24/7 and stretch. About a year later, I developed chronic pelvic pain (vulvodynia).
I diagnosed myself and had to return home from working abroad to pursue treatment. During that time, my body gradually began to fall apart, limb by limb.
My back pain worsened. My knee gave out. My shoulders become too painful to allow me to type. I thought I was losing my mind.
My doctor at the time told me all she could do was suggest Robaxacet. At this point I was starting my PhD. The physical demands of reading and writing began to take its toll, exacerbating my pain.
My fiancé (now husband) had to drive four hours every weekend from Toronto to Ottawa to help me with weekly chores (groceries, cleaning, etc.) that I could no longer do.
In retrospect, I think the stress of the program and my fear about not being able to meet expectations, as well as not being able to understand what was happening to me, pushed my body past the point of not return. After that I developed more of the classic fibromyalgia symptoms, like insomnia, fatigue and digestive problems.
I was fortunate to have been referred to a pain clinic for the pelvic pain, with suspected endometriosis causing internal pain and vulvodynia causing external pain. This meant I was able to see a pain specialist for my musculoskeletal pain within the first year. In March 2012 he diagnosed me with fibromyalgia.
I was so relieved after my diagnosis that my symptoms had been validated — and given better medication than NSAIDs. But I still hadn't absorbed yet what this would mean for my future.
After my diagnosis, it became obvious that even with treatment, no amount of accommodations would allow me to continue. I had tried everything I could think of so I could stay — withdrawn from my TA position, put in place disability accommodations to allow me to submit work late, and bought expensive adaptive devices and voice recognition software.
Feeling like my life was spinning out of control, I started having panic attacks on campus. When the spring term ended, I went back home to move in with my fiancé, and decided to withdraw from the PhD program. I spent the next year in a state of shock. I was always someone whose identity was wrapped up in my work. I didn’t know who I was anymore.
I'm a total nerd.
In the summer of 2015 I felt well enough to finally plan my (fibro-friendly) wedding. On a beautiful August day I married the man I’d fallen madly in love with eight years earlier and who has been my saving grace through this whole journey.
He didn't blink when it came to assuming caregiving responsibilities — he does the housework, the laundry and the dishes on top of his full-time job. He always understands when we have to change plans or just stay at home. Most of all he is so supportive.
He celebrates the small accomplishments of my life without ever making me feel 'less than.' I am also lucky to have the support of my close friends and family. I also have to mention the amazing online #spoonie community on Twitter and the blogosphere who are very supportive and inspiring women and men.
Gradually I started trying to put the pieces of my life back together. In 2013 I started to blog. In 2014 I started a part-time distance program for social work and completed the first year. But it wasn't to be.
I got a cold over the 2015 holidays and suffered the worst fatigue and brain fog I’d ever known. At the time I was just starting to look for a social work practicum placement. There was no way I could commit to working 15 hours a week out of my home, so for the second time I had to withdraw from school.
This time, however, I didn't panic. I spent that winter using the time to learn new things. I taught myself calligraphy, I read, and I wrote more often on my blog.
Since the spring, my energy has begun to slowly improve. I've found a kind of peace in accepting that whatever I do next, it needs to allow me to work with my body and not against it. I think that's why blogging and writing has 'clicked' more for me now than when I first started.
Being at home allows me to respond to each day as it is. I'm fortunate to be able to stay at home. I sleep in late because without 10 hours I am a brain-fogged zombie. I can't type because of shoulder pain but I can use speech recognition software.
I stretch, do gentle exercise, walk, and make sure I move around during the day. I balance my activities with self-care, which is how I am able live more fully, even with fibromyalgia.
I'm a total nerd. I love taking free online courses, like on Coursera. I've become a TV junkie and love Netflix. I think lots of shows today are better than movies.
Because reading is hard for me, I listen to audiobooks. All I read are mysteries, even though I always say I'm going to read literary type books. My husband's cat Lily has turned me into a total cat person. She is the perfect companion for my slow paced days at home.
Everyone has their own journey through chronic illness, so trust your instincts and not the 'experts.' Cultivate your own sources of happiness and satisfaction, instead of what the outside world validates (work, success, income, etc.).
My motto is something I read — "It's not the life you imagined, but it's a good life nonetheless." Take an integrative approach to your treatment, trying mainstream medical and alternative therapies. Most importantly, practice self-care like it's your full-time job — because it is now.
It's not the life you imagined, but it's a good life nonetheless.
I'm proud of how I've grown through all of the challenges of chronic illness. Learning mindfulness meditation and focusing on the present has given me a more helpful perspective.
I'm a happier person when I remember to 'stop and smell the roses.' I feel like I’ve become more patient, more adaptable, more assertive and more accepting than I was before fibromyalgia.
I'm proud of learning calligraphy on my own and of expressing my creativity. That wasn't something I ever made time for in the past! I'm also proud of my blog and my writing. I've been able to work on finding my writing voice outside of dry academia, which has been gratifying.
I'm proud of making it through every day, especially on the tough days where no amount of self-care stops your symptoms, and you just have to hold on to the knowledge that it will pass. Everyone living with chronic illness should be proud of the strength they have developed to manage daily life.
I am an ePatient blogger, freelance writer and health advocate. Five years ago, I was diagnosed with fibromyalgia.
On my health journey, I have learned about the power of self-care skills to improve my health and wellbeing. On my blog, I write about learning to be skillfully well, even while living with a chronic condition.
I live in Toronto, Canada with my husband and our cat Lily. I love learning, reading, being outside, Netflix, calligraphy and coffee!
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