May 12th is International Fibromyalgia Awareness Day
by Abigail Bubiak
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I don’t very often post about my chronic illness, and I try to keep my art social media presence mostly about my new paintings, but today (May 12th) is Fibromyalgia Awareness Day and I woke up in a pretty severe flare, so it seemed fitting to make a post today.
For those who may not know, Fibromyalgia is a chronic (long-term) illness that affects multiple systems in the body. The main symptom is widespread pain ranging from a burning ache to debilitating pain (some days it’s “ouch, that hurts,” other days I can barely walk). The pain can feel similar to osteoarthritis, bursitis, or tendinitis, but instead of being in one specific area, it can be throughout your whole body. Other symptoms include intense and often debilitating fatigue, trouble concentrating and remembering (known as “fibro fog”), TMJ, insomnia, nonrestorative sleep, depression, anxiety, irritable bowel syndrome, headaches and migraines, dry mouth, vision problems, nausea, dizziness, cold or flu-like symptoms, sore throat, sensitivity to light, heat and sound, numbness or tingling, balance issues, neuropathy and nerve issues, pain or dull ache in lower belly, bladder problems, trouble staying alert, chest pain, skin problems, breathing problems, and about a million other symptoms.
The combination of symptoms and their severity vary on a daily basis, and sometimes come in chunks of time as “flares”. For instance, some days I sleep for 12+ hours and still can barely get out of bed, and when I do, I have no energy, can barely walk, can’t concentrate, have level 7/8 pain, and might get a terrible migraine, while other days I get a lot of work accomplished and feel slightly more energetic (though usually the next few days following an “accomplished” day are bad flare days).
Scientists don’t yet know for certain what causes Fibromyalgia or even what it is, and there is of yet no known cure. Some of the current theories are: the brain and nerves may misinterpret or overreact to normal pain signals, due to a chemical imbalance in the brain or abnormality in the dorsal root ganglion affecting central pain sensitization; a rheumatic condition that causes soft tissue and myofascial pain; something gone awry with the central nervous system; a neurologic system issue; an autoimmune disorder. There are (luckily) many studies being done to determine what exactly it is and what’s going on, so new theories develop all the time (which means there’s still hope).
This year is unique because with so many people self-isolating in their homes due to the Coronavirus pandemic, a lot of now-housebound people are getting a glimpse into what many chronic illness-sufferers’ daily lives are like. And, even after a fairly short time of being forced to stay home, so many people are struggling and becoming very negative about how much their lives have changed, and how much they miss their “old lives”. I think this is a very unique and eye-opening opportunity for “normal” people to get to experience some of the ongoing challenges that people with Fibro face, as well as an opportunity to raise awareness about the struggles of chronic, invisible illness.
Once self-isolation is over, most people will return to normal, yet so many people struggling with chronic illnesses (like myself) will never get to go back to their old selves. I was officially diagnosed with Fibromyalgia in 2013, with a few years of suffering from symptoms before I was diagnosed. So you could say that my “self-isolation” started about 10 years ago. I was forced to give up a lot of things about my old life and my old self. There are many things that I will never again be able to do, and I have had to come to terms with that and modify my expectations, routines, activities and lifestyle. I had to create a housebound-oriented lifestyle for myself, including creating jobs and businesses that allow me to work from home (and I am so grateful that it has led to me following my dream of becoming an artist). I am extremely limited in what exercise and activities I can participate in, and sometimes, flare-ups of symptoms make it difficult to get out of the house to do things or see people.
Some people seem to think it must be “nice to get to stay home all day” – hopefully, this pandemic and self-isolation is showing people exactly how far from the truth that can be! However, unlike many, those of us with Fibro and other chronic conditions don’t get to “go back to normal” when this is over. I think it’s a wonderful opportunity to develop empathy and compassion for those who are struggling, to put things into perspective, and to remember to be GRATEFUL every single day for everything that you have, are able to do, and the life you are blessed to live!
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Abigail Bubiak
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