My obsession with butterflies started over a decade ago when my life gradually began to change. My friends know me as Queen Butterfly Shakelia and whilst most may know that the butterfly is my favorite animal, they do not know its significance in my life.
At the age of 18, I began experiencing episodes of severe shocking pain radiating down my legs to my feet, and pulsating pain in my hands. The types of pain I felt were never consistent leaving a few doctors to believe that this was inflammation. The medication prescribed did not relieve my symptoms and after multiple doctor visits, they believed that I had rheumatoid arthritis however I never developed any other signs so that put me back to square one.
I remember going to see a General Practitioner who was concerned about the sensation in my legs. She took a needle and did a gentle prick test only to realize that I could only feel the needle near my ankles. She was immediately alarmed and mentioned that my threshold for pain was high and recommended me to a pain specialist. The pain specialist evaluated my reflexes, repeated the prick test, and confirmed that indeed I had a high pain tolerance. He then touched the trigger points in my back and the pain I felt made me curl up so bad. That was the first day of getting a cocktail of ten injections in my trigger point areas. At that moment, he knew that I had fibromyalgia and mentioned that I should read more about it… and I did.
A life of chronic pain was not for the faint of heart. The major thing I disliked in the initial stages of my diagnosis was having to be officially evaluated by a psychiatrist to rule out any psychiatric causes of pain (making sure that I wasn’t making this up in my head) and thoughts of self-harm. This was mind-opening because I could not imagine why someone would think that I wanted to harm myself. Maybe it was my Christian upbringing or my generally positive outlook on life but then it dawned on me that not everyone can mentally process the fact that the pain would not heal or ever go away. Fibromyalgia can only be managed, not cured – and that requires a sound mind and the will to fight every day.
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“Fibromyalgia is often considered as a silent disability, but I don’t look at it that way because if you allow yourself to think of it like that, you will never challenge yourself to live a normal life.”
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It is difficult to know what fibromyalgia feels like from the outside looking in. I constantly had to explain my diagnosis to others. A touch as light and gentle as a butterfly’s can cause excruciating pain in fibromyalgia patients due to the heightened sensitivity to pressure and pain yet my symptoms were commonly perceived as a sign of weakness and laziness. Twelve years later, people still do not understand my condition and this is difficult (especially when it’s your own family). “Shakelia, you always want to lie down!” “Are you sure you are sick?” “You’re just lazy, not tired.” These comments/questions I hear all the time but what’s even worse is the pity I would often receive from those who genuinely care.
I’ve learned to be patient when people do not understand what I go through daily. Although my condition started with constant pain, as I got older, I discovered many more disease symptoms. Insomnia was a struggle to deal with. Sometimes I would go for days without sleeping and most times I needed a sleep aid to finally get somewhat quality rest. The headaches were annoying and lasted up to 3 weeks on end. These worsened with exposure to light and noise and I was unable to cognitively function on some days. I would have to call in sick from work but luckily, I had an amazing supervisor and coworkers who understood the severity of my condition. Brain fog also quickly became a challenge and I often felt embarrassed asking people to repeat what they said to me or asked me to do. I usually have episodes of heat intolerance which was not helpful at all during the pandemic (temperature checks) since it triggered a fever warning almost every single time. Recently, I developed irritable bowel syndrome… and the list goes on.
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“It is more than just a pain disorder and there are no warning signs to tell you that you are about to develop a new symptom .”
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Whenever I am tempted to think that things keep going downhill, I remember how much I have overcome since my diagnosis. Something as normal as a menstrual period would land me in the Emergency room every single month. Even with spotting, my pain was almost unbearable.
So how do I manage? With the help of my gynecologist, my menstrual cycles are managed with oral contraceptives. I go to the pain specialist for injections every 3 months despite my fear of needles, getting up to 22 shots in my trigger points. These last anywhere between one month to six weeks before the effects begin to wear off. I take multiple oral medications to control my other symptoms. I also wear compression socks to help with the poor circulation in my legs.
Finding a support system was of utmost importance to me. There is no dedicated community for fibromyalgia patients on my island, Barbados so I joined one in Canada where I can communicate via Facebook to learn recent developments about the disease and what other survivors are experiencing. I am grateful for this forum where I can share my concerns freely without being judged or the need to feel validated. I can’t describe how much this has helped me to develop a positive outlook on my life.
If you are a butterfly warrior like me and are having a hard time navigating this journey, remember that this disease does not define who you are. Do not be ashamed to admit when you are not feeling your best. Find a support system – sometimes this may not be your own family or friends. Do not let comments from the public wear you down. Reach out for help and talk to someone to help shape your perspective on how you can still live a fulfilling life with this disease.
