Living with Fibromyalgia

It was sometime in my late 20s when I first noticed it – I couldn’t understand what I was reading. Funnily enough, I was a science writer and a student in a molecular biology lab – I was into cell signaling and proteomics. Ha! Reading scientific manuscripts was an everyday job. One that I actually enjoyed. Until I didn’t. I thought maybe I am tired. Maybe it is stress. Depression perhaps?

Alongside this, began the forgetful episodes. Everyone with me remembers an incident I was part of, but I don’t. There was a lot of teasing. Simple calculations became difficult. Reading a string of instructions got next to impossible. I couldn’t articulate simple thoughts. Conversations got difficult. Like, how do you tell someone in the midst of a chat that you don’t understand what they are saying. And then, of course, there was crying. Lots. For absolutely no good reason. Mentally, I was screwed up.

Physically, I was not much better. It became difficult to hold almost anything; anything, like my mobile. Walking needed support. Getting up was impossible without someone to help me. There were a host of physiological changes too ­– bowel, bladder, ears, eyes… there were issues with almost every system. There was insomnia and prickling pain in my muscles. I would walk around with 2­–3 jackets layered while others wore light sleeveless tops…

I met multiple doctors. They ran a series of tests (one even suspected Acromegaly!). Some idiots told me I was imagining things. But I wasn’t. Or was I? I wasn’t sure. I cried a bit more.

I knew I couldn’t work in science any longer. I couldn’t survive in a lab. I stopped writing science. I took up an editorial job that involved designing content and managing social media pages. That was easier. Not easy-peasy easier. No. It was just easier than lab work and science writing.

I learnt the basics of digital illustration and design by trial and error and with help from YouTube. I switched careers. From full-fledged science I was now into the creative end of it ­– mostly design and illustration works that did not require my cognitive senses. And I was managing.

Until it got worse. I couldn’t walk. At all. I needed extreme support with every step. I met more doctors. Lots of them. Then, one good one directed me to a rheumatologist. I was finally diagnosed. I had Fibromyalgia.

I read about it. Apparently, my host of mental conditions were termed collectively as Fibro-fog and included dyslexia, dyscalculi, dysphasia… The list included all my symptoms. I freaked out. The doc said it isn’t bad. He prescribed drugs and referred me to a psychiatrist. I hopped into a cab right away. The psychiatrist prescribed more drugs.

Within two days I was normal, or rather as ‘normal’ as I could be. Most extreme symptoms had cleared. I could read, but not as before. I could write, but with difficulty. I was better, but I had changed.

There are still times I cannot comprehend normal conversations and it’s difficult to articulate my thoughts. I got temperature sensitivity – I actually scream in pain, I got pins-and-needles sensations across all my skeletal muscles, depression, disorientation, memory loss, muscle tremors, dyslexia – I mostly cannot understand what I am reading, I cannot add two 2-digit numbers in my head (FYI: I was the student of the year in grade 12). Then there is fatigue, mood swings, sensitivity to loud noises or bright lights. These and more are part of my everyday life, even with all my meds. And if I accidently skip my meds – let’s not go there.

I guess I am stuck with the meds for life. Ditto with all my alleviated symptoms. Has this affected my life choices? Yes. But I live with it. For instance, I still work in the field of science. I hope I never have to leave the field, just that now I am more into design and illustration than writing. I do write, but rarely.

Having a family that understands helps. Having an employer that understands is a blessing. Having a doc that doesn’t trivialize what’s happening to you and prescribes drugs to make you feel human again is a gift. Not giving up and shifting life gears to suit my health status – now that’s my lemonade.