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How Do I Tell You?

How do I explain the frustration of a flat tire? That moment just before, when you feel in your heart that it’s going to happen. Some fucking bullshit, designed specifically to ruin you. The pop, the loudest fucking thing, your ears and and your brain in shambles. The first bump, sending tidal waves crashing through my back. And each one that follows, in my legs and arms and the edges of my being.

How do I explain this to you? How do I explain why I must care, why I cannot stop caring about this. How despite it not being the end of the world, it’s the end of a journey and the new one will invariably be different? How do I say that even if I sound pompous or hysterical, it is merely a drop from the ocean raging inside of me? Guess I’ll just patch it up and move along instead.

-Divij Kulkarni

I had been taking my meds for a year when the pain got unbearable and I decided to see a physiotherapist. It was definitely helping and the my pain had reduced considerably. The reason for August and September’s 2020 flare up was job hunting. I was torn between waiting for a translation job during a period when most companies were having cutbacks during the pandemic or taking up a 9 hour a day BPO job to make fast money. My privilege made me feel extremely guilty but most of my friends who’ve had a bad job asked me to wait it out. There was definitely that one loud, annoying voice that insisted I take up the job because “MONEY” but after seeing such a bad flare up I took the advice of most and decided it best to wait it out. Having the added pressure of not liking my 6days/week job to my fibromyalgia? It just didn’t seem sustainable. Coming back to my physio, it was going really well until he said “fibromyalgia is too vague, what you need is muscle strengthening which will solve all your problems. You’re “too young” to have all this. You should stop taking your medication, Cheer up.” A quick reminder that I was on these meds at the counsel of a psychiatrist and a rheumatologist but I wanted it to be true so bad. I wanted the pain to be all in my head and so I stopped the meds. Lo and behold, the pain came back. HAH! Who would’ve thunk ? Followed by the anger for this misleading advice. It took me a lot to be able to explain to my mother why I didn’t want to go back to this doctor. His dismissal of this condition, unsolicited advice regarding my meds and worst of all the CHEER UP. Ugh What did I do? I restarted my meds. I went back to my regular routine of ups and downs with flare ups and also with my mood. Exercise routines were put back in place. Life continues.

I think the original thoughts for the prose Divij wrote were much too dark to share on here, so here is one of the snippets from 2020. I have written more recently as well and will continue sharing these in no particular order because time is not real and the flare up and good days come equally unannounced.

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