Today Will Be Different: Learning to make peace with Multiple Sclerosis

Multiple sclerosis is like an unwanted guest that takes up permanent residence in your body and refuses to leave. It’s like the little spot of dirt on the floor that refuses to go no matter how much you scrub it. Eventually, though, you live with it.

Written by Nikitha Phyllis | New Delhi | Updated: September 3, 2017 12:33 pm
Multiple sclerosis, Multiple sclerosis symptoms, Multiple sclerosis effects, Multiple sclerosis cure, what is Multiple sclerosis, health news, eye 2017, sunday eye It took my doctors over a year to confirm that I was indeed suffering from MS. I understand that they can’t make a hasty diagnosis, but the delay made me angry and frustrated.

I first heard about multiple sclerosis (MS) when I was binge-watching House MD a few years ago. It sounded painful and complicated, but it didn’t stand out much from the many grim-sounding conditions that people on the show suffered from. Six months ago, I was diagnosed with MS, a demyelinating disease that affects the nervous system. Simply put, the immune system destroys the myelin covering around healthy nerve cells, causing paralysis and vision loss, among other things.

It started with double vision. I woke up one day and saw two cats sitting at the window, when I only had one. You know how people hold up two fingers to check if a person is sober? When someone did that to me, I saw four.

As far as symptoms for a life-long condition like MS go, double vision is not the worst and it wasn’t too bad initially. I would tell my friends I could see two of them. But, soon, I found out how disorienting and scary it could be. Around the time I had my first attack, I was leaving town on a family vacation. I lost sight of my mother on a railway platform. For a few minutes, I panicked. Suddenly, the station was twice as crowded and I kept seeing a ghost-like, identical image of every person and object. Taking cabs back home after dark became nerve-wracking. Familiar roads were suddenly alien and I couldn’t read the signboards to figure out where I was. Crossing the road became another task.

Other problems cropped up. I’ve always had two left feet, but I found myself tripping over everything, even non-existent objects on the road. I lost my footing and tumbled down the stairs at work a few times. The worst part was the mood swings, the anger and the bouts of depression. I would lash out at my boyfriend or my mother over the smallest of issues or burst into tears. I felt like a pendulum, swinging back and forth, caught between a whirlwind of emotions. Each outburst left me physically and mentally drained. I began to sleep five hours or less — some mornings made me look more and more like an extra from The Walking Dead.

What I have is a condition called RRMS (relapsing-remitting multiple sclerosis) — a common version of the disease in which the symptoms flare up and then go into remission. Medication, super-expensive ones, keep the frequency of this relapse-remission cycle at bay. I’m stuck with it for life, because there is no cure.
The worst part of MS is how the symptoms show up out of the blue. That’s what happened to me. It was like my immune system was lying in wait, biding its time. I’ve heard stories about people who woke up one day to find their legs wouldn’t move. There are times when I wonder if I’ll become one of them, too — wake up one day and find I can’t walk anymore; if I’ll slowly lose parts of my body to this disease. I still can’t see properly from my left eye. Often, I panic over a small headache and every twinge of pain in my limbs. A slight blurring of vision has me Googling MS relapses.

When people ask me how I cope with it, I usually don’t have an answer. My first MRI report had pointed out that I might have this disease. As I ran around from one doctor to another, getting every possible test done, I had hoped fervently that the reports were wrong. But even if it wasn’t, I was ready to deal with it.
It took my doctors over a year to confirm that I was indeed suffering from MS. I understand that they can’t make a hasty diagnosis, but the delay made me angry and frustrated. I was also sick and tired of being told to wait and watch and run more tests.

Eventually, though, these moments passed. It helped that I stopped self-diagnosing every little ache and pain. I have since decided to go back to college and get my MA, go on a solo trip to the Valley of Flowers in Uttarakhand — both of which I put on hold the past year. Besides, I have my trusty support system — cat, boyfriend, friends and family. And, of course, humour helps. The phrase, “I’m losing my nerves,” has taken on a very literal meaning. Every time I tell my boyfriend that my brain refuses to work, he quips, “Of course, it won’t, there’s nothing in there.”

MS is like an unwanted guest that takes up permanent residence and refuses to leave. Oh, and it loves springing surprises — mostly the unpleasant kind, like your cat bringing you dead mice. Some days, you dread waking up to see what it’s left for you. You examine every part of your body and heave a sigh of relief that there are no surprises today. It’s like the little spot of dirt on the floor that refuses to go no matter how much you scrub it. Eventually, though, you live with it.

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