Multiple Sclerosis, my Journey

My journey with Multiple Sclerosis began while I was working in IT retail sales.
Life as a Retail Manager was tough.
I had to take care of my sales quota, the staff’s quota, and the shop’s quota.
Everything revolved around sales, selling, and profit.

Stress became my breakfast, lunch, and, most of the time, dinner—especially during month-end closing.

On November 4, 2007, I was admitted to Changi General Hospital due to a high fever and seizure.
After 14 days in CGH, I was discharged by Dr. Rajinder Singh.
The diagnosis: Meningoencephalitis.

Three months after my discharge, I was back at CGH due to significant weight loss and blurred vision.
This time, the diagnosis was Post-Meningoencephalitis.

Around November 2008, a year after my hospitalization, I began to feel numbness on the left side of my body.
Shoes and slippers would slip off my feet without me feeling it.
I couldn’t pass motion for more than five days, even with suppositories.
My weight dropped from 49 kilos to 42 kilos.
There was a tingling sensation behind my left ear, and my left hand and fingers were also numb.

I thought I had suffered a stroke, so I went to the A&E at Changi Hospital.
They gave me vitamins and fiber drinks to help with constipation and asked me to come back in December to see my neurologist.

On December 16, 2008, Dr. Singh advised me to go to Tan Tock Seng Hospital for further observation and testing.
Once again, I was hospitalized.

Many doctors came to run tests.
I lost count of how many times they poked needles into my hands until they couldn’t find good veins anymore.
I even called them “blood suckers” because they kept drawing blood from me.
They performed several lumbar punctures, which caused immense back pain.

The numbness didn’t go away, so I requested steroids—something Changi Hospital had previously given me.
A few hours after receiving the steroid drip, the numbness disappeared.

Two days before Christmas, I was discharged.
I thought everything would be okay, that I was fully recovered.

Then came March 16, 2009.
I still remember Dr. Kevin Tan’s face as he reviewed my medical results.
He asked if anyone was with me and whether I had family in Singapore.
Puzzled by his questions, I told him I was alone and heading to work after the review.

Then came the words I will never forget:
The diagnosis was clinically definite Multiple Sclerosis.

I was shocked—not just by the diagnosis, but when he said there is no cure for MS.

The first question I asked was,
"Is MS deadly? How many people die from MS every year, and how many survive?"

In my mind, it must have been some kind of cancer—something that could be treated.

Dr. Tan explained what Multiple Sclerosis is and discussed the cost of medication. That was when I truly broke down.
I didn’t cry in front of him. I told him I was okay.
The numbness in my body was gone, and I wanted to believe the diagnosis was wrong.

He told me it was okay to seek a second opinion, but he was confident the results would be the same.
He recommended Rebif or Copaxone, but I told him I would consider it.

I was just an ordinary Overseas Filipino Worker.
My salary was just enough to support my family back home and live modestly in Singapore.
An injection costing $2,000 a month was beyond my means.
I had no insurance. After my encephalitis diagnosis, no insurance company would accept me.

I told Dr. Tan I would return in two weeks to discuss medication—but I never did.

I told my family I had MS but downplayed it.
I told them MS was like diabetes—that I might lose my eyesight, the ability to walk, or even become bedridden.
My mother asked me to come home and see an herbal doctor. She believed I could be cured with herbal medicine.

I isolated myself from my friends.
I started reading everything I could about MS online.
After finishing the Dilantin and other medications from Tan Tock Seng, I never returned to Dr. Tan as I’d promised.

Nine years after being diagnosed, I’ve gone through three major stages:

• Denial

• Acceptance

• Coping

I was in denial for almost three years.
I kept telling myself the diagnosis was wrong—that this wasn’t MS.
But the more I tried to convince myself, the more fear consumed me.
Would I end up in a wheelchair?
Would I lose my mobility?
Would I become bedridden?

Depression took over.
I planned to end my life.

I feared that if my company’s HR found out about my condition, I’d be terminated.
If I kept it a secret and relapsed at work, how would I explain everything?
My father was already bedridden with his own illness.
I didn’t want to become another burden to my family.

I prepared boxes for my belongings, just in case.
I took a 10-day leave to settle everything.
I wrote my Last Will and Testament and submitted my CPF nomination to ensure my partner could collect and distribute my benefits to my children, as stated in my will.

One day, while crossing the road back to my rented flat, I saw a woman in a wheelchair selling tissue paper.
Despite her condition, she was trying to make a living.

I compared myself to her.

Why was I isolating myself?
I could still walk, run, and do things that many MS patients couldn’t.
Why was I planning to give up when there was still so much I could do?

After crossing the road, I called my friends and colleagues.
I asked them to join me for lunch and dinner.
I spent the remaining days of my leave reconnecting with people, watching movies, and biking in the park.

In 2013, I finally accepted my condition.
I resigned from IT retail sales and moved into the corporate world.
According to many articles, stress is the number one trigger for MS.
So I said goodbye to the sales floor and hello to office work—less stress, better environment.

I stayed busy with meaningful activities:

• I volunteered at SG Cares, gaining perspective on the value of life.

• I joined the SIMS Neighborhood Committee at Macpherson Community Center, interacting with elderly folks and participating in projects.

I no longer wanted to be alone.

When people asked why I volunteered despite my illness, I simply said:
"Because I want to live my life as a normal person while I still can."

Nothing is worse than going to bed early and waking up feeling more exhausted than before.
Weight gain became a norm, no matter how much I dieted.
Even drinking water seemed to make me gain weight.

Anything unusual that happens—I blame MS.
Everything feels connected to it.

I have truly accepted Multiple Sclerosis as my lifetime companion.
We will be together, until death do us part.

In 2015, while browsing online, I discovered MS Care Singapore.
I reached out via email, and they invited me to join their gatherings and activities.

I am so grateful to MS Care.
I met many MS patients like myself.
I learned how others cope with this illness.
I found a new family who understands exactly what I’m going through.

Sometimes, when I’m alone, anxiety creeps in.
I wonder what will happen next.
Will I become severely disabled?
When will my next relapse be?

Learning to live with the unpredictable nature of MS is a daily challenge—especially without someone to talk to.
Mood swings come and go.
When they do, I go out for a walk, window-shop, or simply step outside to clear my mind.
I avoid negativity as much as I can.
Strong bonds with family and friends are my anchor.

Whenever I feel down, I remind myself:

"I am Lovely.
And MS is nobody."

 

MS Awareness

Carlton Hotel Singapore

17 June 2017