Jun 19, 2017

Multiple Sclerosis, my Journey



My Multiple Sclerosis journey began when I was working in IT Retails Sales.
Life as a Retail Manager is tough.
I need to take care of my sales quota, the staffs quota and the shop quota.
Everything revolves around Sales, Selling and Profit.


Stress becomes my breakfast, lunch and most of the time, dinner.
Especially when it's month end closing.


November 4 2007, I was admitted at Changi General Hospital due to high fever and seizure.
After 14 days in CGH, I was released by Dr Rajinder Singh,
diagnosis is Meningo Encephalitis.


3 months after my discharge in the hospital, I was back again in CGH due to weight loss and blurred vision.
This time, diagnosis is Post Meningo Encephalitis.


It was around November 2008, a year after my Post Meningo Encephalitis hospitalization, when I felt numbness on my left body.
Shoes and slippers go off from my feet without feeling it. 
I can't pass motion for more than 5 days, even I use suppository.
My weight dropped from 49kilos to 42 kilos.
There is tingling sensation behind my left ear, my left hand and fingers are also numbed.


I thought I had a stroked, so I went to A&E at Changi Hospital.
They just give me vitamins and fiber drink to help my constipation and
asked me to come back on December to see my Neurologist.


It was December 16 2008 when Dr Singh advised me to go Tan Tock Seng Hospital to undergo further observation and test.


Again, I was Hospitalized.


There were many Doctors who come and do the tests.
I can't remember how many needles they have poked to my left and right hands
until they can no longer find better spot for my veins.
Don't know how many times I called them blood suckers
coz they always draw blood from me.
Few times they perform Lumbar Puncture that caused me so much pain at my back.


Numbness never goes off so I requested them to give me steroids.
That is what Changi Hospital give me when I had Meningo Encephalitis.
After few hours of getting a drip with steroids, numbness was gone.


2 days before Christmas, I was released.
I thought everything will be okay.
That I fully recovered well.


March 16, 2009.
I remember clearly the face of Dr Kelvin Tan, sitting in front of his desk while looking at my record and medical result from his desktop,
First, he asked who is with me, is there any family member who accompanied me.
I replied him that I am alone, that I'm going to work after the medical review.
Then he asked me if my family is here in Singapore.
I was wondering, why this doctor asks me questions like this.
So I answered him that I'm living alone here with my friends.


Later on he told me that the diagnosis is clinically definite Multiple Sclerosis.


I was shocked, not because of the news he just told me, but when he said that currently there is no cure for MS.


First question I asked him:
is MS deadly?
How many people dies with MS every year and how many survived?


In my mind, this must be some kind of cancer that can be treated.


When he explained to me what Multiple Sclerosis ism, and discussed how much is the cost of the medicine, that was the time I really broke down.


I didn't cry in front of Dr Tan, I told him that I am okay.
There is no more numbness in my left body.


I want to tell Dr Tan that his diagnosis is wrong.


He said it's ok to get second opinion, but he is sure that the result will be the same.


He recommended me to take Rebif or Copaxone, but I told him I will consider.


I am just an ordinary Overseas Filipino Worker, my pay is just enough for me to send back home to my family for their expenses and left with some amount for me to live here in Singapore.
$2000 a month for the injection is way too much for me.
I have no insurance, after I was diagnosed with Meningo Encephalitis,
no insurance company accept my application.


I told Dr. Kelvin Tan that I will come back again to discuss the medication after 2 weeks,
which I didn't do.


I told my family back home that I have MS.
I don't want them to worry about me so I explained to them that MS is like diabetes.
That I may lose eyesight, unable to walk or worst, become bedridden.
My mother asked me to go back home to see herb doctor, she thinks that my illness can be cured by drinking herbal medicine.


I isolated myself from my friends.
I started reading about Multiple Sclerosis and searching internet about this illness.
After I finished all the Dilantin and other medicines that were given to me from Tan Tock Seng, I didn't visit Dr. Tan at NNI clinic as I promised him.


9 years after diagnosed with Multiple Sclerosis, I have gone 3 stages in Life.


Denial
Acceptance
and Coping up.


I was in denial stage for almost 3 years.
I always tell myself that the diagnosis is wrong, that this is not MS.
But the more I console myself, the more I became scared.
That one day I may end up in a wheelchair, that I may lose grip and can't walk again.
That I will be bedridden.


Depression came to me.


I planned to end my life.


I was so worried that once HR in the company learned about my illness,
they will terminate me.
That if I will not disclose to them, what if I had a relapse at work,
how will I explain everything?
My dad is currently bedridden with his sickness also,
what will happen if I go back home with this illness?
I will be another burden to my family.


I prepared carton boxes to put all my belongings, in case I commit suicide, at least my things are kept and ready to be shipped back to Philippines.
I applied for 10 days leave, I wanted to prepare and settle all the things I will leave behind.


I write my Last Will and Testament so that in case I am gone,
my family knows what to do with my remains and estate.
I submitted a CPF nomination at the Central Provident Fund office to make sure that whatever happens to me, my partner will have the right to collect my CPF from the Government and he will hand it to my children as what is written in my Will.


I was crossing the road going back to my rented flat
when I saw a woman in a wheelchair selling tissue paper.
Despite of her condition, she is trying to make a living.


Suddenly I compare myself to the auntie.


Why do I need to isolate myself to the world?
I am still strong.
Can walk,
can run,
can do things that other MS patients are not able to.
Why am I planning to end my life just because there is no cure yet for MS
Why did I allow myself to fall into Depression.


Why am I such a coward to face the truth and fight my illness?
 
 After crossing the road, I get my phone and started calling my friends and colleagues.
Asked them to join me for lunch and dinner. I spent the remaining 6 days of my leave with friends, going out together, watching movies and go biking at the parks.


In 2013, I managed to accept my condition.
That was the time when I resigned from IT retails Sales and moved to Corporate World.
According to the articles I read in the internet,
stress is the number one factor that triggers MS.
So I say goodbye to sales and say hello to office work.
Less stress, better working environment.


I kept myself busy with other activities.
I volunteer at SG Cares, which helped me see how valuable life is.
I became a member at SIMS Neighborhood Committee at Macpherson Community Center, mingled with old folks and joined their projects. Suddenly I don't want to be alone.
Whenever they asks me why I volunteer despite my condition, I just tell them that I want to live my life as a normal person while I am still able to.


Nothing is worse than getting in bed early to wake up still feeling exhausted and very tired.
Feeling like I don't want to get up from bed, until I get used to it.
Gaining weight becomes normal. Even I go on diet, the weighing scale never stops the number from going up, that even drinking water also make me fat.


Anything unusual happening to me, I just tell myself that it's because of MS.
Everything has to do with MS.


I have truly accepted Multiple Sclerosis as my Life time buddy.
That we will be together, till death we will part.


In 2015, while browsing about Multiple Sclerosis in the internet, I found out that there is a group called MS Care in Singapore. I contacted them via email and soon, they replied and invited me to join their get together and activity.


I am very thankful to MS Care, I met a lot of MS patients like me.
Learned more about how they coping with our illness.
With MS Care, I found a new family who understands what I am going through with Multiple Sclerosis.


Sometimes when I am alone, I tend to feel anxious
because I don't know what will happen next.
Will I be severely disabled like my other MS patients colleague
or thinking when will be my next relapse.


Learning how to live with the unpredictable ups and downs of MS is really a challenge,
especially when no one is around to talk.
Sometimes mood swing is also unpredictable, I often go out and walk.
Go window shopping or just simply going out of the house to see other things to help relax my mind.
I am trying to avoid negative cycle, as much as possible no stress.
Maintaining strong bonds with my family and friends also is a great help to me.


Whenever I feel down, I will remind myself:


I am Lovely and MS is nobody.

 


MS Awareness
Carlton Hotel Singapore
17 June 2017
 

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