My story: Coming to terms with Multiple Sclerosis

My story: Coming to terms with Multiple Sclerosis

“By the way Doctor, I seem to get tired very often and I can’t seem to do anything when I feel so, also I seem to drag my feet a bit when I go for a walk & have developed a drunken kind of walk”. ‘Oops, looks like I am in trouble ‘– I thought when I saw a look of concern on my doctor’s face after having said this. 

I had visited my physician early Sept.2013 with complaints of persistent cold which seems to get worse once I am done with the course of meds for it. I casually added the above complaints too. What followed after that turned my life upside down!

My physician asked me to lie down, tested the strength of my legs. Then she held my left big toe and asked me to close my eyes and answer in which direction she was moving the toe. Correct answers. Left side done. Right side- I waited... She asked “Viraja, which side am I moving your toe?” I said “First move it na , then I will know’”.  She said I have done it twice already! Oh Oh, I didn’t feel the touch at all! She immediately sent me to the neurologist in the same hospital. He asked me a few questions, noted it down and then asked me to get an MRI of my brain and spine done. Since the hospital was equipped with this facility too, I got the MRI done that day itself.

The next day, my son collected the reports, came home and read it stating that there are multiple lesions in my brain and they have asked for further tests if need be. Google told us that it may be related to an autoimmune disorder and the remedy was to change the eating habits, exercise etc. So, we are all pretty cool about it thinking it isn’t anything serious. I got the neuro’s appointment 3 days later. I went alone and happily sat before him with the reports. Checking each MRI sheet minutely, he wrote his notes, looked at me and said “you need to get yourself admitted to the hospital. I need a few more tests to confirm what I suspect”. “And what is that, I asked. 

‘You may have ‘MULTIPLE SCLEROSIS’! And what is that, I repeated. He then drew a neuron on the prescription page and explained what it is.  I did not understand that well then, got admitted, had a series of blood tests and the excruciating ‘Lumbar puncture’ done – where they insert a needle into your spine and extract spinal liquid!  MS or Multiple Sclerosis was confirmed after the LP results came through. I was on steroids for a month, then started the introduction to taking the terribly expensive injection by myself! 

 It’s been more than 7 years since the diagnosis and a relapse in 2017, but even now while holding the pen injection over my leg area, the familiar battle of ‘Now’ & ‘No’ starts in my head!  One injection every fortnight, the battle in my head continues to rage on.’ What’s the Big Deal’, you may ask, thousands of diabetics may have to take it every day! But to a person who has this feeling of fear, resentment and thoughts of what will happen the next day, the battle will rage on! Side effects of the injection are - nausea, fatigue, flu like symptoms, shivers, waves of heat from head to toe, burning sensation throughout the body, loss of hair, drying of skin, rashes, to name a few.

My woes did not end with the diagnosis, rather it was just the beginning of many things to come. The pain, stiffness in limbs, hyper sensitive to heat, extreme fatigue. 

Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system).

In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibres and causes communication pro

blems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves. As of now it has no cure! 

When your doctor tells you that you have a disease which has NO CURE, and that the disease may progress to the extent that you may be bedridden, how will you react? 

I chose to RESPOND!  It wasn’t easy then, it isn't any easier now! I accepted all my emotions of fear, resentment, anxiety, anger, frustration, and faced it. Dealt with it.  Still deal with it.  I choose a thought that makes me happy, I choose that I will not focus on things I can’t do but on what I can do or did better than before. I can walk for a couple of minutes with the help of my beautiful accessory – my walking stick! On my better days, I read, help heal other’s emotional issues, and motivate them through my counselling sessions.  I express GRATITUDE the moment I open my eyes in the morning- I am alive, I can see, I can hear- and oh I can stand and walk a couple of steps. GRATITUDE   when I go to bed at night- I survived! It may have been a disastrous day- but I lived through it! For people with MS everyday is different. There are about 2 lakh people living with MS in India.

MS is also known as the INVISIBLE DISEASE’ as there is no visible disability. Yet, some of us are physically challenged. People with MS have different symptoms too. We thrive, we celebrate each day for we don’t know what tomorrow will bring. And yes, all alternative therapy/ medicines tried too. It may work for some in being able to manage some of their symptoms. 

I am grateful to the wonderful support system that I have- my family, friends, doctors who go out of their way to care and guide me.  Without them I would not have gathered the pieces that I broke into and made myself whole again!

Thank you for taking the time to read My Story. It is nothing unusual but I hope it sends a message across that ‘If you think you can, you surely will’!

- Viraja Maganti


P.S. Viraja is a Peer at SoulUp. If you are on a similar journey and would like to have a conversation with Viraja, you can book a 1-on-1 online conversation with her here.

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