Jhumur Nandi, 58 did not take the unexplained symptoms of Guillain-Barré Syndrome (GBS) seriously. Fortunately, her family rushed her to the right hospital and the right doctors in time. She also worked hard on her rehabilitation program to get well as soon as possible.
The golden time for seeking treatment for any illness is right now. As early as possible. There is no need to hide your ailments, neglect your health, in fear of not finishing chores or making others worry.
How it began
We live in Howrah Sankhrail, about 21 km from central Kolkata. I have always been very fit, i loved sports. I joined NCC in my college years and when I left it six years later, I could fire a gun and was of the senior officer grade.
Our house is large and has a big garden. We have pet birds and cats. So, from 6 in the morning to 11 at night, I have plenty to do. I still make time for things l love like music, art and craft. I also love getting together with friends
My husband Sudip Nandi (who is an artist) and I have our birthdays in December, so the month is always special with guests and my children coming over.
On 31st December 2023, I remember waking up with numbness in both my hands and a tingling in my legs. But I put it down to cervical spondylosis which often affects my neck and shoulders. So, I sat massaging my hands for a longtime before getting up. When I finally left the bed however i found that both my legs felt strange too. I had to hold onto the walls to get to the washroom.
By the time l came out and climbed up some stairs to the puja room my legs were worse. They felt weak and light, I had trouble moving around. But it was my husband's birthday and my best friend from college was coming over, so I got busy with the cooking and things. In general, we women tend to neglect our health issues and try to work in spite of them.
But when we were having tea, I noticed that whenever I drank tea or water it wasn't going down but flowing out of my nose instead. I found that quite strange but didn't tell anyone. I also kept bumping into things because my legs were wobbly. But it didn't occur to me that this could be serious.
Suffering Alone
A while later my friend called saying she was waiting at Champatala bus stand with her daughter. She was asking for directions. That bus stand is very close by, and we often go there. So, as I would normally do, l just walked outdoors. That was when I noticed l couldn't see very well. I thought it was because I had forgotten to take my umbrella, and the sun was in my eyes, or my specs were unclean. So, I walked on bumping against walls. At the bus stand I simply couldn't see my friend. But she spotted me and came forward. Soon we were walking along linking arms and chatting like college days. By then I had realized that something was very wrong with me and kept a tight hold of her hand.
We got home and because I love people, fun and laughter I ceased to worry. I didn't tell anyone; afraid it would spoil the cheerful atmosphere.
I told my husband my hands were feeling numb, and he rubbed my hands, but it didn't help.
In the evening, we were all sitting together and everyone was in woollies except me. My friend asked if I wasn't cold, and I said no my ears are very hot. My son, Partha, checked my blood pressure. It was a lot higher than normal. When we were going to bed, I discovered that I was finding it difficult to talk. It even seemed a bit nasal.
The next morning, I got up at 6 am made breakfast and packed my husband's tiffin. He left for office and my friend, and her daughter went home too. Again, I went with them to the bus stand and while returning alone I realized that there was a haze over my eyes, I couldn't see the traffic and was terrified. While crossing a field on the way I found my legs were refusing to take orders.
Somehow, I managed to get home.
Sharing with Family
Once home I asked my son to check my blood pressure it was higher than the previous evening. He kept checking each hour and my pressure kept mounting. It was the first of January 2024, and no doctor was available in our locality.
But my symptoms were getting worse. My son saw that I couldn't drink water and went and got a nasal drop thinking it was a congestion of some sort.
That night when my daughter Sayani called, she couldn't understand anything I said. She asked me why I was talking gibberish in a nasal tone. So, my son told her it had grown like that since the evening.
On 2nd January, I was feeling so ill that both my son and husband decided to stay home. My pressure kept on rising, and I was glad just to lie back and rest.
When I got up, I couldn't even stand or see anything clearly. My daughter did a video call from office she was very upset. It's possible that my face had already begun to contort. Then my son-in-law Pavel also called me, he realized there was something seriously wrong with me. So, Pavel spoke to a doctor friend who works at a hospital near Deshopriyo Park.
Pavel convinced him to take a look at me at once. We hired a car to get there. But before that I decided to finish cooking some fish, I had ready, have my bath and complete my puja because I realized I wouldn't be home soon. My son was both angry and miserable to see me leaning on walls and nearly crawling around to finish my chores. But I am stubborn.
Race Against Time
When Partha sat me down to eat., I realized my whole right side was paralyzed. The muscles of my face weren't functioning and i couldn't eat anything. He washed and dressed me and when the car came Partha had to almost carry me to it because i couldn't walk at all. It is just a two-minute distance from our door to the road but now it seemed like ages.
In the car nobody could understand what I was saying they gave me a pen and paper, but I couldn't even scribble anything clearly. I also noticed that things seen with my right eye seemed ten times larger than those seen with my left eye. When we reached the hospital, the doctor examined me and contacted someone at the Institute of Neuroscience Kolkata (INK). He told us to immediately get me admitted to the INK emergency because my illness was probably neurological.
My family took me to the AJC Bose address and after a whole lot of tests they admitted me to the INK ICCU. That was when I learnt that I had this extremely rare disease called Guillain Barre’ Syndrome. It was suspected that I had the Miller Fisher variant of GBS
In the ICCU they checked my sugar, did ECG and started me on IVIG, a course of an antibody solution immunoglobulin injected intravenously. There were other supporting medicines, but IVIG was the main drug. I asked the doctors why I had this disease, I hadn't gone anywhere or eaten out in the past few months. The doctors told me not to worry all I had to do was to co-operate with them and be patient and they would send me home in no time. INK thankfully always keeps a ready stock of immunoglobulin.
Fighting Back
I had IV channels (catheters) in both my hands. I was fed supplements and water through the Ryles tube.
A physiotherapist used to come every day to work on my limbs which I couldn't use at all. The physiotherapist used to move my hands and legs make me sit up and exercise my whole body including my facial muscles and tongue. Slowly I was able to stand up holding on to a walker and sit in a wheelchair too. It was very very difficult. But I had faith in God and everyone at the hospital encouraged me. They said very few people get better so soon. So, I wasn't depressed.
I remained five days in the ICCU then was shifted to the general bed. I was released on 10th January.
When I came home a 24-hour nurse came with me as I still couldn't do anything on my own.
The Ryles tube remained till my first checkup on 17th January. My face had twisted in such a way that both my lips didn't meet. So, the nurse used to feed me mashed food for a very long time. I could only have biscuits dipped in tea or milk. GBS had attacked my throat making it difficult to swallow. There was the possibility of choking on particles.
My right eye had become fixed. I couldn't move or close it so when I slept only one of my eyes was closed, the other one they used to cover with a cloth.
There were a lot of restrictions regarding my eyes. I was forbidden to strain them. I couldn't even cry which was difficult because my father died in February and my mother who is also old hadn't been told how I was. So, she used to call, and I used to turn on the speaker cover my eyes and talk. I couldn't look at the mobile screen for three and half months, i couldn't read books either. I was warned against going into the kitchen or lighting fires of any kind because I still had double vision. My sight became near normal after four months.
My voice had recovered partially while in hospital, but I spoke very slowly and softly. It took a lot of effort, and my throat kept parching, making me cough. So, my family kept avoiding me initially to prevent me from trying to talk.
My arms and legs didn't twist but they were numb and very weak.
I wasn't given any medicines for this, but I was asked to exercise at least for seven hours each day. The physiotherapist came some days to check on me and give me new exercises. A walker and a wheelchair were bought for me. The nurse used to hold me at all times, so I didn't fall.
Progress was slower than I had hoped. I got disheartened at times.
I had faith in God and knew I would get well again. But it was so hard to do things I never even had to think about. I used to do so much work all day and now I couldn't help anyone. Initially my daughter used to travel back and forth from her home to cook for us. Then a cook was hired and a housekeeper of sorts. My son Partha used to hold me and help me walk. Then I kept trying by myself. I stumbled, lost my balance but kept at it. It took three and half months for me to stand and another three to walk freely on my own.
Victory
I willed myself to get well as soon as possible.
My doctors are happy with my progress. During my checkup they did an MRI, chest x-ray and some blood tests and said all was okay. I already had a history of issues like spondylitis, diabetes and narcolepsy. These remained of course, and my limbs are still a little weak, but my GBS has been defeated.
I asked the doctor if I could have it again and he said that so far, he has not seen a relapse. But I have to continue doing the exercises
The doctors also advised I seek psychiatric help. They said that physical stress can cause tremendous mental trauma. So, it is best that after a major health crisis people see a psychiatrist. I consulted one too and it has been helping me a lot.
To everyone reading this I want to say that if you feel numbness in any part of your body don't ignore it or self-medicate. Consult a neurologist and get treated. Also please exercise regularly.
As told to Sebanti Sarkar
