I have MG, but MG can’t have me!!
It was quite a normal day at school, same as it had been for the past 11 years, except that as I called out to my friend to pass the Chemistry record all that came out of my mouth was a blur and vaguely sounding word. I tried again, this time concentrating with all my focus on the word Chemistry and looking straight at my friend. She couldn’t understand a word and stood there wondering what was I trying to say. I went over the word again in my mind. Chemistry, I know how it is pronounced. Chemistry, it’s not so hard to utter. Let me try again, Chemistry. Each time it came out a little slurred, dragged out, like a baby calling out new words. I did not want to draw attention towards what happened, and I quickly went on about doing other things, all the while trying to pronounce the word in my mind. Later, before the end of the class, I tried again and thankfully I didn’t fail. I was able to say Chemistry and speak, as usual, relieving me of the initial panic I felt at the beginning of the class. Little did I know then that this was the beginning of something that had no end and I had to live with it all my life!
Over the next few weeks, my condition worsened as I grew more fatigued with normal bike riding to school, experienced difficulty in asking questions in my classes, throat started to feel clogged in the morning and brushing itself felt like a herculean task. I couldn’t ignore them anymore and visited an ENT with my father. For the next few months, we visited multiple ENT doctors and physicians in Udaipur, as each doctor diagnosed my condition differently and prescribed different medicines. But my speech didn’t improve and I grew weaker by each passing day. My family was at loss to understand my plight and continued to refer me to different ENT doctors. Finally, in June 2009, one of the doctors referred me to a Neurologist who confirmed that I was suffering from generalized Myasthenia Gravis (MG).
On hindsight, I do feel lucky now to have been diagnosed with MG at its early stage. Being mere 17 years of age then, I was really devastated to know that I had one of the rarest diseases and specifically after I learned what it could do (or not let me do) to my body. Over the next two months, I was prescribed Wysolone (Prednisone, a type of oral steroids) and Mestinon (Pyridostigmine) and other medicines to help stabilize my condition. My Neurologist also advised me to get thymectomy (surgical removal of my thymus glands) in order to reduce the impact of MG and in a hope of remission (symptoms disappear completely), but only after my condition stabilized.
One might call it lack of awareness about the disease or just carefree attitude of a teenager, but I didn’t fully understand the role of these medicines in my life at that time. After taking the medicines regularly for a few months, I discontinued them after we saw improvement in my health. I felt as normal as before MG and was eager to live life to the fullest. During my 1st Semester of Engineering, excitedly I signed up for most of the activities for Freshers Day event at my college. Days were completely packed with physical and mental work and suddenly my symptoms started to show up again. Things got worse in a short period of time and to my utter dismay, I had to back out from all the cultural activities I had signed up for participation.
My condition was poor, and I felt completely weak. My family feared the earlier diagnosis was wrong and did not want to take any further chances. I was taken to a better hospital (with better neuro-medical facilities) in Ahmedabad, where the doctors confirmed my MG condition. I was put on higher doses of MG medication and advised complete rest until I stabilized. After medication for two more months we went in for thymectomy, and slowly over the next few months, the medicines were tapered down to lower doses. I lived a steady life free of steroids for one and a half years which was followed by three years of remission. More recently after my marriage, the symptoms showed up again and I have been on medicines and managing to live my life with MG.
There have been multiple episodes of symptoms coming in my way of living my life fully but I have not given up on my life. Simple things get complicated at times, like getting up from the bed in the morning, opening office door, riding a two-wheeler. I do get frustrated when I miss out on some of the really important things in life like not able to speak to clients during a presentation for which I worked for long hours. But I have learned to look at the brighter side of life, a caring and very strong life partner, loving family and understanding in-laws, supportive colleagues, and friends. While I always watch my back wondering if MG is going to take me by surprise, I continue to keep my life as normal as possible. I take care of my household chores, office work, take long walks, go trekking and try out new adventures every now and then.
Now after nine years of living life with MG, I don’t let MG take control of my life. I am Chitra, and this is my story living with MG, what’s yours?
Thoughts I would like to share with other patients and their family
- Continue to take your medicines as per dosage suggested by your doctor and do not stop your medicines without consulting your doctor
- Be mentally prepared to support your body, even if there had been no symptoms for a while
Be optimistic, its Ok to live with certain limitations. Listen to your body, don’t push yourself into doing something that your body is not yet ready for
- Share how you feel, acknowledge your limitations and get support to be yourself. Educate people around you about MG, you will get the support you need
- Conquer MG with your attitude. Don’t let it rule you. Believe that “I have MG, but MG can’t have me”
- Help each other, www.mghelpinghands.org (Myasthenia Gravis Support group India) is a great place where I met people with the same circumstances as mine, made me feel less anxious and alone, I feel included and strong in the community
Abhishek, Chitra’s husband says “I came to know about her MG conditions a few months after our marriage when it triggered after 3 years of remission. She was completely shattered. Initially, it was not easy for me to understand her situation as it is a rarely known disease. She educated me, I too researched, and got to know more about the symptoms, treatments and the support she needs. I started helping her more in her daily tasks. I support her in maintaining a healthy lifestyle and help her follow her diet and routines.
She is fun and adventurous, but MG imposes certain limitations on her. But she is also a fighter and won’t allow MG to stop her leading an adventure-filled life. Her attitude towards life in general and the way she deals with her MG condition is awesome”.
Ranveer, Chitra’s brother says “Being truthful, initially, I was the one who made her life more miserable with this condition, teasing and pranking about it, like any true brother!! But I was stunned when she went for thymectomy and understood that her conditions and started taking her symptoms seriously.
While there have been lots of negatives from MG, I would like to talk about the positive impact it had on her, changing her into a better human being. Before the operation, she was studious, a bookworm with a weird personality. But soon she realized life is too short and just studying hard will not help her living it with full throttle. This gave her the inner strength to live life fully, enjoying all its pleasures, despite having to live with MG.
Yes, she does struggle with it sometimes. But the God who gave her the problem also gave her the strength and aptitude to handle it. We have all been with her through her MG journey and will support her in the future too. She is a tigress and I tell positive things to her daily. She likes hearing this and keeps her to keep her motivated!”
Geetika, Chitra’s friend says “I have known Chitra for years, first as my roommate and without even realizing we became the best of friends sharing our life together. She is a jovial and fun-loving person, anyone will fall in love with her attitude and zeal to life. It was hard to believe when she first explained her condition and educated me about MG. Despite the condition, she handles herself so well. She is always happy, bubbly, full of life, laughing away her problems and inspiring us to live life fully. She is a true energy bomb and my lady love!”