How to live your life in spite of Myasthenia Gravis?
A story through the eyes of a patient (Infographic)
I know how it feels to be given an “almost-death” sentence. Yes, I know exactly what I said. I said it this way because that is exactly how it feels when you are given a diagnosis of a chronic illness without a known cure.
When I got my diagnosis, it came with an initial sigh of relief (because I finally knew everything I had been through was not just in my head) that only lasted briefly. It was then followed by depression for two years when reality hit me.
I have been asked so many times how I can smile in spite of my diagnosis and daily struggles? Where and how do I find the strength to keep on going without making my daily struggles obvious? Today, I would like to share my tips with you.
- Accept your new normal and Love yourself.
Myasthenia Gravis changes you. It changed me in more ways than I can admit or recount. I used to be very independent and extremely active; I also used to have a slim figure and could eat anything I wanted, but things changed after MG. I had to accept that I could no longer do everything by myself, I had to learn to depend on others and to accept help. I gained so much weight and lost my hair that I became unrecognizable even to myself, and for one, I had who I saw whenever I looked into the mirror.
I eventually had to learn to love myself (well, to love the new me).
- Pace yourself.
The symptoms of MG are worsened or triggered by stress (of any kind) and repeated activity. Does this mean you should literally not lift your finger to do anything? Naaa! It just means you pace yourself.
I am a “fitness” freak, or I used to be. I was (and still am) so particular about my weight so I used to love to exercise. I refused to let MG take that away from me, so instead of exercising for long periods of time like other “normal” (non-myasthenic) people, I would exercise for just 10 minutes, and only three times a week. However, during the bad days, I give myself a break and allow myself to enjoy the pleasures of staying in bed all day.
I remember a few years back, I had a really “good” day and I forgot about MG, so I went ahead to clean my whole apartment (3-bedroom) all by myself (from the windows, to the floors and to the bathroom and toilet). By the time I was done, I could not move, literally, for about 24 hours and I ended up with a flare that lasted for 2 weeks. I learnt my lesson that day because from then on, I never ever tried that again. Now, I clean my house in sections, with at least 3 days interval.
I read something a few weeks ago that best describes how I live my life – “Study your body like you are studying for an exam”.
It simply means, know your body and know the times of day when you have the most strength and plan your activities for then; and know the times of day when you are exhausted and plan a nap for that period.
- Dream a new dream!
I had big dreams while in medical school. I wanted to climb the career ladder to the highest point – residency and fellowship, but all that changed when the “tsunami called MG hit”. I was initially frustrated especially because it seemed like all my mates (and everyone else around me) seemed to be moving forward in their lives and careers, while I felt stuck. This plummeted my self-esteem so fast.
I eventually had to “dream a new dream”. I had to alter my dreams to fit my new life with MG. When it hit me that I could no longer work for any employer without issues arising because of my working hours, I had to do what was best (convenient) for me. I had to work from home. This helped me to focus on my passion – to inspire and help others like me.
Today, I am an author, a blogger and the Founder of the Living free to Live Foundation, which is dedicated to supporting people living with MG.
I like to think, or I choose to believe that even though I had big dreams, MG has helped me to have dreams that are even bigger than I could have ever imagined.
- Change your thinking!
When I got my diagnosis six years ago, I kept asking the same questions over and over again for the first two years – “Why me? What did I do to deserve this”? Then while crying one evening, feeling sorry for myself and asking my “trademark” questions, my husband’s words jolted me out of my self-pity. He said, “Why not you? Why should it be someone else? No amount of crying and questioning is going to take away the MG. Even if you have a short time left to live, why not live your life happily instead of being miserable with a long life”. I initially thought he was being harsh but it turns out he was right. My question then changed – “How can I live my life in spite of MG”?
When I changed my thinking, I was able to achieve more with my life.
- Surround yourself with Love
Your support system plays a major role in how you deal with the daily struggles associated with MG. Мy support system was and still is my family – my husband and kids, and my parents and siblings. I am also grateful for my friends. I have been blessed with a friend that I can call on, come rain or shine; all I need to do is pick up my phone and she comes running.
No one can walk this path alone. It gets exhausting along the way, and that’s when you need someone to hold you up and cheer you on when you feel like giving up. I think of these loved ones as my personal cheerleaders.
- Have Faith
It is said, “If you don’t believe in anything, you would fall for anything”.
I believe the most important factor that has played a major role in where I am today in spite of MG, is my faith in God. My philosophy/motto in life is this – “There is no me without God”! My faith in God gives me hope daily, and gives me the strength to keep on fighting, while we wait for a cure to be developed.
I know that MG has changed you in every way possible – physically, emotionally, mentally, psychologically and probably spiritually. It has also probably cost you your dreams, but why not try opening up yourself to new possibilities. Give yourself a chance, who knows, you might actually love where this journey takes you.
It’s also important to not focus too much on the destination, but to try to enjoy the journey as well!
Founder of LivingFreeToLive
Author of the book “Living With Myasthenia Gravis: Finding Hope in Life’s Challenging Crisis”
If you are interested in exploring innovative treatment options for your loved one, make sure you find out more about the ongoing research studies near you and how to access them.