Life with Myasthenia Gravis Has Taught Me to Find Joy in the Little Things

Life with Myasthenia Gravis Has Taught Me to Find Joy in the Little Things

Many things change when the symptoms of myasthenia gravis (MG) start piling onto each other. I become physically weaker, mentally slower, and spiritually drained. I must spend my energy wisely, which means that sometimes I have to give up doing something fun so that I can do an everyday task, such as washing the dishes.

Most people would be distraught by this idea, but for someone living with constant physical limitations, something as simple as washing the dishes is a massive victory. When my MG was completely uncontrolled, I didn’t do much other than sleep my days away and take prednisone tablets in the few hours I was awake. Things like taking a daily shower, brushing my hair, or even changing my clothes were difficult. I have been deprived of my basic self-care activities for long enough to never underestimate the power of the little things. The things we take for granted are the things we miss most.

Although my life may seem less thrilling than most of my peers’, I know I don’t need materialistic things to be truly happy — I just need to be capable of independently doing something as simple as brushing my hair. That is fulfilling enough for me. I have learned to find joy in the smaller things that we tend to take for granted when we are healthy.

I don’t know many people older than 25 who would be proud of cooking themselves dinner. I never have the energy to cook at the end of the day. I cannot stand on my feet that long, I struggle to peel vegetables with my weak hands, and the heat from cooking doesn’t go well with my MG.

Of course, I have found ways around these problems to survive everyday life, such as buying peeled vegetables, asking for help from my partner, or eating ready-made meals on my bad days. However, when I am occasionally able to help in the kitchen and cook my own dinner with enough remaining energy to actually eat and enjoy the meal, I feel such overwhelming satisfaction that compares to no other feeling.

Life with MG has taught me that I do not need an excess of things in my life to be happy. I only need quality moments to hold on to when the times get tough. I have learned to acknowledge the power in accomplishing little things with or without help. I try to always remember that every little bit helps, no matter how small.

Life is beautiful. Never stop fighting.

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I’m a 24 year old from sunny South Africa. I’ve been dying with a twist since 2013 when I was first diagnosed with myasthenia gravis. I can speak four languages and I’m a lover of life and all things wild.
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I’m a 24 year old from sunny South Africa. I’ve been dying with a twist since 2013 when I was first diagnosed with myasthenia gravis. I can speak four languages and I’m a lover of life and all things wild.

3 comments

  1. Rita Kajtar says:

    Hi!

    Your stories are an inspiration. Thank you for sharing them with all of us!
    I was diagnosed with MG 4.5 years ago when I was only slightly older than you are now. I had hundreds of ups and downs, I threw myself into a PhD along the way in a region above the Arctic Circle with freezing temperatures for most of the year and for almost 4 years I struggled to get the right treatment so that eventually I could return above the floating line. It drained me physically, but mostly mentally.
    I was lucky and life paid back fully last year when finally I was admitted to a hospital with a top-notch staff and professional care. Following a thymectomy, my condition improved significantly in a couple of weeks and now, after less than a year, I am symptom-free, I started going to the gym again a few months ago and I am gradually decreasing my Mestinon. I am under treatment with Rituximab (Mabthera), which I received twice already.

    What treatment are you on more exactly? Isn’t there anything that could make your state improve? I can only be hopeful that there is a solution for everybody in a way or another.
    Stay strong and never cease digging for more medical help.

    With hope,
    Rita

    • MEC says:

      Hi,
      ive heard that the MG caused by the musk-antibodies are harder to control, maybe thats why her case is more difficult. If my researches are correct, a thymectomy then has basically no chance of any success. I guess your MG is triggered by the achr-antibodies?

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