My secret book of survival in life with myasthenia gravis
A columnist highlights three areas of comfort that are key to getting by
Written by |
Some days I feel like a vampire, constantly seeking fresh energy to nourish myself and keep going. From my small experience with other people living with illness, I have learned that each of us has a secret book of survival. The following is mine, to help me confront life with myasthenia gravis (MG).
Comfort from food: I think I am one of the most gourmand girls in the world. This word describes someone who truly loves food — and not just eating, but savoring it in a romantic, emotional way.
The first thing that ever helped me during MG flares was my father bringing me chocolate at the hospital or stopping at a nice restaurant on the way home. Food made me happy. It helped me feel less stressed about what was happening to my body and less afraid of what was coming next. It made me feel cared for and spoiled in the best sense of the word. For a brief moment, MG seemed to calm down and sit quietly next to me, enjoying the meal with me.
Comforting the body: After nourishing myself in a very literal way, I slowly discovered the power of touch and self-care. Regular massages have helped me reconnect with my body and focus, even briefly, on what is happening inside me rather than fighting it.
Living with chronic pain all day can make me forget how much it affects me. I sometimes find myself angry at the world, without realizing that this anger comes from constant suffering and nonstop pain management. Physical therapy pulls me back into awareness. It forces me to acknowledge my pain, my limits, and my emotions, and from there, I can start again with a clearer mind.
Yoga and gentle stretching have the same effect. They feel like a quiet hug for my MG, offering me a pause, a moment of softness in a body that is often tense and guarded.
Comforting the soul: More than caring for my body, caring for my mind and spirit is essential to my survival. Losing parts of your passions, your job, your style, or your social life is never a real choice. It is something imposed by illness. My role is to reclaim as much control as I can and protect what remains of my inner world.
I do this through mindful meditation, short dancing breaks, writing, crying, and talking — talking about everything, not only about illness. Sometimes I find it deeply unfair that I even have to create a guide on how to comfort myself, but this is the reality I live with.
I remind myself often that even if I am usually motivated and cheerful, it’s OK to be sad sometimes. Sadness does not mean failure. It means I am human.
I would also like to thank everyone who helps me get through this struggle by acknowledging my pain, mental distress, and endless emotional needs. Feeling seen makes the weight lighter.
I hope these simple comforts can help someone else feel a little less heavy while carrying the weight of illness.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
Leave a comment
Fill in the required fields to post. Your email address will not be published.