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What are your Fields of Action?
In a remarkable article here Sarah Bendiff just recently invited us to work and write on MG. I was pleased to accept this invitation and started to write down my thoughts and experiences and keep track of them in a diary.
For this purpose I differentiated 5 corner points within my MG journey:
1.) Day Management – How do I come through the day and take care of my day to day tasks? Starts with getting up, personal hygiene and includes, shopping, cooking, cleaning etc. Ideally I can cope with it more and more independently, but ensuring and asking for proper help may also be seen as your achievement.
2.) Healthcare – Here I note symptoms of the day, keep track of weight, nutrition and the effectiveness of my medication.
3.) Physio / Exercise – After two years of MG I am still developing an adequate program to effictively train my weakened muscles. Exercising is a difficult undertaking. To find a skilled and empathic physiotherapist helped a lot.
4.) Social Security – This comprises all efforts to ensure my actual job and to take care of all required health and social insurance issues. There were times in which this was the most time consuming, desperating and exhausting field of action.
5.) Mental Health / Sozializing – One example: I have not been able to read a book since my MG diagnosis but I keep on trying. I lost focus and ability to concentrate. Additionally, I think mental health requires proper socializing. It took me two years to find a perspective to get out of social isolation and I am still struggling. Geting back to the book example, I just registered for a literature circle.
It may seem awkward to keep track of 5 different Fields of Action each day. Valid point. But I see it more like a compass rather than a duty. One day you may be too weak to exercise, so find another challenge or just just slow down and care for you. Finding out when your body needs a rest turned out to be a major challenge on my MG journey.
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1 Reply
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This is such a wonderful reflection following Sarah’s column. Thank you for sharing it. Breaking your MG journey into these five categories brings clarity and compassion to a complicated ordeal.
If you’re open to it, we’d love to share this with the MG news community through our social media channels. Your insight could really resonate with others navigating similar challenges.
If you’re interested, just add the link to this discussion or copy your post and upload it at the bottom of our consent form here: https://docs.google.com/forms/d/e/1FAIpQLSeJb9jnhFO_Y3_IEYHZ9fMmdBqdsAUT37GnG_4Ep3zfgpgIlQ/viewform -Jodi, Patient Advocate
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