Finding Grace When MG Changes Our Plans
The house is quiet past midnight, yet I’m fully awake as usual, thanks to my many health issues. Nighttime is when everything comes alive for me — chiefly my pain and other symptoms, but also my creativity and visions for the MG community, my plans for the next day, and the research I need to do for myself and others. Nighttime is when my needs and desires wrestle with what my body is screaming at me that I can do. I struggle against the divide between desire and ability.
Somehow, all of my big plans for the morning seem more attainable in the quiet hush of the night than they do once my alarms begin to sound off and I have to drag my exhausted, hurting body out of bed. Each night and the following day, this pattern repeats itself: What I need to do and what I long to do grapple with what my body will allow.
Like all of us, I never know what my day will be like, even after starting it, so I make a long list of alarms to go off all day at a carefully timed pace to allow for rest in between, to help keep myself focused and on task. On an average day, I set roughly 14 alarms for myself, not including for medications, all carefully labeled with corresponding tasks. On average, I tearfully turn off nearly three-quarters of my alarms every single day, postponing each until the next notification, again and again. I find myself frequently questioning my methods of madness, and why I almost consciously set myself up to “fail” against my own agendas.
Every day, we stare at the obligations that scream at us: the growing laundry piles, the messy house, the unpaid bills, the relationships that need tending, our bodies and spirits that need care. It is almost impossible not to grow despondent at what we cannot accomplish. But over the years, I’ve learned a very crucial thing that I try hard to remember, no matter how wretched my pain is in the wee hours of the morning or how weary and weak I am during the day. Instead of saying I cannot do something, whatever the reason may be, I try to reframe the situation by saying I cannot do something right now.
Reframing the situation isn’t a magical elixir for the disappointment and shame that accompany needing to miss out on special events or to cancel plans last-minute (again), or how I must now live in the moment knowing that schedules and intentions rarely consult with my body. It doesn’t take away the pain and frustration of a life I never asked for, one I am trying to make the best of each and every day. However, the perspective shift does offer a modicum of grace in the middle of the madness, a refreshment of spirit when health and responsibilities clash and collide.
We can do hard things, big and small, and we do them wondrously every day. But sometimes the hardest thing we can do is offer unconditional grace to ourselves: “Not right now, and that is more than OK.”
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I have MG for about 3 months now. I'm taking pyridostigmine bromide 60mg 3 times daily, prednisone 50mg 2 times & now will start mycophenolate (collcept) 250mg 1 time. should I cut back?