A day in the life of having MG while owning a business
How I manage to do what I can do during my daily routines
It happened again.
I received this comment, intended as a compliment, I think: “I don’t know how you do it.” It was made by a friend of mine who stopped by my business, The Nook, where I said I’d joined the board for a biathlon. I threw my name in to offer my website design and community outreach services.
I admit, I take on more than most. It may be my way of making up for the years where I couldn’t do anything while I was on the journey to getting diagnosed with myasthenia gravis (MG) and finding a treatment regimen that provided some sort of quality of life. It also might be to prove the haters wrong.
Whatever the subconscious reasoning is, the comment still haunts me. Why? Because in my mind, there’s still so much that I don’t — and can’t — do.
To better demonstrate the balance that allows me to “do it,” in my friend’s words, I thought I’d share what my days generally look like.
My typical day
I sleep until 9 or 10 a.m. I do my best to wake up without an alarm, but I do set one I call my “oh crap” warning; it goes off one hour before I’m scheduled to be at The Nook, a co-working space and technology center.
When I wake up, I take a fistful of pills that includes those specifically for treating MG: prednisone, Mestinon (pyridostigmine bromide), Imuran (azathioprine). I also take another half-dozen or so meds to treat other chronic conditions. After I take them, I put on the clothes I’ll be wearing for the day and carefully walk down the stairs.
After just waking, I’m still a little on the weaker side since the extended-release Mestinon I take before bed is wearing off. I step down the stair with my left foot, follow with my right to the same stair. There is no foot over foot or simply walking down the stairs first thing in the morning. Some days, I have to slide down them on my butt.
I get my coffee (which my husband has already made) and sit on the couch. I need a slow windup to my mornings to allow my body the time it needs for meds to kick in. Depending on the day, I need two to three hours to get going so I can have a great day; one to two hours will allow me to get through the day without too much struggle. If this timeline gets rushed, or I have to set an alarm for earlier than 10 a.m. for any reason, I find myself having to take more Mestinon throughout the day just to get by.
Once at The Nook, I look to see what’s on my agenda. I’ll schedule only one meeting a day, being mindful of how much talking I may have to do. I also don’t answer the phone. Many will say that’s bad business, but for me it’s a way to protect my health and save my voice for in-person interactions.
My business hours have changed and will be changing again to accommodate my needs. When this column is published, The Nook’s open hours are 11 a.m. until 5 p.m. Monday, Wednesday through Friday, and Sunday. Saturdays are my family day. Tuesdays are for my intravenous immunoglobulin (IVIG) infusions or other medical appointments.
When I’m done for the day, I go home, sit on the couch with my animals, and wait for supper. My food is cut up and served to me at the dining room table or while I’m on the couch. By 9 p.m. I’m usually in bed with evening meds taken. I typically don’t fall asleep until after midnight.
Did you notice what’s not on that list? Any sort of chore or household duty, including cooking, cleaning, and laundry.
It’s not easy, and I definitely don’t “do it all.” But I do what I can, while I can.
There’s a lot of give and take in my relationship with my husband. He encourages me to live my best life, which means living a life with purpose. I’ve found that purpose as a business owner.
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.
About the Author
Comments