A Recent Medication Lapse Has Refocused My Attention on Self-care

On a recent day, I popped out to the shops to pick up a few items when I realized I had left my Mestinon (pyridostigmine) medication at home. It was time to take the tablets, but I didn’t have any with me.

It’s unlike me to forget my medications, as I have been taking them for over 15 years. I could feel myself getting weaker, and I was forced to cancel the remainder of the day’s plans. I returned home to take my medication and rest while its effects kicked in.

I felt so stupid for leaving the house unprepared, and instantly stepped back into the role of my own “caregiver.” As an adult, I should know my limits and how to take care of myself, and I have only myself to blame for pushing my boundaries and neglecting self-care.

I take four tablets at specific times during the day. I know when the time to take my medication is approaching because I feel weakness setting in, and I often begin to slur my words. Most patients with myasthenia gravis are prescribed Mestinon after diagnosis. I experience dreadful side effects, including “Mestinon-tummy” — I always know where the nearest toilet is in every situation. But I know that this treatment works to maintain the messaging between my nerves and my muscles.

I take a tablet at 6 a.m., 11 a.m., 4 p.m., and 9 p.m., just before meals, with the final dose before bedtime. Mestinon maintains my strength and prevents falls, lessens my “drunk” appearance, and treats my other symptoms.

Along with my prescribed medication, I take multivitamins (excluding magnesium, which is contraindicated), a probiotic (to protect my poor tummy), anti-nausea and anti-diarrhea medications, sleeping tablets, painkillers (including controlled medications and opioids for my exceptionally bad days), antidepressants, and calcium. I also enjoy a protein shake at least once a day and add collagen to my morning cereal. I keep extra Mestinon at the office, in my husband’s car, in my car, and in a cooler bag that I carry with me at all times. I refuse to be caught out again.

Given this experience, my advice is to always plan ahead. Don’t allow your health to destroy your freedom. Let’s end 2019 on a high. We deserve it.

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