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.
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.
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