What’s a typical day like for a person with Myasthenia Gravis? Well, there is no “typical” day for a person with MG because it affects each person differently, but I can share what my typical day looks like.
Please bear in mind that not all symptoms I discuss are caused by MG. Some may be caused by lifestyle or other conditions. It’s hard to tell. That’s the crazy thing about MG; because it affects everyone differently and symptoms come and go, it’s rather difficult to determine if something can be directly attributed to MG or something else.
I normally wake up sometime between 5:00 AM and 6:00 AM. I don’t use an alarm clock; it just happens. When I awaken, I find myself uncomfortable lying in bed and know that it’s pointless trying to go back to sleep, so I just get up. I arise, turn on the coffee pot, turn on the kitchen light, let the dogs out and then get out the toaster. I typically eat a slice or two of raisin bread toast so that I can take my medicine without it upsetting my stomach. Once the dogs come back in, they get a little love and then I feed them. They don’t really eat a meal, but rather snack on their food throughout the day. Moderation in everything, I’ve always said.
I call the next hour or two “Quiet Time”. It’s the time before my wife wakes up and it’s typically quiet and peaceful around the house. The dogs are usually still tired, so they go back to sleep. Having finished eating my toast and taking my pills, I pull out my iPad and read two devotions each morning. I then read/respond to emails and browse the internet. I read up on the news and what’s going on in our local community. I sip my coffee and just relax.
When my wife wakes up, we eat breakfast. Three days a week, I shower and then head to the gym to work out. Where I live in southern Louisiana, it’s hot and humid even in the morning. The heat and humidity causes fatigue quickly in people with MG, so I go to the Wellness Center to workout in an air-conditioned environment. I take a Mestinon pill right before heading to the gym which helps me from getting so tired while on the equipment. When finished with my workout, I head for home and take the dogs for a short walk before lunch.
On weekdays when I don’t go to the gym, I typically take the dogs for a walk right after breakfast, before it gets too hot. We don’t go too far before my legs begin to tire and I catch myself drooling and dragging a foot. Yes, that happens. The drooling is an unexpected surprise from MG. It doesn’t seem to happen when I go to the gym, but when I’m outside in the heat and humidity, I suddenly start drooling out of the right side of my mouth while walking. Thank goodness for shirt sleeves. They’re much easier to carry around than the drool towels my daughter used to lug around for my grandkids when they were babies.
The dragging of the foot is a particular hazard I need to keep an eye on. As I tire, I scuff the sole of my left foot on the ground as I walk. This can lead to tripping and falling. Since I usually walk on concrete, I need to be careful. The funny thing is, sometimes even when you’re concentrating on trying not to scuff your foot, it still happens. That’s because the signal from the brain isn’t making it all the way down to the foot. That’s why I have to keep walks short during warmer weather. So, I’m scuffing on the left side and drooling on the right side. What a funny prankster, that MG!
When we get back to the house, I let the dogs out in the backyard to play and do their business. I have chores each day, so I water the plants, pick up the yard and do whatever else is on my list of chores. While we’re on the subject, let me mention that I will discuss our two dogs in a separate blog. There’s a story behind it and the reason we have two.
Once all the chores are done, I usually do some work on the computer. Besides writing this blog, I also teach drones at the local college. I also have a photography business. Sounds like a lot, doesn’t it? It is, but I only take on jobs that work within my schedule and I’m careful not to take on too much. In fact, I’m not doing any photography work at the moment because the drone instruction at the college is taking more of my time. Right now, most of the drone classes I teach are held online and I have taped most of the lessons. That gives me time to work on future projects and still get the rest I need. I do some hands-on drone training and am careful to schedule those lessons when the weather isn’t too miserable.
I feel it’s really important to try to stay busy when someone has MG. If you don’t, your mind will focus on the wrong things. With MG, it’s really easy to catch yourself focusing on the things you can no longer do, but you need to focus on the things you CAN do and do them. Think about the ways you can expand on those things and push yourself a little to make it happen. Going to the gym was a push for me, but I’m so glad I made myself do it. I was putting on weight and my muscles were starting to atrophy from lack of use. I’ve always said that change doesn’t happen until you become uncomfortable. I became uncomfortable with the weight I had gained and the trap of telling myself MG was the reason I couldn’t exercise. What a lie that was!!! Exercise was exactly what I needed and once I proved to myself how much I could do at the gym, I started actually feeling better about myself. Going to the gym is now part of my routine; a very important part of my routine, I might add. The same holds true for my teaching drones at the local college. That’s well within my capabilities and I really enjoy doing it. Just having something positive to focus on makes a world of difference when you have MG.
Now back to my typical day. After working on the computer, it’s usually closing in on lunchtime. I fix some lunch, take my pills and then lay down for an hour or so. Years ago, I was never a napper. I thought napping wasted valuable time. A couple years ago, when my symptoms started to get worse, I discovered if I laid down for an hour or so after lunch, I didn’t feel so tired later in the day. I have since learned how valuable this nap is to me in dealing with MG. The dogs kind of like it, too. After waking up from my nap, I usually do some more work or run errands.
At 5:00 PM, I take meds again. Are you starting to catch on? Sometimes it feels like all I do is take meds, but they keep me going and I’d be in a world of hurt without them. Lately I’ve noticed that my eyes start to droop and my voice becomes hoarse around 6:00 PM, even though I’ve taken my meds and had a nap. I guess it’s time to talk to the doctor about that on my next visit.
After dinner, I usually watch a little tv. At 9:00 PM, I’m exhausted and head to bed. Sometimes I have trouble falling asleep, so I read until I’m sleepy. There’s a difference between being tired and being sleepy. By 9:00 PM, my body is tired and my symptoms are worse, so I go to bed. Sometimes just lying down helps with the symptoms.
So that’s the day in the life of this someone with MG. I like to call it “Conservative Busy”!