My Day with Myasthenia Gravis

I get out of bed around 6:00 AM every morning. But the whistling of my CPAP mask and my tingling, aching muscles awakened me much earlier. Time to take my first handful of medication. I am careful to take the right pills at the right time. Taking so many pills is a little (really a lot) disconcerting--I have become like my parents were with all their pills.

Breakfast and coffee is next. I am too full to eat, but if I don't eat the medication will cause my stomach to really hurt. I love coffee--especially strong, really strong coffee. But now coffee just does not taste good and almost nauseates me. Given the choice between no strong coffee or nausea, I will opt for weak coffee. That's called adaptation! I am not sure how much longer I can stomach even weak coffee.

After breakfast, I spend time at my home desk catching up on the latest news and checking my morning email. It is good just to spend time by myself in the early morning. I work to focus my eyes so I can see the computer screen and read my messages. My vision blurs and my eyes twitch from time to time for no particular reason.

I pant for breath after my shower and while getting dressed for work. The dull ache, tingling, and cramping in my legs is a constant companion. The pain and tightness in my chest and gasping for breath with exertion is a faithful reminder of my condition. Not only do I have MG, I have whole-body autonomic sensory-motor neuropathy with all of its accompanying issues.

I arrive at work around 8:00 AM, make my way to my office and sit and rest to catch my breath and give my legs some needed rest. I enjoy walking around the church, checking on things, and greeting people. But now it takes too much energy and strength to do so every morning. I begin to map-out the rest of my day. I write things down much more frequently now, since I am likely to forget something. This is probably a side effect of medication. I am still looking for my other car key. I think Cathy hid it from me, but I have no proof. That is my story and I am sticking to it; until she finds the key, probably in one of my pockets!

Today my symptoms decided to play "merry-go-round" with me. Sometimes my chest hurts a lot and breathing is more difficult, then my eyes will go blurry, then my voice will get weak, then my legs will weaken. MG seems to have a mind of its own. I always feel breathless.

Before 10:00 AM, my computer emails me, sends a pop-up to my screen, and texts a message to my cell phone reminding me to take my Mestinon. I have become a slave to medication. I still feel full from my light breakfast, but must eat when I take my pill. 'Nilla wafers are a good choice--four to be exact. My mid-morning walk fits in well around this time. It is good to see all the children here at church everyday.

By late morning, it is time to begin getting ready for Wednesday and Sunday. Sunday comes every week and I need to be ready to preach so I study, pray, and work on my sermons.

It's lunch time. I take a break, go home, and let the dogs out. They enjoy their break too. I eat very little because I still feel full, fatigued, and pant for breath.

After lunch, its time to make a hospital visit. Two things changed last week for me and I am still adjusting. First, I finally made the decision to get a disabled parking permit. I have resisted and resisted that decision for months. I just hate the thoughts of giving in. But I realize that every step I save prolongs the energy and muscle use I do have. In MG it is not so much "use it or lose it" as it is "use it and you will lose it!" Second, I keep my walking stick in the car and use it when I need to walk a long way. I have found that helps to preserve my energy to walk with assistance.

It's 2:00 PM and my cell phone is beeping reminding me to take my Mestinon. I humbly obey my beeping master. By now, I am really hurting in my chest, my legs are so tired I can hardly walk. My eyes strain to focus. So, I head home, check email, and go to sleep on the couch because my body literally forces me to stop and rest.

About 4:00 PM, Bethany comes home and wakes me up. I start supper for Cathy and the girls, or we may decide to go out and eat. At 6:00 PM I take another hand-full of pills. I have eaten again, rested, played with the dogs a little, and settled down on the couch for a nap before bedtime. I sleep really well while watching TV. It's one of the joys of life, along with ice cream.

Before bedtime, I emailed Dr. Lee about my continued chest pain and breathing issues. Will another five session of plasmapheresis help me again? We shall see!

Let me try to describe the chest pain and breathing problems I constantly face. First, imagine eating the biggest meal of your entire life and then having it swell-up in your stomach. Second, imagine someone hit you in your chest with a 2x4 an hour or two ago. Finally imagine wearing the tightest full-length corset ever devised. No I have never wore a corset and never plan to wear one! Now try breathing. Just for fun, add some ankle and wrist weights, along with a weight belt to simulate muscle fatigue. This is what I feel like most every day.

Tomorrow, I get up and do it all over again.

Soli Deo Gloria!