Living with Myasthenia Gravis: Turning Extra-Ordinary to Extraordinary
One of the questions I’ve been asked is what it’s like living with myasthenia gravis (MG). I often tell people the symptoms of MG that I experience but I rarely share the impact that living with myasthenia gravis has on my daily life.
Don’t get me wrong, I do a lot of the same things I did before my diagnosis. However, it’s more taxing on my body. It requires more time and more effort.
How does myasthenia gravis affect daily life?
MG differs a lot from person to person in terms of symptoms experienced and severity of symptoms. Even within the same person symptoms vary from daily.
It’s that very unpredictability that makes living with myasthenia gravis cumbersome.
Weakness and fatigue don’t seem like such a big deal on a surface level. You’d think ok go rest – don’t overdo it. Just do the bare minimum, the necessities.
But it’s not that simple. Even the bare minimum requires an effort that sometimes a person living with myasthenia gravis may not have.
27 Difficult Ordinary Tasks with Myasthenia Gravis
This is a list of some normal, everyday tasks and how they feel to me as someone with myasthenia gravis. This is not an all-inclusive list, just what I could think of.
1. Getting Out of Bed
I tend to lie in bed for a few minutes and do a body scan. There have been days when I’ve hopped right up out of bed and collapsed on the floor. The moment I start moving tells me what kind of day I’m having.
2. Taking a Shower
Showers can be relaxing. However, living with myasthenia gravis that is not always the case. Heat is a trigger for me so hot water can make me feel weak. (But who wants to take a cold shower?).
If I’m already feeling weak, it’s difficult to lift my legs to step in and out of the tub.
3. Getting Dressed
Sometimes my arms and legs are too weak to lift up to put on my clothes.
4. Brushing my Teeth
If my arms are feeling strong enough to lift my toothbrush to my mouth, I still run the risk of not being able to open my mouth fully to hit all my teeth.
5. Doing my Hair
As a Black woman, I have pretty thick and sometimes unruly hair. I lost a lot of hair due to medications (thanks prednisone) but I’m working my way back.
However, my arms get so weak and tired when trying to do my hair. I have to take a lot of breaks and get into some weird positions.
Have you ever been so hungry but can’t eat?
That’s what it’s like living with myasthenia gravis. I’m starving thanks to the prednisone but I’m having issues chewing and swallowing. So I can’t eat like I want to.
Sitting is a great way to rest your legs when you’re living with myasthenia gravis but it’s not always comfortable. I rock a lot. It’s soothing.
I live in a three-level townhome. So walking up those stairs to get to my bedroom is often like climbing a mountain. Sometimes I never make it up there and will camp-out in the living room for the night.
I also have an issue coming down the stairs. At any moment my legs give out. I’ve taken many a tumble down my stairs.
9. Washing Dishes
With my arm weakness, I can’t give my dishes the good scrubbing that I want. I often feel nervous about left on dirt and grime so I triple wash just to make sure.
But that leaves my hands feeling so weak. On top of that, my lower back is on fire!!
Having to bring the clothes downstairs for washing, bending to put into the machines, lifting laundry detergent, lugging the clothes back up the stairs for folding, and hanging is a never-ending assembly line.
Sometimes the clothes will stay in the guest room bed because I can’t lug them back upstairs or don’t have the energy to put them away.
I love a good homecooked meal but sometimes I don’t have the energy to throw down the way I’d like. When I’m feeling weak, I opt for simple one-pan meals.
If I cook that means I have to clean up and that means I have to eat. Which my ability to do so varies day-to-day.
Y’all know I love to write. Some days even gripping a pen is difficult. When I noticed the weakness I try to compensate and grip harder but that only causes more discomfort.
13. Doing my makeup
I’m not super girly but sometimes I want to razzle-dazzle them. It’s hard to beat your face when you’re experiencing double vision or having to work around an eye patch.
Also, it’s rare to feel confident enough to want to wear makeup with you’re living with myasthenia gravis.
You never know what your strength is. One day you may be able to lift 70 lbs, the next day you may only be able to do 40. One day you may be able to run a mile and then next you can only do a quarter-mile.
I’ve documented my struggles with my weight gain due to prednisone and my desire to workout out on my IG and Youtube. Living with myasthenia gravis is making it hard but I’m not giving up.
I’ve told you all about my random collapse on the way to the mailbox right? Taking a leisurely stroll around the block is something you may not always be able to do it. One block can feel like 100 blocks.
16. Lifting or moving my arms or leg
My extremities feel 10 times heavier. Almost as if something is weighing them down.
Vacuuming, sweeping, spring cleaning: can all be overwhelming. I don’t want my house to look a mess. I don’t have the strength or energy to tackle the work.
Lifting a vacuum up and down the stairs is exhausting. Cleaning an entire home is exhausting. Repetitive motions like sweeping and scrubbing are exhausting.
It’s an entire ordeal. Walking the aisles, putting things into the cart, standing in line to checkout, loading the car, having to transport it all into the house and put it away.
Granted this is the process for everyone but when you’re living with myasthenia gravis you run the risk of random weakness or fatigue hitting at any point in the outing making it difficult to complete the mission.
I try to grocery shop biweekly. But I take breaks between bringing the stuff in the house and putting it up.
I remember a scary moment in the car when I was trying to press the brake but I couldn’t put enough pressure. Thankfully there was enough room in between me and the car in front of me and eventually, the strength returned to my leg allowing me to brake.
20. Attending family functions
Large gatherings can be overwhelming but for the sake of family, we put on our best faces to participate.
21. Opening a bottle or jar
I’ve struggled to open my bottle of water. So I converted to refillable bottled with flip caps.
22. Staying Awake
I’ve had moments in which I’m completely exhausted. The next thing I know I’m waking up and I don’t remember falling asleep. The fatigue hits hard.
23. Going to Sleep
It may seem strange that with all the fatigue I also struggle with going to sleep but I do. My body won’t cooperate. Insomnia often haunts me or my body is so heavy that it makes it difficult to get into a comfortable position.
My senses are on fleek. I mean the slightest smells can give me nausea, the slightest sounds ring in my ears and you’d think I was a vampire the way light bothers my eyes.
Note: I’m not sure if this is all exclusive to living with myasthenia gravis but I never noticed until I was diagnosed.
Brain fog is real – enough said. Some days I literally just have to quit trying to think and do because it’s not happening. I literally can’t focus or formulate a thought.
26. Going out
Leaving the house for work, for fun, or for a date can be like packing for a vacation. Remembering my medications and just in case kit is something I’ve gotten used to living with myasthenia gravis. Get up and go is no longer a thing. I’ve gotta make sure I have all my supplies in case a flare-up happens.
27. Summer Activities
Summer is the most sensitive time of year when you’re living with myasthenia gravis. Going out when the temperature is above 75 degrees is a huge maybe for me. One of my tips for surviving summer with MG is if the activity is outdoors, I more often than not will not be in attendance. 75 feels like 100 to me and sets my symptoms ablaze.
Again, this isn’t an all-inclusive list but I hope this gives an idea of how basic things are amazing feat when you’re living with myasthenia gravis.
How can you be productive with a Chronic Illness?
All hope is not lost. You can still be productive and get things done while living with myasthenia gravis. It just takes a little forethought.
Whether you have myasthenia gravis or any other chronic illness you have to be smart about how you use your energy.
What does that mean? Prioritizing all the things I want to accomplish and carefully distributing my energy.
I’m not going to try to do my hair and wash clothes and clean the bathroom on the same day. If I go out, I dedicate most of the day beforehand and the day after to resting.
No, it’s not luxurious but it’s little tips like that that makes living with myasthenia gravis bearable.