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5 Things to Remember in a Myasthenia Gravis Crisis

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June is myasthenia gravis (MG) awareness month. For those that have never heard of this rare, neuromuscular autoimmune disease, here are a few fun facts about it:

1. It can make the body go weak at any time
2. Double vision and droopy eyelids are a key trait
3. Can cause severe fatigue in the neck or limbs
4. Can affect breathing
5. Worsens as muscles are used

If you have MG like me you know that some days are great while others just don’t go as planned. One moment you are on your game and going about your life like the warrior you want to be, the next you are in a myasthenia gravis crisis curled up in fetal position in bed. It’s just the way it goes.

I had one of those moments a couple of days ago. I woke up, ran some errands, got coffee with my daughter, picked up the house, got take out for dinner then sat down to eat as usual then sat down to eat. I could feel myself getting weaker throughout the day but thought I could negotiate my way out of it. The conversation in my head went like this:

Me: You’re ok. Just finish dinner and you can lay down.

My Body: I’m not ok! I’m not ok! Mayday! Mayday! Holy cow we are going to die right here in the middle of the fried rice. Abort! Abort! All hands on deck. This is over!

Me: Calm down body. You are going to be fine. You are just tired and we waited to long to eat. Let me finish dinner and we will go to bed early.

My Body: No! I’m melting! We are starting to have a problem breathing and we will probably have to go to the hospital, probably in up in the ICU with that terrible nurse. Are our papers even in order? Where’s my purse? Or maybe we will faint again. Oh God, I think we are going to faint! I hate fainting. Wait, I think we just lost our legs. Did you feel that too? That means the arms are close behind. Oh no! Save yourself! This is getting real right now! We are going down!

If you haven’t noticed, my body is a bit of an alarmist — and very much a drama queen. Although it has plenty of history to warrant post traumatic stress syndrome (PTSD), as we have been through a lot over the past seven years. It had been a long time since I’d had a complete system failure, so I guess I was due. I had ignored many red flags telling me it was coming.

My MG crisis started with a swirly, dizzy feeling in me head. Next came the feeling that I couldn’t take in a full breath. I decided to abandon my chow mien and head upstairs to bed, but couldn’t get out of my chair. As my husband was helping me up, my arms gave out as well and I started falling to the floor. My daughter was close by and caught me and helped her dad get me to the couch. By then I was covered in sweat and unable to breathe. After a few minutes the three of us made it over to the stairs (side note: my next house will most definitely be a one story). I butt-bumped up the stairs (sat down on one step and went up backwards on my butt, pulling each leg up as I went) with my husband pulling me up each step until I made it to the top. Then I did an army crawl to the bed where he lifted me in.

Devastating for them. Humiliating for me. I will probably have to put my daughter through therapy.

Unfortunately, it is what it is. There isn’t much you can do about it. If you haven’t been though a crisis before, good for you. If you have, you know what I’m talking about.

Although not all myasthenia gravis crises are created equal, there are a few things we should all do when one hits. Below are a few tips to keep you safe and sane:

1) Don’t panic. If you feel yourself going off the deep end, don’t make it worse by panicking. Stress sends cortisol into your blood stream which amps up your immune response even more. It sounds counter intuitive, but lean into your crisis like a karate master. Tell yourself, “OK, this is unfortunate, but I will be fine tomorrow so let’s just write this off as part of the ride and deal with what is happening now, without projections into the future.” Staying present will help you stay a little calmer. Don’t think about all the things you may miss later because of the crash.

2) Check in with your body on a regular. I know my body pretty well because I’ve had to get to know it, many times. We aren’t always friends so one thing I have learned is to check in and read the signs. If my legs aren’t working well I know my balance will be off soon. Next goes my breathing and so forth. All these signs means it’s time to sit down for a little while. Usually that is all I need but when that doesn’t work, I go lay down in a quiet room. By doing the little check-ins, with a little experience I’ve learned to read my body and navigate my life with this disease.

3) Have your medical information up to date. Do you have a medical card? Bracelet? App on your phone stating your condition and all your insurance and doctor information? If not do it now. And by now, I mean right after you finish reading this post. Don’t wait or put it on your to do list because you never know when you will need it. I passed out once at a farmer’s market by myself and that little app on my iPhone kept me safe and the people around me informed. By the time I woke up in the paramedic truck (so embarrassing), I was already on the way to the hospital with my doctor standing by. First responders know where to look on your phone and it doesn’t require a security code to get the information they need. Make sure you have all the necessary information ready for anyone that may need it so if you go in to crisis, you have your back.

4) Ask for support and be grateful. I am not a fan of asking for help, but when I know things aren’t looking good for me I’m not afraid to ask family, friends and sometimes total strangers for help. I have never been turned down so far. Don’t be a hero. If you need help, ask. If you get it, say thank you to those responding. It’s really easy and I’ve found that people are overly generous with their care. I’ve also tried to offer help to someone that I knew was struggling only to be met with a rude, aggressive response. Don’t do that. People are only trying to be kind. Also, sharing in a common humiliation makes it not so humiliating. Join a support group of people who truly understand and can laugh and cry with you after you are done with your crisis. We’ve all had some pretty bad ones (like passing out in a farmer’s market and having the hummus lady try to give you mouth to mouth). Sharing common experiences makes us all feel a little less alone in our struggles. If you don’t know where to look and want an empowering group of folks that never give up their battle, join my private FaceBook support group the Wellness Warrior Tribe. We get it.

5) Prevention is the best treatment. After many years of dealing health issues, we can get a little sloppy. Make sure you know your triggers and are taking care of yourself all the time, not just when you feel unwell. Be mindful of your diet and self care on a regular basis. I should have know better with eating Chinese food, as MSG is a huge trigger for MG but I did it anyway. Dumb move on my part. It’s like being on a plane during an emergency situation. You put the oxygen mask on you first before you put it on anyone else. Taking care of yourself and staying true to what works and rejecting what you know isn’t healthy for you isn’t a luxury, it’s a necessity. You can’t beat the system on this one. The house will always win.

Follow this journey on Lisa Douthit

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Originally published: June 13, 2016
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