If you have the neuro-muscular autoimmune disease Myasthenia Gravis (or MG which translates from Latin to grave muscle weakness) like me you know that sometimes things just don’t go as planned. Some days you are on your game, the next you are in a Myasthenia Gravis crisis.
I had one of those moments yesterday. I woke up, ran some errands, went about my day as usual then sat down for dinner. 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!!! We are going to die right here in the middle of the fried rice. Abort! Abort! All hands on deck!
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 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 and the arms are close behind. Save yourself! This shit is getting real right now! We are going down!!!!!!
If you haven’t noticed, my body is a bit of an alarmist. Although it has plenty of history to warrant PTSD, we have been though a lot over the past 7 years. It had been a long time since I’d had a complete system failure so I guess I was due. I had missed many red flags that 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 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.
Here’s the thing. It is what it is. 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 crisis 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:
- 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, no projections into the future.” Staying present will help you stay a little calmer. Don’t think about all the things that you may miss later because of the crash.
- Don’t be stubborn – When I’m feeling weaker than normal or should be canceling something to rest, I like to push through it and keep going. It has NEVER served me well. If you feel like you should be resting or that you aren’t very stable sit down and do it! Sometimes it only takes 20 minutes or so to get back to your A game. Pushing though only makes you and everyone around you miserable, just ask my family.
- 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 my 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.
- 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 Farmers 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.
- Prevention is the best treatment – After many years of dealing health issues, we can get a little sloppy. Make sure you 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. 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 on the daily isn’t a luxury, it’s a necessity. If you don’t, you won’t be good to anyone else.
Do you have any recommendations of things you do during a crisis? I would love to hear about them in the comments section. Also, I will be starting my three part series on healing MG naturally. Subscribe to my newsletter so you don’t miss out.