Thursday, February 2, 2012

What Does Myasthenia Gravis Feel Like?

For me, one of the hardest parts of having a rare disease is no one else knows what I'm going through. It is profoundly lonely to have a chronic illness no one has ever heard of. I've often wanted to flick a switch and give other people MG for 24 hours. I want them to have a taste of it, to allow people to understand what it feels like to have a body that works, and doesn't work, and works again.

But of course, I don't have a magic switch.
I often wonder what people think when they see me using a powerchair for mobility, and then a walker, and then walking on my own, and then using a powerchair again. Do they think I am an attention junkie? A faker? Making this up for my own sick pleasure? Because I'm not. I hate MG. I wish I could make it go away and never come back.

Myasthenia gravis moves around my body, choosing to weaken different muscle groups at different times. Sometimes it settles into my hip and thigh muscles. When it is there, I feel as if I have invisible weights strapped to my legs. The longer I walk, the more weights I carry until I am crawling. I use a powerchair because I hate crawling. Lately MG is in my shoulders more than in my legs. It makes brushing my hair harder, but walking is easier... for now anyway.

Myasthenia Gravis means grave muscle weakness in Greek and Latin. The grave part of myasthenia gravis is when MG weakens the muscles involved in breathing. This happens to me at least weekly to one degree or another. It is usually mild, but it has hospitalized me before. MG breathing weakness is not like an asthma attack, or a coughing fit. It is subtle and truly evil.

To simulate what MG breathing weakness feels like, try this:
  • Cover your mouth and nose with your hand. Breathe in.
  • Remove your hand. Exhale.
  • Cover your mouth and nose again.
Do this until you feel like passing out. Until your heartbeat pounds in your throat. That is what MG breathing muscle weakness feels like -- only the hand is invisible and it doesn't stop at will. Sometimes this weakness can be reversed using medications. Other times I just wait it out in silence. A few times I've ended up in the hospital because I couldn't breathe. But, I come back from the depths. I've got more lives than a cat.

At times MG settles into my throat, making swallowing difficult. Or it decides to weaken my tongue so I slur my speech. We blink about 100,000 times a day, which explains why my eyelids fall down sometimes. Sleepy Dwarf, in Disney's Snow White was patterned after one of Walt's friends who had myasthenia gravis. My eye lids fall down and people ask me if I'm tired when I'm not. My eyelids just need to reboot. Eye muscles move constantly, and they fatigue at times giving me blurry double vision. I have magic prisms in my glasses that let me see a single image even though my eyes are not aligned. My eye doctors are amazing people.

All day long MG moves around, weakening different parts of my body. It is disabling, but never the same disability twice.

Right now, I am blessed. My MG is fairly quiet, although I'm not in remission anymore. Medications are keeping it quiet enough for me to enjoy my life. I do enjoy my life, not despite all my illnesses, but with them. Chronic illnesses are as much a part of my life as my smile, or my freckles. They're here to stay. And so am I.

21 comments:

  1. I've read some of your blog and it's interesting. i like it

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    1. I'm glad you're enjoying it. Thanks for stopping by.

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  2. I have a friend with MG and I'll let her know about your blog. Thanks for the description of what it's like and the reminder that we never really know what others are going through. It helps me put my own problems in perspective!

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    1. MG is a challenge all right. Please invite your friend to visit Joy Benchmarks. It's always amazing to meet someone else with MG. Thanks for stopping by.

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  3. A friend sent a link to your blog; I'll "second" everything you have to say about MG ... I think those of us who have it really do wish we could "share it" for a few hours, at least at times; but then I think, "No!" because I really wouldn't want to see my friends and family have to deal with this "flakey" monster. Thanks for sharing your thoughts; they really mirror my own :-)

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    1. I wouldn't want to curse anyone with MG. It's too hard to deal with. I wrote more about it In The University of Catastrophe. Sorry you have MG, but glad to meet you.

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  4. Hi - I'm Laura's friend. Your description of MG is right on. I have Generalized MG and have only had eye problems recently. I collapsed in total weakness all over my body 10 years ago and was dx'd then. The greatest challenge is making others aware of what it's like and why you need their help and understanding during the roughest times. I have longed for a suit that people could zip on with a hood and mask that would then give them the sensations of MG - of that weakness. (Not tired as they think you are feeling). Until then, I look forward to reading your posts.

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  5. Hi, I'm Larua's friend. I was DX'd with Generalized MG ten years ago when I had a total collapse and could barely move at all. Love your blog and your description of what it's like to have MG. I have asked my technology engineering friend to please invent a suit that a person could zip into along with a hood and mask. This suit would give the wearer the sensations of what it's like to have MG. Then they would understand the difference of being weak and not tired. Well, until that day comes, I'll be reading your blog. Well done!

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    1. A suit. Yeah. A suit that gets progressively heavier for no apparent reason while trying to put on a seat belt. Yank. Yank. Ya.. wait a second, how come my arm isn't moving.

      I love it! A suit.

      Nah. We'll just continue to be members of the elite MG squad. Sorry you know too much about MG. Glad to meet you nonetheless.

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  6. Hi, I saw Donlyn's post on Facebook and am delighted to find you. Can you give me permission to list your blog with those of other MGers on my website on the page that's entitled LIVING WITH MG - http://vw4causes.org/mg-awareness/living-with-mg/

    I'd also be delighted if you'd share some of your MG story by adding a comment so I cna then add it to those received by others. The more MG stories we can share the more chance we have of drawing attention to this disease. The reason I am doing my MG Awareness drive across country is to share the symptoms so that others may get diagnosed more quickly and to increase understanding and compassion by the public. Having driven 5000 plus miles and spoken to many people about MG, I am convinced the MG incidence is way higher in reality than the quoted figures. And no matter how rare, we can beat the drum just as loudly about MG if we put our minds to it and work together, can't we?

    That's why I am linking as many people and websites together as possible. Hope you'll share a link to http://vw4causes.org too, as we continue with our MG drive.
    Thank you.

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  7. Hi, I saw Donlyn's post on Facebook and am delighted to find you. Can you give me permission to list your blog with those of other MGers on my website on the page that's entitled LIVING WITH MG - http://vw4causes.org/mg-awareness/living-with-mg/

    I'd also be delighted if you'd share some of your MG story by adding a comment so I cna then add it to those received by others. The more MG stories we can share the more chance we have of drawing attention to this disease. The reason I am doing my MG Awareness drive across country is to share the symptoms so that others may get diagnosed more quickly and to increase understanding and compassion by the public. Having driven 5000 plus miles and spoken to many people about MG, I am convinced the MG incidence is way higher in reality than the quoted figures. And no matter how rare, we can beat the drum just as loudly about MG if we put our minds to it and work together, can't we?

    That's why I am linking as many people and websites together as possible. Hope you'll share a link to http://vw4causes.org too, as we continue with our MG drive.
    Thank you.

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  8. Sure Carole, you can list my blog. I've written a book about MG. It's available for Kindle. Life Music: Lessons Learned at The University of Catastrophe. The more people know about MG the better. Maybe one day there will be a cure. Until then I'll be blogging.

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  9. I was dxed with MG in 1963 but had isince a child. I am quick to inform and educate all who look at me when I walk, use my scooter, fall, trip, or need an arm for support when my body says, "no way your gonna step down offf the curb."

    My sister and I were dxed at the same time and have treated the MG with a lot of humor. We were our main source of support until we joined oour local MG support group.

    Its a great group and we have fun and care for each other. like one big family.

    Pleae take care and try to laugh.

    Aub

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  10. Aub,

    I laugh all the time! MG is hilarious sometimes. Chewing food and suddenly the swallow switches off. Now what do I do? Wait five minutes. OK, cool. I can swallow. Can't chew anymore, but I can swallow. Wait five minutes. OK, got it together. I can chew. I can swallow. Life is so good, except I can't hold a spoon anymore. What else is there to do but laugh? I'm glad you laugh too.

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  11. Marie, thank you for sharing your story about how it feels to have MG. My dear friend who is like a sister to me was recently diagnosed with MG and forwarded your article to her close friends as a way of sharing what she is going through. I have been doing a lot of reading on MG, but this personal account has been very meaningful. My very best to you. Wendy

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    1. MG varies from patient to patient. This has been my experience, but my experience has been on the worst case side of the bell curve, so please don't take my story as a look into your friend's future. Hopefully she will do well and continue to enjoy life and enjoy being your friend. Take care.

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  12. Marie Smith, I applaud your superb bluntness and superior attitude. I came across your blog after searching in google "What does myasthenia gravis feel like." I just wanted to know how to better describe it to people that just don't know, or dont understand. I too have been given the most wonderful MG.. I was dxed a little over a year ago and in April I turned 16. Bummer, right? Didn't get to experience much before everything crumbled to pieces! Before i was diagnosed it was hard. Real hard. I was Co-Captain of the schools dance team and was a very energetic person, a chatterbox to say the least. But i started getting dizzy and the room would double and spin, and i would slur and get to tired to keep my eyes open.. my face would paralyze and it was painful to make myself appear normal. Everyone thought I was just an attention seeker. My parents thought i was making it all up and my friends acted as if they didnt know what moral support was. I soon fell into depression and had suicidal thoughts. Maybe I was making it up. Maybe I was crazy. But then my doctor finally took the right blood test and here I am now. Later on it spread and now it also effects my limbs and my breathing. I lack all support from my family, they seem to have decided that they are not going to allow it to effect their lives and ruin it anymore. My friends dont know how to help since I start to slur through half way of explaining it. The unfortunate cuts on my arms healed and there are hardly any scars, but sometimes they itch, tingling for me to rip open the skin to get to the underneath. I feel it most when I cry.. I understand that spilling a little blood isnt going to help anything but the urges are simply another thing i deal with now. I dont know if you ever are just sitting on the couch without even the static of the T.V. going and you just feel this massive suffocating feeling of depression and worry, and the big question that sinks into your skin and bones and makes them ache claws into your brain and wont let you think of anything else, "Is this all there is? Is this how the rest of my life will be?!"

    I am truly sorry for the terribly long message and the scattered up mess of words. I should have probably just wrote a book like you did to get out my frustrations but I just dont think it would make me feel better. MG is a terrible curse and has made me grow up fast. I feel like an old woman sometimes! I dont know if you would even bother but if you would like to use my experiences in your further writings whether it be books or blogs or just in a diary you keep under your mattress I give you permission. I just want the world to better understand..

    Yours Truly,
    Megan ~ Justateengirl

    Ps. If you have any questions you can write my email megansorters@gmail.com I would love to talk to people who understand..

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  13. I WAS DIAGNOSED WITH MG ABOUT 5 MONTHS AGO. WHAT YOU SAID IS AN EXACT DESCRIPION OF HOW I FEEL NEARLY EVERY DAY. I CAN NO LONGER DO THE THINGS I USED TO DO. I KNOW THAT THERE ARE MANY AUTO-IMMUNE DISEASES. MY SISTER DIED OF LUPUS. YOU HEAR A GREAT DEAL ABOUT CANCER AND THE RESEARCH GOING ON WITH IT. I WISH THAT MORE RESEARCH WOULD BE DONE ON AUTO-IMMUNE DISEASES. WHAT YOU SAID HELPED ME UNDERSTAND THAT I AM NOT THE ONLY ONE. I READ IT TO MY HUSBAND, TOO.

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  14. I found some symptoms of myasthenia like diplopia, leg weakness. I consult with my family doctor, and as he prescribed Mestinon medication have been taking and notice the improvement right away.

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  15. You described EXACTLY how I feel with MG...thank you...I now know that somebody else is not only experiencing the same symptoms but also similar thoughts...I'm often thinking that people must view me as an attention-seeker or faker because sometimes I appear "normal". I often get comments like "So you're obviously improving" or "You're having a good day!" or "You don't look sick". It makes me so angry because I'm tired of repeatedly trying to explain to people that I'm NOT better.

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  16. Just diagnosed myself its so hard when mestion starts to finish its course then Boom like clock work ,,, my right eye drops to an eventual close , my face looks saggy and I look miserable, my wife has said I look like Quasimodo when it happens! It really is the strangest disease , I can relate to the gagging ,painful joints, and I just laugh about it! But the only thing I really hate is when I slur or can't quite get my words out!! Makes life eventful though!!

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Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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