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Re: Do you really understand?

Craig:

As I say, I'm perfectly normal for a 70 year old, except for the fact that I'm 32.

I've just resigned myself to watching videos on youtube of things I'd like to do but can't. Even just watching some of those videos, my muscles cells scream "No way in hell!"

Type of Myotonia: Becker

Country: USA

Re: Do you really understand?

Yes son I do understand completly. I believe yours is one of the best descriptions I've ever heard. It brought me to tears reading the very words I have thought of many, many times. I lost a job because of my illness not because I couldn't keep with the work load but because my boss said it was all in my mind and all I needed was to exe3rcise and get mental therapy. I wish I could make things easier for you but I can't. All I can do is listen and believe when you say you can't even raise your foot 3 inches to step up on that curb without taking the risk of pulling a muscle. I wish my former boss could experience my pain and stiffness at least once in her life. I wish all these people who try to put extra work on me because I don't look sick could walk in our shoes too. Hang in there. God Bless.
Teresa

Type of Myotonia: still unknoen

Country: USA

Re: Do you really understand?

That was a very good account of a day with MC, thanks for posting it.

I doubt anyone, including my wife who knows me so well, will ever understand what it is like to have MC unless they get to feel it.

You may feel lonely but the truth, thanks to this site if nothing else, you are not alone.

Type of Myotonia: Becker's

Country: England

Re: Do you really understand?

I'm right there with you my friends. Thankful for each of you. <3

Type of Myotonia: Becker's Type

Country: United States

Being There with you

Joshua, Thank you so much for sharing your detailed experience with us. The MC is so often much worse to experience than the literature describes. From what you read in the literature, its just a slightly stiff muscle and nothing more. Its way, way, way more involved as you so eloquently described. One day, perhaps the medical community will understand. I went through a lot of pain and suffering in a research study on MC here in Kansas City so that perhaps one day they CAN understand. Hang in there. Its all any of us can do. Have you tried Mexiletine? If not, you need to see your neurologist and demand it. All the best, Stuart

Type of Myotonia: Thomsens

Country: USA

Re: Do you really understand?

Great post, can relate to it all. For me in the morning its putting my socks on. Maybe a combination of MC and age (though only 51) but my wife now helps out cutting my toenails. Also hate having to get up in a meeting and walk to the front to give a presentation. Guess it is and was harder when I was younger as now my peers are much more accepting and less of a pain than they were when I was a kid.

Country: UK

Re: Do you really understand?

This is something I say to people, when asked why I think it's so bad. I'm glad there are others that feel the same. Others see it as a small annoyance, but when you live with it day after day, with a fear of doing the smallest task or motor movement, it's not just a small pesky annoyance. It's a struggle day after day to try and live a normal life.

Type of Myotonia: Beckers

Country: Canada