Words can only explain so much. How many of you with MC wish your doctor, your sister, friend or mother could live just one day in your life to finally understand what it's like? I feel so alone in a small city, misunderstood, and judged.

Wake up, stretch. Wait to be able to move again, hope you don't have any pulled muscles. Throw the blanket off of yourself, and put your feet on the ground. Taking a deep breath, toss yourself onto your feet and stand up. Hope you don't fall over. Wait for your feet and legs to relax. Walk to the stairs. Two steps later and you have two options:

1) Force yourself to continue walking up the stairs, fighting your own muscles to go against their will. This option leaves you with a heavy burning, or more pulled muscles.

2) Go slowly and patiently. Frustrating, as it takes longer this way to finally be "free" of the invisible shackles. And even after warming up to the stairs, if you have to move quicker than you already were, good luck.

Other things in the morning that are difficult that I don't look forward to:

-Getting dressed. From the shirt to the socks, everything is difficult and takes time.

-Showering. Especially washing my hair.

-Ever taken half a century to get up the stairs only to realize you forgot your phone on your nightstand and you have to make another trip?

-Breakfast. The jaw and tongue seem to be bad for me. If I haven't talked in awhile or eaten anything they have a very hard time relaxing.


Off to work! Yeah you turn that door knob. Oops didn't mean to hang onto the knob for so long. Shoulder checking before moving into a lane - Better do it right, you only get one look. Oh you hit every green light? Awesome! Except that you haven't used your clutch for awhile... better be careful coming out of 3rd gear. (should I even be driving? thank god for power-steering)

Getting out of the car... Better take your time as to not look like an old geezer at the tender age of 21. Don't lose your balance! Wait a few moments before you close the door and walk towards your office.

What's that ahead of you? Nothing? I see a curb. Only 3 inches high you say? I've went out of my way to walk up a wheelchair ramp. And the gradual uphill slope still slows me down tremendously.

People say I'm lucky. It could be worse. But do you truly know how bad it really is? These are just a few of the obstacles encountered daily. I don't know how to get around it. I think about it all day because it's affecting me all day. When I'm still, I can feel it building. Waiting to happen as soon as I make a move. I can feel it linger inside me. It's toxic and uncomfortable. It picks at me, every moment it can. Constantly reminding me "I'm here".

Type of Myotonia: Thomsen's

Country: Canada

Joshua:

I understand completely! I've lived many of those moments you've written about. 99.9% of the time when I've pulled a muscle from the MC, it has been either changing position in bed, stretching in bed, or getting out of bed.

When I do drive...which hasn't been much lately for a few reasons, I get in a lane, and stay in it, and if I do have to change lanes, I will do it miles before I actually have to be in that lane.

And yes, I can feel it building. Nice to meet someone else who can too. A lot of people don't seem to be able to feel the charge but I've always felt it very strongly. It's that thing that tell you, you can't do something, not because you think you can't, but because you KNOW you can't.

Type of Myotonia: Becker

Country: USA

I know what your talking about. I still have same problems at 58. But It does get better because you won't even attempt to do the same things when you get older as you did at 21. hang in there. Send me an email if you want to talk further

Type of Myotonia: thomsens

Country: toronto canada

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

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

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

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

Type of Myotonia: Becker's Type

Country: United States

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

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

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