Hi Zander:

I have Becker MC, with muscle weakness/stamina issues. I had very severe myotonia when I was younger which limited my activities, and had more of a problem with the weakness and muscle fatigue as I got older.

When I was younger, my goal in life was to join the Air Force, and I was worried that I would be disqualified if they discovered I had MC, so for a period, I tried really hard to essentially ignore my symptoms. I particularly didn't want to be underestimated and prevented by others from doing things I could actually do. As I got older, I had to come to admit that, yes, there are things that the myotonia prevents me from being able to do as well as others.

Among them, are about 90% of the jobs in the job market. I don't have enough stamina in my torso/trunk muscles to support my arms above waste level for extended periods of times, and certainly not on a regular basis, which means that working in food service, or a coffee shop, bagging groceries, or working in a retail store where I would be folding clothes frequently is out.

Today I carried a maybe 30lb backpack full of groceries about a mile home from the market, but I had to rest half way through sorting my clothes after doing laundry. I walk 1.5-3 miles most days per week and go to the gym regularly...I need to do this to minimize the myotonia and keep my strength, but I have trouble keeping up with the housework.

I also develop problems with my hands. When my hands become overworked, I simultaneously have trouble relaxing my grip, and develop burning and weakness. I develop tremors and begin to feel an impact on my coordination. I can no longer keep up with the pace of note taking in class, and require the assistance of note takers, and I do not believe I would be able to work a cash register fast enough for an employers liking. I was once harassed on the bus by a bus driver because he began driving before I could pay (which they are not supposed to do), and was then unable to get my fare out quickly enough due to the MC.

At my current job (which is great), I frequently carry back packs of equipment, weighing a few pounds a few hundred feet, sometimes a quarter of a mile, and this is fine because it's for a short period of time and I have a lot of rest inbetween, but I can't carry a 3lb pack on my back for more than a few hours without my back and shoulder muscles cramping up and burning. On the 1.7 mile walk home, I have taken to fastening the pack around my waist instead. I would love to go back packing but I know I would not be able to carry the pack more than a mile or two.

Additionally, despite my regular exercise I am still physically below average, and I think the MC has something to do with this. I have been "jogging" for almost a year now and I can't really do much more than I could do when I started (Jan I think you might have been on to something when you mentioned glycogen storage issues).

Yet I look like a fit, healthy, able bodied person....and in some respects I am (because I try a heck of a lot harder than most people!), but in other respects I'm not. So maybe "differently abled" is a better term.

Type of Myotonia: Becker

Country: USA

Hey zander!
I realy like your question, as it one one ive wondered for along time but ive been too scared to accept the answer "yes".
Im registered disabled and have a blue badge (i live in the UK) but if anyone actually asks i say no. I also agree that we, without thinking do hide our MC, well i do anyway. I would say to you, me and everyone else to not care what anyone else thinks but that wouldnt be a good idea. There will always be people who won't understand. However they will always be somebody who will, though it can be hard to find them.
paige :)

Type of Myotonia: becker

Country: UK