Myotonia Congenita is certainly an invisible disease and people understand it less when they look at well defined or enlarged muscles, it so often leads to the wrong presumption that I am really fit and work out a lot.

I often tell people that my muscle condition makes movement something like wading through deep water. This image seems to help as most people have experienced doing that and they know that their limbs are a lot slower in the water so when they see me moving slowly they have more sympathy.

Fatigue is a problem I have developed what some medical professionals refer to as coping strategies, but for me it’s just what I do to get the most out of my abilities. I am pretty sedentary as this avoids expending energy on things of little benefit. I appear to have good stamina and use it to effect, such as if we are going out for the day I will make the most of it and drive myself to do as much as possible, but I then have to rest up for a long period afterwards. To this end I plan as much as I can, include rest stops, and assess activities as to how limited I am at doing them.

Since I can remember I have had bad MC days. If I kept a record, as my wife keeps suggesting, then I’d probably find a link. My experience of MC on a daily basis is one of most days being average, I can go places and do things, some days being exceptional when my energy levels are high and my symptoms are low, and some days when I really just struggle, very lethargic and feel weak. The last two are usually few and far between, which is probably why I notice them more but they do occur all the same.

As to lectures, well I stopped listening. If I say I can’t do something then I stick with it because I’ve discovered that I am the best judge of my own limitations. If people cannot accept that one day I can ride a horse and the next I can’t get up a few steps without aid, well that’s their problem. Fortunately most people have accepted that there is something wrong with me and by labelling it as ‘rare’ I excuse them their ignorance without reminding them of it.

Whenever I do have an off day I just remind myself that I DO have a rare medical condition and consequently I don’t have to make any excuses.

This is a MAGNIFICENT thread - and Jenna, your first post was so eloquent. We all can relate to the "lazy" epithet, and I know that it has hurt many of our feelings, for many years. Some of us didn't know what we had until later in life, and almost believed those who labeled us clumsy, lazy, non-motivated, selfish, irresponsible, inconsistent, and all the other nasty things that were cruel jabs, against which we were essentially helpless.

Mary, I really think that, especially in a setting like church, where people ought to be kind, non-judgmental, accepting, etc., you ought to thank them for their eagerness to have you do more, but perhaps talk to your pastor, and ask him if he would consider a sermon on making assumptions and judgments without full information.

If you give him the letter we have posted, and maybe one or 2 other articles on MC, and tell him that, like Multiple Sclerosis and Lupus, you can't always tell when someone has a disorder, that it can be episodic, and that you have learned to live with it by being pro-active and careful in certain respects, perhaps he can help to enlighten the congregation about their attitude.

You might also give the ladies a copy of the letter - maybe after they've read it, they can crumple it into a ball, and put it in their mouths, after they've extracted their feet. Can you tell I feel for you? I just turned 59 last week, and I've lived with those kinds of attitudes my whole life. Lois

You guys and gals hit it right on! I totally can relate...everything that was written seems to be my life exactlly.....I too have had to deal with the remarks (usually behind my back) as to why I cant work, or why I dont get out more often. And when I do see people they say "oh, how do you feel? Well, you look good" ----- I always say I look good on the outside but am broken on the inside.

I am going to be receiving one of those power chairs from the scooter store because of the weakness I experience in my legs and arms (well, basically all over) but I am scared to use it in public (just like I am when I use the scooters in the stores) because I feel people are going to be saying to themselves "what is wrong with her?...she doesnt look sick or disabled".
I know it is stupid to feel that way but I just cant help it....this "Invisible" disease/condition is down right horrible and stressful.

I too have to totally limit my self and often push my self to hard, and then am in bed for days or even weeks afterwards.
Some times I will do some thing and it might not hit me until days later. It makes it so frustrating because I cant ever plan anything because I dont know how I am going to feel from one day to the next. That is why I rarely get out of my house, there have been times where I have not left my house for months on end.

My 2 younger daughters are still in grade school and every year they ask me to volunteer in their classroom...and have always had to let them down telling them I couldn't ----but this year I did put my self on one daughters classroom volunteer list , I just hope I can follow thru with it....I just want to do it so badly...before I couldn't do it because I worked during the day....and now that I am not working anymore I still cant do it because of my condition.

I read what everyone had posted to my husband (taking breaks because my tounge wears out on me and I have a hard time talking) but he was like "wow" that is you!

It always makes me feel better reading this forum, I hate the fact that others have to suffer the way I do...but at least I know I am not alone.

Thanks everyone.

Beth

The important thing to remember is that it is not your fault that your muscles don't work the way that they are supposed to.

It's not a punishment, it's just a rare condition that you had the bad luck to inherit from parents who probably did not even know that they carried the defective genes.

The best that we can do is be honest with people. I had a boss who once told me that he had a problem working with disabled people, I told him that he was quite right; it was his problem!

Perhaps I've been lucky but most of the people I've met have been very good towards me but my symptoms are pretty severe so that once I start moving it becomes clear that I do have something wrong with me.

Very good presentation Jim... I hope more people will take your lead. Pete, I like your response to that boss - though I'm sure he wasn't too pleased.... yet he had no choice but to accept the truth in it!

Even though I finally learned that my lifelong issues were real, and not faked, as my family insisted - and presented those who are left with the proof, I still got no heart-felt and genuine interest or acceptance. Since minimizing my issues my whole life worked fine for them, I think they each feel like they don't want to or need to leave their comfort zones at this late date.

While I would really love validation from just one of them, it's not going to happen, so I have to deal with that. Even my husband and son don't really want to know too much, and merely tolerate my musings and observations.

Hello folks,

Here I am four years later and still fighting the same battle. Now it's with my stepchildren who think I should be doing "more" for them. I lost it completely on the phone with my stepdaughter because, not only do I NOT ask for anyone to help ME, but I am judged for not doing what my stepchildren think I SHOULD be doing for them and their children.

Needless to say, I re-read this post about expectations, and I printed out many of the pages to send to them. Jenna, Jan, Daniel, Lois and many others of you came to my rescue during the personal hurts I had in 2009 from my church, and now I am under attack from family. After 8 years, some of them still think I have MS.
So....as a reminder to all of your during the upcoming holidays....don't overdo, remember to be good to yourself, and if anyone has unreal expectations of you, print out this thread about expectations. It can't hurt, and maybe it will help.

Remember that the folks on the forum are here to help.
Blessed holidays to all of you.
Mary

Type of Myotonia: Paramyotonia

Country: USA

Mary, so sorry you're having to deal with that kind of stress. My husband ran interference for me many times when friends and relatives were rude or thoughtless.

Hopefully they will read some of the information and change their behavior, but if not, you can always tell them you're going to sic your forum friends on them :-)

Jan

Type of Myotonia: Thomsen's

Country: US

Thank you, Jan. That helps SO much. Thank you all forum buddies!

Type of Myotonia: Paramyotonia

Country: USA

Mary, sometimes family are the hardest ones to convince. I wish that weren't the case. Instead of approaching Myotonia as a physical problem, what if you approached it as a social problem. What I mean is the things that are causing you difficulty really have nothing to do with how MC makes you feel, but have everything to do with how you are relating to people and how people are relating to you.

I know it might sound like I am splitting hairs, but I find it easier (and also scarier) to see each issue in its proper perspective. First MC makes managing the physical world more difficult for us. Second MC also makes managing the our social world more difficult for us. Although both are true, the best way to deal with each problem, requires a completely different set of techniques. Managing the physical exhaustion of MC requires knowing our physical limits, getting proper rest and eating right. Managing people's expectations of us requires setting boundaries with others, understanding that it is very difficult for other people to understand what we go through (just think of them as children when it comes to this), and learning how to master the social game. Mixing the two complicates what is needed to succeed at either one.

There is a lot of information out there on the web about how to set boundaries, eat right, etc., but the one thing that is rarely discussed is how to master the social game when it comes to disabilities. This is not because no one wants to share their ideas, but it is because mastering the social game is so complex. What works in one situation might not work in another situation. But I will say this. The social problems that we experience from MC are not going away. Not even if we educated the entire world about our condition, most people still wouldn't understand and some people just won't care. People are too focused on their own problems, and it is hard to comprehend what we experience unless you actually experience it. So my solution is that we get creative and use what is inherent about MC to our advantage.

First off, when it comes to the way our condition works we have a distinct advantage. We are all knowing, masters of this subject, while everyone else are novices. If you had an argument about the brain with a brain surgeon, who do you think would win that argument--certainly the brain surgeon. So if someone says that you are not doing enough, or being lazy, refocus the conversation on what the real problem is--they don't know anything about Myotonia Congenita.
Ask them, "What do you know about my condition?" and no matter what the say, the response can be "So you really don't know what you are talking about. I tell you what, go do some research on-line and when you have a clue about what you are talking about then we can continue this conversation?" Now being that harsh is probably not required, but what right does anyone have in telling someone else how their body works. How arrogant is that?

This brings up another point, when someone sticks their nose into someone else's business they are at a disadvantage socially if the other person calls them on it. Every one is raised that it is rude to act this way, and being called and insensitive jerk in front of others is very embarrassing for most people--there is always the exception to the rule. This is why people get so nervous when they ask someone with a disability about their disability. As children we are taught that we are not "supposed" to do that. Or "tread lightly" is what we learn. Don't be an insensitive jerk. So here is another way that we have the advantage when people start talking about our disability, even if they are attacking us. They probably don't know it, but we are in the position of power once again. They are coming to us, in a vulnerable state, and we have an opportunity to win them over to our side for once and for all. All we have to do is relieve their anxiety that comes from their misunderstanding of our disability. And we must be gracious. And the best way to be gracious in a situation like this is bring humor into it. Humor doesn't require lengthy explanations, or arguments or discussions that make people's eyes glaze over, because they have no idea about what we are talking about. Humor just makes them laugh, which relieves anxiety, and the simple truth about most people is once your relieve their anxiety, you solve their problem for them and make them go away. And that is what we want, for them to go away, leave us alone and not criticize us for a condition that we did nothing to create--we only inherited through birth.

Type of Myotonia: Thomsens

Country: USA