I get angry too, but mostly it is directed at myself, or to be correct, the MC.

I understand that heightened levels of stress can lead to deterioration of muscle control, only temporarily, but enough that you can feel slower and more sluggish than usual. I know that I've had that before, along with exhaustion if I've been involved in something stressful during the day.

Type of Myotonia: Beckers

Country: England

From a purely physical standpoint I have a theory about this based on my extensive work with brain injury issues. The myotonia causes us to generate more lactic acid than normal when we are exercising and increasing our physical exertion. This alters the pH of the cells and that's part of what causes our stiffness.

In a normal person, the lactic acid generated during exercise can actually be used by the brain as fuel - that may be part of what gives the "high" from aerobic exercise like running.

However if you've ever had any type of brain injury such as a whiplash injury, encephalitis or meningitis, or a concussion from other accidents or injuries then that lactic acid can actually become a neurotoxin and cause brain swelling. The brain swelling in turn frequently causes an anger response for no apparent reason.

I've seen this often with people who have been in car accidents. If the temporal lobe was affected, which is often the case because of the ridges in the skull in that area, they can even experience quite drastic personality changes. But definitely they get a very short fuse when it comes to anger.

This tends to calm down a bit over time, but can still flare up when conditions such as overexertion, illness, and even exposure to chemicals like fragrances cause brain swelling.

From an emotional standpoint I think we often do get very frustrated with the world passing us by (I like the hummingbird and pigeon, Mary). Much of it is our perception and perhaps not entirely based on reality, but it can still affect us emotionally. Comparison is a prime foundation for depression and anger.

It really helped me to "make peace" with my physical limitations and accept that I am a unique individual with unique challenges and I don't need to always be thinking about what I wish I could do or what normal must be like.

Another emotional/spiritual cause for anger can be assuming that you have a right to something and that right has been taken away from you. In our case we may blame our parents or God for letting us be born this way. We see it as a basic right to be normal and without defect.

It's one thing to accept limitations and pain and suffering if they are a result of choices we made, but it's a lot harder to learn to accept something we had no control over. And yet our favorite stories and movies often involve people who had to overcome incredible hardships and physical limitations to succeed. We are all heroes in the making

Jan

Type of Myotonia: Thomsen's MC

Country: US

Thanks everyone. It helps to hear other people's perception and experiences with this subject, since it is personal and private. The stress caused by the frustration is sometimes more painful than the actual muscle pain.

I know when I walk and do Tai Chi, the level of pain seems to go down and so does the emotional response. I guess what is difficult about this for me is that I sometimes feel trapped by the exercise. I don't know if this makes any sense to anyone, but if I don't do light exercise then I really start to feel pain and exhaustion when I move. If I do exercise it helps keep the bad pain and exhaustion away, but in the end it is only somewhat satisfying. Exercise doesn't take away the all of the stiffness, and it doesn't make me as strong as I think it should. What I'm saying is that the reward for exercise is not that great - the reward is that I just suffer less, which often doesn't feel like a reward.

Type of Myotonia: Thomsen's

Country: US

Jim:

I certainly empathize with you on many of the issues you have presented, and I think most people here do too.

When I walk as much as I do, it's not just because I enjoy it but because it keeps the myotonia manageable. The woods get darker before they get lighter though, and the myotonia first got worse. If I increase the intensity of my activity or start a new workout program, the myotonia usually gets worse for a few months. To be perfectly honest, I have been avoiding lower body workouts at the gym specifically for fear that it will worsen the myotonia in my legs. I have a seething hatred of elliptical trainers and even when I gave it a fair chance, I never made any progress what so ever on squats. It was as horrible the 100th time as the 1st time. Yes, I actually gave strength training an honest to goodness try, and I can soundly say, while I got relatively fit, any other woman on the same program would quickly surpass me. Most of my strength just came from my sheer stubborness.

I really feel that I have to work twice as hard just to maintain a normal level of functioning. I've never had the pleasure of "feeling young" and as the myotonia began to dissipate these past few years I discovered I really only traded it for bouts of fatigue and weakness.

So much for being a breakdancer. But I'll be content with walking and hiking because when I was younger, the myotonia was so bad, I got so out of shape as a result that it was an effort to walk just a few hundred feet.

Type of Myotonia: Becker

It's encouraging to hear that you do stick with the exercise though. When I don't I can fall into long bouts of exhaustion that eventually becomes exhaustion and depression. Its almost like I come home from work and just want to sleep and lay around on the couch. I can't stand the feeling, but sometimes I lack the motivation to get up and walk, do some Tai Chi or lift light weights.

I have gone through periods where I am keeping up with continuous exercise, which involves lifting light weights, and I really become stronger. It lifts my mood, gives me more energy and the MC doesn't affect me as much. The thing that seems to end that is the thought process of "great I do all this working out, but I'm not really that strong-only mildly stronger." I relate to what you said about "any other woman on the same strength program would quickly surpass me. I'm a competitive person and I don't like the feeling of doing something and not having a chance, at least a chance, at being one of the best at it.

And then I have this struggle with trying to accept who I am with MC while feeling like the exercise is only about trying to get rid of the symptoms of MC. I understand that there is a delicate balance here in doing things that make me feel better physically and understanding that no matter what I do, I will still have MC. Lord knows exercise is not about creating any sort of image as myself as a physical specimin. I can start to feel really good about the way I look and the way I am moving and then it just takes one walk in front of strangers "stiff as a board," and I am quickly brought back to reality as to how society views us.

Well, thanks for responding to my posts about this. I come from a family of jocks and exercise and physical activity has always been a big issue in my life. Its early here in Atlanta, so I'm off to do walking. I've realized that if I do it early in the morning before I have time to get tired or start using my energy for other things that I can motivate myself to do it.

Maybe one day, people with MC, and just disabilities as a whole will come together, unified, and celebrate our differences and challenges, just as other minority groups do. My hope is that when that happens, an attitude or philosophy will develop that helps motivate each of us through the doubts we have about ourselves.

Who knows - maybe we could have a sort of Woodstock for people with disabilities, where disabled bands could play and accessible obstacle courses and mud slides could be set up so everyone could partake in a little "Celebration of Ability."

Type of Myotonia: Thomsen's

Country: US

Reading your message brought up a question or observation I've always wondered about. To me it seems MC might be harder for a man than for a woman (or boy and girl). I don't mean necessarily literally in the physical sense but in the emotional arena. Men/boys are usually expected to be involved in sports and to be strong. Women can get by without being either one. My brother has quite a severe caee, and I remember as kids having people question why he wasn't involved in sports, esp. basketball as he was tall. There was always a hidden undertone that he just wasn't masculine enough somehow. Anyway, just a thought.

Type of Myotonia: Becker's

Country: USA

I agree with that in a general sense. Of course it always depends on the specific circumstances of each family, but in my family it wasn't a big deal that my sisters, who also have MC, were not great athletes. It was a big deal that I was not a great athlete. It was a big deal with kids at school and it was definitely a problem for my parents.

I think part of what upset them so much about me was that I have a great arm and great eye hand coordination. I used to pitch on my baseball teams and could hit the ball very well when I wasn't stiff. They saw my potential and it killed them that I wasn't living up to it.

My father used to get so angry and say, "I see you running fine one minute and then the next you just stop."

Our society tends to judge men more on our physical abilities then they do women. Our society tends to judge women more on their physical appearance.
I love the big calves MC gives me, because it makes people think I am strong, so they tend to leave me alone. I know a lot of women with MC don't like getting big calves. Women are supposed to be dainty. I don't know how much of that is biological and how much of that is stereotype.

Type of Myotonia: Thomsen's

Country: US

Hi Jim - Your posts almost always make me smile, and of course, relate. I don't get angry easily, and I think that, since absolutely everyone in my life, from the time I was very small, and until I was 54 years old, told me there was nothing wrong with me, and that I was just lazy, clumsy, uncoordinated, a klutz, unmotivated and attention-seeking (just about THE furthest thing from my mind!!!), I just became a person who felt unjustified feeling any of the things I felt, and clearly a much less than adequate person. I somehow suspected that wasn't all there was to it, but since all the experts (meaning "adults") all brushed me off, and criticized me for my foolishness, I tried to melt into the background as much as possible.

I have always done meditation, deep breathing, and some forms of chanting. I really do think that staying centered, focused and on your purpose makes some of the external "noise" easier to dismiss.

As far as the calf thing - My calves are larger than most women's thighs, and always have been. They are rock hard, exaggerated, and while my thighs are also enormous, and are definitely fat, they, too, have muscles which confound people. Until my arm/hand injuries, my arms and hands were the same way - I could lift things most men couldn't. I had to starve myself during high school and college, just to look like a regularly chubby girl. Thank god there are some guys who like full figures, even if they don't know what they are full of! LOL. lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

I’ve enjoyed reading the posts in this thread, mainly because I’ve identified with so much of what has been written.

I exercise daily, nothing heavy, but I notice that it does have a beneficial effect on how I feel and how the MC behaves. However, I also recognise Jim’s comment about the mental challenge. I find it difficult to continue my exercise regime when my daily routine changes even though I know full well how it will impact on me. It’s very strange but often getting myself up and exercised is often more of a challenge than the exercise itself.

As to other people’s expectations, I’ve learnt to care only about the opinions of the people I care about. In this I’m in a different situation than most MC sufferers, I have Spina Bifida too and this has deformed my feet so that I require orthotic boots to walk. I suppose that this advertises to others that there’s something with me so their expectations are reduced accordingly. I still played sports at school when I was younger though and still enjoy watching them.

Jan made a comment about being angry with God and I certainly used to feel that way. I realise that not everyone is comfortable discussing spiritual matters but I’ve found a degree of contentment with regards to having MC by becoming a Pantheist. I don’t see my situation as the result of one of God’s mysterious decisions, I see it as a part of the process of life that leads to other people being great athletes, singers, intellectuals, etc. My muscles don’t work very well due to a mutation at a genetic level, but if that mutation had gone a different way I might have been physically exceptional or just normal. Being born is a gamble anyway and to be honest I’m glad I was born with MC rather than the Cystic Fibrosis that killed my friend when he was in his twenties.

I’m not angry at God anymore, or myself, or my parents for having the amazing luck to both be carriers and meet in a population of over 250,000 people. I get angry occasionally when I have one of those moments were my body doesn’t function properly and I’m left embarrassed, but I know not to hold onto the anger now.

There’s a psychology to disability that should be better explored by the profession.

Type of Myotonia: Becker's

Country: England

Pete,

I completely agree with your last statement. There should be more study of the psychology of disability. I think it would not only help those with disabilities, but would also help everyone else as well. And Lois thanks for your comment that my posts make you smile. I've never met you before, but I imagine that you are a rather positive and fun person to be around.

I've been reading Joseph Campbell's book, The Hero with a Thousand Faces, which is about the common steps hero's go through in stories from around the world. If you didn't know this, George Lucas followed Campbell's outline of the steps of the hero in developing Star Wars.

What Campbell points out is that for the hero to truly transcend and fulfill their quest, he/she must do two things: First the hero must die to the world from which she came. Her death is often a symbolic death in stories, but it always involves leaving the psychological mindset she has developed towards the world thus far. What is that psychological mindset? It is mindset composed of lies, all the lies she has told herself to help cope with the bitter and unpleasant realities of life.

Sometimes these lies tell her that life is terrible, and so the negative events in her past drag down everything else; and sometimes the lies are lies of denial and she is unable to recognize her faults.

For the hero to ultimately reach her goal she must be able to see the world as it truly is-neither all darkness or all light, but both. As the hero begins to see the truth that the world is both dark and light at the same time, the hero begins to live in the world of reality and leave the world of fantasy, because the only way to move forward in life is to deal with reality.

Our world in it's true nature is dualistic, a blend of opposing forces that balance each other out. Once the hero is able to accept this and stay in the center, without being pulled in either direction, then and only then may she fulfill her quest.

I guess my point is that having a disability is much like being a hero. I believe in my heart of hearts that there are untapped positive forces associated with disabilities, which the world has not yet learned to recognize. I hope one day the world will learn to see that positive side that balances out the pain, anger and frustration that is often associated with disabilities. I think the profession studying the psychology of disability would be a good first step. I think it would lend validity to those positive aspects of disability.

Type of Myotonia: Thomsen's

Country: US

Wow, what an excellent post Jim!

I agree with what you said. In many respects my move from Christianity to Pantheism was a kind of death and figurative re-birth as you explain it. I never found an answer in Christianity as to why I was born this way and it left me somewhat bitter.

Moving onto a form of belief that was inclusive of both me and my disability has helped me to come to terms with it as a reality of my life and not as some unexplained judgement. I must stress, that this is purely a personal opinion and not intended as a criticism of any practicing Christian; to each their own!

When I was at college I knew someone going onto study Psychology and we talked about the impact of being disabled; I think that she went on to write about it as part of her dissertation. I’ve always found it curious that you can have counselling for being in a car accident but no one thinks that being disabled can lead to a person suffering traumatic experiences; such as when I fell off a moving bus because the driver expected me to be able to jump!

As to the positives of being disabled, well the cynic in me wants to treat that with scorn, but the realist recognises that there is some truth in it. For instance, I’ve become a very observant person because I’m always on the look out for trip hazards. As a result I see things that most people seem to miss, something that my wife frequently comments on. I’m also quite inventive as I’ve had to find new ways around routine problems simply because I can’t always rely on my body. Necessity, they say, is the mother of invention and no one needs invention like a disabled person trying to live a ‘normal’ life!

Type of Myotonia: Becker's

Country: England

Thanks Pete. Yes, Campbell calls the acceptance of reality the acceptance of responsibility, and it is a necessary step in moving from the consciousness of childhood into the consciousness of adulthood. Every instance in our lives where we are unable to let go of what he calls "infantile" fantasies, we are unable to move forward to the next stage of our lives.

Since accepting the grim truth of reality is often not easy, with its many painful experiences, Campbell says people need to incorporate into their lives the positive buffer to all pain, which is love. This "love" is different than the childlike love a child has for their parent, for it involves loving someone or something that is outside of oneself. Hence when people say that "love makes all things possible," what they are really saying is that any obstacle, difficulty or strife can be endured if a person has love in their life. I never would have believed this until I met my wife, because I am able to handle things I never thought I could endure, simply through my love of her.

So for the hero, she is able to face the scariest of all challenges, because she has love to get her through it--this is why there is often a love interest in adventure stories.

This is also why people with disabilities have the potential for greatness. Not only does facing difficult moments make a person stronger, much like the extreme heat of a fire pit can forge ordinary metals into steel, but also, facing difficult moments requires great love, and the more love a person has in their life the more powerful they become. Great love counters great pain, and then we as people are able to move forward in a balanced, peaceful manner in whatever direction life wants to take us.

It is my own personal belief that without great pain, great love is difficult to obtain. That in a magical sort of way is the gift of disability.

Type of Myotonia: Thomsen's

Country: US

Not sure how to deal with the anger though it does affect me. New to this forum seems very strange to talk about this disease, as a family we seemed not to talk and just get on with it, replied to this message as the 5th is my birthday, just caught my attention.

Have a bloody good drink pal and just remember there's people a lot worse off than us, Ha Ha, seriously though not got any tips, sorry.

Type of Myotonia: not sure

Country: England

Type of Myotonia: Becker's

Country: England

I would like to respond to both of the prior posts, since I see the point in both and agree and disagree with both.

I grew up in a family that was in the medical profession, as a result I was diagnosed with MC Thomsens when I was three at the UW Madison medical complex. My father, a family physician picked up that something was wrong when I started to walk... or at least tried to. Every Doctor I have been to ever since has taken a keen interest in the MC and done independent research to get the newest information on it.

So, I have been living with the knowledge of what I am and have; since a very young age. My parents were always open about things since they told me from very early on that I was adopted so there were never secrets. If my father thought I was doing something that might cause the MC T to bite back, he would tell me.

I experienced the anger of not being able to compete or even try some things... I recall the rope climbing exercise back in 2nd grade. Absolutely failed at that, and ya it made me angry. Because I was a child and did not understand.

As an adult, I am not sure where that all goes now. I don't get angry about it anymore, seems to be a waste of time for me. I actually joke about it more than anything. Somewhere along the way, I found that cracking a quick joke can be an ice breaker and also put people at ease with a disability I can not explain to them in simple terms. They figure if I am ok with it, they can be too.

My nickname has been Gimpy since before there was Pulp Fiction and something actually called "The Gimp" - there is no correlation as I do not like black leather and will not live in a box because it would take me forever to get out of it.

I think a lot of the anger is based on how you perceive your reality. After about the age of 18 I really started having a 'Meh' attitude about it. The disability, but not the idea of it. Because of that I completed my undergrad in Biology/Genetics. I have always had an interested in what makes me and humanity tic.

So with that I can say this, I am not naive about MC Thomsens, but I have found that the level of happiness one has does directly correspond to one's ability to move. Negative emotions impact MC - depression, anxiety, and fear.

So in the end it is very easy to get frustrated, but at that point sometimes it is best to just take a step back and have that drink or whatever relaxes you and move on.

As my father always told me, "You are only as happy as you want to be." I believe that to be true and always will.

Type of Myotonia: Thomsen

Country: USA