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Re: Pain and Anger

Matt Galvin
Have a bloody good drink pal and just remember there's people a lot worse off than us, Ha Ha.


That strikes a note with me!

Seems to sum up most of the attitudes I've encountered from people who are usually ignorant of what having MC can actually entail. That includes a surprising number of the medical profession too!

Type of Myotonia: Becker's

Country: England

Re: Pain and Anger

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