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Re: Hello, I'm New!

Hello Amber!

I think most MC sufferers feel like they are alone in the world with this condition.

This forum is something of a haven!

Type of Myotonia: Becker's

Country: England

Re: Hello, I'm New!

Hello!
I would like to tell my own story of my life with MC. First I hafty say that my english skills are not so good as I hope, but hopefully everyone get a point.
I´m 21 years old woman from Finland (a country where the Santa is coming from) My first memories of MC is suprise suprise not nice. I was a 4 years old girl and I falled to ground every time, when I had sit on a chair a littlepit longer. I was very affraid when I saw stairs. Then my mom started to be anxious and we went to a doctor. The docktor and mom toud to me that I had some growningpains that I hafty just stretch ( I can still remember that pain, I cryed and mom forsed to continue) and have some exercise. In a age of 7, I started a school and then the real MC Hell ( as I call this) started. I was totally horrified! I was afraid every day, expecially when teacher returned our exams, beacose it meaned that I hafted to stand up quikly and pick up my paper from front of the class. I never wanted to sit next to a door,beacose if someone would come late,it was I who`s hafted to opened it. And our gym teacher was therrible woman! She forsed me forexample to run, to swim even though a get gramps and I was afraid that I`m going to drown. I started to hate spring, beacose it meaned that athletics started. I started to lay to the doctors,parents and friends that I`m allergenic to chlorine water etc.. No one didn`t know what was wrong with me, and I get depression. I remember one day very clearly. I cant remember what had happened earlier in that day, but I remember that I was very sad,ashamed and I cryed hole day. In the evening I went to the Sauna ( a hot room in a badroom where finnish peoples are washing)and I was so angry to my self and to my legs beacose those hadn`t worked, so I started to hit my feets with a metallic bail. After that day, my mom take me to the doctor again and forsed them to check my legs better. It took 10 years, but in a age of 14 I get my diagnos. I was relieved but in the sametime chocked. I had allways thought that an surgery can fix my legs. After that, I joined in a finland`s muscle disease federation ( www.lihastautiliitto.fi) and started to create connections to other peaoples some had a some kind of muscle disease. I had get my life`s greatest friends and soulmates from there. We have a every summer a rehabilitation and it`s always a highlight of a year. And I hafty clarify that my friends doesnt have got MC, they have dyschenne etc..
The present day. I dont know if I can say that this all is OK to me, I still hate this, but somehow I can say that this diase have gaved to me so much. A great friends and a larger worldview. I have tested mexitil medicine many years ago, but I didn`t wanted to continiue that and today I dont use medicines at all. I use (one) crutches to help me not to fall and sometimes a wheelchair. If I hafty walk long distances my legs get very aching that only sleeping helps. It`s hard to tell peoples of MC beacose those cannot often understand why I can sometimes do many things and sometimes I sit on a wheelchair.
Injurys. Those I have had a many!! meaby the creepyest thing has been a shopping journey with my mom. I had weared a shoes where were a VERY LITTLE heel ( 2cm meaby)and we went in to shop were was a mat. My heel stucked a littlepit on it and you know the rest. There was I lieing on a floor BUT the floor was a made from stone and I hit my head on it. I was stunned a few minutes and when I "woke up" I started to cry like a little child beacose I was so ashamed and I was also drag down one of shops shelfs.
That was my little story
Creetings from Finland! Here is a very cold autumn now, oh my muscles love this coming half year

Janica

Type of Myotonia: Becker

Country: finland

Re: Hello, I'm New!

Janica, Thank you for sharing your story. You've gone through so much with this disease (or do we refer to as a condition?), and it sounds like you have achieved great confidence and sense of community, which help us survive hardship.
I wish you the best of luck!
Take care,
Amber

Type of Myotonia: Becker's

Country: USA