MC- the fatigue, stiffness, weakness, and pain

The good:

I now have true heart-felt compassion followed with deeds that help those who hurt.

Peace - A closer walk with God. Relying on HIM and not myself.

Courage - I stand up for myself. I am my own advocate.

Joy - I am an instrument. I allow people to help me and thus THEY learn the meaning of joy and goodness and usefulness.

Appreciation - for all that I physically can do.

Privilege- a special advantage granted to me to know all of you.

I thought that I had excepted the fact that for my entire life I have had something wrong with my muscles.
I have had to deal with the limitaions and the hiding it from everyone I knew (except family) and even My family never spoke about it or treated me as though I had a disability.
Since my official diagnosis in Aug.2006
I have finally asked the question "Why Me?"--- "no one else in my family has it".
And I also have to carry the guilt and worry that I have passed this disease/disorder on to 3 of my children. And do they look at me and wonder..... "Am I going to be like that too?"....... Just that alone breaks my heart.
Also I ask and wonder" why now at the age of 39 is this disease/disorder brining me to my knees?

Before Aug. of 06' I lead a fairly normal life. It's as though this disease has taken all that I have hidden for all these years and brought it to the surface with a vengenious.

My Husband moto's are--- "What comes around, goes around"... and I ask him "why does it always seem that it "goes" but never "comes?"

And He also says... "God will never give you more than you can handle".... I keep that one in the back of my head and try to stay strong......Because I admit I have aloud this to break me down......and break me down in the worst possible way. I wish I could retain my ability to be strong, independent and positive..... I no longer poses though's qualities.
So, I ask God PLEASE dont give me any more....because I truely can not handle it.

It is very sad to say but I am at my breaking point, or maybe I have already been there I am not so sure.

I tell my Husband I feel as though I am in a big dark hole and I dont know how to get out. This disease has caused me to have to seek mental therapy...something I never thought I would have to do.

So, To your point "Everything happens for a reason"

I am ready to hear that reason.

My entire life turned upside down in a day. And it continues to remain there.

Beth,

I'm so sorry your condition/conditions have had such a profound impact on your life. Were you ever able to get the DNA testing for myotonic muscular dystrophy or paramyotonia? Just an EMG diagnosis of myotonia isn't enough to tell you what's really going on...I'm not sure why your doctor would assume Thomsen's when no one else in your family has symptoms.

Many people with period paralysis (like hyperKPP) tend to have a trigger point in their life that they can look back on and say that's where they really started getting worse. For some it's exposure to an anesthetic like Lidocaine, for others it's insecticide, etc. That's usually not true for MC unless you have a massive exposure to 2,4-D (an herbicide which damages the chloride channel). Myotonic dystrophy also seems to "take off" at some point. MC on the other hand is much more of a steady state througout your life, sometimes showing up in infancy, and sometimes around puberty.

It would be easy to tell if your children inherited whatever myotonic disorder you have by doing an EMG. The myotonic discharges will show up even if they have no symptoms.

I hate to see you suffer for lack of a firm diagnosis, but many of us went most of our life without knowing for sure what was wrong so we understand.

Jan

Beth,

I am truly sorry you are going through this period in your life, but I also believe that there is always light at the end of the tunnel. Your life will probably change and you may come out the other end a slightly different person.

I, like many others, who visit this site have gone through similar experiences and have come out the other end not just a different person, but a better person--a stronger person.

To use another analogy, the disease (whichever disease you have) is like a clam shell that is constantly applying pressure, so much pressure that it seems like it will crush you at times. But I believe the human spirit can endure anything that life throws at it, and the more intense the pressure the more beautiful the pearl.

When I was growing up and things would get so bad that I didn't think I could go on, I used to ask myself, "Is this all for real--this is just crazy?" I often wondered if there was any point to it all. I thought "If I am going to feel this bad for the rest of my life then I don't know if I want to stick around too much longer." Two things got me by.

The first was the belief that despite all the things that were happening, God had given me a gift that would eventually be used to affect many people's lives. I just needed to hold on. I didn't quite know what the gift was--I just had hope that it was there, giving my life some meaning.

The second thing I learned to do was to manage the worst times. When things got unbearable--to the point that I could hardly move--I chose just one small thing to hold onto. Whether it was my family, or God, or my dreams I would just hunker down and hold on to one small thing. If I appeared weak in other's eyes, so be it. If people rejected me so be it, but I would not let anyone discourage me from holding onto to that one thing. I have found the resolve one builds when it seems like it is impossible to carry on has the power to move mountains. If you can handle life at its worst, think how much stronger you will be when your life is at its best.

Jim that was a beautiful thing you said about the pearl..i'll allways remember that,also yes i think this condition does make you more stubborn and tenatious(i think that's how you spell it) and Beth i know how you feel about the guilt you feel for maybe passing this( it does sound more than mc by the way) to your children,i have passed it on to my only child,i look at him,slowley climbing the stairs and i feel very guilty,he never complains and he's never said a word about maybe i should have thought twice about having children,when i knew full well the chances were 50.50..How selfish does that make me....and now the double wammie..grandchildren...I have put Daniel in the same position,should he have children?..
Goodness me we are getting close to the nitty gritty are'nt we,but we can discuss these things between us cant we?things no,one else wants to hear really . x x x from UK.

I don't think any of us need to feel guilty for passing this on genetically...people pass on genes for cancer, diabetes, heart disease, and all kinds of other fatal conditions every day and we don't try to make them feel guilty.

Two of my daughters inherited the MC from me, and they both had children knowing full well that there was a 50% chance of passing it on to my grandchildren. I asked one of them if she wished she'd never been born and she looked at me like I was crazy!

This is really not a terrible condition to have to deal with. I guess if you don't have any other health challenges it might seem like a lot, but it's all in our perspective. I would gladly take MC as first choice over my three genetic conditions if I got to choose just one!

It would be nice to know what "normal" feels like sometimes, but we just have to take a detour around normal and find another route to happiness and contentment :-)

Jan

Amen! This was so nice to read. I guess I haven't thought about how I feel about MC for a very long time. Although I do not hide it, I also do not write it on resumes or job applications--it is just part of my life. Of course, I don't apply for jobs that require swift speed or agility! When I have a "bad" muscle day, I just let people know I have a muscle disease that sometimes makes me stiff. I do remember thinking that it would be nice to know how "normal" people felt, but I no longer feel that way. I believe it is my "cross to bear" and does help keep me humble. I also helps me to be very greatful that I don't have something worse! I am not wheelchair bound, or bed bound. I am healthy, active, etc. I do get tired easy, I do hurt, but I am used to it!
Thanks to all of you who have been so open and vulnerable with your feelings. It has been a blessing reading the posts!
Jill

This statement can mean many things. In this example, though, I think it has a postive meaning.
One of the great questions in humanity is "Why do bad things have to happen to good people?" And this question has many possible answers.
1.Sometimes the challenges that are given to us are tests of our strength and our character. We are challenged to overcome vast obstacles to prove to ourselves (or, depending on what you believe, forces greater than ourselves) we can conquer and succeed.
2.Sometimes there are lessons we must learn in our struggles and our battles. Not all lessons are learned from books or come the easy way. The ones that hurt the most often leave the deepest impression. In our case, we can learn how to push past what holds us back and to feel for others who hurt, too.
3.We all have a purpose and a meaning in our lives and maybe what we have been through is a part of that purpose. There have been many people who have survived illnesses and ordeals and swore to protect or heal others from the same. For them, their experience is part of their life's purpose.
4.And then again sometimes there really is no reason. Natural disasters, freak accidents and genetic conditions can all seem like random events. If this is true, the person who defines themselves by what they can't control is punished twice.
No matter what happens to us or why, it is better to live our lives for the purpose we have and to enjoy the things we do have than to worry about the things we don't.

As Jan said, there are MANY very much worse disorders which are genetically linked, which don't stop people from having children - and some SHOULD! For instance, Tay-Sachs, sickle cell anemia and hemophilia. Those are truly hideous problems that should cause carriers to tie their tubes and adopt! But something that doesn't stop one from living independently, having a full education and fulfilling career, an active and interesting life and family - this may not be a whole lot of fun, but it certainly is manageable. As a "sufferer" and as an RN, I can't see any reason why this condition alone should cause anyone to not have kids. (And believe me, I don't have a mild case!) lois

I am often reminded of a story I read about a couple whose new born had a disease that took the child's life after her first birthday. Despite all of the strife, when asked if they would choose to have the child if they could go back and do it all over again. The couple responded with an immediate and definite yes. What the child meant to them and how much she had affected their life in that short time period was worth so much to them--perhaps more than anything else they had experienced.

And when I thought about the child would said if asked the same question--I believe she would have said yes as well, for the love her parents poured over her seemed priceless. Perhaps in ordinary circumstances we take for granted the ones that we love, but in this baby's life this was not the case.

I am also reminded of those who live a long life without any disease but who are bitter, wind up in jail, or addicted to drugs. I would rather have the most painful disease on earth than be afflicted with the desire to kill people, as a serial killer is.

I try to remind myself of the old adage, quality is usually better than quality. What is it about the circumstances of my life that provide the potential for a great fulfilled life? I know why it is hard. That is not a question I ever have to ask myself--outside of therapeutic purging. What I am really interested in is what has my life provided me that will enable me to improve the quality of other's lives in the most effective ways. I think that is part of what makes people happy.

truly decent and honorable sentiments. : ) lois

I know it's pretty late in response but I just got here recently. I was slowly reading through all the wonderful responses and they truly are hearwarming and encouraging.

Truly what you guys have here is really special, it is hard to find a group of people so encouraging, welcoming and sincere and coming from all over the earth. For a moment it makes me feel that the world truly has a hope. I wonder if anyone remembers an old Anne Murray song titled "A little good news today" (I think).

Don Moen a great gospel singer has a really inspirational song that goes like this...
God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength
For each new day
He will make a way, He will make a way.

I'll usually hum or sing it when I'm feeling particularly low in spirit due to the many things that comes our way. All we have to do is BELIEVE.

Beth, I hope you're feeling better and you really have great friends here and they're all rooting for you.

Charles wrote:

Truly what you guys have here is really special, it is hard to find a group of people so encouraging, welcoming and sincere and coming from all over the earth. For a moment it makes me feel that the world truly has a hope.

It is from people like us that great things can happen. There is something about this condition that is so unusual and mentally and emotionally challenging that I think it really does bring out the best in people.

When I read your post Charles, I feel the same way I do when I see a truly inspiring film, like Being There with Peter Sellers, or read a great work of literature, like Night of the Iguana by Tennessee Williams. I am not familiar with the song you mentioned, but I am going to listen to it so I can see what you mean.

In Being There the mentally challenged character of Chance "the Gardner" is touched by some sort of angelic presence that just enables him to have the right affect on everyone. His magic is that he is inspirational--his method is his simplicity. When he walks on water at the end of the film, it is so moving because he is the last person in the world you would ever think could do that, but you know what they say about "children making it into heaven."

I believe there is something to that, and I also believe that in a spiritual sense people play different roles in this world. I think our role is much like Chances, to inspire, because inspiration comes from two places. First, it comes from a fresh perspective (and our perspective is about as fresh and unusual as there is) and second it comes from people who endure hardish and come out better because of it.

I think what bonds us together on this site, is that we are all like aliens who have been out on these cosmic journeys our entire lifetimes, and then we have finally found others like us. There aren't that many like us, but that is part of what makes it significant.

I am not Buddhist, but I have read a lot about Buddhism, which affects the way I view the world. When it comes to reincarnation, I often imagine that I was a great religious leader in Japan in a previous life. I imagine that people admired me and almost worshiped me in the way people tend to worship religious leaders. I imagine that I was very rich and very well respected. However, I imagine that at the end of my life, I wished that my next life would challenge me more--would purify my soul to a greater degree. And, as a result, I chose to have Myotonia Congenita.

I just watched Harry Potter and the Chamber of Secrets yesterday, and at the end Harry Potter asks Dumbledorf why the Sorting Hat said that he could go into Slytherin (the aggressive, evil group). Dumbledorf tells Harry that the sorting hat saw some of the characteristics of Slytherin in him--ambition, resourcefulness, ignoring the rules--but in the end the hat put him in Gryffindor because Harry asked to not be in Slytherin. Dumbledorf's reasoning for this is that Harry chose to be in Gryffindor--and that we are a combination of who we are born as and what choices we make. I guess I believe that people who are challenged by life are given a grander, more informed perspective to make better choices than others--or perhaps they have more passion about those choices and will go further with their choices than others. That doesn't mean that those choices will always be good, sometimes they may be worse than the choices that other's may make, but if we keep trying and improving those choices may just prove to be exceptional.

I know I am going on about this, so please close this if you've read too much, but on the day I die, I just want to look back on my life and say that I made exceptional choices and in the next breath I want to be so very happy that I have Myotonia Congenita--I want to close my eyes and just thank God for allowing me to have it--or however that all works out.

Kindred spirits I think would be an apt description of what we are and myotonia binds us all together.

On a positive side, we're a pretty exclusive club here :) LOL

this is such a great thread...