My Personal Roller Coaster

Congenital Myasthenic Syndrome

Part I

MY PERSONAL ROLLER COASTER:


(An overview of my thoughts on growing up with a rare disease nobody could diagnose and nobody understood)

Wow. Where to start?

First let me say how strange it feels to be pouring all of this out there. I spent two decades trying to hide my disease yet at times, it was obvious despite my best efforts…

I did NOT want to be different. I begged and pleaded with myself…and every day, multiple times a day, I prayed…

Fast forward to age 40.

I’m a totally different person. I’m so much stronger both physically and emotionally.

I no longer feel broken…

I was watching the movie “The Fault in our Stars” and there’s a scene where the main character tours the Anne Frank house. She has cancer and she is weak. Despite her will and desire, her body was failing her…she looked at the stairs ahead of her. They seemed impossible to climb. I’m that situation…when your body fails you and you feel it is impossible to move forward…Those stairs could have been replaced with Mt. Everest and the climb would’ve felt like the same challenge…

Her emotion was so familiar. The obvious internal struggle and frustration with her failing body was so familiar. I cried. Her movements and her frustrations were once mine. It brought me back to my struggle growing up with a disease nobody understood. It repeatedly stole my strength at the worst times…with no warning…with no regard for my hopes, dreams or plans…

Her emotions…her slow and deliberate movements…her obvious struggle trying to convince herself to make her body do something it fought hard against her not to do…to try to climb those unforgiving stairs, even if she had to crawl! It was so nauseatingly familiar to my pathetic journey. I felt my chest tighten, I bit my lower lip trying to delay the inevitable…but the tears just starting flowing.

Really? Get yourself together, Terra! That was like 100 years ago! Yet, it was such a huge part of my life… struggles being on an endless roller coaster of body strength and sudden crushing weakness… a constant battle  for so many years.

I never knew life to be predictable. I never knew life to be enjoyable for the moment. No. Because if I enjoyed an activity too much, I would exert myself too long, burn up my energy and I’d soon come crashing down again. So, I was constantly calculating when my next crash might be… When I’d wake up and feel so weak I’d want to cry getting dressed, doing my hair and walking two short blocks to school…

I wanted control over my body and I had none.

Sometimes it hits me. I had a tough childhood FULL of anxiety. I never called it anxiety. I don’t think I really knew what anxiety was! But I know now, it consumed me. In fact, I feel anxious just writing about it.

My days were FULL of endless calculations. How much I should move…how far I should walk…how many stairs to climb…which friend’s house to walk to to play (who lived closer? Because walking further wasted playing time for my muscles!)…how long I should swim…how much can I carry in my arms…my friends are walking to the mall after school. I’m invited… Omg! I’ll never make it! But, I don’t want to be left out! …how many stairs can I climb before my knees buckle and I have to cling to the handrail?…how far can I walk without falling?

And once my limit is reached, my muscles begin to give out on me… I can’t undo it…I panic…who is watching me? I’m going down…

I need to pretend to sit and tie my shoe for a break because my legs feel like jelly, they are shaking and won’t carry me a step further without collapsing underneath me?…

Who are my real friends who won’t laugh at me?

Who will help me up if I fall?

If I do this today…it’ll be a few days or even a weeks before I can do it again. I want to cry.

A kid shouldn’t have to constantly calculate every body movement! It’s exhausting! However, it was a necessary part of my life growing up. I failed so many times. I just wanted to fit in. I was so weak. I was nauseous with fatigue and burning muscles trying to do normal things like walk home from school with a friend; do my hair; walk from English class to history class…stand for the duration of my choir concert…hold my violin for the entire concert…just trying to raise my hand to answer a question required two hands…one raised and the other one bracing it to keep it from falling and then the nausea and jelly feeling sets in and my shaking, burning muscles start screaming at me before I even get called on.

I would be waiting at the bottom of the stairs after lunch as all my classmates passed me, rushing back to class on a weak day because there was three stories of stairs to climb in front of my classmates! How will I do it without giving away my secret!?? I don’t want anyone to see my struggle. I don’t want them to see me fall.

I was sweating and nauseous pulling myself up those stairs… Begging and pleading with myself not to collapse in front of anyone! I can’t! I won’t! But I did. More than a few times. When my body failed me in front of someone, I wanted to disappear… I wanted to not exist.

I was miserable.

I was so completely miserable.

I’d beg and plead with my mother each morning when I knew that I had gym class at school. “PLEASE! Please, let me stay home until after gym class!” I hated it. There was nothing I hated more than the stairs at school and gym class…

We had no answers as to why I had a roller coaster of strength and weakness. What was happening to me? How could I feel somewhat normal one day and then be so incredibly weak the next day? I never knew how long the weakness would last? Would it be one day? Three days? A week? Your guess was as good as mine! One day I could walk two miles, run a little bit at recess, navigate the monkey bars…Then, the next day I couldn’t walk across the room without nauseating weakness… Weakness that would suddenly rob my ability to walk without feeling like I was going to fall, to climb stairs, to lift my arms above shoulder level, to scratch a mosquito bite on my arm…every little movement was a chore. Like I Was weighted down by tons of bricks.

My muscles felt like jelly. I knew the potential for strength was in there somewhere! What the hell? It was there the day before! But no matter how hard I tried, I couldn’t get my muscles to do what I wanted them to. Things they did easily the day before.

I’d have to prop my elbow on the bathroom sink to brush my teeth…I had to lie down on my back to get my arms above my head just to put a ponytail in my hair! …I had to crawl up the stairs in my house to get to my bedroom.

When I was little I’d beg my daddy to carry me to bed at night. I think my parents thought I was stalling bedtime, but sometimes I truly dreaded the climb up two flights of stairs!

It was terrifying. To know your body will suddenly give out on you and fail you, over and over and over again… It wasn’t ever IF I’d crash and become weak…it was always WHEN… The roller coaster was constantly in motion. The momentum always brought me down. There were no ups without dizzying drops and sickening weakness.

Nobody knew why it was happening.

Nobody knew how to fix it.

Nobody knew how long it would last.

Constantly fearing the next time it happened…what if it never gets better and I’m weak forever this time? It’s so hard to comprehend something like that as a child. I just wanted to be like everybody else.

Swimming was something I loved! But I knew when I got out of the pool, I’d be jelly. I would have a hard time getting around. Heat and the cold of winter exacerbated the weakness, as well.

I did everything in my power to hide my weakness on my “bad days”. I didn’t want to be different! I didn’t want to stick out! I wanted to disappear. I wanted to make it better.

I remember asking to be carried long after a child should be carried… I remember doing “strong man carry” with my dad when I got tired. He’d extend his arm, and bend at his elbow. I’d grab onto his bicep like a monkey and hang onto it as he walked down the street. My feet tucked up so I didn’t have to walk… Bless his heart, I had to be heavy! But he’d carry me like that for blocks down the streets of Chicago…and even Washington DC, Philadelphia, New York…

My disguises to fall to the end of the line or to take a quick rest when I felt the roller coaster crashing and I didn’t want to collapse in front of everyone and be teased…

I stopped to “tie my shoe” thousands of times, because my muscles were failing me and I was about to collapse. I pretended to tend to a hurt knee or foot to let me stop and get a little rest and to ensure my “safe” position as last in line so nobody could watch me struggle to walk or pull myself up the stairs…

Please, any excuse to get me out of sight where nobody would be able to stare at or make fun of my struggle.

Anytime I tried to explain my terrifying symptoms to a doctor or specialist, they failed to comprehended the fluctuations in my strength and abilities. Nobody seemed to understand it. My family knew I had difficulties…but I don’t think they grasped the severity of my roller coaster of weakness and the toll it took on me…

What was it like when I crashed and my muscles stopped working?… This is how it felt:

Nauseous

Head spinning

Ears muffled

Heart pounding so fast

Tears welling

Arms and legs tremor with exhaustion

Arms and legs feel like dead weight and wobbly like jelly…

I hated stairs.

I hated walking home from school.

Push!

Push harder!

You’re ok! Come on, you can do it!

Omg. I can’t do this. I want to sit and rest but I’m scared I won’t be able to back up.

Stupid backpack! It’s so heavy. I feel like I’ll collapse at any moment.

I used to leave books in my locker at school so I wouldn’t have to carry them home!

Remember. Always calculating every step. Every bit of energy I used was carefully calculated. So, I copied math problems from my heavy text book into my notebook…I copied anything could during class when I was supposed to be listening, and did as much as I could during study hall and then I prayed I wouldn’t need my book to help answer a problem at home. How was I supposed to carry my books when I was feeling sick under my own weight. I didn’t even want anyone to touch me, for fear I’d collapse.

Back of the line.

Last one out.

Last one there…

When I had no choice but to keep moving forward and I knew a collapse was imminent.. I had to push hard on each thigh as I took steps to try to prevent my knees from giving way.

I don’t want to fall.

Please God, don’t let me fall…

Please God. Help me.

Please God. Let me off this f—ing roller coaster!

I rode that nauseating roller coaster until I was 25 years old… Then something totally amazing happened. I started another desperate search for answers after hitting rock bottom and a neurologist finally had a name for my disease…and the true miracle appeared…he had a treatment!

Stay tuned…

Join me for future excerpts on diagnoses, treatment, bullies, raising awareness for this rare disease…and much more!

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12 thoughts on “My Personal Roller Coaster

    • I’m sorry you are going through this with your son. Luckily they know so much more now than they did when I was young. Even so, CMS did not stop me from pursuing my career, having a family, traveling, etc. I live life to its fullest 🙂
      There are resources and support for finding others to talk to who understand!
      Hugs for you, your son and your family. Thank you for visiting and commenting.

      Like

  1. Terra. Wow. I just read my story in your blog. I know all to well the struggles you endured. I thought about doing a blog before. So happy you have started one and how brave of you to share. It’s inspiring!!!

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  2. Wow , it is really true life with CMS..Terra can you tell us what type of CMS you have and what is your treatment?when you were diagnosed?

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    • Hi :). Thanks for commenting.
      I will cover all this in later blogs, but to answer your questions, I have the Dok7 form of CMS. I was first diagnosed with CMS in 2001 when I was 25 years old. It was diagnosed by EMG testing. Since albuterol was working for me, I did not do the genetic testing to find out the exact form of CMS until last year!. I finally did the genetic test because I was having medical issues (chest CT found a mediastinal mass/thymoma and I was having heart palpitations) so they needed to see if I had MG instead of CMS (MG which is commonly associated with thymoma) and also to see if I could take something besides albuterol for my CMS since I was having skipped heartbeats and racing heart rate…). I did genetic testing and found out I have Dok7 CMS. So that means there are no other known treatments besides albuterol available to me.
      That’s the short version of it! More will be explained in future blogs. 🙂

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  3. Thank you for posting this. It helped me understand the fears and frustrations my children feel with CMS. Did your doctors ever put you on Mestinon? That’s what was prescribed for both of my children.

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    • I am so glad this helps you with your children❤️ hugs
      I tried Mestonin first, because my neurologist was not sure at the time if I had myasthenia Gravis? Or CMS… Mestonin did nothing for me. So, then he tried Albuterol and it worked!!! 😊 I now know for certain I have Dok7 CMS and albuterol is definitely the best treatment for that form of CMS. That is not true for other forms…some respond better to other medications.

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  4. Pingback: Symptom 2: Fluctuating Muscle Weakness | Sometimes I Am Weak But I Am Not Broken

  5. You just described my childhood pretty well. I had no idea what was going on with me. I thought it was all my fault. I could not understand why I was so weak. I always wanted to climb the rope in gym class. Never could…and was made fun of unmercifully. I’m 60 now. Thanks for writing your blog! 🙂

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    • I dreaded the day the gym teacher let down the rope! Everyone could at least MOVE on the rope! No matter how much I pulled, I couldn’t budge… Lol
      I also hated chin-up testing! Ugh.

      Thanks for sharing. It’s so interesting to see others who had similar experiences when I felt so alone at the time…
      Hugs!

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  6. Pingback: Garbage Diagnosis | Sometimes I Am Weak But I Am Not Broken

  7. Pingback: Just keep moving… | Sometimes I Am Weak But I Am Not Broken

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