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If you can’t fly. Run.
If you can’t run. Walk.
If you can’t walk. Crawl.
But by all means keep moving.
~Martin Luther King Jr.

Nothing about a new diagnosis is easy. There are so many questions, so many fears, so many life changes that happen. When our family got the Long QT Syndrome diagnosis, I can’t even begin to explain all my emotions and that doesn’t even include what my 9 year old was feeling. A life- threatening diagnosis is scary!  Hearing the doctor say to get an AED for a safety device is scary. It takes time to process and come to terms with this new process so don’t let anyone push you or make you feel like you shouldn’t be scared. We may look normal, but we still have this rare disease.

We are a very active family. So what did this mean for us? At 38, I was in the best shape of my life. Physical activity is one of my biggest joys. Would I have to change who I am? When I first saw the EP, she stated that until I had all my testing done, I should limit my physical activity until they could give me more answers to ensure my safety.  On top of feeling scared, I was angry. My once 4:30 am alarm clock to get my workout in was put on pause. My workout doesn’t only make me feel good, it is my stress reliever. The next couple weeks were a blur, but one thing I know for sure is I must have been hard to live with. I was emotional, scared, starting to get depressed and just plain miserable.

I had all my testing done and the doctor cleared me to become active again. I just needed to take my beta blocker and keep my heart rate below a certain level. Yay! I should have been excited right? Well, I honestly let what the doctor said go in one ear and out the other due to my own fear. Did the doctor know what she was talking about? Was I really safe? What if I died just because I wanted to workout? Was I being selfish? So I put my life on hold! I stopped being active and stayed this miserable person that even I didn’t like. Don’t get me wrong, to the outside world I put a smile on to pretend I was ok. I’m not sure if they could see through me or not.  I went through our everyday activities and tried telling myself I was ok, that I could find the new me. But I didn’t even know who this scared person was anymore. I still had daily responsibilities and had to be a mother and wife.

On top of finding me again, I also had a 9 year old that was also just diagnosed with Long QT Syndrome. I had so many different fears when it came to thinking about her living with this new diagnosis and this made me even more terrified. Will she live a normal life? Will she become asymptomatic? How do I protect her?  She was also scared. I put on my big girl panties and acted tough for her, telling her it will be ok! Our medicine is keeping us safe. These were all the things I was having a hard time believing myself.  I tried many times to get a low impact workout in to see if I could start feeling like myself again. However, my beta blockers were having a major impact on my performance when exercising. I felt sluggish and nothing like myself whenever I tried.  As I continued, I started to feel sorry for myself I felt gross in my own skin. I didn’t even know how to snap out of this. I became even lazier not wanting to even try to be active. What do I do now?

Luckily, the weather started getting a little warmer and my husband could get me out of the house for a walk here and there. One Sunday, he even got me to bundle up and go for a short bike ride. For the first time in months, I felt like myself again. Even once we got home I felt good! I had ordered an AED and was waiting patiently for its arrival. In the meantime, I messaged a girlfriend that had always been my workout buddy- we would always help keep each other motivated. We hadn’t talked in a while, I was avoiding it and honestly feeling a little jealous that I couldn’t keep up anymore. We chatted I asked what program she was working on, just a few messages back and forth and I wanted to try again.

The AED arrived and something inside of me clicked. This isn’t me! I am NOT a quitter. Just because I may not be where I once was, or may need to scale it down to start, didn’t mean I should stop. So I picked myself up and started! That’s all I could do was start. I was still scared. I started slow. Walking more, yoga, weights. I’m not going to lie, it is hard. I know there are a lot of arguments about if beta blockers impact exercise performance and I am here to say that for me, YES they do! Maybe they don’t for everyone, but I know my body and how it performs; and my beta blocker definitely affected my workouts. I slowly added low impact cardio and will slowly keep adding more! As I continue, I will protect myself. I will keep my heart rate where my doctor suggested, I will stay hydrated, I will never workout alone, If I don’t feel right I will stop, I will always keep the AED in our home and have everyone CPR certified.

I found me again. I started by crawling, currently I am walking, but soon I will be running! One day I even hope to fly! No….let me change that, one day I WILL fly! What matters most is that I don’t ever stop moving!  I was terrified to say out loud that I was scared. That I was angry. That I didn’t know who I was anymore! I was even more scared to admit it to all of you! What would everyone think of me? Then I realized, I am who I am because I put one foot in front of the other and didn’t stop moving. If sharing my story can help one person do the same, then it is worth the risk.

So please DON’T STOP MOVING! Don’t give up on yourself! You may be scared! You may feel down! You may be tired! You may have more restrictions than me (please listen to any restrictions that your EP gives you)! Your beta blockers may make you sluggish and out of breath. But please don’t STOP! Don’t give up! If you can’t RUN, walk! If you can’t walk, do yoga! You can do this, I know you can! I’m here to build you up and motivate you to be you again! Let’s not let Long QT define who we are. Did it change me? YES! It made me realize just how strong I am!

If you need motivation to keep moving forward I’d love for you to join our Facebook Group   Just Keep Moving!
Or feel free to send me a message at LisaLu@thelulumom.com.  I’d love to chat!



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