Living with Mitochondrial Disease

Living with Mitochondrial Disease

Living with Mitochondrial Disease has its challenges. I was the kid that was always sick in school. I missed countless days. In fact, one morning in elementary school the art teacher was taking attendance and called out my name. Before I could reply, a student across the room laughed and said, “Not here. She’s pretending to be sick as usual.” Ouch. My shy, introverted, 10 year old self somehow managed to raise my hand and say something along the lines of, “I’m right here and feeling great today.” I pretended to laughed it off as the guys roasted the first student for his mistake. It wasn’t until I was 13 years old that we finally discovered I have Mitochondrial Disease. My entire life I had always wondered if I really was a drama queen about pain or minor illnesses. I may be dramatic about somethings (just ask my family), but this isn’t one of them. It was a huge relief just to know that there was indeed something happening in my body that was causing all of my issues.

What is Mitochondrial Disease?

Mitochondria

Mitochondria are responsible for creating 90% of the energy needed to sustain life and support organ function. Mitochondrial disease (Mito) is the result of either inherited or spontaneous mutations in mtDNA or nDNA which lead to altered functions of the proteins or RNA molecules that normally reside in mitochondria.

Think about the mitochondria in cells as batteries. Each cell in our bodies is powered by it’s own battery. However, people with Mito have defective batteries. Our batteries can’t fully recharge themselves. You know when you’re iPhone warns you that the battery is at 20%? That is the level of Mito power some people live with daily. We have to go into “low power mode” and conserve what little energy is left.

It’s hard to say how many people are impacted by Mito, because many go their entire lives without a proper diagnosis. It is estimated that anywhere from 1 in 4,000 to 1 in 6,000 have a form of Mito.

What does this mean for daily life?Loren

The severity of Mito varies from person to person. I am one of the lucky ones. I can walk, talk, eat, and I don’t have any neurological complications. People with Mito can have developmental delays or kidney disease. Seizures and memory loss are also common. They can also have muscle weakness, learning disabilities, and gastrointestinal disorders. Another common complication is autonomic disfunction. Finally, there are many more complications, and each person’s struggle is unique.

My experience

Personally, my biggest issue in the past has been my immune system. Like I said earlier, I was always too sick to go to school. I caught everything. In fact, it caused me to move back home after 1 semester away at college. I also have Dysautonomia. This is a form of autonomic dysfunction. My body cannot regulate temperature, blood pressure, or heart rate. My fiancé says I have the heart of a race horse because it’s constantly go go going.

Additionally, I used to get cluster migraines. Now, if you’ve ever had a migraine, you know they are no fun. I’m extra special because my migraines are also optical migraines. There will be holes in my vision. It causes me to be basically blind and unable to do anything. A cluster migraine means that is stays for days at a time. I would have to spend a week in the hospital to get IV medications to knock it out. Thankfully, {knock on wood} I have gone 2 years without a single migraine and almost 7 years without a cluster migraine.

Lastly, I have muscle weakness and decreased muscle tone. In high school, my homeroom was on the 3rd floor and my first class was on the 1st floor. Walking down three flights of stairs would completely wipe me out. Sometimes my legs would try to give out from under me. Add on that heavy backpack, and it was a recipe for disaster. Thankfully, the school kindly allowed me to use the elevator. Finding those little adjustments to daily life make a huge positive impact.

But You Don’t Look Sick!?

I can’t tell you how many times I’ve heard this. I will literally be aching in muscle pain and fighting a serious migraine. Then someone will come along and say, “oh but at least you look great!” Usually, people have good intentions when they say this. However, it doesn’t do much for the person who’s sick. In fact, it can sometimes make them feel the other person doubts the amount of pain they are experiencing. It can also make them feel like the other person does not care about their internal struggles. Instead, they just care about appearances. Of course, this isn’t always the case.

To the person who’s told you look great: I try to take it as a compliment. Hey I might feel like death, but at least the world thinks I look good 😂

To the person thinking someone looks great: Try to focus instead of offering supportive statements that aren’t based on looks

My Past and My Present

My present Up until 4 years ago, Mito completely dictated my life. Every decision was based on how much energy it would take away from me. Today, I have been years without cluster migraines. In four years, I have only had 3 infections. I work out 4-5 days a week. I go hiking, I stay out late, and I run a business. I’m planning my wedding and buying a house. These are things I never dreamed would be possible. There is hope. There is strength even in the weakest moments. Learn more about my journey here.

More to the story…

There is so much left to tell about my story. Being a middle and high school school student and adult with two chronic illnesses has its struggles. I’ve also found incredible ways to support my body naturally. Be sure to subscribe to my blog to learn more about Mito and my story. If you’re living with an illness, stay strong. You are important. You are loved. And if you need a listening ear, feel free to contact me. I love chatting 💁🏻

Loren is a wellness advocate, a recent college graduate in Special Education and Counseling, a substitute teacher, a tutor, and hospice volunteer. Hiking, tea, visiting local breweries with her fiancè, photography, chocolate, and reading, are some of her favorites. 

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2 thoughts on “Living with Mitochondrial Disease

  1. Your story reads a lot like mine. I spent a good portion of 7-12th grade doing correspondence at home because I could not walk the two flights of stairs or sit under the lights. I’ve suffered horrible migraines since I was three. I too have dysautonomia and small fiber neuropathy on top of the mitochondria issues. There were times when I would be vacuuming or folding clothes and I would just pass out. I knew everything around me but couldn’t wake up. Many times in hospital every surgery requires a hospitalization and more. I am grateful for my arms and legs although what I do these days are limited and I have to use my mobility scooter more and more. Doterra has helped me immensely and I am healthier because of these amazing products

    1. Thank you for sharing! Mito is no joke and it has a larger impact than most people realize. I’m so glad we were able to virtually connect thru Facebook and become friends! Much love and hugs ❤️

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