Finding Joy With Chronic Illness: Heidi’s POTS Story

Today, we have a guest post by Heidi from Hope from Heidi. In this post, Heidi outlines the ways that she finds joy in her life whilst managing several chronic illnesses, including forms of dysautonomia.

Hi friends, my name is Heidi. I’m a girly girl who loves fairytale endings and all things pink. I’m an all boy Momma of two. My husband is my forever best friend and biggest fan. We fight my chronic illnesses together as a team. 

I started having Dysautonomia symptoms 18 months ago. My local Doctors suspected POTS when I was hospitalized for hypotension. After seeing several specialists, all with varying ideas but nothing definitive, my PCP (Primary Care Provider) referred me to Mayo Clinic. My husband and I had to travel quite a distance to get there, but it was totally worth it. After days of tests and consults, I was officially diagnosed with Dysautonomia, specifically POTS and Autonomic Neuropathy. 

Heidi ©Hope From Heidi Blog

This isn’t my first experience with chronic illness. I’ve lived with Psoriatic Arthritis for several years. I was diagnosed with Crohn’s Disease just 8 months before my Dysautonomia diagnosis. I also have Adrenal Insufficiency (similar to Addison’s Disease.) 

Dysautonomia has definitely impacted my life. I have to use a walker or wheelchair to get around. I have problems with my balance. I can’t always take care of my family the way I’d like. I go to physical therapy often to strengthen my muscles and build stamina. I experience the usual POTS symptoms every day, along with additional symptoms from my other chronic diseases. They all come together in a tangled web. Sometimes I can’t even tell which disease is causing which symptom because many of the symptoms overlap.

Heidi and her husband ©Hope From Heidi Blog

I have a central line I use for daily IV infusions. I have malabsorption problems because of Crohn’s disease. The IVs help me stay hydrated and maintain electrolytes. It also helps with my POTS symptoms. My body can’t maintain a good blood pressure or pulse without them. My infusions run between 4-8 hrs per day. With the help of my homecare nurses I am able to do most of my infusions at home. I go to my hospitals infusion center for my Crohn’s and Psoriatic Arthritis IV treatment. 

I’m going to be completely honest. There are times when I feel like my illnesses are all consuming. The physical symptoms are relentless. The emotional toll often feels like a heavy weight strapped to my back. 

Heidi getting her daily IV’s ©Hope From Heidi Blog

When I feel frustrated by my illnesses, I let myself grieve for a moment. Then, I do something that brings me out of the dark and into the joy of life. 

Want to know the “secret weapon” I use to find more joy in life?

I help others. 

Yes, you read that right. I find ways to make someone else happy.

When you’re sick all the time, helping others may seem impossible. Don’t get me wrong, there are plenty of days when I can barley take care of myself. But on those okay-ish days, I do what I can to make someone smile. I’ve learned that helping others doesn’t have to be anything earth shattering. It doesn’t have to cost anything. And it certainly shouldn’t be something that takes a physical toll on you. 

It’s doing simple day to day things that make a big impact. Don’t focus on, or feel bad about what you can’t do. Instead, think of things that you CAN do and find ways to adapt. 

Heidi and her husband ©Hope From Heidi Blog

You can call or text a loved one/friend, or write a letter to someone explaining what you admire about them. Send thank you cards to the medical professionals that help you. Leave a love note with a treat for your spouse to find. Take time to enjoy the children in your life. Color with them, read to them, listen to them. Last year, I was unable to physically volunteer in my son’s school class. It broke my heart. I found a way to adapt though. I asked his teacher to let me know when she was running low on supplies. I would then donate what was needed. It made me feel like I was doing my part. Plus, my little guy would get to be the deliverer, which made him feel so great.

Just one little act of kindness, no matter how small, will give you hope as you fight your own illness. Doing this has given me a sense of purpose again. The more you practice kindness, the easier it gets and the more joy you will feel. 

Learn more about Heidi’s health journey here.

Follow Heidi on Instagram or follow her blog here.

This post was written for Dysautonomia Awareness Month 2019. Find out more about about dysautonomia at dysautonomiainternational.org

15% of all sales from my Etsy shop will be going to Dysautonomia International this month.

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