Erin’s story of living with POTS

In my late twenties I was a homeschooling mama with three children and one on the way. I was exhausted all of the time with all over body pain. My legs felt like I was walking on toothpicks and I was worried I would collapse. I felt better when I could lay down flat, so we would often do school from my bed or the couch. When my husband would get home around 2:30 each day, I would go straight to bed. We knew something was’t right, but everyone assumed it was part of the pregnancy. I went to several specialists, and a neurologist even remarked that my legs looked sunburned in the middle of a midwest winter! Now I know that my legs were pooling blood, but at the time I shrugged it off.

After I had my fourth child, I continued to struggle. My symptoms hadn’t gotten any better and life was difficult. I couldn’t be active with my children anymore. We couldn’t do simple family trips or activities. If I did push through I would pay for it for the next few days with extreme fatigue and pain. We continued to search for answers by seeking specialists and trying new diets and supplements.

Nothing was helping at this point, but I do want to give a shout out to all of the wonderful medical practitioners who believed me during this time. Even though they weren’t able to find the answer, they never made me feel like I was crazy or lying! There is something about being believed that is so good for the soul.

As a family we got used to my new normal. My church family stepped in to help me get my children to events and brought our family food on occasion. Friends wrote me encouraging notes and I treasured each one.

One doctor recommended I take up yoga for the stretching and breathing benefits. As I faithfully did my forward bends and downward dogs I would often temporarily lose my vision. It was like black blinders being drawn together in front of my eyes. My ears would feel plugged and I would get warm. Now the interesting thing is that since I was a child I would experience this often when I first got up in the morning. I thought it was normal! At my next appointment I casually mentioned to my doctor that it was happening to me more than when I first got up. To my surprise she told me it shouldn’t be happening at all! This led to more tests and specialists which led to a doctor at a pain clinic recommending the tilt table test.

Within minutes of being tilted upright, the cardiologist told me I had orthostatic hypotension and then a few minutes later told me I had POTs. It felt so good to finally have answers!

I began drinking water and eating salty foods and wearing compression socks. Doing these things gave me back an hour or so a day where I didn’t feel completely awful. But I still wasn’t where I wanted to be. I wanted to go to the zoo with my kids. To attend homeschool co ops. To be able to do the laundry without needing to nap afterwards. I changed my focus to what I could do. I could kiss my children’s owies with that special mama kiss. I could pray for them as only a mother can. I was a constant in my home – yes constantly in bed – but my children and husband always knew where to find me! My faith kept me going during this time. I am a firm believer in Jesus and the Bible. I clung to the Word of God and journaled prayers.

As an answer to those prayers, I was introduced to the highest quality of supplements, protein, and a natural, clean hydration drink. These products changed my life. I still have POTs, and I still need to put my feet up everyday in the afternoon for an hour or so. But I am active again. I can exercise. I can take my kids on field trips and go on dates with my husband! I can even do loads and loads of laundry. When we give the body what it needs, it’s amazing what it can do!

My message to you today is to not give up hope. Keep searching for answers. What worked for me may or may not work for you. We are each so wonderfully made! You are worth it. And you are special whether you are laying down in bed or dancing through the streets. You are the only you and the world needs you.

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One Comment

  1. Marcia walker 31st August 2018 at 2:18 am - Reply

    What supplements and other things did you use? My daughter has been diagnosed and trying to figure this out!

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