Life With Dysautonomia: Miss Amy’s Story, Part 2

TMI Alert! Pooping, or lack thereof, deserves its own book. Constipation. Hemorrhoids. Ugh! Nothing helped. Over the counter remedies, enemas, plenty of fluids, a diet high in fiber. I tried them all. It was not unusual to have 2 bowel movements each week and it was usually a painful experience. My bladder also hurt, and I had to urinate frequently.

Once, I woke up in the middle of the night crying in pain. The only way to describe it is as if an alien was trying to claw its way out of my rectum. It hurt. Bad. Did I mention it hurt already? Jiminy Christmas! Come to find out, that pain was my pelvic floor muscles clenched in a death grip. “Oh, Hi down there. Never knew you existed before but SWEET BABY JESUS!” I was prescribed something for muscle spasms and referred to my OBGYN. The doctor’s assessment was that I needed a hysterectomy and a bladder and bowel repair surgery. Yay for me! More surprises! I had the surgery. The recovery sucked donkey balls.

Fast forward a few months and the same symptoms appeared again. Speechless. Here I am in my mid thirties without my uterus for no apparent reason. Goody.  I visited a urinary specialist who told me that I had interstitial cystitis. “OK, I can handle this.” Picked up a new prescription and I kept on trucking. Working, working out, hanging out with friends, raising my son. Everything was great!

“Keep on Keepin’ On,” was a motto that I lived by. If a hurdle came my way, I smashed it and kept on. That’s all that I knew how to do.

My New Normal

In February of this year, after recovering from a string of various illnesses, I was looking forward to feeling healthy (or my version of) again and getting back into my athletic workouts and daily life. However, during several attempts at the gym and hiking, and I was experiencing shortness of breath and fatigue. This was new and most certainly not welcome.

“Ok, I’ll rest some more then give it another go,” I told myself. Patience.

It took everything in me to climb the peak of the Mesquite Camp at Palo Duro Canyon. Usually, this would be the first 20 minutes of a fun three-hour trek of hiking and climbing. I’ve completed this hike dozens of times. After reaching the top of the first ledge, I was short of breath, confused, lightheaded, and an unwell feeling came over me. I didn’t know how I was going to finish the hike. The only way down from that spot was to squat and slide, using my hands and feet for balance, down several hundreds of feet of loose sediment. I was alone on this hike. I made it to the car and then thought “Great, now how am I going to drive myself home?” The fatigue and brain fog were overwhelming.

Little did I know that this encounter was only the beginning. Whatever this was would progressively get worse from this day forward. My mind still says “Go! Go! Go!,” but my body? Eh, not so much. Exercise intolerance and heat intolerance don’t make for a good match. Neither does being orthostatic intolerant and having a heart rate that doubles upon standing.

I started keeping a health diary to track what was happening to my body, because every day was different. Some symptoms are under control with help from medication. Some aren’t. By far, the most difficult symptoms to overcome are the fatigue and brain fog.

I’m not what I once was or thought I was capable of becoming. I am one of the lucky ones though. Because my son was diagnosed and is treated in the same clinic, I received my diagnosis quickly.

That’s the good news.

The bad news is, I struggle every day. There is no cure for dysautonomia or POTS. My brain cannot accept that I can’t fix something. I’m not wired to think that way. Having an intolerance to heat means that warm baths cause my blood pressure to drop and heart rate to increase. It may seem like a small thing, but baths were my escape and I can no longer enjoy long soaks. I’m no longer able to exercise.  There are side effects to some medications such as weight gain. I have food sensitivities now and can not enjoy pizza, dairy, sugar, fried food or wine. I’m unable to cook because standing is difficult and I’m forgetful. I may leave the room and forget something is on the hot stove. The brain fog causes me to make silly mistakes such as washing my hair with body soap, microwaving cereal, holding a can but not remembering what I was planning to do with it, or making mistakes on medications. My body does not absorb water correctly, so I must load up on sodium. I enjoy food and I know that if I want less GI related upset that a liquid diet is best. I only have a small amount of energy every day and I must decide how to choose what to spend it on wisely. Do I wash and dry my hair or save it all for a doctor’s appointment?

Dysautonomia Awareness

I’m only one of many. Dysautonomia is not a well-known condition. Some doctors have still not heard of it. Some of those who suffer are misdiagnosed with mental illnesses. For others, it takes many years to receive a proper diagnosis and medical treatment.

The dysautonomia community is growing by leaps and bounds. Researchers are working for a cure. I’m telling you my story in the hopes that it may help you or a loved one receive proper care and support sooner.

If you’d like to donate to the cause, Dysautonomia International is a 501 (c) (3) non-profit organization based in the United States that has a global mission. Donations support research, physician and nurse education, public awareness and patient empowerment programs that benefit individuals living with autonomic nervous system disorders.

There is also a fabulous book titled ‘The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients,’ that is extremely useful and packed full of great information.

With all that being said. I’ll continue to go down my rabbit holes searching for information and am trying to make peace with knowing that this is my new normal. And, as always, I’ll Keep On Keepin On!

Miss Amy


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