In a moment, a simple breath, life as she knew it disappeared. How can you go from being active to suddenly bedridden? This unexpected turn of events generated more questions than answers. Had she known even an ounce of information as to what had transpired, she may have responded accordingly. But she was blindsided. An unforeseen incident was only the beginning of a long arduous journey. The challenges ahead would prove to be daunting. Never did it cross her mind that one day she would struggle to simply breathe, yet there she was in a body she no longer recognized. She felt as though her body had declared war against itself. She quickly realized she could not control her symptoms. As much as she hated to admit it, her symptoms controlled her.
As she sat in the ER waiting to be admitted, she contemplated whether this was her fault or not. She suddenly had to be cognitively aware of each movement while her mind and memory were impaired. Even if it was just the short walk to the bathroom (some days she crawled), her life lost all spontaneity and normalcy. Instead of preparing school lunches, doing laundry, helping with homework, she found herself unable to get out of bed. Compression hose, beta blockers, steroids, BP meds, wheelchairs and a shower chair became her norm. Driving was a thing of the past. She relied on family and friends as her mode of transportation. When she was able to leave her house, she planned meticulously. A couple of hours felt like an entire day. Carrying meds, water and salty snacks became the norm. Going to a doctor numerous times a week for fluids became her life line. Increasing her blood volume, gave her temporary relief. Not fully free from symptoms but also not completely bed bound for a couple of days.
As time moved on, the life she once lived became a distant memory. She would watch others run on the sidewalk, while she became winded simply walking to the mailbox. The sting of her limitations constantly taunted her. She was a mother who could not go to her children’s events much of the time. She was a wife that couldn’t travel or have date nights for that matter. The household chores changed as well, as she could no longer do laundry or dishes. Illness was not simply impacting her own life, but the life of those around her. And for that, she carried much guilt.
One day she decided to make a life within the space she now occupied. Waiting for her circumstance to change only kept her stuck in the same rut. She knew there were two options…give into the illness and give up, or accept she was ill while also determined to find life in the storm. Every day brought a new set of obstacles to face, but it was worth it to her to keep fighting and pray a cure was on its way. She wasn’t asking for her old life back. She had come too far, learned too much, and was ready to live her life to the fullest with her new found perspective. Don’t sweat the small stuff. Enjoy every moment you can with your family and friends. Be kind to others. Give grace as you have been given grace. In the midst of sickness, she found out who she truly was, and that she was stronger than she ever knew. She just needed her body to catch up with her mind.
Let me do my best to describe Dysautonomia…
Dysautonomia is an umbrella term that is used to describe more specific conditions such as POTS.
It causes a malfunction with the autonomic nervous system (think automatic functions such as heart rate, blood pressure, digestion, dilation and constriction of the pupils, kidney function, and temperature control). Those who have dysautonomia have bodies that have problems regulating these systems that are automatically controlled in a healthy individual. Below is a diagram of what the Autonomic Nervous System controls. It’s far more complicated than simply fainting as many are led to believe.
While most people wake up thinking about their plans for the day, someone with dysautonomia is hit with opposition from the moment they wake up. Many wake up with low blood pressure, tremors, dizziness, numbness and nausea to name a few. Those with Pots are sensitive to postural changes. For example, the body does not tolerate changing from a sitting position to a standing position well. While for most, blood will pump and flow normally, someone with Pots has to find alternative ways to push blood back up to the heart. If they are unable to do so, the heart rate increases significantly and there is not enough blow flowing to the brain and in most cases one faints or has pre-syncopal episodes..
Below illustrates how many organs dysautonomia can impact.
Numerous times I have shared how amazing my support system is and how my friends have helped with daily tasks such as taking or picking up my child from school. They also take me to doctor visits, and do so with a gracious heart. We make the most of the trips and have girl talk while on the road. I thank God daily for who he has placed in my life, and I truly call myself blessed beyond measure.
To some, that makes no sense. How can I be blessed when I am sick all the time? How do I remain positive when my circumstances are not ideal? It’s simply this…when you have fought many years for quality of life, you hold tight every blessing and appreciate each moment. For me, my faith is what has brought me this far. I do believe there will be better days ahead. I do believe we will find a cure for POTS. But while we are waiting, let’s spread awareness, support each other, and find life in the midst of this difficult season. This is not the end. 💙💙💙