Finding New Strength
My Story.
By, Kate Winson
“I find strength in the chronic illness community that has existed and fought before me,”
My bucket list for the upcoming year included working on graduate
school applications, buying a road bike and running my first marathon.
Unfortunately, these goals have taken a back seat for the indefinite future
as overnight, my otherwise able and healthy body dissipated. I felt as if my
life had been stolen by illnesses I didn’t even know existed.
Over the winter holiday, I went on what I thought would be an
ordinary run with my dad. Running was a huge part of my life, and a
longtime sport I enjoyed with my sisters and dad. However, during this
particular run I felt extremely heavy and air hungry. My heart rate spiked to
nearly 200bpm and I had to stop several times in order to catch my breath.
For the duration of the day, I felt depleted in a way I had never felt before.
Unbeknownst to me, this would be the start of a treacherous and
frightening health journey.
The next day, I awoke with a range of debilitating symptoms-
neurological, physical and cognitive. A wave of intense flu-like fatigue
hit me, along with dizziness, heart rate spikes, and malaise. Just a
few weeks prior, I had run my fastest half marathon, and now
suddenly I was unable to walk a city block. I felt like I was living in a
weird nightmare. Each morning I awoke, yearning to wake up from
this nightmare and jump back into life. I felt as if a fuse busted in my
body and its wires were no longer working in sync.
Overnight, intense brain fog decayed my intellectual identity as I
could barely read, comprehend sentences, engage in conversations,
recollect memories, etc. My former joking, silly personality faded away as I
started remaining silent in conversations and hangouts with friends. It took
too much energy to process information and think of responses, as
thoughts were not coming to my mind anymore. I could not recall
information or names. My memory bank was virtually gone. Not only did my
body physically feel hijacked, but equally as frightening, my brain and mind
were fading away.
My health declined faster than the medical system could diagnose
and treat me properly. I was able to float through my long work days for a
few months, but eventually I had to stop working as I continued to decline,
still without any real answers or prognosis. Weeks slowly trudged on, and
the world outside my apartment window continued with vibrancy as I spent
the time between my bed and sofa. By this point, I had seen a range of
doctors and specialists, but still no tangible answers. This was the first time
in my life I had lost hope in modern medicine and run-of-the mill clinicians.
After a 4 month wait time, I completed a tilt table test for my
neurologist to formally diagnose Postural Orthostatic Tachycardia
Syndrome (POTS). Months later, I finally met with an out-of-state
neuroimmune specialist to diagnose me with post-viral ME/CFS. From the
onset of my debilitating symptoms, it took 7 months to receive these
diagnoses. However, a diagnosis is just the beginning, especially as, to my
despair, I learned ME/CFS has no formal treatments.
What I would give to freely move my body again, or even function
daily as a healthy person in her twenties. My life in Boston was filled with
activity and goals. At 24, my adult life was just beginning. I miss my
capable body and witty, clever mind. Now I deal with debilitating fatigue,
cognitive dysfunction, post-exertional malaise, and a myriad of other
symptoms including dizziness, deep body pain, burning eyes, and crushing
headaches.
I am learning to remain strong and hopeful as more of my hours and
days are spent in slowed down solitude. With a new, less demanding and
more manageable job, I can continue to live in my favorite city. Despite the
bustling world outside my window, there are still many days where I can
only watch from my window. I try to find joy in what I can, including music,
audiobooks, and talking with friends. I am learning to be more patient with
my body as I slow down my lifestyle and accept my limitations. I try to not
succumb to stubborn discouragement when I struggle to complete a simple
task that otherwise would have never given me troubles, including washing
a load of laundry or grocery shopping and cooking.
I will never quite know exactly what triggered these illnesses for me.
Was it my repeat Covid-19 infections? Was it a perfect storm of multiple
hits to my immune system, including vaccinations and infections all in a
short window of time? Did the demands and stressors of daily life coupled
with my busy and rigorous endurance lifestyle play a role? I am cautiously
hopeful that with further patient advocacy and medical and governmental
awareness, especially with the millions falling victim to Long Covid, we are
moving in the right direction. ME/CFS, Dysautonomia, and other post-
infectious chronic illnesses are not rare or new conditions. I have learned
the haunting truth that there are millions missing from their former lives due
to these underfunded and under researched illnesses.
I find strength in the chronic illness community that has existed and
fought before me, and with my limited energy, I hope to continue to devote
my efforts to patient communities and advocacy as I’ve involuntarily joined
the invisible world of chronic illnesses. Living in a mecca of medical
research and hospitals, I have been fortunate enough to partake in several
neuroinflammation research studies for Long Covid and post-infectious
ME/CFS. Through these experiences, I have connected with driven
researchers and scientists who devote their time to continuing to help solve
these complex chronic illnesses. I am thankful to have found patient
communities where I can connect with incredibly strong people around the
world. I am not alone as we continue to search for answers. I know my
health journey has just started, but there is solace in knowing I am not
fighting these battles alone.
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