Empowerment Group for Families and Caregivers
A LETTER FROM SHANNON
Dear Friends,
Before Travis was diagnosed with Covid Long Haulers we were both active people, participating in cardio and weight training on most days. We hiked with our dog and ate mostly plant based foods. In fact, Travis had just run the Disney Half Marathon with our kids a few months before he became ill. Neither of us thought we’d ever get as sick as others had.
This debilitating syndrome can affect anyone who’s contracted Covid 19. However, each person may be affected differently. One of the most difficult aspects of being the spouse/caregiver of a Covid Long Hauler is the fact that there’s no prognosis. Even though doctors and scientists are working diligently on etiology and management, there are no true words of hope that I can offer Travis or others of a promising cure.
It’s also difficult because Travis has good days and bad days, those of which I’ve labeled “Up Cycles” and “Down Cycles”. Although we take full advantage of Up Cycles, there are many days when he’s experiencing a Down Cycle. These cycles can last from one day to weeks with no set pattern. Down Cycles for Travis include excruciating chest pain, signs of anxiety and depression, PTSD symptoms, and extreme fatigue. For these reasons, Travis won’t be able to return to work until a treatment is discovered. (To hear more details about Travis’ Post Covid journey please go to his Podcast link on the website).
Covid Long Haulers is so new that there are few “formal” sites for people to find resources and support. The good news is that Travis and I have unique insight about Covid Long Haulers because we’ve worked in the medical field for a combined 37 years. His knowledge as a Registered Nurse and my knowledge as a Physical Therapist Assistant/Health and Wellness Coach have offered us the ability to begin to solve the puzzles that are before us.
We’ve created the Team Covid Long Haulers Foundation to serve as a centrally located space to share pertinent knowledge and tools with everyone. We’re continuing to work on up-to-date educational components, a hub for research and collaboration, and a structured support and empowerment system for long haulers and their loved ones. In addition, we’re sharing our journey with everyone in hopes that it’ll make lives easier for those who’ve been affected by the virus. Whether you’re a patient, spouse, or caregiver, my wish is that you’ll find ease and comfort from the tools that our foundation offers.
I envision and dream of a day when our lives are back to normal. I look forward to the day that we’re thriving instead of surviving more days than not. I find solace in knowing that I’m able to help someone else’s journey become easier because of our foundation.
If you’re a Covid Long Hauler, caregiver, family member, or friend, I encourage you to join our next Support and Empowerment Groups where we’ll share experiences and talk about strategies that we’ve discovered over the past ten months to navigate life with Covid Long Haulers.
Sincerely,
Shannon Exum
Co Founder