LC Has a Name
September 22, 2021
As summer turns to fall, I still wake up every single day in disbelief that long covid is happening to me. I am excited for cooler weather, heat and long covid are not friends, but in shock summertime has come and gone my oh my.
I am asked all the time “How are you?” Most of the time, I don’t know what to say because each day, and sometimes each hour, brings highs and lows that are hard to describe. Smiling as I walk Doug among beautiful flowers can switch to tears streaming down my face from body aches and exhaustion in the blink of an eye. I walk into physical therapy ready to attack the exercises and I end not being able to talk and using a cane to get to my car. Having a post viral syndrome is unique because some hours I am working towards recovery and others I am still fighting the virus. I have yet to have a symptom free day but holding onto hope that my day is right around the corner.
I am also asked “Do you think you are getting any better?” Yes, I am improving, I know I am. It just happens to be veryyyyy slowwww. It’s like each day I add one grain of salt to a pile. The problem is some days the grain weighs ten pounds and others it weighs a thousand and I never know which one it’s going to be. Good news is someday that pile will become a mound you can see. I would love it to go faster but because every therapy is intertwined with fighting the virus, there is only so much my body can handle. Plus, the science just isn’t there yet. Everyone is guessing and testing theories of what might help. While Long Haul Covid has an official name: Post-Acute Sequelae of SARS-CoV-2 infection (PASC) and has been named an official disability with the ADA, there is no standard treatment yet, although the best minds in the world are looking for answers. I appreciate everyone passing on ideas you have heard might work. I have added Qigong and Infrared Sauna to my long list of recovery therapies and vitamins. Everything takes an unbelievable amount of effort & energy, and a lot of hope that it will help.
In the past few weeks, I have been able to be with my family more thanks to the help of a lighter version of my zero gravity chair and my snazzy cane. It has been great to not have to miss everything but frustrating because everything requires planning and lots of help and there is still so much I can’t go to. I have hit some bumpy patches where I am exhausted from trying so hard and I cry because I “am tired of being grateful for every little thing”. But that’s the trick box of this all because I truly AM grateful I get to be here for more hugs and for the progress I have made. I keep going because everyone has surrounded me, picked me up, sent a message, made me laugh, carried my chair. I am in awe of the divine timing of everyone who has reached out. It all comes right when I need it the most.
Continue to think of Brian. His strength is tested everyday keeping this ship afloat while feeling helpless watching me with no way to know what quarter we are in. Fingers crossed it’s the 4th! Keep sending love and light to my girls. If you have had to bear witness to the lows, you know how hard it is to watch, and that is their reality everyday.
