In addition to celebrating my first Mother’s Day as a grandmother, I am sobered by the fact that this begins my fourteenth year of Burning Mouth Syndrome.
I never imagined when this journey began that it would last so long and would affect my life so much. Each year at this time, I review and see what I have learned, whether there has been any improvement in my pain, and evaluate how much I have been able to help others who are not as far down this road. I have kept up with the research on the BMS Support website and respond to comments on this blog, and it feels like those are helpful things to do.
2020 was a challenge for everyone. The COVID19 pandemic took the chessboard we usually move around on and tossed it in the air. Sickness, Death, Lockdowns, Masks, Respirators, Ventilators, PPE, Social Distancing, and more, all became a part of the pandemic landscape and our new vocabulary. The folks who dealt with chronic pain and illness had to find a new level of coping skills and count ourselves lucky that it wasn’t worse if we were able to avoid COVID.
2021 started out very hopeful with the advent of incredibly effective vaccines, but the rollout was uneven and slow, frustrating even the most patient of us. Then the variants began popping up around the world, inevitable but scary, and things were made even more chaotic as disinformation spread and vaccine hesitancy became a thing.
Right now an unspeakably large number of people are sickening and dying in India because they thought the pandemic might be over or at least under control and opened up to political rallies, large weddings, and religious festivals. It was too soon and the medical infrastructure cannot sustain it. Don’t think this can’t happen in America, because despite being the most vaccinated nation in the world, we are still far below the threshold that would defeat COVID and it most certainly could happen here. Epidemic experts say that it will more likely mean that COVID is with us to stay, and we will probably have boosters each year with our flu shots to deal with the variants that will keep springing up as the majority of our population remains unvaccinated.
This year of Burning Mouth Syndrome has resulted in no change on that front, but big changes in nearly everything else in my daily life. I continue with my regimen of hydration, rest, and Clonazepam and deal with the flares whenever they occur. There is no treatment or cure on the horizon to my knowledge (or my Neurologist’s) and so the status quo remains.
I distract myself and find joy in my little grandson who was diagnosed at three weeks old with Cystic Fibrosis, a genetic disease that will be with him for the rest of his life, and will make him more susceptible to respiratory illness. Not a great combination with respiratory virus pandemic, so we continue to be very cautious.
Our family will be doing what we can to support this new young family and support the research that has expanded these children’s life expectancies exponentially. There is hope for a cure for Cystic Fibrosis and for all of us who suffer with BMS, I add an additional hope that this might be the last year of Burning Mouth Syndrome.
Wouldn’t that be an awesome thing?