In May, I began a “job” again for the first time in about thirty years. I have been working as a volunteer all this time, but it was at my convenience and although there were busy times, it was not a constant or consistent routine.
Now I care for my five month old grandson who was diagnosed with Cystic Fibrosis at three weeks old. I drive to my daughter’s home by 7 AM each weekday morning and leave at 3:30 PM to beat the traffic home. (She and her husband work full time, rightnow at home but increasingly in their offices.) I feed him, change him, bathe him, play with him, and interact except when he naps. While he naps I help around the house with laundry, dishes, and preparing bottles. Now we are beginning solid food and that will be another adventure!
What does this have to do with my Burning Mouth Syndrome pain?
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.
I have generally been a strong proponent of vaccines and get my flu shot every year. Knock on wood, flu has not been a visitor at my house for many decades and I would like to keep it that way.
That said, when the vaccines came out, like many of you the first thing I thought was, “What will the COVID vaccine do to my Burning Mouth Syndrome (BMS)?”
We have all tried so many things to relieve our burning, and some may have helped a bit, but we also discovered additional triggers and things that caused flares, and so we may have become just a little more wary than our neighbors. Not because we don’t trust science, and not because we have hard held beliefs for or against vaccinations, but simply because we don’t want to hurt more.
Winter is not even close to over and the entire nation has had a big dose of icy temperatures, slippery roads, and overworked heaters. Heaters and furnaces do a good job of keeping us warm (when they work and you are not having rolling blackouts) but they also turn the air we breathe dry as the Sahara on a hot day.
Dry air and dry tongues are anathema to Burning Mouth Syndrome (BMS) sufferers and can increase our burning sensation and even bring on flares that take time to subside.
We have covered a bit of this ground before, and again I urge you to communicate, take the rest (and medicines) you need, and use your coping strategies to get through the stress of the holidays.
But this year is different.
Due to COVID-19, you may be experiencing different stresses, some that are caused by the upturning of all of your carefully laid plans and traditions. No extended family visits, hugs from people you haven’t seen for a long time, and no shared meals for many.
I have mentioned before in this blog that Burning Mouth Syndrome (BMS) gets little attention from the medical community and the world at large.
After all, it won’t kill you. At least not directly.
Recently, a friend sent me a link to an Etsy shop that is run by a Burning Mouth Syndrome sufferer and I was so excited to see something so important to me finally being recognized. These designs are not official. After all, there is no BMS Foundation or nonprofit to run things through, and although some of the Facebook Support groups have come up with some things, there is no slogan or logo that universally makes you say, “Oh yeah, that’s Burning Mouth Syndrome!”
I started to write this as an update for Burning Mouth in the Time of COVID 19, but I realized it would be too long. Feel free to read that previous post since it lays out my thinking about checkups in a pandemic! Many doctors and specialists are moving to a mix of virtual and live appointments and for the most part, I think that may very well be the way of the future. However, if you have something they need to see, test, or feel to diagnose, don’t hesitate to press for an in-person appointment. They have protocols and PPE and are doing a great job of keeping everyone safe. Ask ahead what the procedures are, and you will either be reassured or decide to switch doctors!
That said, here is my update and what I experienced as I tried to catch up on my checkups.
The Annual Physical was protected and easy, and I was so glad I went in person (We have done a virtual follow up appointment.) because the little itchy, burning rash I had developed on my gluteus was not prickly heat. It was shingles! It was so mild because I had taken the Shingrex vaccine, but it gave me a hint of how extremely painful that could be.
One of the three Neurologists who treated me over the years had experience with quite a few cases of Burning Mouth System (BMS) and put mine in his “top five” of well documented and intractable cases. This is not an award I was excited to receive!
He said that like many chronic pain syndromes, “You know it is not fatal and that other people live for decades with it, but what wears you down is the incredible persistence.”
I thought he captured something very relevant. The day after day after day of chronic pain that has its own repeating pattern of escalation and only completely relents when you sleep. It is a wonder that we aren’t all sleep-aid junkies. I have noticed during the pandemic when I have so few things that get me out of the house early in the morning, I am sleeping 8-9 hours a night. It is lovely.
Someone asked me recently if I thought BMS would make COVID-19 worse if I got it.Continue reading →
Stress. We know it makes our chronic neuropathic pain worse. Our pain increases as stress rises, which increases pain, which increases stress…and well, you know the rest.
It’s an automated answering system from Hell, with no readily visible pound sign to hit to get a live person on the line. Or is it?
Stress is coming at us from all sides now, from the worries and complications of the pandemic to the feelings and actions we are experiencing about racial equality and equity. We are not alone in our stress by any means, but chronic pain sufferers can be triggered in more than one way by it.
I admit that I resisted counseling at the beginning of my Burning Mouth Syndrome journey. I had an instinctively negative reaction to the assumption that this pain was “all in my head,” or that therapy could or would help. It also felt suspiciously like I was getting shuffled off into the “menopausal female” box where any aches or pains or issues were part of the incredibly mysterious malady that seemed to be menopause. As a strong and independent female, I rejected this categorization and marginalization and started fighting back.