I have discussed the power of communication before when it comes to managing chronic pain. Realistic representation of your pain levels, educating new specialists about Burning Mouth Syndrome, and even sharing with family and friends about your condition; what helps…and what doesn’t.
We have discussed counseling and therapy and I highly recommend it if you can find and afford it. It will give you a listening ear from a professional who has “no skin in the game.” You cannot overwhelm them with your frustration and pain, or frighten them about your reactions to it. You cannot express any emotions that they have not seen before. They are required to have professional boundaries, and short of your expression of the intent to self-harm or harm others, they will actively listen and then give you some ideas of how to handle these emotions. It’s a gift you give yourself.
But, you say, “I can’t afford that.” Or, “I don’t want to open up to a stranger.”
I hear you.
Yes, Mother’s Day is this weekend and each successive holiday is a combo pack for me.
On one side, there is the great joy we take in our wonderful daughters and the special families they are both creating. Feeling appreciated for the love, time, energy, and creativity I invest in them, and an added bonus this year of a precious grandson who is still trying to pronounce “Gigi” and who gives me gorgeous, gap-toothed smiles and amazingly strong hugs.
On the other side, there is the 14th anniversary of this go-around with Burning Mouth Syndrome. The 15th year begins the day after Mother’s Day with no end in sight.
There is nothing else like this in my life and it has had effects that I am probably not even aware of yet. Experts say that the body remembers trauma, whether mental or physical, and it may be surprising to see what outcomes await those of us who deal with chronic pain for years or even decades.
So, what did I learn this last year?
I have suffered from Burning Mouth Syndrome (BMS) since 2008. Yes, I am in my 12th year of chronic pain and there is no end in sight.
If you have read any of this blog, you have an idea of the incredible amount of testing, medicines, and specialists I have run through and you know that I left no stone unturned in searching for a cause, a treatment, a cure, or what I settled for eventually…a diagnosis.
You may be a sufferer, whether Primary BMS (no underlying illness), Secondary BMS (burning due to other illness or treatments), a myriad of other chronic neuropathy illnesses, or you may care for someone who is suffering.
Have you noticed that they often do not talk about it? When you ask how they are, the answer you often get is, “Fine.” This is not untypical. There is something about the sheer persistence of a chronic pain syndrome that makes many of us go underground.
Let’s talk about that.
When we go underground with our pain, we do some potentially destructive things.
- We deny our knowledge to the community around us. Whether it is facts about our illness, coping strategies that may help someone else, or helping to define the aspects of our illness that may intrigue researchers, attract funding, and perhaps lead to diagnostic tools, treatment, or a cure; it is all valuable.
- We withdraw from the people who care for us, and without proactive communication, we can irreparably damage relationships that could be of vital support.
- We discount our importance in the world. Never thought about it that way? You aren’t alone. We feel that we are putting a burden on others when we talk about our pain or we think we are whining when we acknowledge to others that,”No, it hasn’t gone away. I have just gotten better at pasting a smile on my face.” How would you feel if someone you loved hid that very important knowledge or those feelings from you?
Something to chew on, don’t you think?
Perspective, priorities, and progress.
They are all connected for the chronic pain sufferer and can affect us both positively and negatively. The powerful thing about this dynamic is that unlike many things we are enduring, we can make a choice.
Your perspective is how you view yourself in relation to your condition.
Are you blaming yourself, whether logically or illogically for your pain? Many people think, “If only I hadn’t done this, or that, things would be different.”
I did this myself in the beginning, actually having dreams about saying no to replacing the caps on my front teeth. Saying no to the endodontist who cracked the root, the oral surgeon who did an unsuccessful apicoectomy, the antibiotics I had to take…oh Lord, it goes on and on. Continue reading
“Anger can be grief unexpressed.”
I read that somewhere recently and thought, “Wow, I never really thought about it that way.”
I knew that anger is often linked to fear, but didn’t intuitively link it to grief. Most of us know that anger is a stage of grieving before you reach acceptance, but what if you or a friend or family member simply gets stuck there. Is there an appropriate time limit to mourning?
The answer is no.
Those of us who deal with the chronic pain of Burning Mouth Syndrome may go through successive cycles of grief. We grieve that we hurt and don’t know why. Then we grieve the myriad ways our lives have been changed or our activities hampered by pain. Then we grieve that we cannot talk about our pain because it has gone on so long that we feel we are burdening others when we speak of it. That’s a lot of grief, my friends, and I know you have experienced many different and sometimes difficult reactions from your family and friends over the years.
I recently saw a lovely video about helping your grieving loved ones and knew I had to share it with you. Continue reading
Yesterday as I grabbed my morning coffee at the neighborhood shop, I spotted an acquaintance. I had seen her around the gym where she is always intense and focused but had only spoken with her once or twice over the years. I said hello and reminded her who I was (You know when you get that feeling that they know they know you but might not remember your name or the context?) and we stood together waiting for our orders.
“My God,” she said, looking at me intently, “You always look so glowing. Why is that?” Continue reading
I have been writing about Burning Mouth Syndrome (BMS) for years now, and recently a reader reached out to me and said she had been dealing with this chronic pain for over fifteen years. She had read one of my blog posts and has been keeping a pain diary for the first time ever.
“Hallelujah, sister!” I wrote. Continue reading
As many of you know, I am very close to the 8th anniversary of my second bout with Burning Mouth Syndrome.
A friend I made on the Burning Mouth Syndrome (BMS) Facebook group page named Dennis and I have stayed in contact even after I left the group.
(Trolling is bad, boys and girls; don’t do it because people like me will not hang around for it!)
He became interested in the syndrome after his lovely wife was afflicted, and has been keeping up on research, traveling to multiple specialists, and keeping others informed about any progress toward finding a cause or a cure, no matter how tangential it might be. Continue reading
Image courtesy of holohololand/FreeDigitalPhotos.net
I have been suffering from Burning Mouth Syndrome for nearly six and a half years now.
Every once in a while, what my Neurologist euphemistically refers to as “the persistence of it” overwhelms me and I have a brief, but intense pity party. Continue reading