5 Of The Most Embarrassing Side Effects of Lyme Disease
Life with a chronic illness can be frustrating and sometimes even a little embarrassing.
As a sufferer of Late Stage Lyme disease, Fibromyalgia and Chronic Fatigue Syndrome, I have experienced my fair share of mortifying situations. If you were to ask me to list the five most embarrassing symptoms of Lyme Disease, it wouldn’t take me long to name them. I wouldn’t lack for stories to tell either.
Each one of the symptoms listed below go hand in hand with stories.These are tales laced with both courage, quite often fear and yes, embarrassment. No matter how hard I might try, I cannot escape my human emotions. I am after all human!
Even though some of the emotions I experience are painful, I wouldn’t trade the joyful ones for anything in the world! Learning to take the sour with the sweet is one of the inescapable lessons in life. Maybe one day I will learn to balance them more evenly. For now, I will keep struggling forward and hoping for the best.
I thought I would share five of the most frustrating symptoms of Lyme disease that I have struggled with quite frequently. They are not pleasant and more often than not they have been a source of great embarrassment to me. But sometimes there is strength in sharing and I wanted to let others know that they are not alone in this struggle to keep our chins up and our dignity in tact. Never give up and keep fighting the good fight.
So without further rambling, I give you 5 of the most embarrassing side effects of Lyme Disease, at least for me!
What is this strange-sounding ailment? Costochondritis is an inflammation of the cartilage in your rib cage. At times it can be quite mild and other times extremely severe.
Last March, Costochondritis landed me in the emergency department feeling as if I were having a massive heart attack. I was immediately given an EKG and chest x-ray as well as a ton of blood work and declared fine. With the exception of my Left Bundle Branch Block which they always follow up by saying what are you doing with LBBB at your age?
There is nothing more humiliating than literally feeling as if your arm is falling off and your chest caving in, only to find that it is just inflammation of your chest wall. The ER doctor acted as if I was crazy. I on the other hand felt like I was dying.
It was an awful experience. The pain caused by this condition can be extremely deep and radiate to your limbs and back, mimicking that of a heart attack. Movement often makes the pain more intense and breathing deeply is out of the question.
I followed up my ER visit with a trip to my Lyme doctor, who promptly pressed certain areas of my breast bone and declared I was lit up like a Costochondritis Christmas tree. My pain was as real as this oddly named condition.
If you are like me, you hear the name nutcracker and think of Christmas. But, I am here to tell you that this condition is anything but a holiday. Nutcracker esophagus also known as esophageal spasms are often caused by malfunctioning nerves that aid in controlling the muscles you use to swallow.
I have two words for this condition, extremely painful. Imagine a major muscle spasm in your esophagus. It feels like the most major heart attack pain. This is some of the most intense pain I have ever experienced and I have survived multiple kidney stones and unmedicated natural child birth of two 9+ pound babies, so that is truly saying something.
The pain I have felt from this radiates down both arms and across my entire chest. It feels like there are five elephants sitting on my throat and chest. My esophagus itself clenches like it is in a vice grip with repeated spasms. It makes it difficult to get a good, cleansing breath. You literally feel like you are smothering to death.
Again, this condition has landed me in the emergency room. I was seriously convinced I was having a heart attack. Combine Costochondritis and esophageal spasms and you have a real winning combination for crazy town.
These spasms are much more common in the over sixty crowd, they are also related to acid reflux disease. Lyme disease has literally destroyed my digestive track. I am in my forties and suffer from severe acid reflux so bonus, I win the grand prize of nutcracker esophagus to go along with it!
Well this needs very little explaining, but nothing is more embarrassing than a Russian roulette digestive tract. It is honestly very hard to know what the day will hold when it comes to digestion with Lyme disease.
I feel permanently uncomfortable and it is no fun. Try driving down the road and the “urge to go,” hits you like a freight train. You must find a bathroom, but there is not one available for miles. You just have to cross your legs and grin and bear it, while you feel like your insides might explode.
IBS should stand for Insistent Bowel Syndrome, because that is most definitely what it is. It cannot and will not be ignored. I have an intimate knowledge of almost every public bathroom in my general vicinity.
Life with Lyme is like living on a Tilt-A-Whirl at the fair. It is next to impossible to find balance when you feel like you are existing on a merry-go-round. The ground constantly rises up to meet me and I regularly run into corners and walls. The ground feels as if it is a pile of pillows, uneven and unstable.
Thanks to neurological Lyme disease my inner ear is permanently messed up. I could be a bobble head doll on a dashboard every day. Most days I feel like Wylie Coyote after Roadrunner has dropped a ton of bricks on his head. I see stars and not the pretty kind.
There is nothing worse than being out in public and feeling like a drunken sailor. It is exhausting to wear a mask of normalcy, while on the inside the walls are caving in.
I think one thing and say another. This is the story of my life. Brain fog has been my constant companion for many, many years. There is nothing more embarrassing than being asked to recite your phone number and drawing a complete blank. Better yet, having someone ask the ages of my children to which I promptly reply, “Ummm….” while frantically wracking my brain for the requested information.
The sad part is that this is not an act. I really cannot remember these simple things. Carrying an index card in my purse with all of my pertinent information has been a huge help. On this little card I keep phone numbers, addresses and more. When I visit a new doctor I just pull out my trusty little card and copy. My faulty brain appreciates the help and I don’t end up with a panic attack!
Some mornings while preparing my children their breakfast, I will lean over give them a kiss on the cheek and tell them to, “sleep well.” I have my mornings and nights mixed up. They look at me with a puzzled expression and ask me if I am okay.
These are normal occurrences around here. If I try to read a bed time story to my daughter, I mix the words up on the page. Honestly, reading aloud and talking on the telephone are two of the biggest challenges that I face on a daily basis.
Where did my brain go?
I cannot tell you how many times I have tried to pay for a purchase with my Costco membership card. Some days brain fog can be even more dangerous, like the times I forget to cut off the oven after cooking dinner. Three hours later my husband will walk by and see that the stove is still on and ask me if there is something in the oven. Of course there is not, I just forgot to cut the darned thing off! Hello, fire hazard!
Laughter is the best medicine.
With all of this said, I have learned through these experiences that the best possible way to handle them is with humor. Learning to laugh at oneself is the key to surviving a life with chronic illness.
I think it was Reba McEntire who so aptly stated that, “To succeed in life you need three things: a wishbone, a back bone and a funny bone.” Facing life without laughter would be a sad life indeed. I truly love to laugh. The movie Pollyanna comes to mind and playing the “Glad Game.” There is always some small glimmer of a silver lining in every situation I have faced.
So the next time you are on the receiving end of the laughter of the emergency department at your local hospital remember, you are not alone! “Life is better when you’re laughing.” Try not to take it all personally and chalk it up to an educational experience, not only for yourself but for those crazy doctors who think they know everything. Secretly, we know it’s not true, so the joke is on them! After all in the words of the wonderful Charlie Chaplin, “A day without laughter is a day wasted.”
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