As far back as I can remember my life seemed so different from others.
There were the constant mind-blowing headaches, getting dizzy at the
drop of a hat, intestinal tract issues, and bouts with nausea.
I was raised in the Tidewater region of Virginia where water was abundant
and Sunday drives were the norm. Sitting in the backseat on the old horsehair car seats, I became nauseated as my father smoked nonstop with his window rolled down, the stench of his foul smoke mixed with the aroma of nature’s perfume from the crushed oyster shell roadways. The sea salt water, the sweetness of honeysuckle, magnolias, or Lord knows what churned my stomach, hurt my head, and made me spin! How I hated those Sunday drives, the bridges and ferries, and the noisy, crowded, family-style dining rooms penetrating loudly inside my head. Going anywhere by car set me off and was just no fun!
Being a fair-skinned, freckle-faced, pigtailed-redheaded child was bad
enough, but not being able to swing on a front porch swing without turning
green was even worse! Water was no fun either. Watching it gently
rolling along the shoreline, or forceful waves forming endless whitecaps,
knocked my balance off. I looked like a drunken sailor! Childhood games that
included jumping, running, and spinning were definitely out of the question.
In retrospect, most of my childhood memories were of white coats, white
walls, medical equipment, and seeking answers as to why I was having
this strange phenomenon. Things didn’t change as my body matured. It seemed
to go from bad to worse. I have been all over the world, and my symptoms never abated. They were often made worse by environments, weather changes, and altitudes.
The good Lord must have been busy the day I was created because, based
on the anatomical charts, my “main frame” has too many parts, damaged
parts, or other parts hastily and incorrectly placed! I have accumulated more autoimmune disorders than the average bear, and have been hospitalized too many times to remember. As a result of assorted surgeries, my body resembles a patchwork quilt, and after all has been said and done, I am still DIZZY. But now I am a blonde, so it fits at long last!
All kidding aside, the journey thus far has been far from easy. For years I
have had an assortment of disorders that aggravate each other, but I also have Meniere’s that wasn’t correctly diagnosed until 2002. Of all my many
ailments from Post Polio Syndrome, Fibromyalgia, Myofascitis, allergies,
asthma, Hashimoto/Hypothyroidism (low thyroid function), to sinus issues
and more, Meniere’s is my nemesis! It not only robbed me of my childhood,
but robbed my children of theirs as well. It consumed much precious time that should have been dedicated to them rather than them being a “mother” to me when I was at my worst.
Shortly after the death of my husband, I found myself deep in grief,
something I wouldn’t permit myself to do during our journey with his
ALS. It took a while for the full impact to surface, and when it did,
all hell broke loose! Down to eighty pounds, I forced myself to eat,
picking Lean Cuisines thinking they were healthy. That was my
Having been improperly diagnosed with diseases such as MS and Lupus, the Lean Cuisines were a blessing since they contributed to the attacks that
sent me to an exceptional ENT. Apparently the high sodium counts in my
“healthy meals” promoted more violent episodes of spinning, dropping, losing consciousness, vomiting, hearing impairment, fullness in my ears/head, blurry vision, irritating sounds within my head, and much more.
Tests were done, and the “beast within me” was rightfully given the name
Meniere’s Disease, also known as MM. It has the ability to mask itself,
making it difficult to be properly diagnosed. One important thing to remember about MM is that it isn’t fatal, but it can make your life uncomfortable. It requires a strong sense of humor, a desire to rise above it, and a good, knowledgeable support system from your family, friends, and medical experts. MM can be worse than disabling. You can’t will it away, but you can will yourself not to permit it to be the only focus in your life.
My MM is bilateral. It has robbed me of 85% of my hearing in my left ear, and 80% of my hearing in my right ear, when it isn’t fluctuating. There are still days I can’t put one foot in front of the other without the aid of my walker or cane.
The room spins about me, my eyes are swimming, blurry or simmering, I have a symphony of undesirable noises echoing inside my head, and my “brain fog” (not being able to concentrate, remember, or being just spaced out) is full tilt. Being a member of the 24/7 MM three-ring-circus is definitely overwhelming. It makes life extremely interesting, to say the least.
Tubes, the Meniett, and many other treatments failed, so I tried surgery in an attempt to ease my symptoms. I got some relief from the first sac decompression surgery, but regret the second surgery. Still, the bottom line is that I am no longer continually confined to my bed or my home. There are many days I have the ability to participate in life with great gusto, while other days are so-so, but I CAN partake in it rather than not having a choice or wasting the day in bed sick.
I am in my sixties, and I am catching up with others here in my retirement
community. They refer to their memory issues as “senior moments,” and for the most part are in their late sixties to early nineties. What really bugs the crap out of me is that most of these people still play tennis, golf, bridge, travel, dance, and in some cases live by themselves with no assistance, and run circles around me with their high energy levels! While I am struggling in the Wellness Complex pool working on strengthening my balance issues, they are like Dolphins playing in the water with no safety float belts, no pool shoes, no webbed hand gloves to stave off the pain in their hands, no ear wax, nor a person on either side of them as a
support system! Yet I am happy for them. They are exactly where I had hoped to be at this stage in my life. Still, I know I am exactly where I should be and that acceptance of what I have encountered has made my life more rewarding.
Acceptance empowers me, it sustains me, it steadies me, it gives me purpose, and slowly I am learning to like who I have become, and not grieve over who I was. By letting go of the frustrations and concentrating on the positives, I am making progress.
On the other side of the MM coin, although I am not the “freshest cookie in the package,” way too often having trouble “connecting the dots,” I am doing more than I ever thought possible before or after my MM related surgeries. Through Menieres.org, I have gained valuable support systems and many close friends, and it keeps me knowledgeable. It also keeps me going while my children are six hundred miles away. Some don’t understand when I say MM has been a blessing, just as ALS was. Sure, I would have preferred never to become this fully acquainted with either, except each has brought invaluable resources and individuals into my life, and that would not have happened otherwise.
Each journey begins with the first step. That step must be optimistic and firm or else we will go off course at the get-go. Although my steps may be wobbly, there is a purpose to each of them. I have a goal. My goal is to be the best I can be for ME, and then I will be the best I can be for my family and friends. Although I waiver more often than I would like, I know that I have a “guardian angel” encouraging me along, and the firm, loving hand of a higher being to pick me up when I fall. I have learned that although I have undervalued myself by feeling worthless, unattractive,
and unlovable, I am still a wonderful, desirable person thanks to my family, friends, and a sweet man whom I call M.
All in all life isn’t too bad at all, just a little unsteady at times!