Should I begin before or after being diagnosed? That’s a good question. My diagnosis was almost exactly two years ago at the age of 38, but I have finally come to the realization that I’ve probably had MS for most of my life. I just had no idea. I should have known, but I didn’t. I thought everyone felt this way on some level. I just figured I was out of shape with bad eyesight and hearing. I thought some of my problems could be due to natural age progression. I really did, but boy was I wrong.
Okay, sure. I have a 2ND cousin who also has MS, but she is much older and I’m sorry to say I really don’t know her. Looking at my family tree, I never suspected MS as a potential threat. Out of my maternal grandparents’ 6 children, 15 grandchildren, 27 greats, and 2 great greats, I’m the only one who has an MS diagnosis. No, I never considered the possibility that MS would one day introduce itself to me as it did.
I recall that age 38 had not gotten off to such a great start. My outlook on life was quite bleak to be honest. The big dream of finishing my degree had rapidly faded somewhere in the distant past. The hope of finding a better job outside of my retail management experience seemed like a fantasy. My marriage was new, fresh, and sweet, but I couldn’t figure out why we hadn’t been able to get pregnant. Plus, why didn’t I have the energy to enjoy my free time? Where had my enthusiasm for life gone? Why was I so irritable and blue all of the time? Honestly, I loathed myself back then. The only thing I looked forward to was coffee, a fresh pack of cigarettes and my husband’s companionship. How pathetic is that? Sounds like my hubby had really found a jewel when he found me, doesn’t it?
Retail may sound easy, but I was a team leader and the job was stressful to the max. It never seemed to matter what I did, I could never meet my company’s expectations nor could anyone else who tried. The top managers were never satisfied with our store. In my 12 yrs, I may have had 20 different bosses. Not even the best man nor woman could hack it for long.
I felt like the stress of that environment was killing me slowly. I often fantasized about throwing my keys at the current boss’s feet, telling him off, and dancing to the front door with whatever energy I could muster for the day, but I never had the guts. Instead, I just complained all of the time and was an absolute joy to work with each and everyday. Yes, I’m being sarcastic! I was such a negative person, shamefully.
For the 2ND year in a row, I had entered the Christmas season… you know, just after Halloween in retail world… with this strange, creeping numbness from my waist down to my toes. However, when my toes weren’t numb, they were incredibly sore and so were my feet and ankles. In fact, they would swell up like balloons. I had cankles! It wasn’t pretty. There wasn’t a style of shoe on the planet that seemed to make them feel any better.
I just figured that putting out stock, lifting heavy boxes and keeping long hours had injured my back or caused a pinched nerve. I was getting older, wasn’t I? I was just overworked and unhappy. I was getting fatter and maybe it was early menopause. Shoot, maybe I was finally pregnant and would be one of those women who didn’t know she was pregnant and would one day I would give birth in the bathroom at work. Oh, the horror!
I just knew I didn’t need a doctor. I didn’t need another bill, and I didn’t feel like going to a doctor and having to weigh in front of other human beings.
The first year of my mysterious numbness came and went and I forgot all about it until it happened again the next year. It was that 2ND year that my blanket of “self diagnosis” began to unravel. I couldn’t walk in a straight line for anything. Something strange was going on with my vision. My hearing was fading in and fading out. My body just ached at times. I wet my pants one day on the way to the bathroom at my house, but I leaked everyday and had started to wear a pad, which made me quite ashamed. I was incredibly depressed. I felt dizzy at times and wanted to vomit. Some days I did just that.
Then one of the worst things happend one evening. It is one of my most embarrassing moments of my life and quite hard to admit to anyone even fellow MSers, but here it goes. I was standing alone in the parking lot at my job and just about to walk to the front door, when it happened. I lost control of my bowels with absolutely no warning. I had been constipated, sure, but this was more horrid than that. I had experienced rectal leakage at times, even if I would never admit it…not even to a physician, but this was far worse.
I drove home and called my boss on the way. I told him I had soiled my clothes when I threw up on myself, because my dinner hadn’t agreed with me. I lied to him, but I couldn’t lie to my husband. He was home and I had to honestly tell him what had happened. There was no way to hide it. In fact, that wasn’t even the first time it had happened. It was just the first time I had to reveal it to another person and I couldn’t hide any longer and pretend it never happened.
This coupled with my sudden difficulty in climbing the front porch steps, prompted hubby to ask my family for help. He asked them to make me go to a doctor. He had tried and failed many times. I was certain I just needed a few days off and to lose a little weight. However, weightloss could not explain why I was suddenly having trouble writing a sentence or understanding what I read, when I read one.
I couldn’t spell certain words any longer. I couldn’t remember numbers. I would forget the topic, when I was in the middle of a conversation. I was a mess!
One day, my boss yelled at me. He blamed me for something I didn’t do and there was no way to prove otherwise. I took a few steps and hit the floor with incredible force. I felt strange when I climbed back up to my feet. I was in some kind of daze. I’m not sure how I drove home that night, but I did. I tried to read before bed, but the lines of the book I was reading seemed to run together. I finally gave up and went to bed.
On the next morning, the world looked so different. I couldn’t walk without leaning on the wall or the furniture. The left side of my face was dead like someone had drawn a line straight down the middle and cut half of it away. My speech was slurred. I could only focus my vision, if I covered up one eye. Either eye would work, but just not in unison. I thought I had a brain tumor or maybe a stroke. Which would be better?
To make a long story short, I was diagnosed with MS officially after 2 MRIs and a lumbar puncture. I was in such a deep fog that I wasn’t sure what questions to ask, so I can’t tell you how many lessions I have or where they are. I just know that they are there and my problems were not due to an inner ear infection, like I had wishfully asked my general practitioner. To his credit, he didn’t laugh in my half paralysed face.
The days that followed my diagnosis were life changing for me. I found out that my newlywed husband really does love me for better or worse, richer or poorer and in sickness and in health. He stands by me to this day, which is good, because I’m unsteady on my feet at times. He did something else, he prayed with me and I remember how he took my hand, wrinkled up his nose, and told my folks in a cute voice, “No matter what, I still loves her!”
Here goes the big one! During the 2ND MRI, I heard a voice just as clear as day tell me that everything was going to be alright, if I would trust in Jesus Christ. I don’t even care if you believe me. It was more real than rain. I accepted His offer even if I didn’t deserve it. You know what? Everthing is alright! In fact, it is wonderful! Yes, the MS is lurking, but I’m doing pretty good for a mature woman who has the monster sclerosis. I’m not afraid.
In fact, I found blessing from the curse of it. In a contraversial fashion, I declined traditional meds to slow the progression, but I did except the steroids, which helped right some of the wrongs. I still can’t spell very well and forget about remembering numbers. There are other things also, but with loss there is sometimes a lot of gain.
I exchanged my young, flashy neurologist for an old geezer. The old geezer liked my attitude and he encouraged me to give vitamins and a better diet a shot, so I did. I also prayed that the Lord would take away my addiction to smoking and he did. I quit cold turkey and the smell of them makes me turn green now.
Best of all, my hubby and I became parents in our sort of old age. My husband told me to ditch the job. I left with dignity and no dancing. Sure I have my bad days and I sometimes get the blues, because I watch the news and I still have bills. However, life is good even with the monster lurking about. Jesus is great and I owe it all to Him.
A goal of mine is to never need a wheelchair.
Now, if you will excuse me, diaper duty calls. No, I’m not talking about adult diapers….yet. Avoiding those is yet another goal.
Many blessings to you all!