On April 13, 2008 I reached the five year mark of having been diagnosed with Multiple Sclerosis. In light of that time reference, I felt it necessary to look back and document a few things. This is more about making you aware of the things you don’t see and the things you don’t experience. The only thing we truly have in common on this is, knowing how important it is to keep a positive attitude. What we don’t have in common is the experience. With that said, after spending five years “looking on the bright side” I’m constantly disappointed in the progression of the disease within my body and the sometimes, select blind ignorance I face from co-workers, friends & family. I’ve also come to realize that sometimes people don’t ask because they either don’t want to know, are afraid of social discomfort or they for what ever reason, don’t want to accept the reality that I have a incurable, debilitating disease called Multiple Sclerosis.
What you’ll find in the following paragraphs, is a no holds bared account of a slimmed down version of my life with my MS. I’ve also not “polished” or “padded” anything to protect your feelings. This isn’t any Disney production and it certainly could be described as a dark piece. What ever “color” you choose, it’s still the truth and that’s the fact.
If you want to face the truths with me, then by all means, read on and I love you truly for that. If that’s “too hard” for you, imagine what its like for me 24 hours a day, seven days a week. And after that, don’t bother thinking “he looks ok” or “he doesn’t seem to be too sick” or “my friend has MS and he doesn’t seem that bad”, because you are only fooling yourself and certainly not helping me in anyway.
I don’t want anything from you; I can only hope you might respect my situation. If not, cheers then I guess!
I remember it took several months, from the start, to reach a diagnosis. The time spent getting test done, doctor and hospital visit seem endless, the financial burdens are heavy and the waiting factor plays a heavy toll on you emotionally and later, physically. Over the years medical science has yet to have one particular “test” for MS. In most cases the diagnosis is based on several factors: your symptoms, various test results and an opinion from a Neurologist. To say “having patience” is important is certainly an understatement. The word courage seems more applicable over the long term. But most importantly, from my own personal experience, is that you must first accept it. Once you have done that the next thing is educate yourself daily, pay attention to your self and learn to understand that at some point you won’t be able to control yourself as you have in the past.
Now that we’ve sort of addressed the initial disappointments I faced, then began what I refer to as my “wonder years”. Those are the seconds and or minutes of each and everyday, I spend wondering what will I feel or what won’t I feel? How will I be or how I will not be? Should I plan something or should I wait and see. If I’m feeling worse will they understand or will they be angry? Will I be able to handle the day or not? How long would my will to fight last? What if there isn’t a “wonder drug” around the corner? How will I deal with the denial from friends and family? How will I afford to care for myself? Will I be able to keep a job? Will my short term memory last, especially when I need it? Should I go to the movies and risk my legs failing me? What’s the next thing I’ll drop in the dish drainer? What if both my arms get heavy and numb while showering, how will I hold my soap? What happens the next time I loose my balance if I’m home alone? Since this disease weakens me emotionally and sometimes hinders me medically, how will I be able to be strong for my family when they need me? Will I ever be able to afford all the necessary medicines to lessen my symptoms? How tired will I be today? Will I ever have another “healthy” relationship? And if so, how will my E.D. affect it? When is the next Migraine? How many more nights will there be when I have to bite down on the sheets to muffle my screams of pain? Will I ever have a normal, drug free period of sleep? When is the next time I can have a normal bowl movement? When is the next time I loose my feelings in my feet while at a stop sign or red light? How long will I be able to walk on my own? How quickly is my eye sight going to dissipate? Will my friends be able to “handle this” and or me? And for how long? When will it start making it painful for others who don’t deserve more of the same? What happens when my family really needs me? What’s tomorrow mornings pain meter reading? How long is my employer going to overlook my daily tardiness? Where will the extra money come from when I loose time at work, each week? I can’t work a normal 40 hours and don’t qualify for partial disability, now what? I can only afford a few of the prescriptions, which ones should I choose? Seeing the neurologist quarterly costs me about $300 out of pocket and there isn’t a cure? What if I forget to wait the correct amount of time and accidentally take a prescription and mix it with another? Will I remember to make the call, show up on time, pay the bill on time, write the letter, the persons name, how to get back, why I went in the first place, the correct answer or procedure. Will I be able to remain calm, focused, speak correctly, react accordingly? Lets take a deep breath and skip anything else on this part.
What things have changed? I have a lot more muscular pain than before. I have more crappy days than “ok” ones. I feel “sickly” everyday. My short term memory has lessened. My eye sight continues to show decreasing signs of weakness and clarity. I don’t leave the apartment much. I don’t call people on any kind of regular basis. I am very slow on email responses. It takes three times as long to get “ready” after waking up. I no longer get any real, good rest unless its drug (prescription) endued. I experience a loss of feeling on various spots on my body, often. I am more sensitive to temperature than ever before. I am much more tired, more often (now daily) than ever before. I come “undone” within a matter of seconds. When faced with multiple challenges, I generally fail and or make the wrong decision. I forget the names, sometimes, of the people I work with. Experience several migraines a year, which are very destructive and debilitating. I am late for work, everyday. I experience many, uncontrollable bowl movements. I watch TV, daily. I think about dying. I’m poisoned with anger that won’t go away. I have become, selfish. I’m unreliable. I can’t stay focused on too much, for very long. I use the walking cane more often. I have more, lower back pain daily, than ever before. If I sit or lye for more than one hour I generally feel signs of pain in my legs, immediately. A straight, two hour sit is very risky. I drop more things, more often. Especially painful are the irreplaceable, collectibles that I cherish. I fall asleep, sometimes, sitting on the toilet. I don’t always get the luxury of “normal” bowl movement or urination process. My sight is very blurry at times. I pace the apartment, regularly. I can’t seem to keep anything in place, for very long. I care less for a great many things. Moments now have worth. I listen to my Manilow music tracks, more often. I now longer “hope” for things from some of my family. I don’t find myself wishing to often. I know what I am living for. I’m a self survivor of a six year cocaine addiction. I now face the reality that I will remain, with out a mate, for my remaining years. I have reduced my smoking by 50%. Stress destroys me and I suffer those consequences for days at a time. I have a car with power windows. I can only afford some of my medications. Yes, that was a scaled down version.
Oh and one last bit of information to this question “what makes me nervous?”. Walking, talking, sitting, thinking, speaking, traveling, bed time, mornings, driving, eating, sleeping, peeing, pill taking, working, shopping, socializing, confrontation, the general public, weather and time itself.
In my own defense, I do choose to face each day with all this uncertainty as best I can. More often than not, all the positive thinking isn’t nearly enough. I get by, I still survive.
And after five years of slowly loosing control and embracing all the changes, all the unknowns, I’ve become a sad, broken and very angry person inside, This is a someone I never wanted to be, one I had been when I was younger and certainly one who truly only has but one hero, myself.
