When I was diagnosed with multiple sclerosis, my name was on the lips of everyone associated with my family, my job, my friends. Tragic news always makes headlines. Sympathy runs rampant and solicitation becomes an expected reaction. As soon as the novelty of knowing someone with MS wears thin, infirmities are often forgotten. I don't really mind. In fact, if my MS is not part of the conversation, I am relieved to not feel the need to make excuses.
I do not rely upon my disease and am even kind of embarrassed (for me as well as for the interrogator) when I have to explain my cane, my limp, my slurred speech, or my lack of energy. It gets tiresome; but, I remind myself daily to be grateful for being blessed with tehh ability to continue working and to function in a relatively "normal" manner.
The first advice I was given upon diagnosis was to join a support group. I did. I was mortified. I spent many, many hours planning the end of my life rather than being inspired by the brave stories shared at these meetings. Support group is a wonderful thing for a lot of folks. It just felt like defeat to me.
The second piece of advice I received was to file for disability. This action would possibly remove me from the work place, maybe affect my insurance so that medication would not be as expensive, and identify me as a certified handicapped individual.
"Take your medicine!" was another cautionary comment that repeated itself at any given time. The problem with the "medicine" is that as far as I know there is no MS injection or medical activity that can stop MS. At the time of my diagnosis, all meds were injections and still in the experimental stage(s). Conflicting stories of when treatment can cease because it is no longer working circulated in my cubicle of MS acquaintances. A friend fifteen years my senior stopped taking weekly Avonex injections at the age of 55. A much young friend simply stopped injecting Beta Seron when it became too exspensive for her lifestyle and she wasn't impressed with the beta blocking it was supposed to provide. I actually ran out of my own Beta Seron in February 2011 when the snow covered roads did not allow me to travel to the pharmacy. Within thirty-six hours med-free, I had more energy and cognitive prowess than I had had since beginning injections in 2001. My injection site bruises healed and I began sleeping through the night again.
I am not saying that medication does not help the lapse of time between MS exacerbations; I just know that while still injecting I suffered two exacerbations and with the added sided effects of Beta Seron. Since February 2011, I have no worse without Beta Seron; but I AM more alert.
This is not a personal attack on MS medications. When I was instructed on my own treatment, I anxiously obeyed the protocol and travelled religiously with my needles and vials. I took my medication regime seriously and felt relieved to have medical science on my side. And maybe the ten years I devoted to MS drugs benefitted me. I will never know. The mystery of MS may never be solved, but I am hopeful.
Since 2001, I have learned that MS is not a fatal condition. It is the effects of MS that create situations conducive to death. So, in a nutshell, my MS could be compared to the probability of dying in a car crash. There is no cure and fate doesn't allow it to be avoided. My mother has actually wondered if she could have done something early in my life to alter the existence of MS. It's not her fault that my nerve endings are funky. We don't know what causes it any more than I know why my dear friend is in a wheel chair and I am not, or why a former colleague requires 24 hour assistance and I do not.
It is what it is and I will make the bet of it s long as I am able.
Thanks for letting me rant.
Jump in any time you like.