I will die WITH Multiple Sclerosis, not FROM Multiple Sclerosis! This has been an epigram by which I have lived since being diagnosed with Relapsing Remitting Multiple Sclerosis in March 2000. There are very few people in my life that KNOW the true effect this illness has had on my life and how I am able to live it. I was a double major at Ole Miss (The University of Mississippi for international readers) studying Marketing and Real Estate. I took the Brokers exam immediately after graduating, but not one day did my Real Estate Brokers License get put to use. But the aspects of Marketing have followed me in every area of my life – and life with MS being one.
How do I use Marketing in relation to my MS you may ask? Mainly, I TRY to present the best face! Most people, other than my family have never seen the amount of TRUE down-time I have as a result of my MS. They only see me when I am feeling good or decent anyway. With Relapsing Remitting Multiple Sclerosis what happens is just as it sounds. I have relapses and I have remissions. This is not completely true in that one symptom has been CONSTANT for me for more than 5 years now. The numbness someone feels in their leg when it goes to sleep, I have had the nonstop for more than 5 years In all of my right leg and from the knee down in my left leg. This symptom sometimes becomes more severe and causes me to fall, trip, and limp. These are the days few people see me.
My legs show the constant battle scares with the wars of the simple effort of walking. MS also sometimes causes me dizziness, so add that to numb legs and sometimes just getting from the bed to the bathroom without falling takes effort! Another of the most common symptoms is fatigue. Fatigued, dizzy, combined with numb legs can create DAYS of anti-social behavior and hours of sleep even most teenagers fail to accomplish on any give free weekend. The use of a cane is sometimes needed even inside the house, so when this trifecta of symptoms hits, I become a hermit. When traveling, I general need the use of my cane just because the act of keeping a schedule, carrying luggage and the stress related to travel (thanks TSA – it is very easy for me to take off my shoes and but them back on with a line of people breathing heavy and muttering “HURRY UP!) The photos represent marks from just the last month of “walking” or attempting to walk!
Also as the name implies, there are MULTIPLE symptoms during relapses usually. I am familiar with most of the symptoms listed on the photo above at one point or another. When one symptom passes another comes it seems. But the beauty is I can market the pain as less painful than the reality or I smile even when it takes all I have to just not scream! Since the relapses change and each person with the disease have different symptoms, MS is frequently called a designer disease. This makes marketing my illness easy because as in this blog, I can only speak for myself and how MS affects my life! Anyone that knows me knows I am a shameless self promoter! lol
There are few photos (if any) of me with or using my cane. The one I use is kind of a combination of a crutch with a cane. It is not that I am ashamed of NEEDING walking assistance, but I am able to “market” myself as healthy and happy like most people like and want to see. Simple activities take more from me and takes me more time to recoup from doing them. Friends know I do not go out much any more because not only do I have to have the energy and ability to go, I pay for it usually having fatigue from a night out – even if I do not drink a thing! Any friend that has had a “night out” with me… please see that as evidence you are worth the extra effort. For those I have said no to, understand it is not you… most times it is just my body does not cooperate. Most likely I used a different excuse than my MS, because actually – I like when people FORGET I have it… I WOULD LIKE To FORGET MYSELF! But my body reminds me too often!
Facebook is a haven for me to post photos from times I am feeling good and that I actually do get out and do something fun. I even at times market
myself too well, with people thinking my MS presents little or few challenges in my life. My idea is I better do it (whatever it may be) while I am feeling ok because the moment I am ABLE to do “it” may pass. There are things I am willing to share in my blog that I do not share with REAL people in my life, because the people “in” my life, I am afraid of them feeling pity, sympathy or sorry for me. Breaking precedence, look here…a photo of me WITH my cane (I have named it Pablo and the story why will come later)! If you are someone “in” my life and this blog reveals new information to you… you have fallen victim to my marketing and as I have learned from experience – I am damn good at marketing, especially marketing myself!
I will post about my life with MS weekly (I hope)… follow my blog and feel free to donate! 😉
This was great. Sorry you are going through this but sharing it enlightens those of us who have been lucky in our health and helps others know they are not alone. Maybe after you blog on this awhile, you can put a book together on how to deal with M.S.