My Life is Life with MS
by Jane D
I will be 60 in a few days, and I have spent 35 years with MS; I was diagnosed at age 24. My best advice is to make friends with the MS as soon as possible since there is no point in living with an enemy. Yes, it can be a MonSter, but it can also be fairly benign. Much of how it is is a result of how we perceive it and how large a place we allow it in our lives. My original doctor's advice was, "Don't dwell on it." I couldn't imagine how that could be at the time, and for many years afterward, but it turned out to be excellent advice.
Fortunately as I matured, so did my ability to handle my MS with grace. I ignored the doctors' advice and had three children since that was my biggest goal in life. As it turned out,over the years doctors changed their thinking about the role of pregnancy in MS anyway. I am pretty certain that staying home rather than working made a huge difference in my stress level and thus my well-being MS-wise. Within five years we had three children that the world would be so much worse for had they not been born. For that matter, my husband and I--with or without MS--would be so very much worse without them in our lives! Sometimes you just have to go with your gut rather than doctors' opinion.
For all of the 35 years my symptoms have primarily been sensory. I began with brief episodes of vertigo, half body numbness, double vision, limping, L'hermitte's syndrome, and pain. At that time they didn't know as much about MS, and I was often told my symptoms were not possible, which was immensely frustrating! Sleep was my best and really only treatment other than the oral steroids I got when I developed O.N. which led to my "possible MS" diagnosis (which was all they had at the time since there was no MRI.)
I always knew I fit the criteria of MS, but the neurologist who ordered an MRI in 1985 did it, I knew, to prove to me I did NOT have MS. I saw egg on his face when he read the MRI report, and he very nicely told me he would help me in any way he could. Giving me amantadine was about the only thing I "needed" at that point. Sleep was still my best friend. After having babies, I got full body numbness with one, and not too many unexpected symptoms with the other two. My parents helped most by paying to have a neighbor come over after school each day to give me a couple hour respite. That in itself may have significantly helped my health more than anything else. It also really helped my life to obtain a disability placard to help with parking in the earlier years.
Doctors never saw my physical disabilities because I was always in pretty good shape when I went to their offices. They never saw me after any shopping or being
on my feet cooking or doing any chores. Over the years I became less and less able to perform these expected duties. Over the 35 years, I became able to not go into ONE store for more than half an hour-even using a needed shopping cart to hold on to. I simply didn't shop anywhere where there was not a cart in recent years. I often had to sit awhile before loading purchases into the car, and in recent years I have not been able to do two errands in the same trip.
Just a couple months ago I had a couple infections (bronchitis and MRSA) and without thinking, I had a flu shot. I don't know whether that had an impact or not, but I count it as a mistake. I had my only big exacerbation in years around Christmas (always a treacherous time) this past year. My ability to walk (even with a cane) greatly deteriorated and at one point I felt too weak to sit up. My neuro was on vacation, so my primary prescribed oral steroids for three weeks (3 then 2 then 1)(which had helped me when finally after many weeks prescribed for the bronchitis.)
I was having many falls and broke my shoulder in one when I told my leg to step, and instead I curled my toes, went forward with the rest of my body, and landed on my knee, catching my fall by holding out my stiff-armed left arm. Since that time I have had a lot of difficulty walking, even in the house. I often (but not always) walk very much bent at the waist with tiny, mincing steps or else wide thumping, lumbering steps. I hold on to furniture or the chair rail in some rooms or counters in the kitchen, and have chairs appointed in each room which I go to for much needed rest to make it to the next room. I have noticed the recovery time I have depended so much on over the years to allow me to do things (just in a much longer total time) is no longer very effective. Sometimes I can sit for a few minutes and go just a bit farther.
I'm generally fine awhile after a one or two hour nap. I use the cane both in and out of the house, and often resort to the wheeled walker to go to doctor's appointments. I haven't been many places besides church and there. I was given oral Bactrim (800mgs twice a day)--4 RX's--that's 40 days for the MRSA, a dime size spot on my shin which still hasn't healed after 3 months. My shoulder has healed. I guess it remains to be seen what my MS does. Both my wonderful husband and I realize this recent stuff all could have happened 35 years ago, so we feel grateful as I turn 60. My best advice to fellow MSers is to stay positive and look for the good--no matter what, there is much good in every life and we color our world when we find it.