New Symptoms?

I prefer to mingle my regular life with my MS life on this blog. Yes, I do see them as different entities – a Janus being. On the one hand, I try to keep things ‘normal,’ as they were pre-MS. I fall back on the same traditions, the same procedures, despite the fact that all things required adjustments. If you burrow down in this rapidly declining shell, it’s still the same me in there. That’s what I call my regular life, and I can write about family, decorating, cooking, or any other banal subject. It’s almost as if I believe that by discussing ‘normal’ topics, I’m still living a ‘normal’ life.

On the other hand, I need to be honest and delve into the darker side of my existence – the black hole of MS. On a rational level, I know I’m no longer ‘normal,’ but I hate to constantly discuss all my ailments. Talking/writing about it makes it too real and I’m always looking for an escape. I also find that I make assessments in shorter time increments, thus making the changes too subtle to accept. I’ve probably had MS since the mid 90s, but I wasn’t diagnosed until July of ’04. I knew there was something going on, but I chose to ignore it until the symptoms became too much. So in ’03-’04, during my quest to find answers, I thought I was in terrible shape. Now, in less than a decade, I see that time in the past as pretty good.

I could walk without assistance, albeit with a limp. I could do steps several times a day. I did PT two or three times a week, and it seemed like gym sessions. I wrote longhand with no problem other than fatigue. I drew, painted, did needlework all the time. I danced, I ran, I drove a car, I worked long hours. I cooked and kept house. I could shower and dress with ease, and have my whole morning routine finished in less than a half hour. Now, if I compared that with the following year, there may have been some small changes, but nothing drastic. However, if I compare that time with the present – wow, what a difference. At this point, I see myself as a very disabled person, and if I see it, then so do others. I use a walker now even in the house, I only do steps once a day, my right hand is little more than a club hanging at my side. I can no longer drive (my decision,) I do very little housework, it takes me an hour to get ready every morning, and I’m usually exhausted from the smallest exertion. When making a comparison that way, I see how much I’ve really changed.

I stopped all meds last year – Copaxone just did nothing to help me. The neurologist kept insisting that it would slow progression, but I’ve seen no change in either direction. I do see new symptoms that I often want to downplay or chalk up to something else, but I know it’s MS rearing its ugly head again. I have swelling which could be due to my inactivity, and I get a stitch in my side occasionally, probably from twisting in the wrong direction. I try to pretend – I do a lot of that – I’m like an athlete, and I over exerted and pulled a muscle. A more prudent individual would make a doctor’s appointment and get it checked out. I hesitate in making that move, because I’m not that enthusiastic about either my neurologist or my primary care physician. Also, no matter what I present to them, I know I’ll have to start getting tests done, and I just don’t want to. I have bad memories of the last time I went for an MRI. I always wore clothes with absolutely no metal, so I didn’t have to change into those fashionable paper ensembles. Never a problem. Then I ran into Miss Fancy Pants Stupidhead Do As I Say Pain In The Butt, and she insisted (nastily) that I change. It took me forever, totally exhausted me, had me close to tears, and I could hardly walk. After the test, I told her what I thought of her and informed anyone within earshot that I had no intentions of ever darkening their doorway again. I’ll do blood tests, but that’s it.

So, as stupid as it may be, I’ll learn to put up with the latest symptoms. I’ll live in my fantasy world and pretend everything’s fine. I’ll look at this in a year’s time, and see only a slight decline. Then if I’m still around in five or six years, I’ll recognize it as major change. Thus is the combination of my two lives.

Peace,
Muff