Stress is a reality everyone endures in their lives and the triggers are numerous. Finances, kids, marriage, relationships, career, politics, love, hate, death and religion are a few that come to mind.
The issues that create stress in our lives are as unique as how MS affects us as individuals. What bothers you or causes pain in your life may bother me a little or not at all, and visa versa. Having said that, I think we can all agree that living with a chronic condition qualifies as a huge stress inducer. The ironic thing is that stress is one of the worst things possible for people with MS. But how can you avoid it?
Starting in 2005, I endured a two year period of intense and constant stress. Up until then, I had been pretty good with managing stress and not letting it affect me, but what was unique about this siege was there were a handful of fronts I was battling simultaneously, and they were all hot button triggers for me. I could feel the stress consume my mind and body, but failed miserably in combatting it, or at least in taking better care of myself. Shortly after this battle ended, the symptoms appeared, never left, and I was diagnosed.
While I can’t prove clinically or otherwise that this caused my MS, I believe it to be true with all my heart. At minimum, it was a major contributor.
Once the symptoms impacted my daily life to a significant degree, I stopped stressing out about a lot of things. The fact that, unlike many people with MS, I don’t live in chronic pain, am not confined to a wheelchair, and am not struggling to make ends meet because my condition doesn’t permit me to work or perform well at my job, certainly helped. How can anyone not be frazzled by having to endure that? My symptoms are annoying, severely limit what I can do, and have forced me to change a lot in my life, but I don’t live with that kind of fear or torment. My reality gave me a very different perspective about life, and made a lot of things that used to bother me feel trivial and unimportant.
Don’t get me wrong, I’m not Mr. Cool, Calm and Collected. A few things remain that I get stressed over, stubborn remnants of my core personality. The one thing I know for sure is that when stress begins to pluck my nerves, my MS takes notice. Stress exacerbates my symptoms, and I can feel it happening. My leg feels flushed, as if what little strength remains is being drained. The limb dangles, flops, and sometimes feels like it doesn’t even exist. I feel like an amputee whose prosthesis is missing, and I have to get from point A to point B without anything for support. When this happens I find a place to sit, close my eyes, and try to focus on my breathing until I can feel by pulse subside and body relax. Normal feeling usually returns shortly thereafter.
Obviously, dealing with PPMS has added to my list of stress triggers, but not in the way you might think. I don’t stress over wondering about how I will feel a year, five years or ten years from now, if I will be confined to a wheelchair, if it will spread to other parts of my body, or if pain will begin to have an intimate relationship with me, because I honestly don’t think about that stuff. Not very often, anyway.
What bothers me is the wondering. What gets my mind going is when I feel something I haven’t experienced before, and wonder if this is the start of what will take me down one of those paths.
I don’t know a lot about RRMS because I never had to deal with it. What I know about that strain is from what the people who do have it tell me, or from what I read. And from what I gather, when a flare is underway, it is as subtle as a sledgehammer. There is no debate or question about what is going on. It is crystal clear and obvious.
My PPMS was never like that. My flares aren’t flares in the typical sense, but are often a subtle loss of function that becomes permanent. For me, it has been a slow and gradual process. The problem is, everyone has more aches and pains as they get older, or develop something that is more age-related than anything else. So if you get a twinge here, or something feels funny there, it’s hard not to wonder whether or not it is MS related.
When I’m on my feet a lot, walk a lot, or do some physical work outside, it isn’t uncommon for me to lose feeling in my toes, have my hip or back ache terribly, or have the leg feel like mush. If that feeling lasts longer than usual, my mind immediately wonders if this is the beginning of something bad. My rational mind is saying, “now Steve, this happens all the time. Take a chill pill and ride it out. You know how this song goes.” However, my emotional side doesn’t want to hear that. It wants to hop on the panic slide.
If you have read this blog, you know that I’m pretty good at compartmentalizing things, and so far I’ve done a good job at not taking the full ride on that panic slide. Maybe that’s because nothing catastrophic has occurred. I’ll lose a small piece of something, mourn it, say oh well, it could be worse, them move on.
Recently however, I can’t escape the nagging feeling that the progression has been moving a little faster than in the past, and worry that this might become a trend.
Last week, I described my travel adventure, and the one take-away from that trip is that, in all likelihood, I will avoid those kinds of meetings again. The facility was too big and spread out, the distance from my room to all of the meeting and gathering places was significant, and those excursions had to be made several times a day. I also had a much harder time negotiating big crowds. You see, it is really difficult to have a cane in one hand, a drink (or food) in another, and negotiate a sea of arms, legs and bodies belonging to people who are enjoying themselves and aren’t aware someone with terrible balance is nearby, and that bumping into him by accident could cause an embarrassing scene. Why should they? As a result, I stayed in my room more than I had in the past.
So, I’ve decided it might be better to connect with friends by going directly to their home towns, or having them visit me, instead of dealing with the obstacles last week presented. I can manage the airports. It’s the other stuff I can do without.
Here’s another example of why the progression train might be picking up steam. There are a few interior and exterior doors in our house that need repainting, and painting is one of the few things I can still do, and I enjoy doing it. But over the last few weeks, I’ve noticed painting isn’t as simple as it once was. Bending, squatting and twisting to get in a corner, or reaching up to get a high spot, take a lot more planning and effort. The task it is harder to complete, takes longer, and isn’t very enjoyable. That really sucks.
Have you ever woke up at night, not know what time it is, and heard the tick, tick, tick of your alarm clock? You can’t see what time it is, can’t remember if you set the alarm, and wonder when or if the alarm will ring. This describes the way MS causes me stress.
Do the episodes I’ve described mean this is finally it, that I’ve hit the downhill side of my MS curve? I hear the ticking, but I’ve been aware of the ticking the moment I started taking the hard-core meds. What drives me nuts is wondering if all this this means that the alarm to my personal Doomsday Clock is going to ring soon.
I certainly hope it doesn’t.
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