Winter has arrived early in New England this year. Last Thursday, six weeks before the official start of the winter season, about six inches of snow fell during rush hour, paralyzing traffic and generally raising hell with our psyches. This was followed by a period of cold rain, which left a slushy mess the following morning, and a period of much colder than normal temps that were made worse by a constant breeze. More measurable precipitation is in the forecast during the next twenty four hours, and Thanksgiving temps are supposed to be what one would expect in January. Swell.
I mention this not because I hate winter, as you have probably figured out from all the posts I wrote last year. Nor am I writing about it because this has my nerves on edge because of its potential to raise some serious hell with our building timetable, which I will discuss in a future post.
No, the reason for pointing this out is because of what I have learned from our premature winter experience.
I don’t think my MS progresses in a typical way. Although get I flares from time to time, where something is noticeably different that does not go away, these are rare occurrences. I can count the number of times these have happened over the last eleven years on one hand. The best way to describe the nature of my progression is to use the following anlogy.
Imagine a river that runs through an unpopulated, densely wooded area that you can reach via a hiking trail. At the end of the trail, which is a scenic area, you look down about thirty feet and see the river carving it’s way through a rocky terrain. If you visit this place frequently, the sight that greets you down below doesn’t appear to change. But if you make the trip once every one or two years, you notice the erosion that the water caused since your last visit. The river is noticeably wider, and covers more terrain than you remember seeing the last time you were there.
My progression is like that. It isn’t noticeable from day to day, but every year one event takes place that clearly illustrates a progression I was not aware of, and last week’s snowfall was one such event.
Even though last week’s temperatures were the coldest of the year, they were in the low to mid forties during the day, which meant there was a lot of snow melt. While this stuff didn’t completely freeze until the sun went down, the driveways and sidewalks remained slick in isolated areas during the day. I’m always aware of the surface conditions during the winter because the last thing I want to happen is falling hard and braking something in the process, and last week was no different. I was very careful and methodical when I ventured outside, but even so, it became obvious that there was a big difference negotiating this terrain compared to the last time it snowed in March.
Moving on the slick and almost frozen surfaces was noticeably more difficult and treacherous. The most pronounced difference was my balance. More specifically, the lack of it. I could feel myself tottering from side to side, the leg always on the verge of sliding out from under me, even with a cane in hand. What I couldn’t determine is if the worsening balance was the result of less strength in the leg, or if the leg felt weaker because my balance sucked so bad.
All summer I thought I had achieved a lengthy period of status quo, and that if any progression had occurred it was minimal at worst. After all, I hadn’t curtailed my activities, and hadn’t come close to falling even once. I felt like I might be a little sturdier on my feet, and entertained the notion that perhaps my symptoms had actually improved, which would have been a first.
If last week didn’t hammer the point that the progression continues to stealthily advance, the shingles vaccine certainly did.
During my annual physical last summer, my primary care physician suggested I get the vaccine, explaining that while shingles is something nobody would want to have, it would be exponentially worse for someone with MS, so I consented get the shots.
The vaccine is administered twice over a three month period, and about half of the people who get it, according to Dr. Google, experience flu-like symptoms. After the first dose, I felt punky the following day but could still function at work. I received the second dose on Monday, and yesterday it kicked my ass. I literally felt like I had the flu: exhausted, body aches, fever. You name it, I felt it.
The last time I actually had the flu was years ago. I remember having a harder time getting around, bending the leg, and things of that nature, but on a scale of one to ten, with ten being the worse, I would rate the impact on my symptoms at a three or four. This week the impact was more like a seven or eight. I don’t know if it was simply the stuff in the vaccine that made things feel worse or if it was the progression of the MS, but it was infinitely more difficult to bend the leg, support my weight, and generally stay upright or move.
So it turns out I was naïve in thinking that I was actually improving. I’m not complaining, mind you, because in the scheme of things I am still doing well. But these moments can’t help but make one wonder if and when the hammer will come down at some point and take away all my mobility in one massive blow.
This possibility has always been there, but I have kept that thought locked away in the far recesses of my mind. These measuring stick moments, however, make me wonder if that doomsday scenario it close at hand, or if this will continue to be a slow bleed.
These next few months should bring more clarity to that question, as the house gets built and we put some sweat equity into the place to save some money. That experience will either kill me or cure me, so stay tuned.
Meanwhile, I wish you all a Happy Thanksgiving.