Category: MS

MS is an odd thing. No one knows what causes it, and everyone is affected differently. There is quite a bit of evidence that it isn’t an “it” at all. It could just be a description of a whole host of different things that result in some similar symptoms. Just like in years past people died of “fevers” without knowing what was causing them, people are now suffering from MS.

I think there’s a human tendency to look for the solution to any given problem. Things like MS end up being really frustrating because there is no magic bullet that will help everyone. I used to obsess over how I felt. Maybe I felt this way because of something I ate, or something I didn’t eat, or a certain exercise, etc. In the end, I do think there’s a lot of randomness to the disease and I have tried to direct my efforts towards being healthy in general.

A year ago or more I read that folks with MS tend to have really, really low vitamin D levels. As someone that has avoided the sun my whole life, I figured that mine were probably even lower than the typical MS patient. So now I try to get in 10-12 minutes a day in the sun. I might up that a little once I tan a bit. I’m still so white that I burn at 15 minutes, or maybe even before that. With someone as pale as I am, 10-12 minutes is all it takes to generate a ton of vitamin D, more than enough for a daily dose.

There may not be a magic bullet for MS, but sitting in the sun has a dramatic effect on me. It isn’t subtle. I have more strength and stamina in my legs, and I don’t feel as run down either. It is repeatable and reliable. I started this right before I came back up to Northern VA, and I was feeling the effects of it. As the winter wore on, I felt like I was regressing more and more. With just a few days in the sun, I could feel my energy level jump up and last through the day.

So for the first time in my life, I am sitting in the sun wearing only shorts and soaking up the rays. It feels good enough that I am seriously thinking about using a tanning bed next winter. Have I turned into one of those people? Whatever, I am going to enjoy the sun and enjoy feeling better. I’ll hold off on actually worshipping the sun, for now…

… that’s the best way I can describe the relationship I have with my feet. I can still mostly feel them, but it’s like they’re disconnected. It leads to constant balance adjustments, and you can imagine what it’s like trying to stand or walk in the dark, imagine doing that with stilts!

It is still a really odd sensation to feel something and not know where you feel it. Imagine feeling something and realizing that the sensation is coming from something 4 feet away from you. Yeah, it is that weird.

I don’t know how many times I have tried to move one of my legs only to find out I can’t. The reason is because I had crossed my legs and there was a leg on top of the one I wanted to move.

Ah, nothing beats fun with MS…

I’m happy to report that I am doing quite well at work. It wasn’t obvious that I’d be able to do it at all really, but everything has been fine. As a matter of fact, I have gotten to the point where I am hardly sitting down at all during the course of my day. Granted, I still stay away from the stairs as much as possible, and I do get to sit with the occasional customer, but I’m really happy about my improvement.

It’s also good on another level. It had been looking as though I had a progressive form of MS. I came home and got worse, then stayed there. There’s no telling what caused my improvement, MS is such an inscrutable thing. It could be the supplement regimen I’ve been on (fish oil, vitamin D, magnesium, calcium, and a good multivitamin), it could be the forced exercise at work, or it could just be the nature of the disease itself. Since it was most likely a combination of things that caused the disease, it’s probably also a combination of things that have lead to my improvement.

I’ll say this though, just getting up every day and being forced to deal with it has helped immensely. Living at home with mom was a necessary thing, and was a Godsend at the time, but I think getting out on my own has been the best thing I could have done. Here, I have to get up on my employer’s schedule, stand and walk, carry groceries, figure out transportation, etc. I have precious little time to obsess about my condition like I did before. I’ve also been shown how things are possible, even if a bit of a pain in the ass.

All in all, I think getting out and living has been as much a part of the improvement as anything else. I’m feeling good, and I’m feeling useful. Let’s hope that’ll keep me going for quite a while!

I was recently up at my step father’s place. I had a good time, saw a baseball game, caught up with some friends and my step sister and her family. When I first got up there, she posed the typical “How’s it going?” question. I usually just gloss over that, there really isn’t much to say. I just shrug my shoulders and say “It’s going OK,” or some other banality. She nodded her head and said, “Yeah, just getting in touch with your body…”

That surprised me so I just said “yeah” in response. The more i think about it though, the more inaccurate that is. If anything, this disease is all about losing touch with my body. My lower legs and feet are kind of numb, but more importantly, they feel disconnected. I don’t always know where they are. The weakness I get in my legs are al about me telling them what to do, and they just don’t respond. I usually can’t feel my quads or other workings in my legs. All of this makes my balance a bit of a surprise and frequently it isn’t there at all.

So getting in touch with my body? No, not really. I wish it would send a postcard or something.