What is MS, anyway?

world ms day logoIt’s World MS Day, a day that people around the globe share their experiences with MS to raise awareness of the disease and to drive research for treatments or a cure. There’s a great article here if you’d like to learn more about World MS Day, or you can go here to read all kinds of technical stuff about MS in general.

I have Multiple Sclerosis, MS for short.

What does that mean? Well, sclerosis means scars, so literally it means “multiple scars.” But where are those scars? In my brain and on my spinal cord.

MS means that the myelin sheath has been destroyed in some parts of my nervous system. Picture an electrical cord or a stereo wire: there are wires inside of a plastic sheath, right? In your body, that sheath is made of a fatty substance called myelin. Its presence helps the nerves to transmit their electrical impulses correctly. When myelin gets damaged, scars form on your brain or spinal cord and the messages traveling down those specific nerves get thrown out of whack.

Scientists believe that MS is an autoimmune disease, that tiny Pac-Man guys produced by my own body are nibbling at my spinal cord and brain. (Okay, that’s not how demyelination is technically described, but you get the picture.) The thing is, the scientists have no idea why this happens, so they can’t stop it or prevent it.

People don’t always understand that living with MS means something different for every single person. It all depends on which specific nerve is being attacked.

Let’s say someone told you that they had a computer virus. You might say, “Oh, yeah, bummer – I had a computer virus and I couldn’t print,” but they might respond, “Print? I can print! The computer virus I have makes my web browser crash whenever I download something.” Someone else might say, “Man, when I got a computer virus, I got the Blue Screen of Death.” Obviously, it all depends on which part of the computer system gets attacked by the virus.

That’s how MS is. If the nerves to your eyes are being attacked, you are going to have very different symptoms than someone whose myelin is being destroyed on the nerves to their arms or legs or bladder. The human body has two kinds of nerves, too – sensory nerves, which affect what you feel, and motor nerves, which allow muscle movement – and depending on which type of nerve is being attacked, symptoms can be very different. In fact, no two people with MS are going to have the same course of the disease.

So what does MS mean for me?  Continue reading “What is MS, anyway?”

MS makes me doubt myself

Bartolomeo Eustachi: Peripheral Nervous System, c. 1722
Photo by brain_blogger

I hate the fact that MS makes me doubt myself.

Am I tired because I stayed up too late or walked too far? Or is it MS fatigue?

Is my leg stiff because I have been sitting too long in one position or should do yoga? Or is it MS spasticity?

Is my face puffy and round because I am overweight or simply round-faced? Or is it moon face from the MS prednisone treatment?

Am I depressed because life is getting me down or because I am prone to mood swings? Or am I down or prone to mood swings because of the MS?

I no longer trust my own instincts about my body. I have tried to proceed as if I do not have an MS diagnosis. If I am tired, I should sleep… but when I am still tired after way too much sleep, then what? If I am stiff, I should stretch… but when I am still stiff, then what? Is it me? Am I doing something wrong? Am I going about everything the wrong way?

But if I ascribe everything to MS, I don’t feel that I am in a better position to judge anything. By its nature of randomly disrupting neurological transmissions, multiple sclerosis causes symptoms that can vary widely from day-to-day or from hour to hour. As I mentioned on my travel blog a couple of weeks ago, symptoms can be affected by pain, stress, body temperature, outdoor temperature, infection, worry, anxiety, bad posture, uncomfortable clothing, a full bladder, and constipation. This is not very helpful. My leg might hurt because I have to pee? Or because it is a nice day? I can’t always do anything about those situations!

Thinking like this is counterproductive, too. If stress and worry and anxiety can make my nerves act up, I had better not stress or worry about my health!

To top it off, I recently read something that said that some researchers are wondering if Progressive Relapsing MS (the type I have) is actually Secondary Progressive MS in people who did not realize that “all those years of random physical problems that seemed to resolve themselves” were actually episodes of Relapsing Remitting MS all along, which has now progressed to the point that it no longer remits. This makes me question every health issue I’ve ever experienced.

Argh. I have no answers. I worry that I am just obsessed with my health issues. Actually, I know I am, but I don’t know if that is to be expected, since I have health issues, or if it is extreme. Argh.

Daily Check-In:

  • I’m grateful! for my supportive family.
  • I’m lighter! since I have gotten such a good amount of sleep in the last 24 hours.

Pretty darn cool

I got myself a cooling vest a couple of weeks ago. My neurologist strongly recommended that I get one for the trip, to use in hot climates or anywhere that we will be doing a lot of physical activity. People with MS tend to get increased neurological symptoms if they get overheated, as the electrical impulses do not travel through the nerves very well in those conditions. Okay, strike that; they never travel well, but the situation worsens if the person gets too hot.

It took me ages – six months! – to actually order a vest, and I probably wouldn’t have gotten around to it without the weekly reminders I got from Charles, the guy who works on my leg. Instead, I did what I always do when things make me uncomfortable: I just made jokes about it. (“I’ll be able to carry everyone’s wine coolers!”) Once I ordered it, it sat in the package for weeks. I might not have gotten around to opening it and trying it on without constant reminders from Patti, who was concerned that if it did not fit, I was not leaving myself enough time to return it.

I put “Try on cooling vest” on the to-do list for tonight… and actually did it. Upon opening the package, I noticed that the vest looks strangely like a life jacket.

It has a velcro-and-elastic waist strap, and velcro flaps over the shoulders, to adjust for a one-size-fits-all fit. Which, of course, means it really doesn’t fit anyone well, but it won’t fall off and it will do its job. When you open it, you find four compartments for the cooling packs. The packs can be cooled in ice water – they don’t need a freezer – which seemed very convenient for this trip.

Then I tried it on and we all laughed at how ridiculous I looked. A self-portrait of me in front of Q’s shower curtain of emoticon joy:

Although the cooling vest is designed to wear under a shirt, I think I might just wear it outside my clothes. Yes, I would look like I am wearing a life jacket, but at least I would not look like the incredible inflatable woman. Plus, I figure everyone will be jealous of my awesome coolness while they swelter in the blazing sun.  (Hey, a girl’s got to hope.)

Daily Check-In:

  • I’m grateful! to my Little Deb for going out with me, going over my checklist with another pair of eyes, and helping me out in so many ways! (and to both Deb and Whitney for buying cookies!)
  • I’m lighter! by about 10 tasks from the list. A very productive day.