Kumfs – #AtoZChallenge

(David said my “K” word should be either kleptomania, Kansas, or keratin. These have nothing whatsoever to do with MS. Or with me, for that matter.)

I have been known to fall a lot in my life. I think I had stitches in my head three times before my fifth birthday. I was teased mercilessly by my friends in junior high for falling off my brown leather platform sandals while standing still. (I just keeled over. There’s no explanation.)

Mine were like “G,” although — had I seen them — I probably would have wanted “K” back in the day.

If I’m completely honest, my friends have teased me my entire adult life about my inability to wear heels of any height. (It’s like Joey said about Chandler and bras. I can’t work ’em.)

Now, throw Multiple Sclerosis into the situation!

When I was first diagnosed, I was falling pretty regularly. I had foot drop in my left foot, so I’d catch my toe on the floor all the time. But, just like in 7th grade, there were also plenty of times that I just fell over for no apparent reason.

It got to the point where I was constantly checking in with David on it. “Would anyone have fallen right there? That was kind of uneven, right? I mean… right?” Sometimes he was able to reassure me, sometimes not.

I fall a lot less now. I wear what I call “orthopedic shoes” (almost exclusively walking shoes from Ziera, which used to be called Kumfs), because they are comfortable, supportive, and don’t irritate my sensitive foot. I can get most of the styles in whatever color I want, which is black. (They sell other colors for you people who don’t want to own ten pairs of black shoes.)

I sound like an ad, I know, but it took me a lot of trial and error to find shoes that would work, so if this helps someone who has similar issues, I’m glad. These shoes are spendy, I won’t lie; they probably average about $150 a pair, but it’s an investment in my health. I’ve decided to consider it a fair exchange for all the money I have saved by not dyeing my hair.

Judgment – #AtoZChallenge

MS is one of many “invisible” diseases. Because people can’t see what’s wrong with me, and because I look perfectly fine, they figure I’m doing great. And most of the time, I am, thanks to the wonders of pharmaceuticals! But other times, those invisible symptoms leave me thinking that people are judging me. (Lazy. Unreliable. Hypochondriac. Skiver. Unproductive. Antisocial.)

Then again, perhaps I’m projecting. Perhaps I’m the one doing the judging. I definitely think those things about myself when I spend days in bed, when I have no energy, when I have to call in sick to work, yet again. I’m the one putting expectations on myself and beating myself up when I can’t meet them.

There’s definitely a nagging feeling in the back of my mind that I could beat this if I wanted to, if I just worked hard enough. It’s no wonder I expect others  to think that, too.

Infection – #AtoZChallenge

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It’s hard to explain to people how infections are related to Multiple Sclerosis, since MS doesn’t technically cause infection. But I’ll give it a try!

Think, for a moment, about sinus infections. Most people can relate to the congestion, the headache, the face pain. But it makes no sense to most people that when I have a sinus infection, I’m liable to have tingling in my foot or an achy leg. How could that possibly be related to my sinuses?!

Well, when anyone’s body gets an infection, their immune system kicks in to fight it. Just like when Pac-Man has to chase down and chomp up the ghosts in the video game, your immune cells seek out infection and attack and remove it, to keep it from harming your body.

Unfortunately, Multiple Sclerosis is a disease where your body misidentifies actual good cells — those that make up the protective myelin sheath that covers all your nerves — for bad cells, and sends your immune cells out to chomp that myelin right off the nerves. The worst part? For a person who has MS, every time the immune response is turned on to attack another infection in the body, it turns on to attack the myelin again, as well. So every infection is a double whammy of the expected symptoms  of that illness and a flare-up of MS symptoms, too.

I’m especially cursed by this phenomenon, because I have damage to the nerves that lead to my bladder. I have trouble realizing that I have to pee, because the signals don’t reliably travel from bladder to brain, and I often have trouble peeing, because the signals don’t reliably travel from brain to bladder. This puts me at great risk of urinary tract infections, which can be caused by residual urine. And every UTI causes a worsening of MS symptoms, so it’s a vicious circle.

It’s frustrating. I don’t want to be a whiner, constantly going, “You don’t understand! Yes, I ‘only’ have a UTI or a cold or an infected paper cut, but it’s worse for me than it would be for you!” But it’s true, and it’s hard to make people understand that when I’m dealing with those things, I’m also getting slammed with extra-bad MS symptoms on top of it all.

(If we were in Notting Hill, I’d be going for that last brownie.)