That Which Doesn’t Kill You

December 29, 2010
Every day with relapsing/remitting MS contains a bit of suspense. I never know for sure what I’ll be up against.
Take this morning’s dog walk, for instance. For the past two weeks, my husband has been doing most of the dog walking. I’ve been fatigued; I imagine it’s because of holiday travel.

Today is my husband’s first day back at work, so this morning I decided to resume dog-walking duty. Problem was, my legs didn’t feel all that reliable. They were just a tad bit more tingly, a tad bit more wobbly, than usual. I wasn’t 100% certain they would hold up for the duration of the walk. But then again, I wasn’t 100% certain they would fail me, either. I hate to lose the opportunity to breathe fresh air and get some exercise. I hedged my bet by inviting our 14-year-old son Henry along as back up. He agreed to take the leash. This was brave. How brave? Read on.
There are a few extenuating factors I have to watch out for on winter walks. If I get too cold, my muscles tend to seize up and spasm. But here’s the rub: if I get too hot, my MS symptoms go into overdrive.
I found myself lagging behind the dog and the boy right from the start. My legs felt heavy, as if the heel of each boot contained a five pound weight. The dog had a good deal of business to attend to. I was able to stay within half a block due to their frequent stops. Both the boy and the dog kept looking back. I tried to hustle. The fastest tempo I could muster was a shuffle. Within a few blocks, my boots started to feel heavier, like they weighed twenty pounds each. I knew better than to take off my boots. I took off my hat.

I can’t afford to get a hot head. Multiple Sclerosis is an autoimmune disease in which renegade T-cells from my own immune system have attacked the insulating layer (myelin) around the nerves in my brain and spinal cord. When I overheat, my poorly insulated neural signals tend to misfire. This can lead to any number of complications.

I once lost most of the vision in my left eye during a dog walk. My vision gradually returned, but only after I’d completely freaked out…and completely cooled down. At the time, I hadn’t had an explanation for the world going grey. I thought this was the beginning of the rest of my life as a semi-blind person.

Today I know what to expect when I overheat…sort of. I can expect to get symptomatic. And I can expect the symptoms to be transient. I don’t get to pick which symptoms will arise.

My legs were getting more tingly, and more wobbly, block by block. Shortly after I decided we should turn around, my hips began to swivel madly. Then my knees began to buckle. My agency over my body was slipping away. I grabbed hold of my boy’s extended arm. Henry handed me the leash, in hopes our hundred pound lab mix would pull me forward.

No such luck. In wintry weather, the dog has learned to walk slowly, to match my pace along the slipperier sidewalks.
I pitched forward. Pitched backward. Getting home was going to be tricky.

My son said, “You shouldn’t have walked.”

“I need the exercise.”

“This isn’t exercise.” He had a point. We were inching along. “You’re only hurting yourself.”

At least I knew for sure I was reaching my full potential for the day. Which is kind of athletic, in a sick kind of way.
I thanked my son for assisting me in this adventure. But he didn’t see it as an adventure; to him it’s an ordeal. He doesn’t care if his mom has reached her full potential for the day. He just wants his mom to be safe and intact.

I try to assure him that what he’s witnessing isn’t a progression of my MS; it’s just a flare-up of symptoms from damage done long ago. There’s no way to prove that to him, though. Not until the next MRI.

I have faith my medication will prevent another full-blown relapse. Faith my family will stick by me even when I’m wobbly. And so I venture out, and trust that somehow there will always be a way for me to make it back home.

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Negotiating Pain

Foot and Leg Pain
I experience “numbness and tingling” sensations in my feet and up my legs every day. This was my first symptom of MS, and it looks like it’s here to stay. Over the years, I have found a number of ways of reducing pain. Baclofen helps. There are also non-prescription alterantives that can provide pain relief. Here are my top strategies for taming the pain, in order of discovery.
4. Five Toe Socks. Yes, there are such things. And yes, they can help reduce foot and leg pain. They help me, anyway. If you  experience “pins and needles” pain in your feet and up your legs, read on:
The other night I was in intense pain; my legs were aching with bee-sting intensity. I don’t know why I asked for five toe socks, but as soon as my husband slipped them on my feet, I felt instant relief. I think, in my case, my hyper-sensative MS-addled nerves got all rattled because my pinky toe tucks against my neighboring toe, which triggered a false neurological signal that confused proximity with pain. Once my toes were separated in the toe socks, the pain signals died down. From now on I’ll take my yoga teacher more seriously as she encourages us to spread our toes. (see 4.)

Has anyone else tried toe socks?

3. Vibrating Foot Massager. Technically, I have very little ability to perceive vibration in my feet and legs. The first time a neurologist whipped out one of those tuning forks at an exam, I didn’t know I was supposed to feel vibration; when asked how it felt, I said it felt cold. I don’t know why feeling less vibration translates into feeling more pain, but it does. Luckily, the converse applies as well; feeling more vibration translates into feeling less pain. I use an iJoy Equalizer I got from Sharper Image, which I believe has since gone out of business. There are other vibrating foot massagers out there, in prices that range from 19.99 to over $300. They shake things up, causing immediate relief.
2. Legs Up Against the Wall. My foot and leg pain literally drains away when I rest my legs up against the wall. To enter this position correctly: sit with your right side against the wall, knees bent; your leg and hip should be in direct contact with the wall. Lower your back onto the floor. Raise/straighten your legs, so that the bottoms of your feet are facing the celing. Now swivel 90 degrees, so your head is pointing toward the middle of the room, while the backs of your legs and your sitting bones are in direct contact with the wall. You should feel an immediate draining of pain. Hold this position, with your legs against the wall, for only as long as it is comfortable. For me, that’s about two minutes or so. Don’t worry; the soothing effects will linger a while.

1. Yoga. My first thought on diagnosis was that yoga could somehow cure me; that being a more spiritual person could make me a disease free person. Nonsense. I will never know how much yoga has helped; but I can say, without reservation, that yoga has made me more supple, which helps with spasticity, and has given me great joy, which helps with life generally. As someone who experiences a lot of pain by merely standing, I try to remember how it feels to stand in tree pose at the yoga studio when I’m stuck on a line in the store.