MS

Princess

One of the least attractive aspects of having multiple sclerosis is that it has turned me into a bit of a princess.

When I was a little girl, I never wanted to be a princess. I didn’t think it was any luxury to be dressed by a flock of ladies-in-waiting. I haven’t reached that particular stage of princessness…yet. But it could happen. The other night when I was in pain, my husband got a bit over-solicitous, and pulled a sock over my decidedly un-Cinderella-sized foot. I said, “Let’s not make this a habit.” I thought that would stop him cold. His eyes widened in horror. Then he picked up the other sock.

Scary.

Am I a princess? I can not bear to stand in line. Now you’re going to hate me. Who doesn’t hate those princesses you see at the grocery store who hiss and flare their nostrils if the person in front of them pulls out food stamps, or, heaven forbid, roots around their pockets to furnish exact change? I promise, I’m not that kind of princess. The hissy type. The type who berates the slow moving cashier. But I tell you, a slow moving line sends me into a panic, a crisis I try my level best to keep to myself. Standing, simple standing, is an arduous task for me. The longer I stand, the more painful it gets. What starts off as a tingle in my legs swiftly escalates into something like a burn. If you’ve ever been tickled too long, you might begin to get the idea.

I know. I know. That seems kind of strange. Welcome to multiple sclerosis.

Am I a princess? I don’t clean my own house. Now you hate me. I do the light cleaning. I do the family wash. If my husband makes the dinner, as a rule I do the dishes. Unless, of course, my husband has made the dinner because I’ve had a rough day. On those rough days, I get out of the cooking and the dishwashing, while he is stuck with both. My husband picks up my slack. But he doesn’t pick up that much around the house. For that, and for the deep cleaning, we turn to M., our housekeeper. M. is extremely non-judgmental. I have never, ever, heard her trash-talk our family for our slovenly ways, like I do when I’m the one cleaning up. She would never say, as I said this morning, “A dirty thermos? In your sleeping bag? Really?” She just goes about her business of cleaning our house, and lets me go about my business of undoing her good work. M. does this work because I find it too fatiguing to drag a mop across the floors, yet in all the years she’s worked for us, she’s never once commented on how strange it is that I summon up enough energy to pop over to Y to lift weights.

What M. does is the real heavy lifting. On those weeks when M. can’t make it, and I’m the one to clean the house, I only last about 40 minutes before my legs start buckling beneath me. Add just about any commercial cleaning solvent to the equation, and I’m as dizzy and wrecked as a high altitude climber who forgot to tote the oxygen. When M. returns the following week, I’m as happy to see her as my salivating dog. I apologize for the mess I’m too gimpy to clean. Then I get in my car, and I drive off to the Y.

So, to recap: I don’t stand in lines. I don’t clean my own house. Now let’s add the most princessly feature of all…can you guess?

I don’t work.

Not to make money, anyway. Now you hate me. You work. And work is no fun. I know that. I worked once. I was working three jobs and going to grad school when I was diagnosed with multiple sclerosis. I never made very much money. I made so little, in fact, that I really resented that chunk that came out of my paycheck to go to Social Security.

These days, the only work I do is fun stuff; I write, and I help other writers write. I touch no filthy lucre. Like any princess, I have my favorite charity. All the proceeds go to the arts center down the block. If I’m too much pain, I cancel, or I postpone. No one is the wiser. No one is my boss.

I am a princess. I have to live by a separate set of rules. I don’t stand in lines, I don’t clean my own house, and I don’t work for money, just for fun. There is nothing about multiple sclerosis that is fair.

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MS Mermaid

My son requested that I tell you the story of what happened the last time we were in Hanauma Bay:

Once upon a time, on an island not so very far from the equator, Mermaid opened her sea blue eyes and saw she was in trouble.

Earlier that morning, Mermaid had grown restless as her husband, Landman, and their son, Halfland, fumbled around the coral in their rented flippers. She shot off after a brilliant green parrotfish, leaving Landman and Halfland to doggie paddle in the shallows of the bay.

Hour after hour, Mermaid frolicked with bright and beautiful fish. She witnessed many wonders. But as time went on, more and more blubbery white Surface Creatures came crashing across the coral reef. As the bay grew crowded with  Surface Creatures, Mermaid grew restless yet again. She missed Landman and Halfland. She wanted to be with them, even if that meant climbing out onto the sand.

Mermaid was as clumsy on the silver sand as Landman and Halfland were clumsy in the water. Mermaid fumbled as far as a little palm tree, and then plopped down to shelter in its meager shade.

Mermaids never nap. But on this day, Mermaid’s frolicks must have worn her out. When Mermaid awoke, she was no longer lying beneath the slender shadow of the little palm tree. The shadow had shifted.

Mermaid was no longer sheltered from the Sun. And Mermaid was no longer alone.

A group of  Shade Seekers from the Far East were noisily unfolding their straw mats along the new angle of the palm tree’s slender shadow, chatting away as if Mermaid did not exist.

Mermaid did not understand the Shade Seekers’ culture, or the Shade Seekers’ language, but she had to be grateful for their bizzare proximity, and their incomprehensible chatter. Had they not been so close, had they had not been so loud, the Shade Seekers might have not have waked her. Had Mermaid remained asleep beneath the Sun, she may have napped her way smack into oblivion.

You see, all mermaids’ powers melt away in the heat.

Mermaid looked down at her lovely legs. She knew the heat of the Sun had rendered them as useless as a mannikin’s legs.

Mermaid gazed longingly at the sparkling sea; if she could only make it back, she would be safe from the heat of the Sun.

Mermaid turned to the Shade Seekers. The Shade Seekers did not meet her sea blue eyes. You see, Shade Seekers do not believe in mermaids. These simply pretended Mermaid did not exist. And even if Mermaid were to somehow convince the Shade Seekers that she did indeed exist, she still had no common language to explain her predicament.

All the while, the Sun beat down relentlessly. If Mermaid didn’t act soon, she’d lose control of more than just her legs; her sea blue eyes would cease to see.

Mermaid was feeling desperate. Her lovely legs couldn’t take her to the water. The Shade Seekers wouldn’t take her. Mermaid decided on a course of action. Since she could not walk to the water, she would have to roll there.

I will tell you a secret about mermaids. Mermaids are like you and me. They can not abide to lose their dignity.

Mermaid imagined that the Shade Seekers would start seeing mermaids as soon as they saw one rolling in the sand. That would give those Shade Seekers something to talk about.

Just then, Mermaid heard two beloved voices over the din of the Shade Seekers’ chatter.

“Mermaid!”

“Mommy!”

Landman and Halfland were running up the beach toward their lost Mermaid. They were so happy to see Mermaid, they forgot to be cross with her for swimming away. They understood immediately that Mermaid wouldn’t be going anywhere, not without their help.

Now, this was no ordinary bay, but rather, the crater of an eroded volcano, one that had sunk so low that the sea could sneak inside. Landman proposed he carry Mermaid to shelter on the crater’s rim.

The crater’s rim was a long way up. Mermaid wanted nothing more than to return to the water, and to her natural form.

Landman loved Mermaid. Landman wanted nothing more than for Mermaid to be whole again. Instead of carrying Mermaid to the crater’s rim, he carried her back into the water, and released her alongside the battered coral reef.

As the family expected, the ocean worked its magic on Mermaid. She was soon swimming as though she had never been pinned by the heat of the Sun. Landman and Halfland were happy to see their Mermaid restored, yet the entrance to the path to crater rim remained a great distance away. Mermaid refused to be carried there, and they all three doubted she could walk.

Halfland proposed they all swim toward the entrance. But Mermaid knew swimming would not be much fun for the boy. She urged Halfland and Landman to walk there, instead.

After all that had happened, Halfland and Landman were reluctant to leave Mermaid. But Mermaid had learned her lesson. From now on, Mermaid would not be distracted, no matter how colorful the fish. She would keep her sea blue eyes on Landman and Halfman, for those two were more precious to her than all the fish in the sea.

Landman and Halfland sloshed back to the shore, and Mermaid swam along in the sea. But they were still together, all three. They proceeded in parallel toward the path to the crater rim; Landman and Halfland walking on the beach, and Mermaid swimming in the bay. Mermaid’s gaze did indeed remain fixed upon Landman and Halfland. Those two were the most soothing sight her sea blue eyes could ever see.

Not even the Shade Seekers can tell you how Landman and Halfland managed to get their Mermaid to shelter on the crater’s rim, or how Landman, Mermaid, and Halfland have managed to stay together, happily ever after. There is much about a mermaid that must remain a mystery.

Commuter Drag

IMG_4232I am commuting today to the NIH for my monthly dose of MS medication. Look around the airport. You won’t pick me out. I am streamlined, like every serious commuter. I know which security line is actually the shorter one. I know the latest TSA regulations. I don’t flinch at the full body scanner. My boots are easily unzipped.
My red Chrome messenger bag is a red herring. I haven’t straddled a bicycle in over a year. Not since I kept falling off. But I can look like I still ride a bike. I can pass, at least for the outgoing flight.
I am not the one fumbling with her shoelaces, or the one in the wheelchair. I am not the one in that golfcart-like vehicle. I am not the one boarding the tram.
I am the one strutting to the gate.
I am not the one on the people mover. I am not the one on the elevator.
Whenever possible, I am not the one on the escalator. Whenever possible, I am the one on the stairs.
I am not the one sitting in the handicapped row.
I am not the one being offered the opportunity to pre-board.
I am the one who doesn’t look up as boarding is announced, who continues writing her notes by hand. No one needs to know I am a creature with brain shrinkage. That I’ve left my computer behind in too many taxis, too many times.
No one needs to know that on the way back, I may just be the one in the wheelchair, or the one in the golf-cart like vehicle. I may just give in and take the tram. I might take the elevator. I might accept an offer to preboard.
I am one of you. Until I’m not. Then I am of one them.
I am one of all of us. We each carry baggage. We each carry pain. Sometimes it’s visible. Sometimes it’s not.

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The Cold Keeps the Riff-Raff Out

IMG_9548I probably should not admit this; under certain circumstances, I do give up. I give up on big things. Things I love. Things that define me to myself. A few months ago, I gave up on swimming at the YMCA.

Swimming is one of the few cardio-vascular exercises still open to me; as I explained in an earlier entry (That Which Doesn’t Kill You) I have to avoid raising my body temperature. Any time I get too hot, my multiple sclerosis symptoms rear their ugly heads. It gets kind of tricky to keep fit while also keeping cool. Exercise isn’t about keeping cool; exercise is about burning calories. “Feel the burn;” that’s the mantra. Problem is, when I feel the burn, it means I’m about to go down.

I’ve found all sorts of ways to work around this hitch. I can use the weight machines at the gym; I simply lift the lightest increments. I walk over to the water fountain after each machine, and take a drink to avoid overheating.  Then I go on to the next machine; perform my repetitions. Rinse. Repeat. My system works. I do get toned. I don’t get overheated. There is just one flaw. I do get bored.

I am not about getting bored. I am all about joy. Did I say exercise is about burning calories? That’s a boring way to look at it. Exercise, at its best, is about celebrating the body, at its best. Exercise is an act of joy.

For me, the most joyous form of exercise is swimming. My husband calls me a mermaid, because even on those days when I cannot walk, when I cannot put one foot in front of the other, I can still swim. Being in the water levels the playing field. The water exempts me from negotiating my balance. It exempts me from gravity. I know why the dolphin grins.

After all this waxing rhapsodic over swimming, you would think that nothing would stand in the way of me and a swimming pool. Let me introduce you to the women of the YMCA locker room. Gentlemen, avert your eyes.

My first impediment was an aging Southern Belle, who introduced herself by stating, “You’re not from around here, are you.” She asked me for my name, and my birthplace. I told her I was born in the Bronx.

The Southern Belle stiffened. I added, I thought helpfully, “Bronx, New York.”

“Oh, I guess that’s all right.”

A few visits later, The Southern Belle grilled me again about my birthplace. The first time she’d asked, she’d been poolside, looming over me as I backstroked. The second time, I had just stepped out of the shower in the locker room. The Southern Belle apparently felt very comfortable in the locker room. As she was asking me about my birthplace, she was languidly applying her hairdryer to her billowy private parts. Startled, I averted my eyes. I towel dried and dressed as quickly as possible. The hairdryer droned on. I could not help but notice as I passed The Southern Belle on my way out that she was still aiming her hairdryer where the wind should not blow. I checked the clock on the wall. Eleven thirty.

Let me tell you something about the daytime YMCA regulars. They are creatures of habit. I am not, and can never be, a creature of habit. I am not, and can never be, a “regular.” I am a creature with brain shrinkage. I could not be tethered to a schedule, even if I wanted one. When I plan, MS laughs.

This YMCA regular was getting in my way. I figured she couldn’t possibly linger at the YMCA all day. The Southern Belle had to eat. By the looks of her, The Southern Belle had to eat quite a lot. She would likely take a break for lunch. I would no longer go to the Y in the morning. I would go instead at noon.

This plan was brilliant. I encountered The Southern Belle on her way out.  We were both fully dressed. She may not have recognized me; she didn’t ask me where I was born. I changed and showered unmolested by her questions; and arrived at the pool—with all the other lunchtime swimmers.

I waited for a free lane. One swimmer was gracious enough to offer to share his lane. I accepted.

I like to lose myself when I swim; I’m pretty sure I’m not unique in that regard. I knew what he was giving up. I tried my best to be a good neighbor; to keep to one side, to keep a pool length between us. All that neighborliness was exhausting. The man was a shark. He never stopped moving. I often outlast fast swimmers. I figured, if I just held out, I’d eventually have the lane to myself. Then I noticed the waiting swimmers still poolside. Not a chance.

Maybe going to the YMCA at noon was not such a brilliant idea, after all. I remained undeterred.  I could always go in the early afternoons.

Little did I know I would encounter an even more terrifying locker room adversary; an adversary who could get into my head. I feel almost guilty introducing her to you, because she’ll get into your head, too.

But maybe she needs no introduction; chances are, you already know a version of her. Perhaps you are a version of her. She is The Suburban Soccer Mom. All she does is judge. And judge. And judge.

Oh yes, and one other thing; The Suburban Soccer Mom never shuts up.

My first early afternoon swim went…swimmingly. I’d had a lane to myself. I could shut out awareness of all the other swimmers, but better still, I could shut out all my own thoughts. Swimming is my moving meditation. My mantra is simple…I count as I stroke. One. Two. Three. Breathe.

I headed to the locker room showers, dripping and peaceful. And then I heard a strident female voice.

“He’s says the kids should be there to have fun. I’m sorry, but if my daughter were winning a game every once in a while she’d have a lot more fun. Correct me if I’m wrong. Is there something not-fun about winning? Isn’t winning the point? Am I wrong, here? Am I wrong?”

A second, softer voice responded eagerly; a voice so soft I couldn’t hear a pandering word.

I stepped in a shower and turned on the water, hoping to drown The Suburban Soccer Mom out. I tried to regain the calm I’d felt after forty-five minutes of laps, of forming no words in my head besides “one, two, three.” I lingered in the shower a bit longer than usual, giving the Suburban Soccer Mom ample opportunity to exhaust her case against her daughter’s fun-loving/fun-destroying soccer coach.

As it happened, by the time I was done with my shower, The Suburban Soccer Mom was done lambasting her daughter’s soccer coach. She’d moved on to lambasting her father-in-law.

“He expects me to feel sorry for him because he just had back surgery. Why should I? It’s his own damn fault he needed the surgery. He’s too damn fat. His spine couldn’t take it. No surprise there. He should have gone on a diet. He should have gotten off his fat ass and exercised. Instead he runs to a doctor. You want to know the real problem with health care costs in this country? People are too damn lazy. They’re too damn lazy and they’re too damn fat. They overeat, and then they transfer the burden to the rest of us.”

I had to pass The Suburban Soccer Mom on my way to my locker. I didn’t give her glance. I try to avoid looking directly at the other naked women, with the presumption they might extend the same courtesy to me. Even though I didn’t look at The Suburban Soccer Mom directly, there are things I can tell you for certain about her appearance. The Suburban Soccer Mom is blonde and trim, though perhaps no more trim than I am. I can also assure you she must appear perfectly, unassailably normal. She couldn’t possibly tolerate herself otherwise.

I could not help but look directly at The Suburban Soccer Mom soft-voiced companion; she was cowering in front of my locker. The soft-voiced companion was soft-bodied. Her eyes bulged out in terror at the sound of the word, fat.

Once again, I found myself changing into dry clothes as quickly as possible to make a speedy exit from the YMCA locker room. I pitied the The Suburban Soccer Mom for her malady; an unrelenting/unremitting chronic illness that was causing her to assume she is surrounded by inferiors. If only she’d leave off judging everyone, she could be a happier person. If only she was more like…me.

On subsequent visits I heard subsequent rants. When The Suburban Soccer Mom was in a good mood, she’d alternate her judgments of other people’s failings with reports of her own successes; the laps she’d swum, the triathlons she’d won. According to The Suburban Soccer Mom, the world would be a much better place if we would all be more…like her.

And that’s how I ran afoul of The Suburban Soccer Mom. One afternoon she happened to notice that I am not at all like her.

That particular afternoon, I was fighting against fatigue. Fatigue is one of the toughest elements to deal with in MS. It feels like a personal failure. The Suburban Soccer Mom in me told me to drive to the YMCA and do my laps, though The Henry’s Mom in me thought I should save my energy so I’d still have enough vigor to pick my son up from school, to snack with him, to talk with him, to walk the dog with him, and after all that, to make the family dinner. I compromised. I decided to still swim laps, but only for fifteen minutes.

As I stashed my street clothes in the locker room, I heard The Suburban Soccer Mom announcing to the assembled that she and her daughter would be going out for a jog. I happened to return from my fifteen-minute lap swim just as The Suburban Soccer Mom was announcing to those assembled that her daughter had just texted to cancel their jog.  Oh, Sububran Soccer Mom’s daughter, wherever you are, I took the bullet for you that time. Your mother looked up from her cell phone, and found a target in me .

“Well, that was the shortest swim I’ve ever heard of.”

That was it. That’s all The Suburban Soccer Mom said. Yet I didn’t go back to the YMCA for two months. The next time I felt fatigue, I stayed home. And so on, for almost three months.

I shouldn’t bother to spend any more energy dissecting what is wrong with The Suburban Soccer Mom. I ought to figure out what the heck is wrong with me. I gave up something I loved to avoid someone I hated. Maybe I ought to do a little less hating. Maybe the prescription I’ve been writing for The Suburban Soccer Mom is prescription I ought be writing for myself.

I’ll have you know that on Friday I did return to the YMCA. There was a notice posted on the front door, regretfully announcing that though the lifeguard was on duty, the pool heater was broken.

Perfect. I learned a folk saying back in the days when I lived with the good, decent people of Minnesota. The cold keeps the riff-raff out. Sure enough, the pool was empty. I could swim in any lane that I pleased, for as long or as short a time as I pleased. Better yet, the locker room was empty, too.

I’ve got to go. The pool is only open another hour. I’ve got to get in my fifteen minutes of laps.

author’s note: On the drive home from a cold, solitary swim, I heard this thoughtful discussion about judging the judger on NPR. Listen and learn: http://www.npr.org/2011/01/10/132809627/concrete-ways-to-live-a-compassionate-life

For my review of “12 Steps to a Compassionate Life,” the book under discussion on NPR that day, connect to Goodreads http://www.goodreads.com/review/show/144053847

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An Objective Answer

The first time a perfect stranger assumed my husband John was my son, I asked, “Do I look that old?”
In the awkward moment that followed, I realized I would never get an objective answer.
The second time a perfect stranger asked me if John’s was my son, I dismissed her “innocent” question as a perfect mind game.
Unless…
Do I look that old?
If John’s mother were alive right now, she’d be eighty three.
I am forty-three. I am older than my husband John, but not significantly older; I’m older by a year and a half. I ought to look like I could have been in diapers on the day he was born; not like I could have spent that day stretched out on a delivery table.
How painful.
It has been suggested that maybe the issue is not that I look old, but that John looks young. John still gets carded when he buys alcohol. If I can be comfortable with looking like the mother of our fourteen-year old son, why can’t I be comfortable with looking like the mother of man who is (mis)taken for under-twenty-one?
It doesn’t bother me that John looks young. It doesn’t even bother me that I look old…as long as we’re talking forty-three years old. It does kind of bother me that Multiple Sclerosis could make me look older than I really am; it just adds insult to injury. And it really bothers me is that there is no way to objectively determine if I look my age, or if I look older than my age.
Or so I thought.
Today I sought a piece of personal property every patient is entitled to; I requested my medical record. I had recently taken a trip to a specialist, and I needed to share his discovery with the doctors at the NIH, who must keep track of every event that occurs in my body while I am on their experimental drug.
I am always eager to read the notes my doctors take. I’ve learned a lot that way. One of my past doctors was either a poor listener or a poor note taker. He’d had me down for two to three alcoholic drinks a day, whereas I’d said I might sip from two or three alcoholic drinks a month. I had the office correct my record. I am a borderline social drinker, not a borderline alcoholic, and I didn’t want to be treated as though I had the additional illness of alcoholism.
When I got the notes from last week’s visit to the specialist, I slid them in a manilla envelope, but pulled them out again before pressing the button on the elevator. By the time the elevator reached my floor, I’d read that I’d moved to this city from New Hampshire. I kind of liked the image of myself as a lady from New Hampshire. I’d be more rugged, maybe, than a lady from Connecticut. Certainly less Italian.
On the elevator, I read:
General appearance: healthy, alert, no distress, cooperative, smiling, in no acute distress, appears stated age, alert and oriented x 3
Appears stated age.
Finally. The objective answer I’d been looking for. From a professional. And not a professional bartender either. A medical professional. Medical professionals, I well know, can be trusted to get the story straight.
I stepped out of that elevator smiling, in no acute distress, brandishing my precious envelope, the objective proof that I don’t look that old. I appear to be my stated age. I feel alert and oriented x 3.

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. 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 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.

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