Running with MS

Just read a series of transcripts on the national MS Society Website, with Dr. Kalb and Clay Walker, the C&W singer, who has MS, discussing adapting to MS . Not earth shattering, but the following quote interested me - it speaks to how I try to deal with this disease, and why I wince at all the people who say "I have MS, it doesn't have me." How they can say this when MS can pick them up in its gargantuan fingers and shake them about whenever it wants, I dunno. For me, I know that MS has me, and has changed my life forever in ways nice and not so nice.

Here's the quote from Richard Cohen, a person with secondary-progressive MS. He says, “But with any progressive disease like MS, the moment is going to come where you feel overtaken by it. It was time to stop running from it and start
running with it. I just reached a point where I had to admit it was a part of me and part of who I am."

Yep. That's the way I feel. I feel as if I and MS are a somewhat unwilling team pulling this body of mine about. Sometimes I misbehave, sometimes the MS does. We are both interested in going forward, but we might differ about the direction.
When we are running together, I feel almost normal. But I am always aware that I depend on the cooperation of my MS to continue. As it depends on my cooperation - eating well, resting enough, looking after myself, exercising....

Unless my MS is feeling mischievous that day. Then it doesn't matter what I do - my MS will play about and bring me interesting sensations, experiences, challenges.
Keeps it interesting at any rate. And fortunately we share a sense of humour.

"Happy" World MS Day

This video makes me cry.

Hit the ball....

The MS walk yesterday reminded me of my dad’s old joke about the golfers:
“Wow, Jim, you look exhausted!”
“Yeah – tough golf game yesterday. There we were on the 8th hole and Ralph just drops down – dead – right after he birdies the hole!”
“Oh my god – how horrid!”
“Oh, you don’t know the worst of it. For the rest of the 18, it was: hit the ball, drag Ralph, hit the ball, drag Ralph…”

Overall the walk was a festive event, staffed by volunteers with cheerful faces and happy hearts. The walkers were cheery, too, and when I had to repeatedly step aside to let them go by, especially on the last half, they apologized, encouraged me, said "No, that's okay...".
I was chipper at the start, but as we walked further and further away from the starting point and as I realized how far it would be to get all the way back, my enthusiasm slipped drip by sweaty drip away. By the last 1/4 of the walk I was swearing like a sailor (under my breath) and weaving back and forth like the same sailor on shore leave.
But I made it. Through sheer determination and grit, if I do say so myself. And that was a good thing. I was so helped by my friends who donated so generously and by my walking buddy who caught me as I weaved to the left. Thanks, too, to the ever helpful Mavis (my cane) without whom the whole thing would have been an impossibility.

gnashing teeth

Sometimes this MS thing is just totally frustrating. I would swing my arms and beat something but I haven't got the strength.
Can I plan anything? No
Are my symptoms anything to be worried about? Don't know.
Is my medication helping? No idea.
Is my life going to be much worse soon, or just a little worse? Don't have a clue.
They tell me to just rest, pace myself, adapt. But how can I adapt to something I don't know? If I rest today, does that mean I'll be better tomorrow? Apparently there's no guarantee. Of anything.
And gradually my body grows more enclosed, my life more circumscribed, my existence more purposeless.
Am I just to breathe?
Am I?

waving goodbye

The title of this picture is "A bearded lady waving goodbye" - only my friends know how true this image is...;-)
Today I am waving goodbye to my dreams to my hopes to a friend to the image I still try vainly to keep in my mind of myself as healthy.
I had hoped to go on a camping trip to my beloved Maritimes. Made plans, got all excited, ignored naysayers.
There's no way I can do it - after one day of activities, I am knackered, so exhausted that I have to lie down for 12 hours or more while my body twitches and groans, spasms and creeps. It is crazy making and insane that I should have descended so far into disability so quickly - in 18 months I have gone from a woman who spent an hour in the gym pushing past sweat to absolute shimmering to a woman who has to consider whether today will be a day I can walk the mile around my town.
I'm still completely, utterly numb, from my tongue to my nethers. I'm losing my ability to hold onto things with my right hand. And I am looking more and more drunken when I walk. And summer, and its draining heat, hasn't even hit yet.
How does one retain enthusiasm for the shots I give myself every day, when they appear to do nothing? How do I commit myself to something, anything, if I have no idea how I will be functioning day to day?
And how can I be in a relationship with anyone when my body turns traitor so quickly?
Still figuring out the borders to my new life. They are cloudy and move a lot. I guess I'll just continue to live as I always have - few plans, just stroll into the future and take the best out of it I can.

Try a little tenderness....

I'm a single woman, divorced for the last couple of years....When I first received my diagnosis one of the thoughts that ran through my head was: "No one will want me now....I will always be alone..." I thought idly of surfing MS websites, checking for hot dates who also had MS, thinking they at least would accept the unpredictable bundle of neurons I was becoming.
One of my friends immediately started trying to caregive, intruding into my life as a person with MS, and I realized that I couldn't bear that, that this was my disease to live through. In my mind, I decided to mentally shut everyone out, plan to be alone during the worst bits, hide from friends until I felt healed, only show the strong side of me, joke about everything so no one would seriously worry about me. I didn't want people to use this to take power over me.
Lately, though, people have been lovely to me. They reach out to me, they treat me kindly. My little town has taken me under it's communal wing, and I can feel them wanting me to stay here, wishing me well.
One person has diligently warmed me, allowing me to open out and trust a bit in a relationship, carefully, always afraid he will hurt me or abandon me as has happened before with others. He's persistent, and despite my sending him away, he has waited patiently for me. He knows what to expect, but he seems to care for me anyway.
His tenderness awes me. I am touched, deeply.
While I don't know how things will go in the long term for me and my friend, all I can say is that I wish for everyone out there that has MS to find someone who sees the you outside the disease, willingly accomodates your limitations, and brings you close.
And for those of you who haven't found them yet, here is a tight, warm hug from me, from my healing heart.

hope Springs eternal

The sun is gradually warming the ground and the breezes are often (not always) warm enough to hint at the potential for summer.
I'm drawn to head outside, to feel the air on my skin, although I can't, to feel my hair blow in the breeze, though I can't, to feel the growing grass between my toes, though I can't.
I want to hug my daughter, though I can't, tousle my youngest son's hair, though he's in Scotland and he wouldn't let me anyway, laugh with my middle son, though he lives far away. I want to go back to work, though they won't have me, dig a vegetable garden, though it would hurt me to do it, grow roses, though I seem to kill them randomly...

Despite the multiple barriers I face, something is tickling under my numb ribs. It's like a tiny plant, reaching upwards toward the light, and every day without pain makes it grow quicker. Maybe, maybe, I am getting a bit better. I hardly dare say it, lest I jinx it. But maybe....

Numbness again...

After a festive few weeks with a sinus infection and a cold, I was prepared for a flare-up of some variety to show up. What would it be? Would I be unable to walk again? Would my balance be worse? Would I lose my ability to see? It's all such fun waiting to see what my MS trickster will do to me next....
So I pop up this morning, coughing and etc. only slightly, and head to the shower, where I take my loofa gloves and apply them so I can have a good scrub with my wonderfully sensuous Olay Body Ribbons Body Wash. I squirt a bit into my gloves and start to scrub. Or at least I think I start to scrub. I can't feel the gloves, anywhere. I scratch my arms, my bum, my legs - nothing, nada. Can't even feel the pressure of the scratchy things on my hands. Gradually I realize I am totally totally numb, everywhere. Nothing. I knew it was slipping away yesterday when I gave myself a Copaxone shot and felt nothing - not even the pressure of the autoinjector.
Well, I suppose I shouldn't complain - I can stand without falling while I wash my hair....
As I'm washing my face, with the gloves on (may as well go for a good exfoliation while it doesn't hurt), I realize the numbness isn't total. Laughing, I touch my one feeling place. The inside of my right eye, near my nose. It's like a final tee hee from the MS - here - "you get one spot," it says, gleefully. "But I get to choose."
Last time it was a spot under my right armpit. The time before that it was one space on my neck, which when kissed sent me into spirals of sensation. I'd forgotten how it felt to be touched, and almost swooned with the sudden thrill of it all.

My eye is totally numb now - even my one spot has shut off, leaving me feeling suspended in space, shut off from my world of sensation. Even my tongue is numb, my ears, the top of my head.
My only sensation is the small motor cramping of my hands as I type, and the motion of my ribcage as I breathe. And I can see, thank heavens, and hear. Eyes closed, I sense the room tilting slightly to the right, upending and twisting like I was doing a star bend hand to opposite ankle.
It's a novel sensation, this complete numbness - I still haven't got used to it although I seem to have it fairly consistently. If I concentrate, it feels like meditation does - that out of body sensation where one's head feels as if it is floating above reality, isolated from the rest of the body.
It's cool, in a way. But I miss feeling kisses.....

Whoops! Or is that Hmmm...

Every once and awhile I think I really am fine, that there isn't really much wrong with me that a few years sleep won't cure.
And then I pop into work.
And I realize that people thought I was losing it way before I did. That my brain was misfiring for longer than I thought, that I said and did things that I no longer remember that offended some, created pity in others. That people thought my job was too difficult for me, in fact for anyone.
And I don't know if that's because it really was all that difficult (it was pretty busy) or if it was just me and my brain holes that caused the problem. So then I wonder - have I been acceptable to other people? How much hurt have I unwittingly wrought? How impossible have I been, really?
And then I want to curl up in my little hole and pull the door in around me, shutting out the world that apparently feels I am unstable, unpredictable, unreliable. It kills me.
And I try and learn something new and it doesn't stick, but slides to the floor, unrecognized and unmissed.
Horrifying.
But, like the lass who is remaining plump in case she gets anything like a serious illness and needs it for strength, at least I've bolstered my brain and have some grey cells to spare. I think. If I can only keep them from leaking out of my mouth....

Planning, with a wee bit of nervousness

I'm planning a trip. Yes, it's madness. I will have no money, don't know if my health can stand it, am traveling with someone I don't know all that well. We're camping, which virtually guarantees rain and clouds of biting insects. But we are heading to my beloved Maritimes, he is a comfortable companion, and it is a measure of hope for me to take this risk.
I don't know if I'll remain well. I don't know if this will throw me back for weeks. I don't know how I'll do, sleeping on the ground for weeks, traveling, cooking on a campstove.
I do know that the ocean is calling me - it has been for months. I do know that my companion will look out for me. And a little rain never hurt anyone...
Fingers crossed but heart wide open....

Reebok wobbly shoes

At last, at last - I have found the perfect shoes to wear to explain my wobbly walk. Reebok has designed a new set of shoes - called the "Easy Tone" shoes, that provide instability pods in the soles to help you work out your legs and bum muscles by making you unstable as you walk.
Finally a benefit to being unstable as I walk! Perhaps I am already increasing by 11-26% the amount of work my legs are doing as I wobble along? Maybe that's why I feel tired after walks, perhaps?
All I know is that I want a pair of these babies. Then when I stumble sideways into unsuspecting bystanders, I can gesture at the shoes and explain for once in a way that doesn't reference this disease! Huzzah!

MS day at Home Health Care

Today I popped into a MS day exhibit at my local home health store. I knew it would be depressing, but I wasn't adequately prepared for the downer it gave me. One lady was consulting about incontinence pads. "Are you largely incontinent?" asked the sales lady "Unfortunately, yes," said the lady. The sales lady then bustled about, gathering large diaper things, pads for the chair, waterproof panties, etc, etc.
Beside her was a lovely lass in a wheelchair, touting supplements that made her feel much better. Not enough better to get her out of her wheelchair or give her back the use of her right arm, but...and only $150 a month. "The only thing for progressive MS," she said. "my neurologist said if it seemed to be helping I should keep it up." My nurses mind whispered, "placebo effect" and I wandered on.
I asked about scooters. The helpful lady at the counter said that I should check with my neurologist because "sometimes the disease progresses so quickly that they want you to go right into a power wheelchair". !!!!!!!!!!
So I bought a swanky multicoloured cane and a hand exercising ball which puts my hand into a spasm just to look at it, but I will persist. And I fled. Quickly, my life gathered into one twitchy fist, feeling it slip through my numb fingers, stepping on its fabric as I stumbled towards my car. It's a wobbly day today, I told my friend. I need the cane today. Again.