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....