August 30, 2009

Please, sir, may I have some more?

MS stinks. It frightens people away, it has caused the loss of my job, it has lost me friends and more because of my unfortunate “brain spasms” and depression. It is no sunshine valley, but for some reason, like most of the people I know with MS, I am determined to be cheerful – something that I find most annoying in others! Maybe it’s the brain lesions…;-) I have probably evolved into the most annoying morning person I know, as I wake to find I can still walk, and by Jove, nothing else seems so bad!
But the future of increasing disability is pretty chilling. I’ve been for help but most people look at my exterior and think I am coping wonderfully or offer ersatz help, like “are you taking supplements?” or “play the recorder – it will make you feel better…” Well, I learned to play the Recorder at age 12. I’d like to think I could do something more significant with the rest of my life than blow on a wooden tube, no matter how pretty it sounds.
I need MORE.
And I think that’s the general claim of my MS – no, wait, I need MORE! More life, more chance to give back in gratitude, more learning, more time to love and be loved, more walks in the woods, more skating on the canal, more exercise, more touch, more air, more rain, more sun, more….
Every day becomes a greedy grab for anything I can get, even if it’s a smile from a small child in a restaurant, , a breath of fall-freshened air, a cheerful “have a great day” from a cashier, a kiss, a taste of a perfect raspberry, or a slurp of a slighty melty chocolate bar. Like my two year old self, I think “I wantit!”
Sometimes it leads me astray; too much chocolate leading to that unsightly swelling about the tum, or relationships with unsavoury individuals who have won me through that kiss.
Sometimes it makes me decide too quickly, and pay for my errors later. I apologize more than ever before, unsure of whether I have offended through some unwary utterance.
Sometimes it leads me to bliss, like my glass blowing class that taught me the joy of creating from molten hot semisolids, or the meeting of someone wonderful through sheer luck and happenstance.
Overall, the balance seems adequate, but I *am* a bit glowy from a wonderful weekend. And what is my reaction to that weekend?
Like my two year-old self - I shout "Again! I want to do it again!"

August 21, 2009

needing to be of help...

One of the hardest things about having this changeable disease was the need to leave work. Sometimes, for days in a row, I feel fine. How do I rationalize that with not being a contributing member of society, not working for others, something towards which my whole career has been geared. Writing, for all its joys, is a selfish activity - the benefit is difficult to ascertain and it is such a solo pleasure until publication happens.
I've been feeling groundless of late, losing a sense of purpose, increasing in depression, and I know this is from the quiet of only looking after myself.
So today I took action. I've already signed up for classes and fun in my new town, but today I started with the giving back stuff and contacted the MS Society to see about volunteering. It was wonderful to feel welcomed, and enthusiastically, for my skill set and interests. It does my heart good to think that this brain I spent $1000's to develop might have a few bright helping sparks to give, after all.
Helping you helps me and all that. So true. I feel better already!

August 13, 2009

Traveling through the Phantom Tollbooth

Or, trapped by the Terrible Trivium, a monster that gives you endless pointless tasks to perform...
Today was a wasted day, and for some reason a wasted day seems MORE wasteful in the big city than it did in my little town. There's a whole world of fun things to do out there, and I didn't do a single one of them - just sat on my balcony, feeling the breeze, read "The Phantom Tollbooth" by Norman Juster (a fabulous book about words and language, filled with puns and more). I have a dozen writing contests to prepare entries for, and lots to do, plus the wonderful potential for exploring the city.
But the heat defeats me. It's 30+ degrees Celsius (90F) out, plus humidity. It's insane. Even the thought of it fatigues me, and I'm unwilling to get all sweaty and potentially induce brain swelling right now. I'm still dragging my body about recovering from the move, which all seems unreal to me.
One thing I should learn is that making decisions in times of brain fuzziness is not wise. I keep doing it, and live to regret it. But what seems like a good idea when I see myself in a hole and need to dig myself out of it is too tempting. I keep jumping to the Island of Conclusions, as Milo did in Tollbooth. And once you jump onto the island, it's hard to get off again. Let's just talk cell phone contracts, for one thing...
The cognitive changes in MS are one of the hardest things to cope with and understand. As a new friend told me last night, if you are irrational, would you be able to judge yourself as irrational? Do the mad know they are mad?
When life gets foggy like this, I know I need to go to ground and pull the covers over until I can see clearly again. It's hard to make others understand my sudden absence from things. But if I don't pull back, I know the mistakes I make will grow -and they may get past where I can easily correct them.
So, it's time for me to struggle off that island of conclusions and try and do things sensibly. Maybe a cooling drink would help....

August 10, 2009

Success and failure

Ferris Bueller famously said, “Life moves pretty fast. [If] you don't stop and look around once in a while, you could miss it.”
Usually, I feel like a winner. Despite the MS, or even because of it, I feel I have succeeded in life so far, that I still have something to offer, that I am valuable as I am.
Today hasn't been good for that.
My new bathroom has mirrors hung at the level of my too large tummy, got that way through depression eating and not enough exercise. This morning's shower was a bit alarming. I am quite quite good at lying to myself, and I had told myself I couldn't possibly have gained enough weight to look like this. Hmm. Note to self: lights OFF for next bedroom encounter. All of them. And stop wandering about the apartment in the nude.

Then I (dressed) went to sit outside with my breakfast on my comfortingly noisy balcony (I can't get over how much I am enjoying traffic noise!), and, carrying my coffee and healthy cereal the ten feet to the balcony proved too much for me, as my ankle had different thoughts. It thought lying down would be best. Since I have no feeling or proprioceptive imagery in my feet, it took me a fraction longer than it should have to self-correct. I flew a bit. The coffee flew a bit more. My healthy cereal, laden down with helpful healthy fibre, stayed relatively put.
And, since I'm tired and living among far too many collapsed boxes and mess, this all spiraled into a shortish, brutish talk with myself about the levels of failure this MS has forced me into. Oh, how annoying.
I hate when I get this way, and so does my universe. Messages start popping up everywhere I go, from an article in the Walrus about Alice Munro, to a Facebook posting about John Hughes, about the importance of believing in your purpose and working towards it. Even my horoscope told me to stop being so hard on myself.
Well, far be it from me to doubt these messages from the ether. So I'm taking a day off from self-judgment and instead focusing on creating beauty (and softer corners) all around me.
Oh, and washing the carpet.

August 8, 2009

Moving Madness

Moving day + 3 and I am upset my apartment still looks like some large department store (of the Kmart or cheaper variety) dumped all of its seconds into a bin...My den is somewhat tidier, books unloaded, computer and bird set up, music crooning to me from the speakers. I am surrounded by useless objects that had seemed important in my former house-owning life...
And I realize this apartment will be a challenge if my abilities lessen, which means perhaps another move in my future. On the other hand, I love the neighborhood, can't wait to explore more, can see the mountains, can feel a breeze, can hear people talking without caring about what is happening (unlike small town life). The sound of traffic is soothing, like waves on the ocean, after the periodic noise of summer in a tourist small town.
The move hasn't been easy on my MS symptoms, but I'm grateful things seem to be adjusting. I developed my first instance of esophageal spasms yesterday - ouch! I actually thought about whether it was, in fact, a heart attack. Called my MS associations to ask - they didn't know about it - but the web did.
For all of you who don't know, esophageal spasms are not uncommon in the general population, mainly due to reflux. It only requires a little gastric fluid to cause it. Not heart burn, this is more like a muscle spasm of the esophagus. Think of a charliehorse in your throat and midchest. It is astonishing.
I could still swallow, but didn't trust anything chewy, and am still hiding from these substances today.
Eventually it eased, after a couple of Robaxicet and some sleep. Not my favorite symptom, not atall.

August 1, 2009


Today I hauled my Aphrodite Schwinn (designed for a woman's body, or so the ads said) bicycle out of the garage, dusted off the spiderwebs, pumped up the tires, and hopped aboard. I needed to get downtown quickly and with all the tourists about, it was the best way - but could I ride without falling? I hadn't been on it in over a year....
And would falling the last few days before my move be smart?
Ah, the heck with it, I thought, and climbed on - and I COULD RIDE. I did not wobble. I wasn't filled with vertigo.
I could feel the freedom of the wind as I rode, even through my helmet - it was wonderful.
Tomorrow, I'm going again......