December 31, 2009

Love, romance, and the eternal doubt of life with MS

It's all very twee, isn't it? The whole vision of love and romance and walking through a landscape filled with hearts and flowers, babbling brooks, sunlight, and sweetly chirping birdies to add music....

Well, I've always had a hard time believing all that - typical first love broke my heart thing. And, as an overweight, very short gal, I've spent quite a bit of my life feeling unloveable. Having MS for years and not knowing it made me feel even more unworthy - tired all the time, cranky when I was too tired to think, numbing and filled with pain in alternates.

Add to that the full MS cover. Now it becomes almost impossible to think that anyone would ever want to be around me for more than a short time, for more than a quick roll in the hay, for more than the good times. Who in this big world would be willing to take on a moody with MS, falling apart lass, who has difficulty with everyday tasks and regularly forgets things on the stove? Who will probably get worse and worse and worse?

I mean, I can be brazen and tough it out, tell myself I am good on my own, be more fiercely independent than ever. I can wear my push up bras and mock men for their attention to silly things such as breasts, I can educate myself and fool myself that I am perhaps alone because I am too smart, I can push away everyone who tries to get through the armour.

I do all of this, deny my need for support, contact, affection, touch, love.

Because I know there are storm clouds beyond the sunny meadow, and I don't want to inflict those on anyone. Not even a dog.

It makes me unwilling to trust in love, to let myself fall into it, to accept it when given. Like the rest of my life, which has become undependable, I figure it's a wobbly thing, given to short-circuiting like my fraying nerves. And who knows? Perhaps I have a lesion on my "accepting love" gyrus or something.

It would take a very patient, persistent, and kind man to lead me down the meadow past the hearts. I'm balky.

I may, may have found just such a man. Fearfully, I take a step into the warmth...

December 30, 2009

Angiogenesis and MS

Increased blood vessel density and endothelial cell proliferation in multiple sclerosis cerebral white matter.

1 Votes

Increased blood vessel density and endothelial cell proliferation in multiple sclerosis cerebral white matter.

Holley JE, Newcombe J, Whatmore JL, Gutowski NJ

Neurosci Lett. 2009 Dec 24; doi:10.1016/j.neulet.2009.12.059

Multiple sclerosis (MS) is primarily considered an inflammatory demyelinating disease, however the role of vasculature in MS pathogenesis is now receiving much interest. MS lesions often develop along blood vessels and alterations in blood brain barrier structure and function, with associated changes in the basement membrane, are pathological features. Nevertheless, the possibility of angiogenesis occurring in MS has received little attention. In this study we used triple label enzyme immunohistochemistry to investigate blood vessel density and endothelial cell proliferation in MS samples (n = 39) compared with control tissue to explore evidence of angiogenesis in MS. The results showed that in all MS samples examined blood vessel density increased compared with controls. The greatest increase was found in subacute lesions where numbers of positively stained vessels increased from 43.9 ± 8.5% in controls to 84.2 ± 13.3% (P = 0.001). Furthermore, using an antibody against endoglin (CD105), a specific marker of proliferating endothelial cells, which are characteristic of angiogenesis, we have shown that vessels containing proliferating endothelial cells were more pronounced in all MS tissue examined (normal-appearing white matter, acute, subacute and chronic lesions, P ≥ 0.027) compared with control and this was greatest in the MS normal-appearing white matter (68.8 ± 19.8% versus 10.58 ± 6.4%, P = 0.003). These findings suggest that angiogenesis may play a role in lesion progression, failure of repair and scar formation.
See also: for a description of angiogenesis. It is what is responsible for diabetes related retinal changes, etc:
How is Angiogenesis Important for Health?
Angiogenesis, the growth of new capillary blood vessels in the body, is an important natural process in the body used for healing and reproduction. The body controls angiogenesis by producing a precise balance of growth and inhibitory factors in healthy tissues.

When this balance is disturbed, the result is either too much or too little angiogenesis. Abnormal blood vessel growth, either excessive or insufficient, is now recognized as a “common denominator” underlying many deadly and debilitating conditions, including cancer, skin diseases, age-related blindness, diabetic ulcers, cardiovascular disease, stroke, and many others. The list of diseases that have angiogenesis as an underlying mechanism grows longer every year.

What else would you do....

Went looking for a photo of letting birds fly and found this ridiculous one, couldn't resist....incidentally, don't let tame birds fly free. They die. In awful ways.

Before I received this gift of MS, I was a fiercely independent gal, always wanting to be the powerful one in any relationship, always withholding part of myself so I could have the strength of being unknown.

I liked to be in charge, the cage holder, instead of the occupant. I'm not sure where this level of ferocity came from - perhaps it's short woman syndrome, or the years and years of life I spent in high school, being the unwanted one, the one with no power. When I finally figured out how to get some, I was intoxicated with it, overjoyed that I had it, amazed that a 4'11" woman could command attention with little more than intelligence (and, if dealing with men, a push-up bra).

MS came along, and took away part of my quick-twitch mind, as my ex would have called it, slowed it down, made it less trustworthy. It made me cry at inappropriate times. It changed my outside persona from the uber-competent one to the bit wobbly one. It made me lose the power I'd accumulated. I ended up leaving work because it was too hard to live with my losses. At home, and protected, I can hide how awful I feel most of the time. I can hide my neediness.

There is grace in surrendering. I am a much better person now - calmer, kinder, more understanding, less demanding of others. Less angry overall. More appreciative of small things.

But in amongst the surrender, I have to figure out a new pathway, a new way to go. In my case, MS won't kill me. So the game plan has to be a good one. Do I want to relax, or keep striving? Where shall I focus my waning energies?

Today I heard from two friends - one is moving on to bigger career challenges and successes. I felt a wash of grief and jealousy in among the happiness I felt for her. I'm relieved that fight is behind me, but I grieve that I can no longer choose the fight, even if I wanted to.

Another was a friend who, when she married her husband, adopted his children . I was asking her how that went, sharing the family. She said it was challenging, but great - when I mentioned that I felt I was done parenting, her question was "What else would you do with your time then?"

What else would you do with your time, then?
What else?


I'd read the books I never had a chance to read while I worked and parented and got my education.
I'd write the books I feel are in me to write.
I'd volunteer in a bunch of ways I didn't have time for before and use what is left of my knowledge to help make the world a better place in the small ways I can.
I'd breathe in the silence of a childless house and enjoy the thrills of a tidy one.
I'd save up so I could travel to Greece or Cuba or Dayton Ohio (and the Erma Bombeck conference).
I'd learn to forgive people easier, to let go more rage about things gone past.
I'd get as fit as I could, be healthy as possible, move as long as possible.
I'd campaign for social justice through the political system.
I'd write a thousand more letters for Amnesty International to help free those who live lives of despair.
I'd walk, crawl, run, wheel the MS walk to raise money for research and support for the others afflicted with this disease.
I'd paint, create, play, have bumptious sex, love, embrace, smile, watch the moon go through it's phases, watch meteor showers, laugh with friends, listen to good music and great plays.
I'd run away to places that lifted my soul, and wallow in them up to my hips. Even if a walker has to come with me.

But most of all, I'd find a way of contributing somehow. I still need to make a difference. Before that, too, is taken away from me.

December 20, 2009


What is a sweet little trusting soul to think? I am so so tired of having my happy little illusions of the world crushed. It's bad enough the economy is tanking, the wars continue, my body continues to fall apart with MS and my dear ex-mum-in-law continues to perish from ALS.
Do we have to dash my hopes that there is some good in the medical world?
I've worked in the Ontario Community Health Care sector for years. I know how very few patients most of the physicians in this salaried model take on. I used to administer these docs, and on my teams, ever doc had at least 1000 patients, supported fully by a multidisciplinary team. The CHC that I have applied to for care - their docs have way fewer patients. Some have only 400-500.It is an appalling waste of resources. And they will not accept me as a patient because I am complicated, despite their avowed focus on people who suffer challenges. Well, I'm broke, unemployed, disabled, and without a physician. Surely that counts for something.

I am a client of the MS clinic in my former town, and guess what? They never offer any solution for anything, and even though they return my calls, they never want to see me or evaluate me. They expect me to just suffer on. They are of no help. They have kept me on an expensive medication that is not working despite my reports of same. They cancelled my appointment even though I have been complaining about increasing symptoms. They suck.
And then this, an article from a man who very clearly delineates the awful fighting lines of the various players in the MS game. I try to believe the people out there are trying to make us better, if not well, but his arguments make a lot of sense.
Suddenly, I feel a bit like Little Red Robin Hood, cheerfully setting off down the forest path to do good, only to start hearing suspicious sounds in the woods around me.
Unlike, Robin Hood, I have no intention of being eaten by the wolf. I am starting to get angry now. My faith has been misplaced. Even though the only person who has been kind to me in this journey (of the medical side) is my Copaxone nurse, Bonnie, I am still furious about the conflicts of interest that seem to be dragging any hope away.

December 18, 2009

So near and yet so far...

CBC television news has scored a big "now now, CTV, getting a little too excited are we?" coup about the CCSVI hopes that all MS sufferers have been offered of late. While the "there, there" aspect of the report is definitely a cross station gotcha, the point is valid - too much excitement has been created too quickly over the thought that clearing veins will cure MS.
I have to admit I fell for it, too - one whole day of my life spent dreaming and hoping and wishing and wondering about what life would be like when I was all better, instead of gently deteriorating as I am now and have been for the past 20 years. What would it feel like to actually be well? What would I be like with no limitations? It was intoxicating.
Then my questions started raising their ugly how safe this procedure really was... and how come so many people needed to have multiple operations...and why would this have such dramatic results when most of these people necessarily had generated collateral circulation from their brains (or else they would have been a lot worse off or dead).
And why was there no difference in outcomes 18 months after intervention between people with progressive MS and control subjects? Surely there should have been some slight improvement, shouldn't there? Unless we are talking about a complex disorder here, perhaps more than one....
I am reminded of the discovery that breast cancer was really two different diseases depending on when it occurred in a woman's lifetime, that it responded differently to treatment depending on which disease it was. I'm also reminded of ulcers and the discovery than antibiotics cured them, most of the time.
Fact is, we often get things wrong first time around in medical and other research. Rather than immediately jumping on those cautious about the possibilities and accusing them of wanting to keep people ill (which I imagine must be very dispiriting for the researchers who want to replicate things and ensure they are right before jumping on the bandwagon), we should be thankful for the doubters.

I know how the MS people feel, being one myself. I know desperation for cure. I also used to be one of those people who wanted to always move forward, without looking behind to see what was falling off the truck as I sped along. I've worked for people like that, too.
But being off and unwell with MS for a year now, almost, has given me some perspective. Let the experts review things. Yes, push for research, broad, diverse research that may give us some clues. Push for free research, unbound by results orientation, as free research is often where the "ahas" are found, rather than in research that looks at how to make a pill 0.00002% more effective. Let the scientific brains do their random walk and discover miracles.
But wait until the proof is in before leaping to try untested remedies.
What worries me is that many people will beg for surgery, get it done, and die or suffer greater problems, and this will end the funding for further research into this promising area of CCSVI.
Be patient, people. We are all desperate. Breathe deep.

December 17, 2009

A perpetual holiday is a good working definition of hell. - George Bernard Shaw

I know, it seems counterintuitive. But when you are used to responding to life, to the everyday crises, to the demands from bosses, clients, traffic, kids, whatever, the sudden void of an enforced perpetual holiday is quite amazing. Not only do you have to motivate yourself to move every day, you also have to find a reason for getting up in the morning, for doing the basic things like showering, eating, speaking to others.
It's all okay for a while, but when you find yourself longing for a pussycat to mew for food, you just know hell has intruded into your life.
We all want meaning in our lives. We want to think that what we do matters, that we have a reason for being here. But when you are suddenly disabled, what is your reason? What are you doing, save using up resources? Oh, I know the voices that will rumble in from the edges - "of course you are important - your kids need you!" or "Of course you have value, you have so much you have already done - you can just relax now..."
I imagine this is why the retired are so busy - to quell that little voice within themselves that they don't really matter anymore, that they could be spit off the globe like a watermelon seed and although people would grieve, the world would not be perceptibly worse for their absence. This is, I think, what Shaw was referring to in the quote above...
In the quiet of a less busy world, you have to face yourself more in the mirror. Instead of a flight by on the way to activity, you have time to look deep deep into your eyes and see the balance of your life - the good, the bad, the places where you have missed the chance to act, the places where you've acted where you shouldn't have, the people you've helped, the people you've hurt. It's not always comfortable. It can be can freeze you into immobility, or propel you into frantic distractions.
And then you realize that you still have many many years left on the planet, and you need to make them worthy of the gifts you've received.
Just surviving is not enough.
At least, not for me.
Still searching...

December 6, 2009

Trigeminal neuralgia, or the joys of a rictus grin

TN, both acute and chronic, is a frequent gift from the Mad Sow.

"Trigeminal neuralgia (facial pain) is characterised by brief episodes of intense, stabbing, electric shock-like pain on the face. These episodes occur spontaneously or can be triggered by light touch, chewing, or changes in temperature (i.e. cold). The pain is so intense as to be completely disabling. In addition, weight loss is common because oral triggers prevent affected individuals from eating enough to maintain adequate nutrition.

A less common form of the disorder, called" a typical trigeminal neuralgia", may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs."

Okay, this is all very jolly, as is the comment that it is a very treatable condition. Surgery, medications, nerve assassination all can help...however...

First, one has to see a doctor to have it treated. As my MS clinic makes a game out of not seeing patients, this seems unlikely to happen in my case.

Secondly - weight loss? Well, that could be true - fact is, with the pain and my difficulties in swallowing, there are few things I have the will to eat. Unfortunately, ice cream and mallomars and fudge and wine and beer and all that fits sweetly down the old gullet...So I have yet to notice any advancement in my weight loss goals. Alas.

What I do notice is fatigue and pain when I have to talk, always present facial pain, total facial numbness, and the feeling of dropping ice cream, mallomars and fudge out of the corner of my mouth....smiling, one of my favorite things, needs to be paced during a bad stage, or I live to regret it, with needle sharp pain up along my eyes and into my nose. I have a constantly running nose and frequently running eyes...

("Does your nose run and do your feet smell? Why, you're built upside down!")

It's SO attractive. Of course, I probably feel it more than it is visible, but on days like today I feel like my eyelid is drooping, my lip is spasming, and my cheek is protruding into space.

On the good side, I've lived with the pain for so long that it is no longer completely disabling. It's just a constant undercurrent, sometimes more turbulent, sometimes calmer. It's hard to believe it has been my constant companion since 2002. It snuck in, feeling like a gentle caress on my face, fingers stroking my cheek like an inattentive lover to the point of irritation. Then sharp pain along the line from ear to nose. Then tearing, and lip numbness, and hearing problems, and all along a sneaky chronic pain that I live with until an unwary smile knocks my socks off with a fiery line from ear to face.

Unlike my other varied MS symptoms, I don't ever enjoy this one. Some of the others are kindof amusing for a while, but I suspect that's because I never know what I get next. The ones that hang around lose their amusement value. So far I have this facial pain thing and now chronic spasticity in my flexor muscles in my legs. I'm getting bored with both of them. I'd ask for a new symptom, but I'm afraid my body would agree!

December 3, 2009

j'ai perdu le fil - or ccsvi and MS

Or is it: Ich habe den Plan verloren (I've lost the plot)?
Okay, reality is I was thinking of the threads of life with MS and then I went looking for a photo to use and there was this lovely one of Frances and her ball of string from Minnesota, and well, I just had to include it.
In any case, I haven't been posting because I've been like a kitten with Frances' ball (or perhaps a more manageable one) around this whole venous insufficiency cause of MS thing. One moment up, another down, one tangled up in hope, another tied up in cynicism.
On the one hand, it makes logical sense. As one commentator said, we've always known MS was an inflammatory disease, but we just didn't know what caused the inflammation. Makes sense that the iron deposits in MSers brains might stimulate some inflammation, eh what? And the refluxing thing seems reasonable in terms of laying down more iron than should be there. In any case, it all seems promising, just (alas) not right now.
On the webboards, there are hysterical requests for "where can we get this done now!" that sound very much like Veruca Salt in Willy Wonka. We don't even have ultrasound thechnologists who can do the assessment properly yet! And no one seems to be thinking about the risk of having a loose stent flowing right directly back into your heart...from the very pliable and easily torn venous tissue. But, like the gruelling stem cell research that several have gone through, if it appears to offer a solution, we want it NOW. I was just at an education evening about stem cell research where everyone was begging to have their immune system destroyed in the hope of some recovery. Two weeks alter, now everyone is begging for something completely different...
And there are the conspiracy theories about why we haven't heard of this before now - the "big pharma" companies and neurologists are in some evil conspiracy to keep us hooked on their drugs forever. Well, yeah, big pharma stands to lose some cash if we all get healed, but it's gonna take a while, and I imagine we'll still be taking the drugs for the foreseeable future, given that the iron won't be leaving our brains anytime soon, even if our veins work better. We'll still need dampening of our immune reaction to it.
Reality is, research in MS is charging forward at a great rate. I am quite amazed at the progress made in the last 10 years - heck, it's no wonder mine wasn't caught until just recently - it wasn't even well known when my symptoms arose. Even now, most docs know nothing about it. In the past few years, we've been given some real tools to delay things - a good thing while they work on the cure. The cure will take time. Unfortunately.
This leads me to resign myself to my probable fate. Perhaps this means I am not fighting enough for access to care, for treatment, for whatever. But I don't have faith in any of it yet. I dutifully take my Copaxone, while feeling it is doing no good, because it's the only alternative at present. I haven't noticed any reduction in flare-ups, really - in fact I am getting worse.
But fighting takes effort, and is wearying. I am too tired to fight with the medical system for unproven remedies. I'd rather exercise, try to keep well, rest, than take thousands of drugs for every symptom. And watch for chances where I can contribute to the research, to help, if I can, the 1000s behind me who are still young, who are still working, who have families still to raise. Yeah, I could push to the front of the line if I wanted to, maybe. But I remember being whisked past people holding their entrails in so I could get a CT scan quickly when I lost my vision. I felt foolish then. I'd feel foolish now. I can still walk; so many can't. My kids are grown; others' aren't. My parents are gone; others have parents to care for also. I can wait. And work on my own ball of string.

November 15, 2009


Quicksand arises when there is flowing groundwater passing through a sandy pit that keeps the sand from compacting. When you hear this, it takes away the mystery of the whole terrorizing quicksand of the movies - the stuff that lies, unremarked, for years, until the bad guy passes by and is consumed. Often it's just the extra that gets sucked in, the infamous "black guy" in Star Trek that accompanies the bigger stars on a planet explore, only to die gruesomely.
Lately, I've been feeling that quicksand-y feeling. It's all part of figuring out what I should be within the framework of my illness and limitations. I no longer have a job, or the mental stamina to think about that job anymore. My children have grown up and they rarely need me now, I'm divorced, I live alone save for a feisty parrotlet named Dora. I write, but I don't know that I write well, or that I have anything meaningful to say.
I purposely moved to this city to force myself to deal with the anomie, to face it head on instead of hiding it behind old friends and things. I wanted to wend my way, find firm ground under my feet.
It's not easy. I find toeholds - good friends that support me, family who care for me, a sweet man who loves me, but the toeholds are still slippery, and I don't fully trust them. I need to find a place to put my foot flat down, to find myself again, to find a purpose for my life, so I don't feel as if I am just using up oxygen and resources (primarily chocolate, but never mind) with no output.
Is it enough to just live and be thankful for that? Is it enough to read and appreciate, and see and appreciate, and move and be thankful? I think we have a responsibility to do more than this.
I try, in my little ways. I try to be cheerful, to bring smiles everywhere I go. I offer little helps. I want to offer bigger helps, but resist because I am no longer a dependable worker. My skill set is rapidly deteriorating, my new skills are slowly developing. And gently, inside me, my MS is slowly dripping to take away the sand from below my feet.
How do disabled people find the will to go on? How do they continue, when they know they are no longer contributors to the sand pit of life? Do they rest on their laurels, as I have been counseled to do? Do they find ways to remain contributors, despite their increasing loss of ability? When do they decide to stop fighting the quicksand, and let go? (which, by the way is supposed to be the best way to stop sinking, so perhaps the Buddhists have it right after all)
I'm learning to stop kicking, but it's hard. I've always been a kicker. I've lived my life as an advocate, a change agent, a promoter of others. This giving in to a disease that cannot be seen and that changes day by day is so hard.
So while I'm trapped, I'm thinking. I don't want to be an "extra" in this world. I still want to contribute. Now to find the direction. And then to wriggle slowly, carefully, over to the dry sand.

November 4, 2009

Some days you're the tire, some days you're the road

I am so sorry to whine, but for the last month or more, I've felt just like the poor mouse in this picture, shaken back and forth by my MSCat. It just won't let me go, and plays with me and tosses me between its paws and chases me when I think I've got away for a bit.

I can hear it purring with the enjoyment it's having with me.

Last night, in amongst my leg hiccups (back in full glory, darn it), I felt something new - the teeth of the MS, as it bit on my leg. The touch of the sheet was agony. Liquid fire burned up and down my right leg, causing me to gasp out loud. All of my nerves were agitated, so that the touch of a hand was an acute irritant. Even the gentle, caring touch of a dear friend.

Sometimes, I can pull it together for short periods and seem almost fine. I can laugh, chat along with the rest of them, go to events, make love, eat foods that require chewing.

But EVERY TIME, I have to pay for it. EVERY f*^&^%*ng time. After every fun day, I have days of exhaustion and pain. After every laugh, I have a moment of sorrow.
It's almost enough to make a gal give up and decide just to sit about and watch reality TV, especially on days like today when my brain is fine but the rest of me, from my throat on down, wants to pack up and go to Bermuda - and you know what? I'd send it, if I could. Even for five minutes.

Unfortunately they are connected, my mind and body. And the final laugh is that my mind is what is wrecking my body, as it degrades. It's all so ironic, for the gal who spent a lifetime working on her mind...

On the good side, whatever wrecks things in my brains also makes me appreciate the wrecking, like the mouse admiring the artistry of the cat as it tosses her up and down, catches her by the tail, whips her about in glee. We are marvelous things, hunters and hunted.

So for today, I'll watch and admire the killing dance. Tomorrow, I'll try to escape again. After all, the cat expects it.

October 28, 2009

Chewing on aggravation

I am feeling testy, or rather, close to royally pissed.
First, I call "Service Canada" after their threatening letter about my CPP stuff - which I sent them yonks ago and which was screwed up due to their staff's stupidity, so I have to settle it again - and they talk to me like it is all my fault for being a lazy so and so and why HAVEN'T I got those forms in yet, despite moving, errors, MS and all that.... Grrr.

And then there's the having to rent a car so I can get to a doc appointment 2 hours away so he can sign the forms that declare me disabled STILL for a disease that is never going to go away and seems never to be getting better, but I must verify it with my doc every three months notwithstanding this and I still don't have a doc in my new town...

Then I keep running into people who minimize what I am going through, tell me to cheer up, remind me that after all I could be hit by a bus tomorrow (you know who you are) which I KNOW is meant to be comforting, but which has the effect of making me feel my current, very real difficulties are of no matter whatsoever. Yeah, I sure as hell know it COULD be worse. That doesn't mean it isn't pretty bad right now. Of course, no one can see the pain I deal with, or the muscle spasms, or the discussions I have with my bladder, or the fatigue that pushes its way into my consciousness all the time, rendering me speechless.

I knew one fellow who told me I should be rejoicing in my "Freedom-50" - not having to go to work - when really I'd work in a salt mine if I didn't have to deal with this thing and live in ever increasing poverty...

And then there's just real life annoying me - huge bank charges, the cost of a good bar of chocolate, you know. The stuff everyone has to deal with.

Maybe it's cos I've lightened my antidepressant. You see, I was unable to cry. I know this seems like a good thing, but it's one thing to not want to cry, and it's a completely other thing to want to cry and be unable to. It's all part of the numbness (which, I might add, has become totally encompassing again now, making me want to fling myself against hard objects just so I can feel something, anything, other than the interior muscle pain that exists related to nothing). I can't bear it anymore. I need to sense something. So I'm cutting back, and the result is that I don't go around with beatific smiles (which, frankly, were beginning to freak me out) all the time. Now when I smile, I mean it, and it's not just some sweet nimbus-type glow.

Maybe I won't be so endearingly pleasant all the time. This probably isn't a good thing. And maybe I'm in a mood just cos I went to a MS Society thing last night and saw....and became afraid.

Life sucks. And then you don't die. And it sucks forthwith.
Okay, enough grumping. I'm off to do something practical and giving and sensible - volunteering. I'll be better soon. Sometimes, though, I should be allowed to be grumpy, pissed off, annoyed at this turn of events.

October 25, 2009

a bag of trouble....

I feel a bit like a bag of calamaties today. It's a beautiful fall day, leaves dancing in the streets to the directions of the wind, an aluminum can spinning dervish-like along the road and executing Michael-Jackson-like poses...
The walk along my road was breezy and sunny, filled with people enjoying the respite from the rain, saying that big city exhalation of a hello as they walked by me.
I was focusing. I think I have figured out where the next big lesion dwells. It's got to be on my left hemisphere, as I am developing foot drop in my right foot that makes me need to concentrate when walking or trip. I have foot spasms in both feet, but the right one is much more extreme. My right bum is knotted up, and completely numb. And the left side of my face is in spasm and pain, eye tearing all during the church service I attended.
Add a chronic neck pain on my right side and I could wallow in self-pity for hours. Instead, I wish I could peer inside my head, see what is going on, tease out the frayed nerves and wrap them with electrical tape...would love to know what is happening in that at least, as I curl up my feet to keep them from dragging on the ground I could feel slightly in control.

Let's get physical....

I'm feeling a bit bound up. No, haven't been taken hostage, or involved in some unusual nefarious activity...
I have an elastic band about my waist, holding a pedometer and an accelerometer - part of a physical activity study I'm in from the University of Oregon. It's a well-organized study so far - they are making me wear the machines for a week to establish baseline activity levels and I fully expect we shall be doing goal setting and all that based on these levels to help me increase activity. I'm familiar with the pattern, having created a pedometer-based walking program (or, rather, adapted an Australian one) for public health in Kingston that then spread across the province. It is funny to see it flip its way back to me.
There's a different aspect to this program, though. Whereas I had regular classes with my groups, in this study, they are linking us through SKYPE to counselors who presumably will advise us on how best to be physically active with our various MS challenges. Could be interesting. Already the webspace is filled with documents I haven't seen before, about stretching and exercise and MS. I am thrilled to be in contact with someone who MIGHT, presumably, know something about the disease and be able to guide me. It's been a long lonely struggle and I am tired of reading info in books and trying to figure out everything for myself.
And while I've made good use of "Patients Like Me" for information about various things, exercise doesn't seem to be a common topic. Either people are training for mountain climbing, or they are too immobilized to do much. What about those of us in the middle?
Hoping to learn ways to stay as healthy as possible....

October 22, 2009

Dizzy, I'm so dizzy....

I'm so dizzy, my head is spinnin'
Like a whirlpool it never ends...
Today, vertigo.
Tis lovely. I suspect my eyes have been working on this for awhile as my glasses have been singularly unhelpful of late, but I can't see at all without them. This picture to the side makes me actively nauseous.
The vertigo comes because the muscles that control my eyes are going a bit spastic, not working together. It's very odd. Worsens with movement but not the way a regular vertigo does. Just went for a walk and thought I'd best bring my cane as I wasn't too sure how the ground would be moving.
There's something else afoot also - because in each eye, I can focus but only with part of my vision. Very strange. I seem to have a very narrow field of vision today and it is not very entertaining as oomies abound. So I think perhaps this is a listen to things day, wherein I give my eyes a rest. If I'm not trying to read or focus only on reading, not motion, I can cope.
So today is not a good day for watching the telly while trying to complete the scarf I am knitting to keep up with my wonderful ex-mum-in-law's donations for the homeless. I promised her I'd help take on her cause as she is losing her ability to knit, and I will, just not today. Shifting from close to near is too deadly for today.
I blame my car lust for this symptom. I've been thinking heavily about getting a car. I don't have one at present and I miss my freedom wheels. I am feeling limited but really it's my own fault as I truly can get everywhere a person would want to by just takes time and organization and there is something so freeing about jumping in a car and taking off on a whim. But on a day like today, I realize how dangerous I might be in a car - my perceptions are skewed and the vertigo is dangerously distracting. So perhaps I am better just renting a car when I feel well and need one - and maybe today is just a timely reminder to be grateful for cabs and buses and vehicles driven by others.
I'm hoping the vertigo will pass soon. It's fairly disabling when it occurs - I've had two or three bouts - and it's usually accompanied by eye pain. Not my favorite symptom.
On the other hand, I can feel tipsy for very cheap. Some people pay for this sensation....

October 20, 2009

getting organized

I am ashamed of myself. For the last few months I've accomplished almost nothing - moved, yes, filled out disability forms, yes, but haven't written much, have been negligent about my diet, haven't exercised enough.
Life lived on you tube is not enough, and I am ashamed.
Mind you, I have met a wonderful fellah, have travelled to Cape Breton, have signed up for a series of plays, caught up with some old friends, submitted a novella and a short story/essay, so it hasn't all been for naught. And I've coped with various changes in my condition, from leg spasms to total visual disturbances to more.
Still I have the sense of time washing by like a river and me becoming more and more uninteresting right along with it.
But today, things change. I've signed up for a physical activity study from the University of Oregon that promises to encourage me to get moving again. I've signed up for two on-line classes - one in editing and one in technical writing. And I've joined my young niece in Nanowrimo (National Novel Writing month) in an attempt to pull together a novel over the month of November.
I suspect my worst deadly sin, beyond gluttony and lust (two of my other favorites) is sloth. It is all too tempting, especially with the fatigue associated with this damn illness, to slump into inactivity of body and mind. Right now, for example, I just got up, and yet I can feel the pull of bed, easing me back toward the horizontal. I am soooooo tired. I suspect it is because my body dances on without me at night, spasming and twisting - when I wake (which I do frequently these days), the bed is all scattered and the comforter has twisted around so the opening is at my face. Pillows are all over the place.
I sleep better with someone with me, oddly, as this is new for me. Another body in the bed seems to control my movements a bit, or keep me from falling into the deep sleep that leads to the dancing. Or maybe it's the physical activity that often ensues that makes me rest better. Who knows?
All things considered, I am trying to think of today as a new beginning, trying to ignore the pains in my body, the fact I can't see all that well today out of my left eye, the fact that my neck is complaining, the greying skies of pending November. Life is fairly good, all in all, and the exciting new projects entice me.

October 16, 2009

Knees up, Mother Brown!

I always knew my life was destined to be lived on the stage in some unusual burlesque act, right from when I did a farcical version of "How do you solve a problem like Maria" in University....
MS has livened up my life by adding some V-E-R-Y strong spasms of my thigh muscles, those ones that pull your legs up into a marching position. Sometimes, if I'm lucky, they'll both go at once. If standing, I'd be jumping. Fortunately for my downstairs neighbors, it seems to mostly occur when I am lying down.
I am beginning to suspect this is all an evil plot of my body to exercise one muscle at a time. After a solid week or more of hip spasms, I feel I could lift Paul Bunyan and his Ox single handed with my legs. Now, if only it would work on my abs I could be the glorious specimen of womanhood I've always wanted to be. Bruises from the shots and all!

September 30, 2009

the challenges of encouragement

With MS, it's so easy to become discouraged. It is the easier path, the one that comes most naturally as bits of your body fall apart, or cease to function reliably, or just plain get cranky. It's the same with most of life - looking at debt, or looking at career aspirations that go wonky, or trying and failing as we all do each and every day. MS adds a layer of mystique onto the regular challenges, making the chance of success entirely outside of our control.

There's a wonderful website,, that markets posters and "motivational" things that play on our ease of discouragement. I love their stuff. It makes me laugh. But when I looked at their calendars, which I tend to buy every year and use as a cynical backdrop to my life, I realized something had changed.

I don't want to be cynical anymore. I want to be fresh as a daisy, cheered by a raindrop, looking forward to each new day with the hope of wonderment. I think I've always been a bit that way, but now I find I am rejecting the cynical side of me, focusing more on the optimistic side. There's no real reason for this, except that, really, most of my life has turned out wonderfully. I've even been rescued from a potentially damaging management career by physical illness. Before I could do much harm. I'm thankful for that.

But encouragement is tough. 'Buck up, buckaroo!" is inadequate, and all those posters exhorting us to let up and let God are just plain annoying.

When I was trying to encourage my children, I had the same difficulty as I have now, encouraging myself. Pasting encouragement on too thick destroys motivation. Telling myself I did well to get up and get showered this morning seems stupid. Not encouraging myself enough leads to feelings of failure - what? You only did that today? What were you doing the rest of the time?

Getting the balance right is tough. Our self-expectations are our toughest critics. How to get them on-side and helpful?

Tools to Life, an online web self-help program, touts the message that there are few things we can actually control in life - the chief one being our attitude. "My attitude is my decision" is a frequent statement, and it IS true. But how to maintain an attitude of self-encouragement without becoming a mockery of oneself? It feels silly to tell yourself that you are wonderful, but in reality, who else can do it effectively? If any external person says this, the immediate response (in my head anyway) is to say, "oh, but they don't know about...." Maybe part of accepting encouragement is learning to shut that denying part off. Maybe I'll try that.

September 24, 2009

Shake shake shake senora, shake your body line

Shake shake shake senora!
Well, I love Harry Belafonte as much (or maybe even more) as the next guy, and this song never fails to get me moving, even today, when I feel as if I've spent the last three days in the machine pictured to the left....

Shake it all the time....Rock your body in time....

Yesterday I was hit with another total body dancemachine thing.
So I called the ever-unhelpful MS nurse. Who said she couldn't possibly do anythine for me over the phone, and that I needed to be seen. At a walk-in. Sure. Like anyone there would have any idea how to treat MS. Yep, and I believe in little green fairies, too.

But there was nothing for it. By this time I was becoming an advertisement for bar shakers, so I vibrated over to the walk-in, waited the requisite 2.5 hours in amongst people with supposed swine flu, various people with unspecified coughs, etc., and was finally seated in a small room where the paint was missing here and there and where there was an unattractive smear of mucus along the wall. The ever smiling and pleasant resident told me he knew nothing about MS and so could not help me. He went to get the doctor. The doctor, a 25 foot tall guy in jeans and a loose shirt, came in unwillingly and told me he knew nothing about MS. So I begged him to help me with a muscle relaxant or something as the vibrating was getting exhausting. I was spasming while I sat there, arms shooting out in two step spasms, legs twitching. When I walked to the pharmacy nearby, I could barely stand as the vibrations in my legs shook me about. Even the pharmacist looked at me longer than the docs. Who knows if this is really part of the MS? I might have something completely different but no one is interested in finding out.

Got my drugs, went home, took one, fell asleep. Woke, still vibrating, took another, slept through the night. Today, I am not as twitchy, but my body feels achingly sore, like it would after contracting for hours and days. I tried a walk to stretch things out but am still quite wobbly and weak on my pins and didn't dare go far, especially since my feet started making nasty pre-spasm cramping things as I did.

I'm so frustrated. I keep thinking I am going to feel better, I plan my life as if I will be able to cope with a normal life, and then I get whonked up the head with more problems. And my "helpers" on the medical side are so unhelpful. It's like they expect me to just suck it up and put up with it. Well, I know, I will have to. But they seem never to take what I tell them seriously.
What am I supposed to do???? How am I supposed to live????

And most importantly:
1. Will all this shaking lead me to develop the hourglass waistline I have always craved?
2. Will I be able to dance to Harry Belafonte again? Under my alert control?

Oh Harry, where are you now....?

September 21, 2009

Oooh ooh, twitchy woman

v. twitched, twitch·ing, twitch·es
To draw, pull, or move suddenly and sharply; jerk: I twitched my fishing line.
1. To move jerkily or spasmodically. See Synonyms at jerk1.
Today, I am doing twitching. I've only ever had this happen once before and it's quite a trip, let me tell you. For an hour or more, my body acts independently - of me, of the rest of my body, of rationality. I start tremors in my hands, and gradually my arms, legs, abdomen and back all get into it. My head moves on my neck. It's not like a seizure, as in a seizure, body parts tend to work together. In this case, everything dances alone, to its own beat.
It feels odd, let me tell you. At first I think it is because I've had too much coffee or am hungry or whatever. The usual tremors one sometimes gets from caffeine. But eating, drinking, etc, don't make it go away. And the abdominal twitches are beyond weird. At these times I wish for a tattoo so I can watch it dance to pass the time...
After an hour or so - in this case, an hour and a half, the twitches start to die away but isolated ones still happen - and now the fatigue, headache, and muscle pain set in.
Well, I know what you are going to say - did you call anyone? Get help?
I did. I called my excellent Copaxone nurse, Bonnie, but she hadn't heard of it related to the injection (which I had given a half hour prior to the show). I called the MS clinic, but the nurse was off for today and might be able to call me back the next day. The office staff suggested I vibrate over to a walk-in clinic for assessment but really, what would they do save admit me to hospital or something foolish and then exactly nothing would happen. So I waited and the sensations are lessening. And then I looked it up on patientslikeme, an excellent web resource. Turns out several people also have this little problem. Turns out there's nothing that can be done about it. (what a HUGE surprise). Turns out it is brought on by fatigue or illness, they think. Oh phooey.
Recommendations: more rest. Like I could do anything now except rest - my muscles are totally worn out. Off to my book and a cup of (non-caffeinated) tea.
And hope that it won't happen again. Feel quite oomy.

paperwork, or the moibus strip of government forms

Back a few months ago, I tried to apply for CPP splitting with my ex. For the unitiated, pension splitting is what happens after a divorce where one partner stayed home with the kids and is now entitled to less CPP. The stay at home partner can apply to share the CPP her spouse accumulated while they were married, thus increasing the eventual payout. I was also applying for CPP to help my disability payments -the real benefit right now is to my disability insurance company, who promptly claws back their benefit based on the CPP payment, but never mind.
So, to complete this gargantuan task, I had to take my separation agreement and my divorce agreement to a Service Canada site, have them certify it and copy it, and send it in.
The lass copied half of the documents and sent them in uncertified. They came back in six weeks, saying they were uncertified and couldn't be accepted. When I returned to the office, asking the same lass to certify them, she told me she couldn't because she didn't remember me. I'd packed the originals, so couldn't show them to her.
Recently I received another copy of the form I'd filled out, saying they had never received it. But they had, since they sent me back a photocopied form with the returned document.
So I've filled it out again, despite hand and body spasms, and now will find the other documents and try to convince them they should accept them now.
Why do I still feel they will come back to me?
It seems most unfair to inflict this on someone who has short term memory problems. It's too hard to keep track of everything. Or maybe they are testing my disability - if I snap and call in and yell at them that they already have this info, will that mean I am not disabled?

September 18, 2009

And one and two and one and two

Update on exercises, brain plasticity and all that...
Still slogging through the Wii 30 day challenge although it kills me for the day after each exercise session - and I deleted squat jumps out of the plans for yesterday as my knees felt this was altogether too much to ask. Still, my running is getting better and I can smash the targets in boxing...
So today, as my body needs rest, I thought I would try exercising my brain - and ooh, is it rusty! I know I've been choosing simpler books to read and avoiding mental challenges but I didn't know my slumming had had such an effect. I signed into a site by Luminosity: and signed up for their 7 day free trial of the games.
They are great - much better and more challenging and also cuter than the ones on Brain Age 1 and 2. You do math, identify things through memory, create words, match shapes and colours. Most of the games are a bit like the Swope test - you have to do two things at once, and the results highlight how your brain reacts to these two demands.
For example, in one game, you must click on a spot where a bird appears while remembering the letter that appears at the same time. The letter is put into a hangman-type format and you can guess the bird's name or fill it all in with "snapshots" (each bird you click uses one shot). Sometimes, while looking for the bird, you forget to look for the letter. Or you just see an edge of it. You get higher points for clicking more accurately on the bird and for solving the puzzle earlier.
Or there's the penguin maze puzzle, which I found really hard. You are racing another penguin through a maze to catch a fish (it seems nice that the other penguin moves so slowly except when he beats you and you feel very stupid) - using the arrows on your computer to direct your little penguin. The trick? The maze rotates and you have to remember the orientation of the penguin with relation to the arrow on screen to use your arrow keys successfully. I got completely confused and couldn't make my mind figure it out, no matter how hard I tried. But the penguin is cute when it catches the fish and oh so sad when it loses it so I'll be back and try again.
Math is done with raindrops...each drop has a puzzle in it and you must solve it before it adds to the pond. Sundrops come along that evaporate all the raindrops. This one I'm sure I will get after more practice - it seems when I don't do math regularly, I really forget sums and etc.
After each puzzle you are given a rating, and if you fill out your profile, you can be compared to others your age. It was quite terrifying today for me - I was only in the 38th%tile or so overall. The program rates you on several parameters, so it's easy to see where you might need more practice.
After the 7 day free trial, signup is around $10 a month or less if you subscribe for a year or more. They add new puzzles all the time and the site is backed by research.
I'm hooked. I'll keep up for the next 7 days and if it continues to be as interesting, challenging, and fun as today was (I could feel my brain aching!), I'm going to sign up.
But for now, I am taking my aching body and mind for a rest.

September 11, 2009

A wee chat about suicide, for World Suicide Prevention Day

Such an ugly ugly word.
Such a sad thing, for the person, the family, the friends, the world.
MS and suicide are rather closely tied. It all starts with the underdiagnosed depression in MS patients - often no one even enquires, or figures people with MS are just adjusting to a chronic disease and thus a bit blue.
Why does depression occur in MS? The official answer is that no one knows, since we aren't really sure why depression occurs in anyone. Some hypothesize that it is due to brain changes caused by the disease, changes in neurotransmitters or conduction of impulses, damage done by lesions in the brain. Some think it is adjustment. Others, including me, think it is a combination of the above plus the loss of control MS presents to you. MS is unpredictable, unreliable, teases you on by making you feel well, then knocks you flat. It steals little bits from you at unexpected moments - sensation during an embrace, strength during a walk, ability to talk during a presentation, ability to taste during a luscious dinner.
Some hypothesize that MS patients commit suicide more frequently because it represents a taking control over a disease process over which they have no control. I know when I was first diagnosed, I researched ways to commit suicide. I made my plan, a "just in case" plan, in case I ever needed it. I had to do this to give me that feeling of control. I make sure I always have the means available, although I will likely never do it. I just need to know that I can.
According to Feinstein's research (2002), almost 30% of MS patients harbor suicidal intent over the course of their illness. Sadovnik et al (click on title for source) found that 15% of all deaths in a MS clinic population were due to suicide - a two-fold rate of suicide compared to the general population .
Risk factors include alcohol abuse, social isolation, and unemployment. Many people with MS start to isolate themselves, because of their inability to get around, their fear of incontinent episodes, their fear of mental lapses. A goodly proportion give up work because of the overwhelming fatigue associated with the illness. This both leads to financial problems and more isolation.
It's no wonder alcohol abuse seems like a good idea...
People with most chronic diseases benefit from continuing involvement with life and with a continuing purpose. I think it is something for the health care system to think about - how to keep people involved, how to allow the patient control over their health and conditions, how to point them towards the right place for support and involvement. Often the "system" is all about taking control, wresting it from the patient, putting it in the hands of the expert. Maybe it is time to reevaluate this...
The rate of suicide in MS is highest in the first year of diagnosis, often before true disability sets in. Perhaps this is where it is most important to offer help. I know I was diagnosed and left hanging for six months with no one but my wonderful drug company nurse to keep my soul together. I don't think this is right. I think we should focus intense intervention for people newly diagnosed to get them settled on a good path to managing the disease, and with this perhaps prevent the carnage of suicide. What do you think?
In the meantime, perhaps everyone should look about you and see who might be in the most need of support, ill or not, and reach out. Suicide can be prevented. But we have to talk about it first.

September 10, 2009

Aiming for health

Before I moved, I purchased this exercise game for the Wii my youngest son generously left for me when he took off for places unknown. I finally tested it today. On lowest intensity, and with a half hour workout, I was sweating freely and it felt glorious! Kick boxing was wicked fun, and even the running was amusing, although I had some problems with the leg strap (I believe it is used to people with longer and or skinnier legs).
So I've started the 30 day challenge. Each day, more exercises. Different exercises.
The game gives you instant feedback, demonstrates the exercises effectively, and saves everything to adjust your next days' workout. I can't wait to see what it will have for me tomorrow!
Best thing? No weird looking coaches like the bluish ones in the Wii Fit program that gesture at you with gently swinging arms. I do still like Wii Fit's strength and yoga exercises, though.
Also, unlike Wii Fit, Sports Active doesn't make your body look exactly like yours does in reality - I come off as rounded but not spherical which is better than my tiny donut Mii from Wii Fit.
Much fun - highly recommended and I'll let you know how I get on, MS et al, with this tool. Apparently they are coming out with an expansion pack of new exercises soon, but I think this main program will keep me busy for some time. AND I can exercise scantily clad and gasp in the privacy of my own home...

September 4, 2009

Sleep, glorious sleep....

The MS fatigue is unusual. It makes me believe that Epstein-Barr virus is a cause, because when it hits it is like having mono all over again. It is total, blinding, encapsulating. I shopped yesterday, but was totally unaware of my surroundings, like walking through fog. I ate yesterday, but tasted nothing. I spoke, but made no sense. I moved, but have no body recall. I could not see through the greyness around my eyes. It is really quite a dangerous state, as I am only halfway present, and probably prone to walking into speeding cars, putting my hand on burning elements, etc.
I am, quite frankly, not all there.
Yesterday was stellar. So murky, I felt wraithlike, except for the pain. Which accompanies the fatigue. Probably a good thing, as it makes me less likely to move, thus keeping me from speeding cars, etc., above.
The day passed. I did some things. I don't know what. And I slept, a deep sinking sleep, drowning in unconsciousness, hours passing without note. I slept all afternoon, all evening, and until 9:30 this morning.
The pain is mostly gone.
But I could sleep.....
Dang. I was doing so well. So I did my usual thing - I overcommitted and did too much. When I feel good, I forget I have limitations. It's a good thing as when I don't forget them, I feel a wee bit despairing.
There is really no predicting when the fatigue is going to hit, except that the day before it hits I get a zinging feeling through my body, a jangling of nerves that makes me feel overcaffeinated, slightly disconnected, twitchy. Resting then won't keep it away, but at least I can better prepare for it.
It's adjusting to it every time that is so heartbreaking. My mind refuses to accept that everything, everything, has changed.
On the positive side, it also has its joys. Today, I woke up pain free. There is nothing to compare with the joy of that respite.

September 1, 2009

wanting it all, paying for it...

My last posting was all about wanting more - well, today the bill came in. I've been having fun, pushing the fatigue envelope, doing things when I know I should just loll about and gaze into the middle distance, but was capped with a 1.5 hour wait for my bus pass. I had lovely chats with the others waiting in line and had just reached the front when a woman walked up with a cane and cut right in line. She was served, and when the other people near me became incensed, the transport people said "Anytime someone tells us they are disabled, we have to give them services before everyone else". Now I didn't begrudge the woman her access, despite my total weariness, but I felt like the guys in the "I coulda had a V-8" commercials - instead of standing forever, I could have waltzed to the front of the line and been served an hour earlier.
Pride goeth before the fatigue. Next time I'll bring my cane and take my rightful place at the head of the line. Now, I get to pay for this latest folly with overwhelming tiredness. It was already bad yesterday - I am back to skipping meals in exchange for sleeping - crashing into toxically heavy naps at odd moments...
But perhaps tomorrow I will be better. I want to be, because I have plans for tomorrow I don't want to break....

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......

July 30, 2009


"I'm trapped in a self-activating engine that evolves and seeks decay." Sabri Hakim
Well, aren't we all, really?
I'm plotting my evolution over the next while after I move to the big city, where opportunities abound for physical exercise, arts, pottery, jewelry making, mind expansion...while recognizing the way my body is seeking decay.
Can I sign up for cross-country skiing lessons now, in the summer, not knowing how I will be in January, if I will be able to walk, let alone ski in January?
Today, walking home, my right foot tripped me several times on the uneven pavement. One time I nearly tipped forward into a fall, even with my cane. How fast the decay? I don't know.
Can I sign up for hand building pottery, or will my hands be too weak to press the clay into shape? Will they spasm with pain after each session, or will it strengthen them? I don't have any idea.
Can I not sign up for these things and concede defeat? I don't think so. I hate being defeated.

I think, as always, I'll plunge forward, grabbing life with both hands, pulling on it hard and hoping I can hang on.
I'll sign up and activate myself, lest I perish in an explosion of boredom and self-pity.
But I'll know that I may not be able to hang on, for all that I want to. Sometimes, despite myself, the grip fails, and things drop to the floor.
It's not defeat, really. It's just winning the alternative. Right?