So, what was that?

A few weeks ago, I heard disturbing news about an associate of mine. He had been living with MS for years, with no flare-ups or issues. Yeah, his life was no picnic for other reasons, but his MS was quiescent and that made me look at him enviously.

Then, just after Christmas, he woke up paralyzed on one side. No notice, no foreshadowing. It was like a climax in a story with no lead up. Stunning, and a sharp reminder about the utter unpredictability of this disease.

So today, I was well-rested, happy, feeling good. Off I went to get groceries, looking forward to replenishing my scant cupboards. I get to the store, and the buzzies overcome me. Suddenly I am having trouble doing up my coat, feel unusual, and my brain is not functioning. I start walking away from the cashier, and my legs are considering a work to rule approach to walking back to my apartment.

At two points on the way home, I almost gave up and begged for help. My legs felt as if I stood still for a moment they would never move again. Even when moving, it required messages by telegraph and then letter to them to move them forward. The messages went slower and slower, and by the time I reached my doorway, I was exhausted.

Unlike the "walking through jello" sensation that is so familiar, this was more of a loss of communication. My legs weren't just moving slowly, they weren't listening to me.

I came home, crashed into a chair, gradually recovered. A few hours later, I decided to try a work out - just a casual 40 minutes or so on the Wii Fit, mostly Yoga. The legs remain spastic, hip joints sore, rest of my body aching and stiff. I feel like those old Barbie's that had their hair on a turner thing - you could pull it out and then roll it back in. My body feels like it is in the rolling in stage - all the ligaments pulled in tight.

It's a new sensation, and not one I like.

A thoughtful dialogue on CCSVI

The MS Society of Canada has posted a series of videos from Winnipeg where neurologists and radiologists discuss testing for CCSVI, limitations of this, and concerns about the research and treatment, as well as sharing their hopes that it will prove to be at least a partial solution. I think it's a balanced presentation overall. The Q&As are interesting and looking at this with my nurses hat on, their explanations are very reasonable.

It is unreasonable to expect testing and studies on this one area (venous stenosis and expansion specifically) to be done everywhere. We already have an overtaxed health care system. I like the view of one of the neurologists that they would want to look at something different - like the progression of CCSVI idea - is it present at birth, when does it develop, is it potentially caused by the medications we use, what does Vitamin D have to do with it, etc... That makes sense, rather than just repeating the initial studies. I'm also in favour of research looking at stenting and veins - can it be done safely? Is there a better arrangement? These other studies would finish up presumably within the time that the first ones would be done and then we'd have a more holistic picture of the issue, how to treat it, what it is caused by.

In any case, the videos are interesting, the neuros are thoughtful and receptive, the radiologist raises some very interesting points. I think, if viewed without an initial negative lens, they offer much wisdom. Bravo MS Society for posting these - wish you had done so sooner!

Morosely malingering, or, How I wish there was a big sign saying I have MS

Lately, I am feeling as if I am being accused of malingering. My doc refuses to renew my medication (or forgets to), my forms are slow in getting filled out. People express amazement that I am not working, or that I find it challenging to walk, or that I frequently accomplish little all day. When I can walk without my cane, I choose to (wouldn't you?) - both for balance practice and because it hurts my arms to use it. And it's a pain. While I can still carry heavy bags of groceries home from the market, no one sees me collapse on the other side of the door, or how much it takes out of me to carry them.

No one knows of the deadly fatigue that overpowers me, sending me to sleep for hours in the afternoon, impossible to resist. No one knows of the pain I'm in almost constantly and how tiring that is to cope with. It's boring to go on about.

But it is vexing to be looked at askance.

Anyone who knows me well knows that on the days when I feel well, I am almost mad with glee, with plans, with hopes for the future. I apply for jobs, dream of a healthy life, get a bunch of things accomplished, exercise madly.

But those days are pretty rare nowadays. I look the same - perhaps more tired, a bit tubbier, but essentially unchanged. Only a trained eye can see the difference in my walk most of the time, as I struggle to keep up. Only I know of my problems with words, my need to focus on balancing.

So others expect. Even my MS clinic nurse, my medical providers - they expect me to be better.

How I wish I were.

"First things first, but not necessarily in that order." Dr. Who

It's funny how the brain works.

Got my MRI results last week. Apparently all is stable, the two black holes I have are small (the concept of any still fills me with an unnatural fear that all of my brain is going to be sucked into them - I mean, couldn't they come up with another term for these areas of permanently dead tissue?), and there is no sign of active disease in the form of glowing lesions. This is all good news. My increasing leg symptoms are due to the old lesion on my spinal column and some spinal compression located right around it (how convenient - sheesh!) and there is not much they can do about this.

Anyway, filled with so much relief that I am actually not shifted into progressive MS, I immediately started exercising like a madwoman and followed that up with a rash of job applications. Of course I still can't see when I am tired, and I tend to burst into tears when challenged, but heck, bring it on!

I feel as if my life could have meaning again.

In the cold clear light of day, it occurs to me it probably wasn't wise to apply for the full-time management position. But heck - the lure of money was intoxicating, especially after arguing with my ex over whether he had any responsibility to look after the kids now that they were over 18. We differ on this and it is at these times that I vow I will have money again, if only to help the kids out. And the job was the kind that would use all of my experiences and the wisdom I gained through working through this diagnosis. I'm much more patient now, less snarky, less prone to judge. Few things seem as momentously important as they did before, and my experience at the hands of the health care system leads me to believe there is too much that needs fixing, right down the line, for me to fix it. I've learned that your heart may be willing, but other factors may make things impossible. I've learned that bureaucracy is an output of the banality of evil, that people use it to dilute responsibility, but also to ensure that things are done according to plan, reducing the risk of abuse. (While also freezing the system dead.) I can deal with it now, having wrestled with it in the past. I am filled with the patience needed to cope with line-ups, bad meals, octopus-like paper trails, snarling service people. I've learned the value of a smile at difficult moments, a pocket with enough to share, a touch, even if you can't feel it.

Of course, I'm dreamin'.

I couldn't work full time. I am only so mellow because I can rest when I need to, organize my day according to my state of mind and body. It's hard to be reasonable when pain is shooting up your face, and your leg is dancing solos, you can't see for the fuzziness creeping in from the outside, you feel incontinence coming over you like a wave, and you can't think of words to say to save your life.

But for a mad, wild, free moment after hearing about my MRI, I pretended it would all go away. I like these journeys into a fantasy world with no MS. It's like when I heard about CCSVI, and thought briefly, fleetingly, about being healthy again, and what that would mean. At both times, I became almost irrational in my hope. Now, as my legs jump about more and more, and as it becomes apparent that CCSVI may not "liberate" MS Sufferers as well as they hoped, rationality eases over my brain.

It's funny, but I can still write, like today, when my mouth is not working. Perhaps that's a sign.

Tightening circles

I am afraid, yes, as my friend Paula and I used to say to one another.

MS is sneaky. It makes you feel "almost normal from behind", another favourite family expression. I think I am the same as I ever was. But I'm not, and I find that inescapably hard.

No, it's not the physical symptoms. Of all the things I miss, it's the mind I miss the most...

Just had a lengthy talk with my ex, a man who knew me (as much as he was capable of) for the last 26 years. He tells me I've changed, that I am emotionally swinging back and forth on a rollercoaster, up and down, unpredictably so. He tells me I am not the same, should not trust myself in public, should warn those who deal with me that unexpected things may happen.

Normally, I'd tell him to get stuffed (I mean, my reactions to an ex are often different than they would be to another person), but he makes a good point. Before I left my job, I knew I had to leave - I was weeping uncontrollably, high as a kite one minute, low as a turtle's underbelly the next. I felt bipolar. It was the fatigue and the lesions seem to be in my mood area, perhaps.

I'm still the same - even his slight criticism of me has made me weepy. Why? Because I was offered the chance to do something interesting, and although I realized it was probably too much to take on, I was talked into a smaller role. Thinking about it now, I know I won't be able to handle it if I am challenged, which I probably will be. My memory losses are legion. Presenting is a terrifying thought, keeping track of conversations is impossible. I can focus for one to 15 minutes - but an entire half day? And remember things? In a crowd of 40 people with opinions of their own? And all the noise?

And imagine if I should break down and cry? I would DIE of embarrassment.

So I'm sad, because I realize I can't do this interesting thing. My circles of operation tighten around me. I feel my MS pants tightening around my body, making it harder to breathe.

It's a grief process every time, because I play with the idea that I can be somebody and then realize that that's all in the past. Now I will be a somebody, but a smaller one, more peripheral, girded about by my MS cerebral hug. Or is that a smothering?

Feeling the need to get drunk....;-) thus killing even more brain cells!

Fortunately I've lined up a helper who may be able to help me redefine myself. I just hope like hell she doesn't tell me to just think positive and do these things. I am too self-aware to do this, amongst my former colleagues. I still have a bit of my pride....