The Answer

In the past few months, I’ve made the same complaint to every health care professional I meet. I report that my range of abilities is shrinking. That I don’t feel as fantastic as I used to back when I first went on daclizumab to treat the multiple sclerosis.
Year One on daclizumab, I was inspired to stretch myself to my physical limits. I was suddenly able to swim three hours a day. I could hike for an hour at a time. Every other day, I’d be off to the gym. Once a week, I’d attend an hour and half yoga class. Year One, I discovered I could stretch pretty far.
I am now in Year Four on daclizumab. I still stretch myself to my physical limits. But I tell you, those limits are not what they once were. Hike for an hour? I’m lucky to walk a few blocks. The funny thing is, I do feel lucky. But isn’t that also perverse? Shouldn’t I feel…outraged?
These days, if I decide to go to an hour and a half yoga class, that means I am implicitly deciding to write off any further physical activity for the remainder of my day. Which would be fine if I didn’t have a family. But I do have a family. My day is also my husband’s day, is also my son’s day, is also my dog’s day. My cat could care less if I walk or not, as long as I am still able pour his food. But the rest of my family is aversely affected if I overextend. They would probably prefer it if I would under-extend.
I wouldn’t want that. I’m not dead yet.
Every day becomes an experiment. I check in with my body more or less continually. If I don’t, my body checks in with me. More and more often, my body is saying, “Enough.” More and more often, I listen. I stop what I am doing. And I agree it is enough.
Is this acceptance? Or is it complacency?
I think there’s a difference. Acceptance is wonderful. But complacency is dangerous, particularly when you have a debilitating disease. You can mistake a medication for a cure. You can think you are doing enough, and by the time you find out you’re not, it’s too late.
Lately I’ve been wondering if daclizumab is doing enough.
I will whine to the nurses, or to the neurologists, “I feel like my physical range is shrinking.” I will speculate, “Maybe I don’t have Relapsing/Remitting MS anymore. Maybe I’m slipping into Secondary Progressive.”
No one can tell me. There’s no clear line to cross. What they can tell me is this: every MRI of my brain comes back showing no new lesions. How have I responded? I’ve asked to have an MRI taken of my spine. I want the whole story, even if it doesn’t have a happy ending. I don’t want to be living a lie. I want a clear answer to the question: why I do I feel I am in a long slow decline?
A very clear answer occurred to me just this afternoon. I was downtown, picking up a new pair of glasses, which happens to be my very first pair of bifocals. These glasses are totally and completely nerdy looking. It turns out my distance vision is -11.75. And all these years I thought the vision span only went to -10. It looks like the parameters for bad vision can stretch like the debt ceiling. Maybe the parameters for physical (dis)ability will stretch that way, too. And stretch. And stretch.
In the optician’s office, I thought of an explanation for this insidious phenomenon I’ve been experiencing. I am aging. That first year on daclizumab, I was still in my thirties. I’m not in my thirties any longer. Maybe the answer could be as simple as that.

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Gratitude

This morning, my local neurologist sat me down after performing my annual exam. For the exam, she’d checked my reflexes, had me follow her fingers with my eyes, had me push against her (“you’re strong”), had me stand on one leg, then on the other, had me walk on tip-toe, walk on my heels, walk a (flawless) heel-to-toe.
She prefaced her conclusion by saying, “You might be unhappy to hear to this.” Naturally, I was all ears. “How long did you say you’ve been diagnosed with MS?”
“Sixteen years. I’ve had MS for over twenty years.”
“Over twenty years? And you can still swim laps for thirty minutes?”
But not for thirty five.”
She nodded. “Not for thirty five. Swimming laps for thirty minutes is really good for someone who has had MS for over twenty years. Maybe you don’t want to hear this, maybe you want to do better, but you are doing very well.”
I corrected her assumption. “I do want to hear that. I’m so glad I’m doing well.”
I’d reported to her, earlier, that the parameters of my abilities are shrinking. I’d wondered aloud if I was transitioning into Secondary Progressive MS. “I can’t do as much as I used to. I can’t walk as long, or as fast. Every time I push myself, the MS pushes back.”
She’d agreed with my tentative assessment. “I often see this kind of gradual decline with people who have a mild form of MS.”
There was once a time when I would have bristled at that remark. I would have resented the suggestion that my nemesis, MS, could be described as “mild.” There was nothing mild about the pain I was experiencing right there in her office, which was why I had swung my aching leg up onto her examination table and used the table as a barre to stretch.
There was a time when I wasn’t willing to believe the MS could get any worse.
I know better, now.
My neurologist sees worse cases of MS every day. At least these days she can tell her patients that there are effective medications —medications like the one I’m on—in the research pipeline. There’s much more reason for hope than there was back when I was diagnosed.
And that is why today’s post is simply a post of gratitude.
I am very grateful.
Grateful for having a fine local neurologist.
Grateful for having insurance.
Grateful for having a $15 co-pay.
Grateful for being on an effective medication.
Grateful to be receiving that medication free of charge through an NIH study.
Grateful to have friends and family who support me. (It’s not too late, by the way, to support me in the MS Walk.)
Grateful to be able to swim 30 minutes of laps.
Grateful you visited this blog.
Grateful that yesterday, somebody searched Google for “Happiness with Multiple Sclerosis” and ended up on here on Ms. Lab Rat. What a hoot!
Am I happy with Multiple Sclerosis, the disease? Nope. I can’t say that I am. I hate this disease.
But am I happy, despite Multiple Sclerosis? You bet.
I welcome all seekers of happiness, with or without Multiple Sclerosis.
Thanks for visiting.

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