Multiple sclerosis, Struggles, What was I thinking?

Is it just me?

I can’t decide whether I’m a victim of my own technophilia or the scrubbing-bubbles effect MS can have on the brain.

Lately, it’s logins. I have nearly four dozen of them, all told.

Two I know by heart. The rest are a confusing heap of random qwertiness that leaves me grasping at straws for the right combination, even though I created the thing in the first blasted place.

Which means I have to change certain passwords a lot because I keep forgetting them … and sometimes I write them down, but I don’t want to say what account they are tied to, so then it comes down to these sad clues I leave for myself, Memento-style, that I never seem to figure out.

Yes, for some I opt for it to remember my login info. But that’s not 100% foolproof. Take this blog —

You know you have MS if your brain fog is so bad you forget how to log into your MS blog.

It’s only more recent information I seem to have a problem with. I will probably recite my childhood phone number and street address on my deathbed. (Mom and dad, kudos on raising a child know her safety info!)

Part of me thinks it’s not really me but the information overload we all must struggle with as modern-day denizens of the digital world.

I have friends who complain of the mom-brain syndrome.

My husband forgets where he leaves his pocket stuff on a daily basis.

 

And here’s where I forget my next thought …

Gulp. Sometimes it is me.

 

Nick, Struggles

I’m positive the glass is half empty

Nick and I have a long-running debate in our house. It’s part of the oil-and-water, fire-and-ice dynamic we’ve functioned on for years.

His sunny-side-up brand of optimism strikes me as Pollyanna-ish and naive.

My glass-half-empty, pessimistic realistic approach to life grates on him.

But I might be close to winning this argument.

Hear me out. (And read this article in the New York Times about the power of negative thinking.)

Maybe sunshine and rainbows and silver linings aren’t all they are cracked up to be. I maintain that if you only think positive, you’ll be caught off guard when bad stuff does happen.

That’s not to say I dwell on the bad. But I do factor worst-case scenarios into all of my plans.

Some research is being conducted that shows positive thinking has its downsides. I’m not advocating that we swing the pendulum too far the other direction, either, although I tend to stay on the frowny-face side of the spectrum.

But positivity for the sake of it feels artificial and arbitrary, doesn’t it? Like forcing it doesn’t actually make the situation better and can distort reality to the point of ignoring serious problems. Sometimes mind doesn’t trump matter. That may sound defeatist, but I have some experience in this area.

Sometimes hot coals are stinging stones of pain.

Sometimes MS is a brooding cloud that has no silver lining.

Maybe sometimes negativity, as long as it isn’t depression, isn’t the worst thing.

I’m reading The Marriage Plot by Jeffrey Eugenides right now. Without giving too much away, there is a character who manic-depressive. He tries to explain that depression is a different beast from being depressed. I wish more people understood that.

 

Multiple sclerosis, Struggles

Not disabled enough

I’ve never much noticed whether any quizzical, judgmental glances are thrown in my general direction when I break out my placard and park in a handicapped spot.

To the casual observer, I look to be in good shape besides needing to shed like 50 (OK, 75) pounds. Most days, I display no obvious symptoms. I haven’t used my cane in months. But I use my placard nearly all the time in the summer.

So I was thrown today when a couple driving by yelled at us as Nick pulled into the spot labeled with the big blue wheelchair.

They might not have seen the placard. They did see me as I got out of the car and walked 15 feet to the door.

“That’s a handicapped spot,” the man shouted from an SUV.

Shame bloomed across my face, my ears and cheeks flush with the humiliation of being singled out.

“I know. We have a placard,” Nick replied loudly.

The woman driver also chimed in. The man kept yelling.  So did Nick.

“My wife has MS. Fuck off.”

The next 10 minutes was a hot blur. Wracked by stabbing guilt, I sat down, my rubberized legs unable to stay steady.

I thought about perception. I thought about the “but you don’t look sick” phrase that gets tossed around so often. I thought about the “look at the placard, not the person” mantra I heard recently.

And then I thought — as I have many times before — that I’m just not disabled enough.

As if there was a sliding scale. For me, there kinda is. I don’t ever want to take a spot from someone who truly needs it more than me. But how do you rank need?

I need to conserve energy. I need to stay out of the heat. Do I need the shortest distance between Point A and Point B as I can possibly get? Debatable. I suppose I could get by with doing less, running fewer errands, going out to fewer places.

But really, that’s no quality of life. So perception needs to change.

How do you respond to people who think you don’t deserve a disabled spot? How do you show the invisible?

 

 

 

Multiple sclerosis, Struggles

The hell month

I’m a month into this, my longest exacerbation since being diagnosed with multiple sclerosis in September 2010. I’ve had flare-ups, but they’ve all been quickly extinguished by either starting a round of steroids or because the disease-modifying therapy was working.

I don’t know if I explain just how life-rending these tend to be without sounding melodramatic. Every day is a fight to survive the physical onslaught and stave off a mental breakdown.

In the first week, there’s the oh-shit feeling that it’s back and you hope against hope that it’s all a figment of an anxious, overworked imagination. Then there’s the tingling, the prickly pain of a thousand needles, and the graceless limbs that go where they want and do whatever they feel like, including stabbing you in the mouth with a fork, forgetting what textures feel like, and hitting the bed, the dresser, door jambs, your face, your husband’s face, everything.

Week 2, and you start to get a handle on things a little bit, adjusting your life to accommodate this unwelcome visitor. But you soon realize it’s just getting more comfortable in your space, taking over your brain and spinal cord and hands (why won’t they just work?) and then soon arm and torso and leg and more torso again. You tell yourself DON’T PANIC, but when was the last time that worked, if ever? And doctors, well, they can’t do much, remember? There is no cure, silly. Only less-than-surefire therapies. Family and friends help but are also helpless. They have to sit by and watch you go through hell and know that they can’t pull you out of it, only make it a little more tolerable.

By the third week, you are so dazed and cranky and needy and fatigued that all you want to do is sleep (which you can’t, because of the insomnia) and rest (which doesn’t seem to improve circumstances at all). The body is still rebelling, adding night sweats, blinding headaches, swollen face and hands to an ever-growing symphony of maladies. And of course, you still try to work 50-hour weeks and keep the house clean and go for walks and function like a normal person BUT REALLY, who are you fooling? You can’t even zip up your pants or hold a spoon or walk 50 feet without needing to sit.

Week 4 (Are you still with me here? Congrats on that — it’s almost over.) The second and third treatments don’t work. You feel like you’ve lost the battle of wills and just want to give up, whatever that means. You don’t think you’ll ever be OK again. You forget what a good day was like. But you put on a brave face, go out into the world, and try to make the best of it, hoping that mind trumps matter, even though in your bones your know that everything is broken and ABSOLUTELY NOTHING changes that fact except maybe time. And then there is the nagging fear that this is permanent, or that once you survive this one, the next wave will knock you down for good because you just aren’t strong enough to endure this.

My intent is not to scare or seek pity when I write about how MS is winning right now. I hope that these posts offer others, and me when I look back at them, a glimpse at what happens when MS does take a turn for the worse. This is about processing loss, grief and maybe, ultimately, acceptance.

Thanks to all who have stuck with me this far.

Multiple sclerosis, Struggles

Oh, so this is what it feels like

I’m in the throes of a particularly nasty exacerbation, one compounded by the fact that I don’t start my steroid infusion until Monday.

So these past few days have been among the worst I’ve had with MS since being diagnosed. What started as a tiny weakening in my left leg has turned into a unilateral assault on my dominant side.

It’s taken me 5 minutes to write the above. My entire left arm feels tight and spastic, like a thousand tiny needles conspiring against me. While I can feel them, I can’t really feel what my arm is doing — it’s like Apollo falling out of  contact with Houston on re-entry.

The brain-body connection has been lost for now.

Which is a shame, because I really like to use my left hand to write, type, eat, wipe, gesture … pretty much everything involves it in some way.

So these past few days are the first time I have felt truly disabled and helpless.

It’s scary territory to find oneself in.

And disappointing to happen so soon into 2012.  Not exactly the way I wanted  to ring in the year.

Right now the doctor isn’t classifying it as a drug failure, because it appears to be an old lesion flaring up.

The  only other time I felt close to this way was when I was in the hospital. I’m not sure how to proceed. Go to work? Go about my daily activities? Go to bed where I won’t be able to sleep anyways?

Everything up to this point was more tolerable if not annoying, like MS Lite.

Steroids, as rough as they are, can’t start soon enough.

 

Multiple sclerosis, Nick, Struggles, What was I thinking?

The year that was

2011 is a year I’d rather leave in the rear-view mirror. I think the world agrees with me. We should have known things were off to an inauspicious start when blackbirds fell dead from the sky on New Year’s Eve (of course, that just happened this year, too).

The bad had a way of eclipsing the good. The disasters, setbacks, politics, struggles. Enough already.

Well, almost enough. Let’s call this the coda and then wash our hands of it all.

The year that was:

• In January, I went to a concert. That was rough.

• In February, I considered a cane upgrade. Ultimately, I stuck with the standard-issue aluminum one I got in the hospital. I haven’t had to use it all that much.
• In March, I wrote about writing about two people in the MS community, Debbie and Phil.
• In April, we walked. I got involved. When I wasn’t working or enriching my mind in front of the TV, I joined the National Multiple Sclerosis Society. I am now part of the government relations committee and a regional marketing group. As a person living with MS, I feel that my voice needs to be heard. So many times this disease can make me feel helpless. And in these groups, I feel empowered. Oh, and I had a birthday, on the 99th anniversary of the Titantic sinking. And my day went about that well, too. Hey, there are ups and downs. This was a down.
• May-July. Not worth revisiting. Still too painful.
• In August, Nick and I celebrated 10 years together as a union! The Godkers. The Walkwins?
• In September, I had a different kind of anniversary, my year with MS.
• In October, I wrote about how my new therapy was going. (Not that well.)
• In November, I wrote a whopping three posts. Yes, I’m so prolific.
• In December, Nick graduated! We closed ranks this year, which certainly had upsides and downsides. We started watching an obscene amount of Netflix. And Hulu. And then Netflix, when it got back in our good graces. We became homebodies, more out of necessity than anything else. (That whole energy conservation thing.)
So that’s it. No more dwelling.
2012 is for better things: More writing, more activism. More photos. Probably (OK, definitely) more Netflix. More laughing. A lot more of that. More dancing. More cat videos. More being me, only better.

 

Multiple sclerosis, Nick, Struggles

The need equation

I think one of the reasons Nick and I get along so famously is that we both lean on each other about the same. It certainly can’t hurt.

He brings me coffee and cleans the litterboxes and there should really be another sweet gesture in between those two.

And I … well, I make things pretty and can find stuff easily.

On a health level, he helps me with my shots, and I get him through low-blood-sugar episodes.

I know it won’t always be this way, this near-equality.

There’s this so-so movie, Love and Other Drugs, that rang true for me on a couple of levels, and particularly on this topic.

The backstory: Boy sells drugs (the legal kind). Boy meets girl. Girl has Parkinson’s. Boy falls for girl, and she him. Obstacles arise. Girl leaves boy. Boy chases after her. Cue credits over some banal, catchy music.

Her reluctance to continue the relationship is rooted in my biggest fear:

“I’m gonna need you more than you need me,” she despairs.

“That’s OK,” he says.

“It’s not fair,” she insists.

I see her point.

Sure, there are going to be times he is the stronger one. Those might be sustained.

I worry about putting so much on him, on overwhelming him with my neediness.

So far, he’s been every bit the wonderful caregiver.

But it’s not fair. Not for him, even if he’s doing this willingly.

Multiple sclerosis, Struggles

Excuses, excuses

I haven’t been posting regularly, which could be read as bad and good.

Good, because it means I have nothing to complain about, which supposes that the worst of MS has retreated for now (the remitting part of relapsing/remitting).

Bad, because of course there are topics to talk about — it’s been a busy month. I’m now government relations committee co-chair at our National Multiple Sclerosis Society and a member of the regional marketing workgroup. They are both on a volunteer basis, but I’m very invested in both, as much as my schedule allows.

I’ve also been crazy busy at work, which is nothing new.

Excuses, I know. I wonder if I have been making too many of those lately.

Like parking in a handicapped stall when I am walking fine. But I might not be after 8 hours of work.

Like making Nick run the laundry downstairs, or put away the groceries, even if I’m not overwhelmingly tired. But I could get that way pretty quickly.

Like only going 15 minutes on the exercise bike when I should do 30. But this is hard work for someone like me.

Like saying I can’t do something for the umpteen thousandth time. But I need my rest.

I wish we came equipped with a low fuel light, so I knew exactly when to start ratcheting it down. Because I tend to go until I hit that proverbial wall. And my crashes are ugly, the kind you shield your child’s eyes from. If only a little sensor could ding ding ding to tell me. I suppose there are subtle warning signs to key in on, but I’m good at ignoring those, or, more likely, treat them as small obstacles to overcome.

Yeah, fatigue always wins in the long run, so why even try to fight it? Another excuse?