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Piles of life

Like many of my posts, I wrote the lion’s share of this one some time ago. I was inspired to polish and post it by a friend’s recent, much better post.

Let me tell you a little something you may not know about sinusitis.

I do not like sinusitis. I do not like it with a nose. I do not like it when it blows. I do not like it in my head. I do not like it lying in a bed.

It’s been one of those… oh hell, I can’t think of what to call it. “Three month stretch” doesn’t roll off the tongue the way I’d like. I’ve been negotiating a cease-fire with a series of colds/infections since November, but talks have stalled. They’re tricky bastards, I’ll give them that.

Plus, they have a superior negotiating position. Sudafed doesn’t strike fear in the heart of the common cold… or the uncommon for that matter. As far as they’re concerned, they can just sit back and let the good times roll… until my battered and bruised white blood cells finally catch up. Even then their retreat is more like leisurely packing up after a long vacation, having arranged a late check-out time with the front desk.

There’s something about being able to feel my heartbeat in my head that keeps me from tickling the keys on my MacBook. Worse, depression has taken something from me it rarely does: the desire to write. The depression has been on more than off the last couple of months. For those of you keeping track, you’ll recognize this as my latest excuse for silence – the disappearance of my words from the internets. For those of you keeping score, I’m afraid I don’t keep track anymore.

The sleep thing may play a roll too. I better not downplay its role. If you disrespect the sleep thing it’ll come back and bite you in the ass.

What is the sleep thing?

The first rule of sleep thing is you don’t talk about sleep thing.

I’m willing to risk it for you though.

It turns out my fidgety nature can be explained by a disorder. It’s not just any disorder, but a full blown syndrome. (Yep, another specialist is in business now!) It’s the syndrome with the funny name. It follows a pattern in my life. I have the stupidest sounding form of leukemia (Hairy Cell), and the syndrome least likely to be taken seriously… Restless Leg Syndrome. I feel like my IQ drops 100 points every time I say one of them.

I know what you’re thinking. “But John, you don’t have 100 points to spare. You do know it’s not possible to have an IQ less than zero, right?

Fair enough, but let’s leave the irrelevant or irreverent sidebars to the professionals, ok?

If Restless Leg Syndrome drew a picture in my mind, it would be a little boy in desperate need of a urinal.

A funny sounding syndrome is worth at least half a dozen pictures, courtesy of my imagination.

O.K., I do look like a little boy who has to pee. Laugh it up, fuzz ball.

My knees bounce so much during the day I think I’ve developed a repetitive motion injury in my foot. I can’t stand or walk for more than twenty minutes before my feet are killing me. Not long after, the pain starts to travel up my legs to my knees and eventually my hips. You should see me after I’ve soldiered through a day at an Orlando theme park (for no one but my kids). If your name isn’t Adam or Beth, it’s best you don’t talk to me. Throw in some sloth (which I’d like to explain away with a lot of things not under my control – making it something not sloth), and you’ve got a dude with little endurance and bad joints.

I get all of this thirty or so years before I can retire. That’s assuming I’ll ever get to retire, or I aspire to retire. Send this one out on the wire: John don’t mind living his whole life in government quagmire. Admit it: it’s something you admire. But enough of this, I’m beginning to tire.

I used to drive Cheryl crazy when we were first married. In fact, she’d probably tell you I was a little late with the punctuation in the last sentence (to say nothing of the verb tense). “Would you please stop shaking your foot?!?” I used to hear it all the time. I can but it takes effort. Sometimes effort and sleep don’t mix. You ever notice sometimes trying something makes it less likely you’ll do something. Sometimes I sleep in another room.

I did a sleep study and they told me I could go early if I wanted to, they had enough data. I was shaking myself out of the normal sleep cycle (without quite waking up all the way) more than once every two minutes. This wasn’t a little leg twitch. This was full body involvement.

There are folks in New England who shake less taking a dip in the pool during a winter nor’easter (assuming they’ve salted the pool, of course).

It turns out the medications used to treat depression tend to make RLS worse. But that’s o.k. because the medications they use to treat RLS make my depression worse too. So I don’t take the RLS drugs. I tried anti-convulsants but they did nothing. I tried supplements with varying degrees of success – but nothing I’d consider acceptable. I take several drugs for their off-label works of wonder, but they don’t work entirely either – or at least all night. As an added bonus, they can make you drowsy. I think every medication I take made someone drowsy during a clinical trial.

I didn’t know this before, but it turns out one of the side effects of poor sleep is also drowsiness.

Predictably, I’m a bundle of energy.

I sleep more than I should (sort of), making up for the quality with quantity. However, sometimes depression, anxiety, or the fracking sinusitis keep me awake, or yank me fully awake prematurely. The result is I’m the guy who looks like a lazy slacker, spending his lunch in the car asleep. The next thing you know, our new Tea Party Governor will be holding a press conference at my front bumper, feeling giddy with vindication – exposing the typical government employee for what he is. The anchor person for one of the local newstainment shows will come on next promising snoring at eleven.

For the last year I’ve been spending a lot of time working from home, more than I meant to when I asked my boss if I could. My concentration has been staggeringly fragile, and the cubicle farm at the “office” feeds the tension headache fairy nicely. In fact, I hear she’s put on a lot of weight recently.

I’ll bet you thought fairies always brought you good stuff.

Over the last few years I’ve done the Family Medical Leave Act drill a couple of times, more for the protection than actually taking leave – and definitely NOT for taking unpaid leave. (We proud American liberals had to work really hard to gain the right to take unpaid leave when we’re really sick or pregnant.) I often wonder if I’ve worked myself right out of folks’ respect. There was a time when I was a bit of a golden boy, the fair haired child. Now I’m the guy who can’t be troubled to stay in the office for eight hours in a day. I’ve become the guy you can’t rely on for meetings, work groups, or special projects. Occasionally I overhear conversations… folks wondering why someone who can’t work in the office can work at home.

Please excuse me for feeling sorry for myself, but a part of me mourns what feels like a terrible loss: my credibility.

Then I got sick for a few months this year.

I try to set all of it aside. “I am relatively lucky,” is my mantra. I have a job, one that accommodates my quirks. That itself is a HUGE blessing. I have a wife who puts up with me, most of the time. I have an idea what it’s like to be in her position… worse even. I grew up with my mother. I know it’s not easy. Somehow I’ve managed to help raise a special needs child to the brink of adulthood, though folks often say the brink is the most challenging part. I have a brilliant son who seems to make fast friends with almost everyone. I just wish he’d use less of his brilliance trying to manipulate his parents and playing the angles. Sometimes it feels like we’re raising the world’s best grifter.

And I have you, who ever you are. I can’t fathom why you’d ever come back, but I appreciate it more than you know. You care enough to come, time after time, subjecting yourself to this. It’s a heart warming thought.

One of my biggest fears growing up was I’d be alone. I don’t think it was an unreasonable fear – being an aloof, shy kid. Sometimes I think expectations are the biggest threat to good mental health, but in this one case I think it’s worked out quite nicely. I’m not surrounded by a throng of admirers everywhere I go. I don’t even have a lot of friends. But most importantly, I know I’m not alone. I may be a lot of things, but I’m definitely not alone.

As for the day to day, mundane things in life, I try to embrace them, to treat them like they are not mundane. I say try because I often fail. It wasn’t always like this. That’s what I cling to: memories of enjoying a chore like laundry with my kids. Not every minute can be Christmas morning opening presents, but you can find a little joy in little things done well.

As for the small problems in life, I try to keep them small. It’s an issue of perception, right?

What ever it is, I’m doing something wrong. Maybe it’s a matter of focus. I do some things right. Somethings I even do well.

I’d like to remember what it feels like to appreciate those things.