Guilt: Chronic Pain's Ugly Little Secret

            Chronic pain plays with your head. A lot. There’s more to it than just being irritable because you hurt; CP brings with it a whole buffet of emotions, many of which we’re very canny about keeping secret.

            Guilt is one of the toughest, and it’s one of the least talked about. If you’re not careful, it’s easy to go from zero to sixty without even realizing it. An average day is interrupted by a simple request, a favor, an invitation out, and suddenly you’re spiraling mentally out of control. Here’s something else I can’t do. This is really going to upset this person. I’ve disappointed them so many times. I can’t do this simple thing for them. Add it to the stack of others. What a waste my life has become. All because of this goddamn pain. Is it ever going to get better?

            The first time I heard someone describe their own personal, pain-related guilt in these terms I was moved to tears. Not because of their situation or what they said, but simply because someone else understood.

            Whether it’s the first time you can’t finish mowing the lawn because you no longer bend that way or missing out on family game night or canceling dinner plans for the nth time, guilt will eventually strike. And when it sets up shop, it can take an effort beyond your own ability to get it out of your life. For me, guilt compounded a lot of other emotions and was one of the big issues that led me to cognitive pain therapy.

            On paper, it’s easy to understand. You feel guilty because you can’t do what you want to do (night out with friends), need to do (drive to work) or would desperately love to do (do I really need an example here?) And at first, your friends, loved ones and co-workers understand. “That’s no problem,” they say. “We’ll do it again sometime when you’re feeling better.” Well, what if I don’t ever feel better? Because that’s how it’s starting to look! How many times can a spouse, friend or boss sigh and force a smile before the guilt takes a hike? The answer is simple: it won’t leave as long as you let it stay.

            Compounded guilt is a killer. After months of not being able to work, watching my wife struggle with a job she was growing to dislike, losing the ability to do even the smallest significant household chore, and canceling plans with friends (usually at the last minute because, hey, I thought I’d feel up to it), I’d had it. I was tired of apologizing. So I stopped.

            It came down to a simple admission to myself: There are things I can’t do. I know that, and by now, everyone I know knows it, too. But in between beating myself up over all the ways I’ve let people down, I started finding new ways to contribute and new avenues to replace what pain has taken away.

            For example, I can’t stand for more than about a minute, and I can’t lift anything over a few pounds, so taking out the trash or doing laundry are out. But my wife hates doing paperwork, so I took over the bills. I used to love to grocery shop. Now I go online and have groceries delivered. Store specials usually save us the delivery fee, and we also don’t add things to the cart on a whim and can keep an eye on the running total.

            Keep canceling dates with friends? Try offering something else. If you can’t sit for two hours at dinner, suggest coffee instead. Chances are, you’ll be there longer than you expected: catching up with people is one of the best ways I know to forget about your pain (and your own problems) for a while. Scared of having a flare-up halfway through a movie? Suggest an afternoon in with a DVD instead. Remember, it’s the contact and effort you make with friends, not what you actually do, that makes the difference.

            Chronic pain makes us live inside our own heads enough; anything we can do to fight its accessory emotions is a step in the right direction. The pain may not be in your control, but what you do with it undoubtedly is.

The Cane Mutiny

For the last three-plus years, I've cripped around with an adjustable aluminum cane, standard issue for coming home from the hospital. And that's been about three years too long. I've hated this model from day one; it sounds like my late grandmother's sneaking up behind me, and it looks too...orthopedic. So now that the disability gods have smiled, I decided to break down and order something new online.

I love animals, and my first instinct was to get something with a critter-inspired handle. The options were staggering: dogs, ducks, geese, spiders, alligators, jaguars, eagles, foxes, rabbits, horses and dragons. But everything was either too metal (I kept imagining tapping on a champagne flute with it for silence at some black tie event), too classy (read "pimp cane") or too lumpy to hold comfortably. Those jaguars have some bony-ass hips.

I finally settled on two: a "denim" stained hardwood and a classy mahogany. The latter has a little brass medallion on it with my initials and a quote from my book. One for everyday, I figured, and one for evening wear. Both have contoured, ergonomic grips. And they look miles more personal than the metal model I've just ditched.

They also look like they belong to someone who's going to be stuck walking with a cane for a long, long, long time. Sigh. Well, at least I'll look good doing it.

Second verse, same as the first?

Call this the Grand Bull Moose Gold Medal Winner of Mixed Blessings (apologies to Mr. Breathed). I had a new CT scan a couple of weeks ago, and just got a detailed report. It's terrible. But that's kind of good.

Wait, what?

The three-page report goes into great depth, explaining what's messed up with each vertebrae. It turns out that in addition to my existing problems, I've developed "disk osteophyte complexes." These are essentially disk bulges that have made themselves so at home that they're becoming bone. Each one pokes a little more into the spinal column, pinching on a particular nerve, creating even more stenosis (narrowing of the spinal column) and, of course, pain.

You may well ask: Why is this good? Right now I'm gathering every piece of evidence I can to take to the good people at the Social Security Administration, who've been kind enough to hold a hearing on April 17 to listen to my lawyers and me plead my case after turning me down for coverage three times. Hopefully, this will do the trick.

Further bulletins as events warrant.

The Questions - Please read before asking any

I've been in group situations where people have asked me (or others in my situation) questions which I feel may crop up here. In an effort to avoid embarrassment and frustration on both our parts, here's a general FAQ that might be helpful.

Q: Why don't you just take some aspirin/use a heating pad/put some ice on it/buck up a little?
A: Of the 19 medications I'm currently taking, five are for pain, and two of those are narcotics (including morphine). And on some days, even those don't work. I do use heat and ice as appropriate, but they are short-term solutions. As for bucking up/toughing it out/not being such a baby about it, this is me bucking up. You should see me on the days when I'm not.

Q: 19 meds? Do you really need all those?
A: Yes, and yes.

Q: Have you had a second opinion?
A: Yes. And a third, fourth and fifth.

Q: My sister had back trouble and she tried...
A: Please don't finish your sentence. I've tried everything available to the modern chronic pain patient: surgery, medication, heat therapy, the TENS unit, physical therapy, massage, movement therapy, epidural injections, meditation. The only thing still on my list to try is acupuncture. Some of these have worked for me, some haven't. What works for one person may not for another, and vice versa.

Q: Why can't you work?
A: Chronic pain affects more than just the part(s) of the body in question. It's not like when you broke your arm or twisted your ankle. In those cases, the body is rapidly working to repair the damage, and you get over it. With chronic pain, the brain is constantly getting signals that something's wrong with the body. The "fight-or-flight" reaction that we all learned in school kicks in, but because it's not having an effect, its messages keep getting sent. The brain eventually starts allocating more cells dedicated as pain receptors, and the cycle continues. All this causes fatigue, difficulty concentrating and other effects. Think of it as trying to do your job while alternately being stalked by a madman with a loaded gun. How productive would you be? Add to this the effects of morphine and other necessary pain medications, and it doesn't make for a very good employee.

Introduction - Read first (or proceed at your own peril)

About Me

I'm a 44-year-old writer from San Diego living with chronic pain from a combination of spinal stenosis (my spinal column is too narrow for the nerves and disks to co-exist comfortably), spondylosis (degenerative osteoarthritis in my back), inflamed disks and THE INCIDENT (see below). I also have type II diabetes, hypertension, sleep apnea, and a few other issues that will be discussed here. I have had two corneal transplants, the first unsuccessful, in my left eye, because of a condition called keratoconus, which was stretching my own cornea into distortion. I'm currently on 16 different medications, four of which are to control side effects of the other 12. In addition to needing a cane to get around, I use a CPAP machine for the apnea (it blows air into my nose via a mask to keep my larynx open through the night so I don't suffocate). I am also being treated for depression and anxiety. If you can't figure out why by now, try harder.

I have a handicap placard on my car and (with legal assistance). Though I write (and therefore can work from home), the combination of chronic pain and medications to treat it make it virtually impossible for me to be a reliable employee. Therefore, I'm on SSDI. Iif you have political or philosophical disdain for this fact, I'd appreciate you moving on to another place on the web. I understand they're adding new sites every day.

I am happily married to a woman (who will be referred to here as "Mrs. Lucky"), who is my rock and the love of my life. We've been close friends since meeting in college in 1988, and married in 1998. We have two cats, Bongo and Shtinky Puddin'.

THE INCIDENT

On the morning of January 7, 2009, while home alone, I blacked out, slumped from my desk chair to the floor and had a grand mal seizure. I awoke 20 minutes later to find that the convulsions had broken both shoulders, dislocated my left shoulder and broken two bones in my back. I spent three months in the hospital and had four surgeries. My shoulders and back are now held together with dozens of screws and pins, and my spine is fused with metal plates across six vertebrae. I walk with a cane for balance and can't raise my arms above shoulder level. This is currently the dominating factor in my pain issues and affects a major portion of my life.

About My Attitude

This is not an apology, but an explanation. I don't mince words when it comes to pain, health or other matters I'll discuss here. Until fairly early after THE INCIDENT, I was one of those people who spouted the platitude "I hope you never have to go through something like this" when someone was thoughtless about anything I was dealing with. I no longer feel this way. Call me bitter, but I think it would do a lot of people a world of good to have something serious befall them or someone they know, because it's the only way some of them will ever learn empathy. We have an empathy crisis in today's culture, and I make no apologies for my responses to it.

I am NOT a hypochondriac, nor do I seek pity or attention for my conditions. I write this blog to help raise awareness about the truth of living with chronic pain, work through some of my own issues and, hopefully, offer something to people dealing with chronic pain or other conditions, be that hope, advice or just the realization that someone out there shares their problem.

I'm not a doctor or medical professional of any kind, so please don't look here for medical advice. If you find something useful in the non-medical parts, please feel free. One thing I hope to accomplish with this blog is to share what I've learned on my journey.

About the Title

If you never heard it from a grandparent or other elderly folk, this blog takes its name from a very old joke about a "MISSING DOG" poster that reads "Three legs, missing left ear, blind in one eye, tail broken. Answers to 'Lucky.'"