When the Unknowns are Worse than the Pain

There’s a high emotional cost that comes with a life of chronic pain. It presents itself in a variety of ways. One of — if not my least favorite — is the unknowns of it all. With a regular injury, illness, or stable disability, there’s a predictable pattern. With a chronic pain situation, there’s always an element of unpredictability, even if there are some predictable parts of life with pain.

Of course, you can never predict everything, even in a perfectly healthy life, but the life of a chronic pain patient is generally on the opposite end of the spectrum — much closer to total unpredictability and chaos than it is to predictable patterns. The emotional costs include the usual depression and frustration, of course, but also social costs — disappointments and lost friendships. It’s a difficult road to travel, and I still don’t know the best path to take. Often there isn’t one.

The thing I really hate is when it impacts my relationships. I’m having a good week, so I accept an invitation to go to lunch, for example. Then something happens — anything that might take my precious, excruciatingly planned lifestyle off course — and I end up in extreme pain, without sleep, at a doctor’s office, etc… and I have to cancel my plans. With other friends who live with chronic illness or injuries of any kind, this is no big deal. We generally have a full cancellation policy, with no questions asked, total friendship intact. We know what it’s like. We completely empathize. And while we’re sad we can’t meet, there’s no judging involved.

With healthy people, they often don’t understand how severe the situation really is. Even if we have to cancel for reasons seemingly unrelated to the chronic pain, it’s all related. Really, it is. If the kid gets sick or the cat gets hurt or the husband has to leave town, it all impacts the delicate balance of the pain management routine and throws it out-of-whack. So while the immediate reason for cancellation might be something else, inevitably, the end result is more pain for the person in the trenches. For me, simple things like sitting at a lunch or driving, have become akin to a nemesis. So adding that kind of torture on top of whatever else is going on in my life, if something goes wrong, is literally adding insult to injury.

Once the unknown is known, there’s an immediate period of anger and frustration. NOT AGAIN. NOT NOW. What will the consequences be? Will I lose a friendship or a professional opportunity out of this? Will my depression settle in for a week? a month? How long will it take me to get back to a stable place? Will I ever be able to reschedule this thing? Or renew this opportunity? I’ve lost more professional opportunities and friendships from having to miss meetings than I can count. The unknowns rule my life.

But what is the alternative? You’re damned if you do, damned if you don’t. If you say you can meet someone, and you don’t, you’re in a bad place. If you don’t meet with them, you lose out as well. So you’re better off trying… at least that’s the way I see it most of the time. Most of the time, I try to not plan anything I don’t have a 75% chance of making it to, although I can get clouded on that when it’s something I really want to do, but it’s a challenge. I’ll signup for more things based on my own hopes. But then again, the alternative would be giving up. And I can’t do that.

So the reality is I will lose opportunities, for personal and career pursuits. I’ll never be okay with it, but I can try to accept that it’s a part of life with pain, as long as I don’t sink too far into the abyss with the unknown.

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Tired.

I’m tired of being in pain.

I’m tired of pretending not to be in pain so others will feel more at ease.

I’m tired of explaining why I’m in pain.

I’m tired of explaining how pain works.

I’m tired of not being able to sit without pain.

I’m tired of having to do physical therapy & take meds & use ice in order to sleep.

I’m tired of taking precious time out of my day to deal with any of this.

I’m tired of people saying they feel bad for me. I don’t want sympathy. I want solutions.

I’m tired of doctors.

I’m tired of medical bureaucracy.

I’m tired of my situation being demeaned by those who don’t bother trying to understand it.

I’m tired of being depressed, because depression is the BFF of pain and they always hang out together.

I’m tired of being tired all the time, because pain is exhausting.

I’m tired of people thinking that because I can’t or shouldn’t do one particular thing that somehow it means I can’t do something else that’s totally unrelated.

I’m tired of being weak from not being able to exercise as much as I’d like.

I’m tired of thinking about pain.

I’m tired of managing pain.

I’m tired of being discriminated against because of the pain (technically classified as an invisible disability, although most people don’t understand what that means either).

I’m tired of reading stuff like this.

And I’m tired of writing about it.

Pain Management… for Ten Years

Recently, I’ve realized that the pain management I do in my life has become such second nature that I don’t even notice it most of the time… so I thought I’d make a list for others who deal with pelvic pain, back pain, tendinitis or other related pain who might want to try some of the techniques.

Here’s the list, in no particular order…

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A New Project: Summer-Long Work-Less Challenge

In the age of Lean In, particularly where I live in California where the pace seems to keep increasing along with real estate values, it can feel nearly impossible to stop and take a breather. I’ll admit that this is a first world problem. I’m very lucky I have the option to take time off. A few years ago, I didn’t have that option. Over the past decade, I’ve been on a rollercoaster that began with the severe nerve injuries from pregnancy and delivering my daughter that I’ve written about at length here and elsewhere. I had planned to take off two months before my daughter was born, two months after she was born, and then work part-time until she was school-age. That didn’t happen. Continue reading

Out-of-Shape, Into Mind

Over the past few months, something unusual happened to me. While I still suffer from ongoing pain and flares knock me flat on my back for 2-3 weeks at a time, I started pushing myself to do a little bit of exercise even in certain kinds of pain. I knew I could always stop, I took it slowly, but I knew I needed to exercise for general health. Somehow I passed a point where the pain and inflammation was so bad that exercise only made it worse. Instead, it started helping me feel a little bit better, even while still in pain.

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No Way to Win

I’m having a very difficult pain flare-up. I won’t go into detail about why in this particular post because that’s not what’s troubling me… I get pain flare-ups of different shapes & sizes every so often. It’s part of life with neuralgia. Some are more difficult than others. What I’ve learned over time, however, is that often the emotional drain on my relationships is worse than the physical pain itself. It takes a toll.

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Diagnosis: Getting Better, But It Still Sucks

That’s what my OB/GYN said at the end of an emotional but helpful annual visit. “So you’re getting better, but it still sucks.” I thought she did a pretty good job summing things up.

She was proud of the progress I’ve made over the eight and a half long years since I first began seeing her after my injury from another doctor delivering my baby. I wish she had been my doctor when I was pregnant; perhaps none of this would have happened, but we’ll never know.

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