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.

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

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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Eight is Enough

Life’s been whizzing by the past couple of years since my daughter started grade school. I thought I would have more time, but I haven’t. The good news it has become easier to manage my pain on a daily basis. The bad news is it’s still around lingering like an irritating neighbor that just won’t leave you alone. Still, I learn new lessons about life with pelvic pain.

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Sharing Pain

I’d never wish what I’ve been going through the past six and a half years on anyone, but one of the worst things about it was feeling really alone quite often. Without my family and blogging friends, I could never have survived. Yet there was still an element missing – I had no one to talk to who had gone through the same experience. Slowly over time, I’d receive an e-mail message about once a year, thanks to this blog or other things written on the topic or through mutual friends. Then I finally decided to go hunting for a pelvic pain e-mail group and I found one, the ‘happypelvis‘ list.

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It’s been 7 months since I’ve taken Tramadol for my pain. Surviving daily off Motrin, I got into a good pattern of preventative pain medicating with it, each day to keep the pain from flaring. Last week, I had a severe episode of food poisoning that triggered new gut pain and added to too much sitting, suddenly I find myself with the worst flare-up I’ve had in months.

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From Birth to the Depths of Despair to Rebirth

Giving birth to my daughter I thought would save me from a really hellish, long, exhausting, painful and really annoying pregnancy. After spending the majority of the 9 months on bed rest, I was excited to regain my life again. Little did I know that over four years later, I’d still be in pain. Still, although it’s been a long, arduous journey, I’m beginning to feel like I’m emerging from the fog. The pain and the constant need to put my daughter first took me on a journey away from myself and into a coping pattern that I feel is beginning to break.

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Back on Track… the Slow Track

I get a lot of people asking me all the time “so are you getting better?” I’m happy to report the answer is yes, but it’s slow going. I still haven’t gotten back to where I was before the injections yet, so I expect I lost about a year of progress in that ten minute procedure last summer. But I’m back to the point where I’m able to walk a bit, get more done around the house, and I’m starting to see friends more again. This is big news for me, even though I’m still in a lot of pain. It’s manageable pain and I can make it to work meetings and appointments with my cushion and pain meds. That’s progress.

(Photo from the office of my new physical therapist.)

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All I Want for Christmas is a Pain-Free Life

The holiday season has become an uncomfortable time of year for me since my daughter’s birth. She was due on Christmas and then came two weeks late, along with all of the complications. Now each year as this time approaches, along with her birthday, I’m always reminded about how awful the past four years have been and how far I still have to go in my recovery.

I was making some progress this time last year, and last summer I felt some hope. But then I made a decision to try and bump my recovery speed up with those awful nerve block injections that backfired and made my situation worse. Now I’m stuck with worse nerve volatility than I’ve had since maybe ever, or at least since Julia’s first year, and I’m not sure where to turn. My stomach’s torn up from medications, I’m sick of side effects, and I really hate all of these unnatural treatments. Unfortunately I may have to fight fire with fire in order to make more progress.

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