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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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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Asking for Help Can Be More Difficult than the Pain Itself

After going through two long bouts with severe injuries resulting in long-term pain, I realize I’m still uncomfortable asking for help.  Only when I began opening up to friends and colleagues over the past year did people begin offering to bring me food or help with my daughter and I honestly didn’t know how to respond.  Finally I finally started allowing friends to bring me food now and then, and to help me with my daughter.  But every day life is still a real challenge for us, so I think I’ve identified at least one easy way friends can help – even from a distance.

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Strength in Numbers

Over the past few weeks since I’ve begun sharing my story of chronic pain on this blog, via its companion Twitter feed, through Facebook and just in general, I’ve learned two things: 1) I’m not alone – not by a long shot, and 2) by sharing, I’m helping others to bring out what they’re going through as well. During this short time, several friends have come to me with their own stories of pain, and four have started blogging about it.

I’m engulfed by sadness for those who toil daily with similar agonies, but I’m also overwhelmed with a positive feeling that by communicating about what we’re going through, perhaps we can help each other heal and help reduce the general stigma that surrounds people who live in pain. John F. Kennedy, one of the most revered leaders in modern history, suffered in severe chronic pain for years, yet he had to cover it up in order for the public to have confidence in his presidency. We can all gather strength from each other and our experiences.

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My First Mommy Blog

It seems a bit silly that after blogging for 7 years and starting over a dozen blogs that this is my first official mommy blog, but so it goes…

Now that I’ve gotten going with this blog, I just want all of my mom blogger friends to know I do want to link to you – I just don’t have all of your site URLs with me while traveling, and the computer I’m on is difficult to use to research these things.

So if you want to help me out by adding your blogs in the comments here, I’ll add them to the blogroll as soon as I get a chance.  There’s not much there now, but I expect it to be a valuable resource once it’s completed.

And please… if you’re willing, put up a link to this blog somewhere. It’s important to raise awareness about chronic pain, pelvic pain, and what it’s like to be a mom in pain.  We have a long way to go before there’s true job flexibility and equity for people who are disabled for whatever reason, and pain counts there as well.

Toast

It’s all about toast.  I really love toast. In college, my cinnamon & sugar toast became so famous that I actually was teaching friends of friends how to make it just right.  (That was about the extent of my cooking skills anyway.)  Toast has also become a theme in my management of pain the past four years because it’s an easy way to explain the good days vs. the bad. On the good days, I can stay standing next to the toaster, doing other things in the kitchen while my bread toasts.  On the bad days, the pain is so severe that it hurts too much to even stay standing long enough to toast the bread.  That’s about 4-5 minutes.

This pain began with early bed rest in my first – and only – pregnancy.  I started bleeding a few days into the pregnancy and was having a lot of abdominal pain.  The doctor advised me to take it easy and my husband had to keep reminding me that in 80% of cases, early bleeding was not an indicator of miscarriage.  So I rested.  Over the next few weeks, the embryo developed just fine and we could see the little pulsating blob on the ultrasound, which we named Dot.  Still, the first trimester kicked my a** and I was exhausted all the time, I couldn’t focus well, and I was in a lot of pain as the ligaments stretched (and it’s possible the stretching of my nerves in the pelvic area began here as well.)

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