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.

Today’s trouble came because I knew a flare was coming last night from too much activity lately and I didn’t sleep well, which exacerbated the problem. I spent the first part of the day trying to mitigate the pain. Then came the emotional meltdown. But it wasn’t about the pain this time… it rarely is. It’s always about what the pain has done to different aspects of my life. Today it was about what it has done to my friendships.

I am extremely fortunate to have many great friends. Really wonderful people. Many of them are also women – moms, bloggers, not necessarily mom bloggers, entrepreneurs, friends with varying health concerns of their own. They get me. And they have helped keep me sane over the years. Which was why today was so difficult.

Today I was invited to two small events hosted by two close friends, both of whom I truly adore. And the other friends invited to both small events (one was a pamper party, the other a dinner) I also adore. I was so looking forward to both events. And historically I’ve missed a lot of events hosted by friends. So I spent about an hour sobbing that I would most likely miss one or both events. It broke my heart to think about it.

The situation always goes like this: if I stay home, I can prevent my pain from getting worse, manage it somewhat, and start to feel better, but I don’t get to see my friends and I run the risk of alienating them. If I go, most likely my pain worsens, I feel miserable, and I may not act like myself, but I get to see friends and that has emotional healing value. So I ponder various pros/cons including travel time to/from events, locations, likely seating (since sitting is the primary source pf my pain), length of event, type of event, who will be there and whether they’ll understand my predicament. Usually at that point, I give up and cancel or I buck up and show up. Not this time.

This time I decided to see if I could work with my friends on a solution. This was different for me. I thought perhaps if I could get rides with friends that would diminish some driving pain. And if I could recline at the dinner when not eating, that would help too. I wanted to open up a bit and share what I really go through with my friends, but it was still hard. Because my pain is so unique and my injuries so rare… it’s very difficult for anyone to grasp. Even those who live with me don’t always understand. But the best way I can put it today was that I literally felt like I just gave birth yesterday. I was not a happy camper in the sitting department, to say the least.

I was unable to get a ride to the first event and it was farther from my home with some people I didn’t know, so I reluctantly decided to cancel that one. I knew I couldn’t just show up and lie down on the floor like I could at the other one. In theory anyway. I hated making that decision, but I knew I really couldn’t make it through it, even if it was only ten people. My friend understood, but it still made me sad. I didn’t want to let her down, and that made me feel like I let me down too.

The second commitment, a dinner, was closer to home and I was able to get a ride and there was a couch I could recline on. There were only 4 of us and I warned everybody I wasn’t going to be able to sit much. I downed my pain meds and left. It was more sitting than I expected, going straight from the car to the table, but I had my cushion and I was able to stand for some breaks and stretch and recline a bit. Not the best case pain management scenario, but I got time with three friends which was way better than none.

Was this the right decision? Hard to say. I’ve moved to a place where frustration and acceptance battle for my time, where I feel like all my decisions are risk analyses, where there’s never a clear win. Yes I had a nice evening with friends, a night off from parenting. No I did not get to rest as I should have, and I may have delayed my recovery from the flare-up a day or two. This kind usually lasts 1-2 weeks depending on how it’s managed. No I wasn’t my best self. I was tired, stressed about the unknown environment, and the pain was significant. But even so, I had some fun talking with people who matter to me in my life, each of whom have helped me in ways they may not even realize. And at least I felt like I didn’t let those friends down by canceling. Even though I may have let myself down some by not taking the best care of my body. Every day is full of trade-offs.

Today was a lesson to me that even though my pain comes with seemingly infinite sources of physical and emotional discomfort, the lessons it brings are also endless. And by sharing my challenges with others, little by little, it helps them understand me and others like me. Which is why I started this blog – to help others understand. So while there may be no way to win as an individual when you live in pain every day, I think collectively we are all better off when we share our problems, even when they’re extremely personal. It’s never easy, but most of the time it’s worth it.