I’ve been in New York City this week for work and I have gone out every single night and worked every single day. When I say I’ve “gone out” I really mean I just went to dinner and happy hour and got home around 10 p.m., but anyone who has any sort of chronic pain knows that this is pretty much the equivalent of going out to a club until 3 a.m. every night and then walking a mile to get home.
Literally me in NYC. Visuals are important.
As I was walking home from dinner tonight contemplating whether or not I wanted to go to a happy hour for the fifth night in a row, I realized that I already knew the answer. I knew that I wasn’t going to go. Because I was waiting. I was waiting for that familiar aching in my abdomen. I was waiting for the inevitable exhaustion. I was waiting for the moment when I would plug in my heating pad and turn it on high. I was waiting for the disappointment I knew I would feel at another night spent being pissed off at my body for not cooperating with my life. It seems like I’m always waiting.
I’ve been thinking about this a lot lately. I’ve been taking a new supplement — Vitex — three times a day every day for the past 30+ days and I’ve been feeling better. Even typing this freaked me out because in my mind as soon as I admit that something is actually helping me it will immediately stop. BUT, I really have been feeling better. Which, of course, only means that I’m waiting for it to stop working.
It seems like 80% of my life is just a waiting game. It’s me waiting to see how bad the pain will be. Waiting to see if I’ll have to cancel plans, or not leave bed, or consider surgery again. And it’s me waiting for the next mental breakdown over the fact that I have to live with this. I’m always freaking waiting.
So tonight, coming back to my hotel to lie down seemed like the logical choice. Because if I have learned anything from living with chronic pain, it’s that the chance that I won’t feel well is greater than the chance that I will. And I’ve never been much of a risk taker.
In a lot of ways, I sometimes feel like my life is all chronic pain with some living in between. I do my best to get through the pain days knowing that there will hopefully be a pain-free day on the other side. But once I get to that pain-free day, I’m simply waiting around again for the next bout of pain. And so on and so forth.
They say the longer you wait for something, the more you appreciate it when it gets there. But with chronic pain, when the pain-free day finally arrives… you spend most of it worrying about when the pain will come back.
It’s a worry and a wait that never leaves you, no matter how many good pain days you have in a row. Because once you know what it feels like for your body to rebel against you, you don’t forget it. And you spend most of your time trying to prevent it from happening, and worrying about when it undoubtedly will.
Normally I do my best to end these ramblings on a positive note. And I want to do the same today. But sometimes there aren’t a lot of positives to living with chronic pain. Sometimes you just feel sad. And angry. And cheated. And that’s OK. In fact, it’s OK if you feel like that a majority of the time. It’s OK to let yourself feel. It’s all part of the process. It’s all part of YOUR process.
Today I find myself waiting to feel better. Tomorrow, maybe I will too. But in the same way that I wait for bad pain days — I’ll also wait for the good. And I’ll always remember that those days exist, too.
Yes it’s so like living in another universe when you are dealing with chronic pain.
This was such an accurate representation of my life right now. After two surgeries with an endo specialist (and finding out I have adenomyosis at 23… Which explained the chronic daily pain) and after two mirena insertions (the first one expelled) the second mirena is actually working, and I’m having good days again for the first time in three years. It’s terrifying, and as you wrote instead of enjoying the good days I often stress about when this is going to fail me.
Thank you for not making me feel alone, and beautifully writing exactly how I feel.
I relate to the waiting but especially to the magical thinking surrounding every new attempt at making my body feel better. If I admit I’m doing better to anyone (myself included) will it suddenly go away? It is a bizarre way to live, but I can’t remember the other way. Sending you courage!