Hello Readers:
I was reminded this week about the importance of the phrase “how are you.” More importantly, I was reminded about how important it is to want and expect a truthful answer. Too often, I think all of us are expecting everyone we ask to answer “fine” or “good.” We don’t want to hear about the stress and anxiety weighing them down. We don’t want to know about what is making them worry about getting through the day.
For someone with a chronic pain problem, this is especially challenging. We learn how to say “I’m good” every time someone asks, even if we are hurting more than we can handle.
For the last few months, my pain has gotten much worse than it ever has been. My doctors have really been struggling to find solutions for me. While I know some in this community have a penchant for complaints about doctors, my pain management team is honestly a wonderful team of healthcare providers and I can’t imagine a better group of people to manage my life. Despite that, though, my body is putting up a fight. It isn’t handling everything I’m throwing at it. I’m having to limit activity more than I’d like and say “no” when all I want to do is say “yes.”
I’m not here to offer you medical advice, because you all have doctors for that. What I’m here to do is offer you some advice for facing the reality of that situation. I had a procedure last week that didn’t work. Since then, I’ve been in what I would consider the worst pain of my life–at least a 9 every minute of the day. Today, after 7 hours at work, I couldn’t even move it hurt so badly. Because I have always been a hard worker who never likes to admit I need a break, I waited until the pain got THAT BAD before I came home. I’ve also been steadily working on my graduate degree part-time for about two years while working full-time and serving on the city council in my community. This semester, with all the pain, I didn’t think I could handle attending school.
In both cases, I have needed people around me to reassure me I’m not a failure for needing the breaks. As I’m writing these words to you, I’m on my couch in immense pain watching another documentary on Netflix while I choke back tears–and I want you know right now, on those bad pain days, when you need those breaks, you are not a failure. If you need someone to tell you that, I hope you bookmark this post and read it over and over again. You are not the summation of the days your body needed a break. You are a summation of the days that your body needed a break but you are still LIVING.
So, here are my bits of non-medical advice for bad pain days:
- Coloring books: I never tire of coloring. We keep a ton of them in our apartment to make the hardest days better. We keep a binder of my completed artwork just like a proud kid. It relaxes me and distracts me from the pain. It’s also productive and helpful.
- Comfortable clothes: On a bad pain day, I’m always in comfortable clothes. I could probably live in yoga pants if I wouldn’t look so silly at a city council meeting in them. I also like to wear clothes that bring me joy. I try not to underestimate how much joy helps on these days. One example is–I’m a huge Taylor Swift fan so on a bad pain day, I’ll wear a Taylor Swift t-shirt that makes me smile.
- Binge Watching: I’m only half-joking when I use the word “binge” here. We all know activity is good, but on a day when the pain is too bad, rest is good, too. When you’re having a rest day, never underestimate the value of a good streaming service–even for some bad television. I am personally endlessly fascinated by documentaries. I have seen documentaries on so many topics, I couldn’t even begin to tell you. I love learning and it helps me feel comfort to be learning while I’m resting. But…I also like binge watching reality television. Both are equally valid.
- Fur Babies: My dog, Essex, is a prescribed emotional support animal and she gives the best cuddles in the world. If you have a pet, you shouldn’t undervalue their presence when you don’t feel well. Essex isn’t quite a year old, so she’s still pretty naughty, but when I’m in a lot of pain, she seems to know and she will cuddle up with me and try to make me better. I just adore the time I get with her.
Just One of my Pain Day Recommendations–Fur Baby Cuddles (Essex, 11 Month Old Papillon)
- Writing: Even if you aren’t like me and don’t want to share with the world, journaling is a great way to release how you’re feeling. You may not be able to make your pain go away, but releasing how your feel emotionally about that pain is always a good idea. I regularly journal and doodle my thoughts about what I’m going through. I recommend getting a pretty journal that you enjoy and just writing down what you’re thinking somewhere you don’t feel any judgment.
- FIND SOMEONE TO TALK TO: This is probably the most important thing. No matter who you are, we all need people sometimes. You don’t need to feel bad for needing someone to talk to. If you’re reading this and you need someone to talk to, I’m happy to be that person for you. Find a friend, family, someone in a support group–really anyone–you can turn to without hesitation. I can’t even tell you how often I turn to the people in my life. I made a dear friend in Whitewater, Lisa, and even though she doesn’t have EDS, she has such tremendous compassion for my experiences. On the days when it’s the worst, I know I can turn to her when I just want to cry and release how I’m feeling. I never feel like I’m whining and I never worry that she’s going to judge me. We all deserve that level of person in our life.
If and when you have this kind of day, I’m sorry. Today is that kind of day for me. Someone asked me “how are you” today and I told the truth. She told me to go home from work. I listened.
It was for my own good.
You need to do what’s best for you, too.
Gentle zebra hugs always,
Stephanie