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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

 

Hello Readers! I’m so thankful to have this opportunity to share my thoughts through this medium. I think before I get too far into blogging with EDS Wisconsin, I should tell you why you should even bother reading what I have to say (or in this case, write.)

My name is Stephanie and I am a 27 year old EDS patient who lives in southern Wisconsin. I was diagnosed just about two years ago now after nearly 13.5 years of begging doctors to explain my body to me. After my diagnosis, I turned a lot to the internet and made a lot of new friends.

More importantly, though, after my diagnosis, I began writing very candidly on my personal social media accounts about my experiences with Ehlers-Danlos Syndrome and the other medical challenges I have faced. These don’t necessarily just include my experiences with doctors and medical facilities, they also include the social challenges that come with being 27 and chronically ill. I’ve told the truth about being in too much pain to do things I want to do. I’ve acknowledged the frustration and anger that come with “not looking sick,” but feeling like you are falling apart.

Why do I do that? Well, in my life, I have two great passions: advocacy and writing. I’ve had the advocacy bug since as far back as I can remember. If I felt something was a worthwhile cause, I would pour my heart and soul into it. I’ve actively served my community through local government since I was 20 years old. I’ve learned to raise my voice for people who don’t always have a voice or maybe don’t feel comfortable using it. The writing, I think, was a gift I was given to make up for a body that I often feel fails me. I have always found great comfort in words, because even when I am in the most agonizing pain or facing a harsh reality, I can release that through language—and when I can share with the world, it can help others, too.

At the end of the day, that’s really what made me do it more than anything. After a few months of sharing very openly about what exactly I had been through with my diagnosis, a cousin reached out to me about her young daughter–a young daughter who was facing all of the challenges I faced at her age and could never, ever understand. Those same challenges made my childhood painful and haunted me even into adulthood. She was able to take her daughter to an EDS specialist who got her diagnosed RIGHT AWAY. Now she understands what makes her body different. Now she has the physical therapy exercises she needs to hopefully limit some of the damage I know happened to me because we never understood–because my doctors didn’t either, because as I cried on the track in middle school gym, I was told “everyone’s legs hurt” and when my chronic knee dislocations in high school ended in a surgery, nobody asked why that would happen to a 15-year old. That won’t happen to that little girl. If I never help anyone else by sharing my experiences, it will be worth it for her.

But I’m not a doctor and I won’t give you medical advice. I will tell you what I feel and how it affects me. I will tell you that if you are a patient, we probably share experiences. I will tell you that if you are a parent, the greatest thing you can do is fight for your child. Finally, I will tell you that if you are a healthcare provider, the greatest thing you can do is listen.

If you want to know who I am just for the fun of it outside of being a patient, because absolutely NONE of us are patients FIRST, I’m also engaged to be married this summer to a wonderful man. I have the cutest puppy in the entire world. I work with college students in apartment rentals. I serve on my city council. AND, I’m getting a graduate degree in Business Management.

Let me know what you want me to write about. I’m really here to serve YOU!

Together we are stronger!