As someone with a genetic condition (Hypermobile Ehlers-Danlos Syndrome), who lives in chronic pain and has for quite some time now, I can't tell you how many remedies people have tried to push on me.
You know how it goes. They're well meaning but have little to no idea what it's actually like to have your head screaming at you every single day no matter how many things you've already tried. So, you either say you'll try it in an attempt to appease them, or awkwardly decline.
From one chronic pain warrior to another, let me give you a few pieces of advice that might legitimately help you on this journey.
Remember, you are more than your condition
You have a whole ass personality that has nothing to do with your pain. I know it can be challenging to remember this when you're in the trenches, but it's true nonetheless.
You have so much to offer the world. Sure, you might not be able to go about things the way you wish you could, I know I can't. But that doesn't mean you give up.
I used to love to run and lift weights and was extremely physical. I can't do those things anymore. Two hip replacements stole running away, and lifting heavy weights with hEDS isn't a great idea. I get dizzy easily so doing things as physically as I used to isn't an option.
I can't ride rollercoasters anymore, or even think about snowboarding. There are so many things I can't do anymore.
How was I going to keep things interesting if I couldn't do so many of the things that made me feel like me? Well, I've taken on new hobbies. I got into digital art. I love to garden. I write, and take walks, and got into kites (who'da thought?).
Just because you can't do things you used to be able to do, doesn't mean you can't do anything, and it certainly doesn't mean your chronic pain is now the most interesting thing about you.
Accept that it sucks and yell "fuck" about it now and then
We hear all the time about the power of positive thinking, and not letting our pain run the show, but let's be real, this shit is the worst. It's okay to acknowledge how much it sucks. It's okay to curse the gods for this painful existence. It's okay to be okay a lot of the time and then melt down about it every now and again.
I'm a very positive person. I have chosen not to let my medical situation dictate my happiness. The reason I'm able to be that way is because I will also openly tell you being in pain constantly sucks. It's frustrating. I can only imagine how unstoppable I'd be without the pain. I let myself mourn when I need to mourn. However - and this is the major key - you can't pitch a tent and decide to live there.
You have to decide to embrace the suck and live your life anyway. That means showing yourself grace, accepting the pace at which you have to operate, letting yourself rest, and believing you can still have dreams and goals and actually achieve them, even if it's going to take you longer than your "healthy" counterparts.
Focus on what you can do
No one, pain or not, has ever accomplished their goals by focusing on all the shit they can't do. You can acknowledge the loss of what you can no longer do, but then you need to pick yourself up and start pinpointing the things you can do.
Sometimes you have to create new things you can do. Like I mentioned earlier, I can't be as physically active as I once was, so I needed to find new things I could do. I can still go on walks, even if I need my crutch. I can fly kites with my brother. I can write and create art that makes people happy.
It took time to figure out what I was interested in and I tried a whole lot of things before some of them stuck. But that's the key, friend - you have to commit to trying and be relentless about it.
Surround yourself with people who don't suck
Listen, this might be a tough one to swallow, but if you're surrounded by assholes, your life of chronic pain is only going to be worse.
I'm not going to pretend it's easy to be disabled and decide to leave a shitty marriage or anything like that, because it's not and that's not an experience I can speak to. But, you do have control over who your friends are and how much exposure you choose to have with toxic people (like extended family members).
If you have folks in your life who make you feel like shit more than they make you feel good, it's time to reevaluate.
You need people in your life who get it, or who can admit they don't know what it's like but accept and support you anyway. You deserve to have people like that in your life.
I've built a strong network using social media, particularly Facebook. It has allowed me to connect with folks with shared experiences, and build a community of really stellar humans.
When I decided to start selling my art, I got into doing vendor events and have found so much support and community with people who understand. I never would've found that had I not chosen to put myself out there and follow my previous tips.
Take control of who you spend your time with and make sure they're uplifting you.
Set boundaries based on your limitations
You have limitations, so honor them. We are responsible for taking care of ourselves and setting ourselves up for success. That means we need more rest, we need to know our bodies and our boundaries. It's the only way to help ourselves, and the people who love us.
I need more rest than you average bear. That means I have to remember to use my crutch and assess when I need my wheelchair. It means I need to take naps when the call comes. It means I have to plan ahead for a lot of activities in order to set myself up for success.
You know your body better than anyone else, so you need to know not only how to manage your pain, but how to communicate what you need to others. It's a lot of work. It's not fair that we have to deal with it, but we do, so let's accept it and move forward.