I’ve been living with chronic pain for going on 4 years, with increasing severity up until December 2018 when I began receiving consistent treatment. I will likely have to maintain some sort of pain management regimen for the rest of my life. That’s a hard pill to swallow, but I’ve been extremely lucky to have so many supportive people in my life and doctors who are more dedicated to care than to getting me in and out, regardless of improvement or lack thereof. Still, it has had a significant impact on the way I live my life.
At first, my quality of life went down the drain. I was running on empty, burning myself out, trying to “rest” like I thought I was supposed to without actually embracing rest for what it is. Then, as I got treatment and learned to work with my illness and its limits instead of trying to barrel through them, my quality of life rose. Treating my pain less like an enemy, and more like something I just had to learn to live with, made it easier to take care of my body and listen when the pain is milder to avoid daily flares. Quality of life looks really different with chronic pain than without, but it’s still possible to live a life worth loving.
Some of the simplest things are some of the hardest. Listen to your body. Feed it what it says it needs, when it says it needs it. Take the time to sit or lay down and rest when you feel more severe symptoms. I felt like the “listen to your body” spiel we use when potty training toddlers was constantly running through my head. Lightning bolt of pain down my leg? Stop, wait a bit, let it rest and see what happens. Nauseous for 5 hours then famished the 6th? Okay, that’s fine, what’s in the fridge or available to eat right now. Felt pretty good yesterday but dying today? Get that heat pad going and gather reading materials, time for a slower day.
Because I started paying attention to what my body needed, before it reached a fever pitch, I got better at noticing patterns and figuring out how to make things work. I still can’t predict a flare with 100% accuracy, and probably never will, but I’m more aware of the triggers. Going to walk a couple miles at a family activity? Awesome, sounds fun! I’m going to stay off my feet the day before and not make any commitments the day after. Party we want to go to coming up, so excited, I’m going to make note of all comfortable seating when we get there, and plan out my meds to avoid them wearing off right in the middle. It’s far from a perfect system, but it makes it easier for me to still engage in activities that are important to me.
Another really important part is building relationships with people who get it. There is a special kind of magic to being understood, and having a spoonie friend who has actually been there. Even if they don’t have a chronic illness themselves, it’s great to have friendships and connections with people who understand and respect your limitations. Some people just won’t get it, either because they don’t believe your disability exists or because they can’t wrap their mind around the “chronic” part, and that’s okay. It’s not your job to convince them. It is, however, really helpful to find people who you don’t feel like you have to convince. Good things to look for include people who are accepting of changes to plans to be more accessible (i.e. closer to your home, more mobility aid friendly, less physical activity), people who don’t give unsolicited medical advice at the first mention of your condition, and people who genuinely ask about your life without having to have every conversation be about pain.
Another great way to try to raise a better quality of life while living with chronic pain is pursuing minimalism. It can be a little more energy upfront, so take your time with it, but living with fewer belongings, priorities, and commitments makes it a lot easier to have space for what is loved. It’s easier to get dressed before leaving the house when almost everything matches, it all fits well, and it’s easily accessed and maintained. It’s easier to stay on top of dishes when you don’t have a gazillion to do, focusing on one-pot recipes like this one from Minimalist Baker. They are one of my favorite blogs for simple, quick, and one-pot recipes, so if you like to cook but have limited ability, be sure to check them out. Also check them out if you’re able bodied, because they’re just that awesome. The simpler, the easier, the better.
Life with chronic pain / illness / disability is hard enough. Hopefully things things make it just a little bit easier to build a life worth loving, within the bounds of your illness.