honestly for me enjoying my life came with learning my limits, as well as consistently working to push them. of course, some days i can’t even get up from my bed, but on the days wheee the pain is at least somewhat manageable, i always try to spend my spoons on stuff that i enjoy:)

I have to be honest I struggle day in and day out. I’m in pain 24/7 on pain meds as well and very depressed. I know each of us share the illness but i know each of our pain has to differ as well. I stayed positive for years but these last two have been so much harder on me. Sending you love & prayers ❤️

Lidocaine 5% to get out of a flare up and finding activities I like to do that don’t involve walking or using my feet (music, writing, etc)

Aquatic PT was really helpful for me when it came to getting stronger since there’s no impact, or even necessarily lifting anything heavy (instead you use foam dumbbells and push them into the water) and as difficult as it is, exercise and movement of any kind will really help over the years. PT was unbearable until I️ did Aquatic PT, you can do it through the YMCA and insurance should cover it. PEMF products can also help with decreasing inflammation, increasing mobility, and lessening pain. Depending on how widespread yours is, they make mats and recently came out with a device called an Oska Pulse that you can wear inside or outside of clothing throughout the day and target the affected area. Exploring new hobbies was a great way for me to deal with the loss of the hobbies I️ once enjoyed in the first few years, making pottery, learning how to play the guitar, and I️ began journaling about my pain and life in general which I️ found to be a great outlet emotionally, and have even considered trying to turn into a novel one day as each of our experiences are so different, and still so much about our condition is unknown by too many people in the medical community. Biofeedback was also immensely helpful for me, it’s kind of like playing a video game with your mind. It tracks your breathing and pulse and as you learn to calm your mind and central nervous system you can make flowers grow, or look at an ocean scene and calm the waves down, etc. As difficult as it is, try not to lose hope. My pain specialist in Hartford has won awards for medical innovation, and the pain management community is FINALLY researching and releasing new products that aren’t medication (which is essentially just a bandaid) and are instead working to rewire the brains responses to pain. The projection for a cure is 15 years away, but in that time there will only be more learned, and more things available to offer relief. Sending gentle hugs your way ❤️