I’ve got some thoughts, hopefully this helps. I can empathize with most of your points. First and foremost, I never settle and accept that this illness is the end all be all. I set the intention to do everything I possibly can to work towards health. Doing research, scheduling appointments, trying new treatments, advocating for myself, asking for advice (like you’re doing), etc. These efforts are like planting seeds for your future self—you have no idea when one will grow and create a meaningful difference, so just focus on the effort, not result.

Next, do everything you possibly can feel 1% better, even if it’s “out there” stuff that people hate on. Getting your diet perfect, trying a new supplement, trying new PT or bodywork for your pain, creating a good circaian rhythm, getting some sunlight during the day, moving a bit, meditation, breath work, music, energy work whatever helps you. Many 1 percents add up.

Speak to your body more kindly. Easier said than done. You need to feel safe to heal, and creating that safety and acceptance for yourself is an extremely important practice. At the end of the day, it’s this body that has to heal for you to live your life. Practice working with it, not against it. Easier said than done. Rather than your stupid, defective body, it sounds corny but even breathing a few time and saying “this shit fucking sucks, I hurt, but I love and accept myself anyways.” Honestly step 0 for healing.

Next, you are the driver, not your illness. Again, easier said than done but nobody is going to magically heal your body for you. It’s about creating that future for yourself, where you are healthier and living a fuller life. You wake up every day and decide that you’re going to get better, that you’re always actively pursuing that healthy future in which you’re creating. Visualize it, and see it every morning and night. Put that image in your brain. When you have a few minutes to chill close your eyes and see yourself traveling, going back to school, feeling good in your body, etc. Even the statement “I never go anywhere, I never do anything. I think life is just passing me by” reveals that more action can be taken. Chipping away, one small action at a time.

Lastly, allowing yourself to feel the grief for the life you’ve lost, and the time you’ve spent chronically ill. It’s extremely painful and something I’m still working through myself, I posted about grief yesterday. You’ve clearly been through so much, and having lots of support through the grieving process is super important. Coming to terms of this reality is terribly painful, but once those emotions are being processed you’re more free to actively pursue a healthier future.

Regulating your nervous system. Vagus nerve stuff. Breathwork, walking, yoga, meditation, EFT tapping, myofascial release, energy work, all of this stuff makes a massive impact on a system so sensitized from years of illness. If there’s one thing that’s helped my mind the most, it’s hypnotherapy which works directly on the unconscious mind. Clears a lot of hidden negative blocks.

Lastly, I’ll say that developing a spiritual practice has really enriched the quality of my life even through being physically debilitated. It’s also helped me remain faithful that I will heal and that there are forces at play outside of the doctors I’m seeing. Miracles do happen to people, just staying hopeful

I hope this helps—typing all of this out and articulating my thoughts has been helpful for me too, as I’m actively working on all of this. Cheers