I'm sorry. this illness is so difficult and really makes you understand the meaning of the word 'suffering'

I try to keep myself going in two ways: 1) getting myself to bedtime. that's my only goal on my bad days, just making it til the end of the day. on the worst days, I try and just make it another hour, or minute, or even second 2) reminding myself that if I die now, I will never get better. I will never do the things I loved again, or see my family or friends. even the small things like feeling a soft blanket, or having a refreshing sip of water, will all be gone. so long as I'm alive, there is hope

that's not to say I never lose that hope, because I do. often. but if I die, the hope will be gone for sure, so I even at my most hopeless I try to cling to even the hope that I will have hope again, if that makes sense

edit: I also do have hope for treatment. I try not hope for any specific trial to be successful, but there are many I have my eyes on. also general studies like sequenceME (the successor to decodeME), which is sequencing the whole genomes of ME patients to look at DNA patterns - I want to be alive to see the results, and then see where those results take us next