Living with a Rare Bone Disease: Seeking Advice

I'm in a similar boat with a rare heart problem, on top of several other things. It's truly exhausting, these days my SOUL feels tired. my advice: sleep when you're tired, eat when you're hungry, and do whatever you can to feel any semblance of physical comfort. buy a lot of pillows. keep your favorite drink stocked in the kitchen. splurge a little on something forp a hobby. when the big picture sucks ass with no hope of improvement any time soon, the little things are that much more important for you to focus on

I am so sorry. Gosh. I have a lot going on myself too. I am finally going to Mayo Clinic in Jacksonville Florida on Monday June 6th for an overhaul from a team of Dr's. They then send all their recommendations back to my Dr's telling them what they would and wouldn't do different. You may look into something like this.