That sucks in terms of proving disability in your country (you would be eligible already in mine but since disability here is only half of minimum wage it's not really the solution like it is where you are).
But it's really fantastic that you are able to do so much!! That's way better. You're going to be able to work from home lying down. Lots of cool ideas in here.
I think you should still apply for disability every year. Maybe find a support group or organisation for people with broken necks/spinal injuries, they might know some aspects of the process.
Good luck to you. I know what it's like to lose everything, and I really hope you are able to rebuild some kind of life for yourself.
I can't even imagine having to go below 0° C with this illness. I think the body must use up a lot of energy trying to keep warm because like you, being cold crashes me.
Getting too hot is awful though, I end up with heatstroke.
Temperature is a big issue for me and it worsening like that is usually a sign my body is under more strain (overdoing it, fighting off a random virus, too much PEM).
Issues regulating our core temp are not unusual for me/cfs.
I'm worried for you in the summer too. It's just been summer here and I do things like fill a squirt bottle with icy water and spray it over myself. Can you get some fans?
A CPET is a cardiopulmonary exercise test. The 2 day CPET is when you get the test and then get it again 24 hours later.
People with me/cfs have different results than sedentary controls, so it's a good way of helping prove disability.
If you didn't know what ME/CFS is (myalgic encephalomyelitis) then you haven't been diagnosed with it and none of this applies to you, but I thought it was worth mentioning in case you had.