You were disabled and realize it is not getting better, and no one seems to be able to fix the issue. You’re stuck laying down most of the day, you have enough mobility to function at home, but anything outside of home leaves you in bad shape beyond your control where you are not professionally functional. What do you do to earn a living and survive?
This is not a hypothetical for me.
I’m not sure what the acronyms mean.
https://www.cdc.gov/me-cfs/index.html
If it is ME/CFS come over to !cfs@feddit.de.
We’re not very active but try to keep up with the state of research.
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.
I don’t have ME/CFS, but thanks for the reply. I’m kinda in a worse spot in that I was an amateur bicycle racer before I got the broken neck and back. I don’t ride like I did back then but I’m still relatively fit. My problems are related to simply holding posture. Even for a 2 day test, I think it would struggle to really show my issue. If I do anything sitting or standing for more than a few minutes I start degrading fast. I can push through the pain for quite awhile, I just get really stupid and lack attention and focus. That by itself is not the real problem. The real problem is that pushing like this will make it impossible for me to sleep much at all. The next day I will be a good bit worse than the first, but if I do it again, the cycle will continue until I shut down like a mindless zombie and I am flat out unstable after a couple of weeks without sleep.
I can ride a bike for an hour and a half but I know how to set up a road bike so that my back is completely neutral. The damage I have is super rare and from getting folded over backwards. My damage is thoracic (between the shoulder blades) almost all back injuries most people experience are in areas away from the ribs. Where mine is, it makes posture feel like lifting weights; doable but not for very long.
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.