Chronic Illness Doubled

I'm learning that dealing with my own chronic illness and disability is vastly different from watching someone I love deal with their own chronic illness and disability. Daniel never recovered from COVID. He's going through his own experience of tests and referrals as he tries to get a diagnosis. I accept what I have gone/am going/will have to go through, but accepting that for him is much more difficult.

I want him to be healthy, happy, and able to do everything he wants. I want him to be able to work if he wants to, and selfishly I want him to be able to care for me. What if he gets worse and I can't take care of him? I worry about what will happen if we're both too sick to care for ourselves and each other.

We're currently both pushing ourselves more than we should. On days when he's struggling I try to do more and help him. But he still pushes himself to take care of me. That has resulted in both of us in a push/crash cycle. We know it's not good for us, but we don't have an alternative.

We're still learning to navigate the system to get help individually. I don't even know how to begin looking for help when we're both incapacitated. It's tricky because we don't have static illnesses. Our needs change day by day, and we have days when we don't need or want any help. I'm not even sure what kind of help exists yet.

I've always said that everyone should prepare for the possibility of disability and the (hopeful) inevitability of aging. But I foolishly thought one of us would stay healthy, at least until we were older. My message now is a more general, "prepare for the worst." You can still hope for the best. I'm still hopeful, but I'm also realistic.