In reply

Michal asked another good question more than 1 person may wonder about.  So here's the question and answer:

Why do you say you'll never be free from precautions? You suspect that you're the "sickest" patient at this time but you seem to be stabilizing at an amazing rate. I'm not into "speed" or trying to deny serious concerns but I see growth already. 

I was exaggerating.  But it's important to also know this is a 2 steps forward, 1, 2, or 3 steps back thing.  I took a big step backwards yesterday with the (fully expected) return of the non-dangerous but still shouldn't have them thoughts of not wanting to live.  Since I have to prove that I'm stable and safe and can maintain that it just is going to be a long time before I have everything back.  Which is fine.  What happens is that between brain chemistry and illness and stress every so often my brain takes a big step backwards into wanting to shut down or die territory.  It's how getting over this works, but the last few days have been harder.  Some, a lot, of that is that talking to Dr. Mind is going to be tough tomorrow and my brain chemistry has gotten used to the answer to I'm upset being I want to die.  I have a feeling that they'll make me handle a major stressor before they feel I'm truly safe.  Because I've dealt with so much for so long without becoming the way I've been the last while it will take even more time to show I'm fairly stable again and that my brain has found a new default.

 don't you think it's possible that one day you could work part-time? It's probably way too soon to think about that but on the other hand, you might need that hope.

Working part-time and my disability insurance don't mesh.  So unless I get so well that everyone feels that I am unlikely to need disability again for many years if ever and that I'm well enough to work full-time (for income as well as benefits) I can't go back.  On SSDI you can work a little bit but I have private disability insurance that doesn't allow that.  Even if I do go back to work it is unlikely that I will try OT again.  I don't think there are any jobs that are not stressful (part of the problem with working is that we have to know I can handle stress without going backwards) but because of the shortage of OTs in this state it is pretty difficult to not wind up overdoing it.  If I were to say I can work 8 hours/week it would nearly certainly turn into more than that and I would be totally stressed about sticking to less than disability would allow because the patient needs are always so enormous.

Right now I am actually feeling better focusing on NOT going back.  I still may although the requirement to do so is pretty hefty, but right now I can't think about taking on more than this minimal life. The last few days I've not managed to leave home or go outside.  I'm tired.  I have done some cleaning/organizing and in a minute I'm going to remove sheets, blankets, allergen cover, waterproof cover and mattress top from my mattress, flip it, put all those things back on (it's memory foam and hopefully have a more comfortable bed.  But I haven't managed to push myself to even get mail because I haven't been sleeping and even that 1 part of the system is able to mess up the rest of it.  There are so many pieces to work that I find the idea overwhelming.  That's hard to admit, but at this moment that's the feeling.  I also know that if the people treating me think this is likely it truly is because they've never given up on my ability to work before and now nobody is sure where this is heading aside from not a great place.


Don't worry, I'm not upset.  I needed to think about that to clarify my current position.  I actually am probably making myself shoot lower than I hope for just to decrease the risk of being hurt if things don't work out.  It's been so long since I felt ok that it's hard to believe that will ever come again.  It's not impossible but the cost to me may remain too high.  Or not.  Mostly the plan to to prevent suicidal thinking and go from there.