Neurological disorder? Starting from scratch, what do I need to know?

Over the last few years, I have been struggling physically with chronic pain, memory issues, mobility and balance/coordination issues and more. I was eventually diagnosed with fibromyalgia and central sensitization syndrome on top of a list of other stuff. Earlier this year I started experiencing episodes where I would lose the ability to move my legs. At first it was short periods of time, the longest before I was in the ER was 45 mins. Then one day I was sitting in a kitchen chair cooking dinner and I went to get up to turn the stove off and I couldn’t stand. We ended up having to call 911 bc I couldn’t move and my wife couldn’t move me. That was last month. After about 7 hours and a full spinal MRI, I regained movement in my legs, and seeing no immediate dangers, they sent me home. Now it’s almost every day. My wife had to come rescue me from work twice this week. I can feel my legs start to get heavy and tingly about 15-20 mins which is longer than it takes to drive through our whole town, so for now I’m still working and driving.

I’d like to know what sort of things are helpful when experiencing mobility issues and chronic pain and illness? What aid have you been able to get? What have you done that’s made your life easier? What have you learned? If you have lost your ability to walk how did you deal with not going absolutely stir crazy when you couldn’t move by yourself?

I am blessed enough to have insurance that is going to help me get a wheel chair and possibly make modifications to the house, potentially could get an aid, meals for the family, and I don’t know what else. My director sent me FMLA paperwork this morning so it’s on hand when we get to that point. I have really good support and resources but I don’t know what I don’t know you know? I’m starting from scratch here and not even sure what questions to ask. If you want my opinion as the one who is actually in this body feeling and experiencing it all, it’s getting worse fast and it isn’t slowing down.

What do I need to know?