Further update - been getting a bit stronger - got a Nintendo Switch and a Ring Fit been doing very mild exercise for ten minutes on Mondays, Wednesdays and Fridays and have noticed a significant improvement - had my first truly good day yesterday (and had some pretty good days last week). Also been trying to sleep later and get up later in sync with my natural rhythm and that's also helped. Sadly today wasn't as good but the fact I'm having the odd good day is a massive step in the right direction!
Also should be getting neuro-physio as it's been okayed by a neurologist!
Hope everyone is hanging in there!