If you dont have sleep in "some kind" of routine be it even if its getting to sleep at 5am and then waking 8 hrs or so after that every day, I dont think you can have any hope of getting things into any kind of routine due to lack of any kind of symptom consistanty. So I think treating symptoms comes first when it comes to trying to get routine and having the right activity balance for you is also very important.
My sleep routine is currently going to sleep between 1am-3am as that is when my body can do so with only taking melatonin alone (otherwise I need to take strong drugs and forcing my body into a routine it doesnt like to do). Im out of bed by 12 noon (things have improved so lately Im usually out of bed by 11am)
My routine is like currently like 2 days on then 1 or 2 days off break, then 2 days on again etc (I used to only manage 1 day straight of doing things without getting post exertional malaise but now I can manage two without causing myself to get worst
Mondays .. my boyfriend visits from 11am to about 4pm and I'll go to a medical appointments, library, sitting down having hot drink, chatting with him etc The rest of day/night is rest time.
Tuesdays.. Home support comes and I spend 2.5hrs doing things (shopping etc not all standing activities).. I actually do 3.5hrs worth of getting things done on Tuesdays (I actually time and wont allow myself to go over that in activities as otherwise I go downhill) . 3.5hrs is my new limit up from 2.5 hrs per day..
Wednesday.. complete rest day to get over monday and tuesday activities
Thursday (same as Mondays).. activities/boyfriend comes
Friday (same as Tuesdays).. home support worker (3.5hrs worth of doing things)
Sat .. complete rest day to get over thursday and Friday activities
Sun... one spare day which I use as rest. I see this as like my
healing day".. I arent resting to get over anything (which then is like catch up rest time) but just resting.. to have myself as well rested and as good as I can be. So Im at my best and feeling great when Monday comes to be doing things.
(On my complete rest days.. I do get out of bed but I dont get dressed, dont do hair, dont shower, dont do any housework... I do thou cook if Im feeling good to be doing that.. otherwise I eat the prepared meals my carer made or helped me to make on tuesdays and thursdays). This routine stops me from getting post exertional symptoms coming in the next day, as it keeps me within my current limits. Its good to have fairly severe ME but be able to stay within limits to not trigger postexertional stuff and give my body a chance to improve more with time.
With good management and better treatment. in only the past 2 weeks Ive gone from having a maximum physical activity level in 24 hr period of 2.5 hrs to 3.5 hrs and also now at times are sometimes even waking up at 8.30am!! (I didnt wake up until 10-10.30am at the earliest only a month ago.
A couple of months before that .. my activity level in 24 hrs at the most was only 1 to 1.5hrs (2 if I was very lucky) in a 24 hr period. Its a slow process but really looking after my needs Im working in the right direction and improving (before I was like stuck at a certain level, thou stable it wasnt moving forwards)