Before ABI (and other injuries) I just did everything easily and lots on automatic. Being tired wasn't hard, just tired. Had NO idea what our 'fatigue' was like. Nobody does unless experienced it. Not tiredness, not fatigue, it's total collapse. Bit better now than at start when had to lie down after washing up. But still so awful. But so invisible to others because they (mostly) only see me (us?) when we're at our best, rested before = so can go out. We need to show what our days and this extreme tiredness are really like, but how?
I spent an hour this morning trying find thicker duvets and their covers. Can't regulate my temperature properly since ABI, get freezing when too tired and can't warm up (bath helps but none here) and when move get too hot. Bed has to be just right, before ABI no problem ever with all this. So found 3 duvets, all different weights, trying to guess/decide which might be right for at mo. Dithered, couldn't know or decide, ended up crying. Calmed down then chose 2 and put covers on, one light one (plus blanket/s) already on bed, now got choice of 3. But when go to bed often freezing, with hot water bottle and keep top on I warm up then shed top. How can I know which duvet? Nightmare. Then after all that and shower (too cold yesterday to have one, hate it: my sense of smell so acute I smell myself in bed if not showered/bathed) = absolutely exhausted so cried again. Every 'little' thing = such hard work, doing duvets and arms/back/buttons = hurts/hard. But try explaining this to others and they think I'm a lazy moany old cow. Only I know what a struggle every single thing is - and us here. But who else will listen, BELIEVE us and learn?