On those rare times I’m able to be out of the house, the desire to stay out can be intense. I have to fight against it and not let myself get swept away with the ball of adrenaline and joy.
There’s an element of “I’m going to suffer for this anyway, so I may as well go all out!” But there are/can be variations to PEM and the lesser version is more bearable.
On the rare times I leave the house, I am nearly always tempted to “just do X Y and then Z whilst I’m already out”. It becomes very much a “let’s make the most of it” situation. But that is not a sustainable way to go about a life with M.E. in it. Sure I’ve done it, and I’ll do it again. But as a rule it has to be a No. I have to override the urge to keep gallivanting while I’m already out. I need to quit while I’m ahead, get home, and wait for the PEM to come.
Living with M.E. is hard and restrictive, and even when there is the freedom to leave the house, that sense freedom comes with a timer attached to it. And we haven’t even started on the physical consequences one is dealt for daring to live a little.
'M.E. myself and I' by Anna Redshaw 