M34 with a 3,5 year old son. Not together anymore with the mother of my son.
Splitting up happend during the first year of our son where I was very ill, but didn't know what was going on still and she lost two close family members in that same year. Living apart was the right thing to do and was fundamental for me to figure out what was going on and to try and get back the feeling of somewhat calming down my CNS and feeling safe while "resting". As every parent knows you're somewhat "on" 24/7 in the first two years.
However now we've got to a point where I've been forced to dial back so much that I'm only able to see my son for maybe an hour each week. Sometimes two to three split over two days. And he just learned how to ride a bike without training wheels where I just picked up a wheelchair because I'm unable to walk with him while he rides without PEM crashing for four days after. Which I accept, however the part I'm having daily anxiety over is the question of "what value do I still add, and what value do I get back?".
--> And for those of you that are still together it might be the same issue but in a different way. Instead of not even being able to watch from the sidelines you're forced to watch from the sidelines or even forced to pull back and remove yourself from spending time with them to reduce stimulation, but being in the same house still.
Navigating this illness is f*ing hard as it is, however the "being a parent but not being able to be a parent" part is breaking my brain. And I feel it's not just something that can be solved with therapie. Focussing on the good part while having severe PEM after you enjoyed the time with your kid a bit too much and spend too much energy is just not possible. The neuroinflammation poisons your brain. When still in a crash on Monday you're unable to visualize the 2hr fun you had on Friday morning.