A very personal old FB post from January 2017, during the school holidays.
I hate myself if I wake up after a bad nights sleep due to the heat and pain and then snap at my son for stuff that I find annoying. It’s stuff that isn’t the end of the world and stuff that I do want to talk to him about but in a reasonable, controlled, adult manner.
I then feel very bad indeed when I see his face, full of enthusiasm for what today’s holiday day with Dad might bring, fade away into yet another face of disappointment, like all the other times I let him down due to not being physically able to do the stuff he’d really like to do.
I’ll cool down (literally), take my painkillers and the plethora of other drugs I am on, go back into his room to find that he’s tidied it up for me (I never mentioned tidying his room), made his bed, and got himself ready for the day. He comes over without looking at me and says he loves me with his arms outstretched and in unison, I am doing the same. Talk about learned behaviours….. I say I am sorry and ask how he’s going; he says it’s okay Dad and that he understands. Fuck.
Life with a chronic disease that doesn’t let up. It affects your loved ones – my actions because of it makes our relationship all mixed up, with the young teenager playing the part of the adult at times.
I hate it, hate myself for letting it do this, let’s face it, hate ME for doing it.
The disease means I can’t work so money is very tight, and neither of us is used to that. Holiday time means trying to get him to join me in free yet still enjoyable activities, but he says no. I know he see’s his peers with money. They actually have a family and go away and stuff. We stay at home, in the same tiny flat we see all year, only recently moved to, and we both detest.
He says he’s okay with everything and that all he wants is to be with me. So the activities I organise just don’t get taken up. I am sure we’d enjoy them – on the rare occasions we do them we do. But no.
With no family or friends to see it’s just the two of us. At least he has a few good mates so he can have time with his friends each day – always at their place though. Not because of me – because of this place.
I should be stronger and in control. I have many tools I can use to avoid this behaviour, to pass through the pain. There are many so much worse off than I. Exhaustion and the pain itself are no excuse. To act that way in the morning.
Come on man, get out of this gloom and do something.
(archived Facebook post – from a group page)
Reflections from almost 12 months later are now in the comments.