Sending support and understanding to anyone else with an awareness of how their health might impact those around them.
It can feel like quite a weight to carry.
It’s not us that is hard work though. It is our health.
To know people need a break from your health is hard because there’s very little you can do about it. You can’t just turn around and say “Okay I won’t be ill this Thursday so you won’t need to worry about me/help me”. And I don’t get a break myself. I’m too unwell to pretend to be better than I am for the sake of anyone else.
My husband and my Mum are kind of a team and I’ll go to stay with my parents’ for a “change of scene”; that also allows him to have a break and my parents some time with me. That’s where I am now.
There is so little anyone can do to alleviate my symptoms. That’s hard for any parent or spouse or loved one. So if they can help practically, I let them. It isn’t always easy, but those around me say that if that’s all they can do to help me, that I please let them do it (where I’m comfortable to.) It’s for them as much as it’s for me.
I struggle when those around me are sad over my health during periods when I am experiencing relative wellness. Partly because I don’t feel sadness myself; I feel joy and gratitude. So I can’t understand their sadness as much.
But I can understand their sadness during times like this; when the symptoms are much more gruelling, when my quality of life has lessened, when I myself am sad some days.
At the moment I feel no/little guilt for others being upset and sad over my health. At the moment I am aware that it is not my fault, that I have no let anyone down. But the guilt does come. And when it does I need to work to separate my health from my self. A task and a half when energy and cognitive function is below par.
I know there will be others who ‘get’ it. 🧡