Something you won’t understand unless you have an autoimmune disease, you need a plan for your plans. Let me explain, let’s say you are going on a trip somewhere for a day and walking around all day then you’ll get a hotel and spend the night.
If you have a friend or family member who has an autoimmune disease, they need a plan of escape in case things go bad. Walking around in the heat whether the sun is beating down or behind clouds, even if it’s raining, excessive activity especially right after a flare can be difficult. In my case if I’m out during the hottest part of the day my limited energy can be sucked out of me within minutes. We have to make sure we have a good solid plan to go lay down and rest at the first sign of trouble or before trouble happens. Now I know this is frustrating for everyone involved, having to do extra work to make a plan that doesn’t really benefit you.
I know it seems like I’m being selfish and making the entire trip about myself, well I’ll have you know that’s not what I’m doing. I’m actually doing the opposite, I’m saying to you that I want a plan in place so that I don’t end up in the hospital and ruining the entire trip because it will then be about me. Believe me I don’t want this disease, I don’t want to ruin what’s supposed to be fun, and I don’t want to end up in a hospital for the 40 billionth time.
So next time your friend, family, or significant other needs a fail safe plan give good suggestions and help solve the issue and don’t shut them down or try to make them feel bad for being a pain.
We always mean well and we need to be accommodated, it sucks, but that’s the way it is.
A goddess who’s wishing her life wasn’t so complicated