I have two little boys and they are growing up quickly. Over the last year or so, they started to realize that their mom isn't like all the other moms. They started realizing that their mom is sick. They notice when I need to rest. They can see when I have a migraine. They can also tell when I can't handle their shit anymore because my body feels broken and I can't focus on two things at once. They know. They know I'm not at my healthiest. They also know when I have good days. I'm fairly certain they can see when I suck it up so we can go to cool and fun stuff as a family.
I suck it up, a lot. I do. I try really hard to. Mostly because I want them to have a fun childhood. My mom was amazing but when she was ill - especially when I was younger - she didn't suck it up. We missed a lot of things because she wasn't feeling well. Much of my 12th year of life was taking care of her when she got home from work. I'd make dinner, and she'd go to sleep afterward. It sucked. I ate a lot of bacon that year.
Mmmmm...bacon....
Anyway, I never sugar coat things. I wear my emotions on my sleeve and you can see when I feel crappy. But, for my kids, I show up. I will take as much medicine as my body can handle to just show up. And I won't sugar coat things for them or anyone. It's not in my nature and it's a handy skill that I refined in Israel.
But I deflect a lot of my life with humor. I always have. Sometimes it's a problem - like when I'm in the ER and I feel awful but I'm cracking jokes. I'm a lot like my dad. I do it because I want people to see me as human and not as the sick patient. I don't like people feeling sorry for me - even my kids. I want them to feel empowered enough to help someone like me.
So, I don't sugar coat things - I can't.
Someone told me to shield my kids and my office from my illness. HOW?!?! How do you do that? I show up to work when I feel gross - so how do I NOT explain to people that I'm not feeling great but I'm still there?!? How do I not explain to people that I've had a migraine for four days and it's exhausting - so I'm working remotely?!? AND - how do I NOT explain to my kids that I need to rest for a few minutes before I play an intense game of "mom build these legos for me"?!
I just can't do that. The reality is that I'm one tough broad - I am. I can handle a lot and I want my kids to handle things like me. And I don't want them to sugar coat anything.
The adventurous life of a woman with dysautonomia - a classified invisible illness.
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