Just doing my best over here to chronicle my chronic condition with alliteration, humor, and a whole lot of spoons!
‘I’m not able to leave bed yet today, maybe later.’ ‘Can you do (x, y, z thing) for me? My body/brain isn’t able yet, thanks.’
Today’s challenge: try to make the word “yet” a part of your ability vocabulary. Examples: I can’t do this (and/or insert activity here) yet. My body isn’t yet ready for doing that. No, I haven’t tried that yet, thanks for the suggestion.
As I promised on social media, here is the HGTV Hydration Game I’ve been trying to get down the rules—official rules—for.
I rode in the car the other week and we went on a clover leaf on-ramp. I felt like I was a jar of Kool Aid and all my juice (blood) rushed to one side of my body. I seriously had no idea what to do.
I couldn’t picture what my 2-year brain-a-versary would look like a year and a half ago.
To be absolutely, completely honest, I can’t say that I’m doing a whole lot better than I was in 2016 either.
But, when I really thought about why I’d want to celebrate my life getting flipped, turned upside down (announced on social media link), it all comes down to this: I listened to my body and I went in.
It’s so simple, but it obviously turned out to be a really big deal.
Trust yourself, your body always knows what’s up.
Since we met over a year ago, we found that even though our initial diagnoses were different, we face a helluva lot of the same challenges on. the. daily.
The sounding board of not only our friendship, but that of our parents (they are caregivers in both of our situations, #LuckyToHaveEm) plus our siblings too! Everyone in our tiny family community “gets it” more than literally anyone else; and that’s just how it is.
There's a lot of good information for those newly diagnosed with CCM OR for family/friends to understand a bit more OR general good advice for chronic illnesses OR ya' know being jealous of brain surgery (yes I'll admit I was, until I realized that was ludicrous).
