[reason 237] what you don't see

 

We post things on social media, but they never tell the entire story. 

For people living with and/or caring for people with chronic illnesses, there are so many things even the most open of us don't share. There are photos that aren't taken either because we're enjoying our time together too much to interrupt it by taking a photo or because we're too involved in managing medical issues to be able to snap photos. 

The brief synopsis and the accompanying photos of people having a good time don't reveal what it took to just have the experiences listed.

Onyx and I, both disabled, successfully set up camp quickly and efficiently simply because we had the help of friends. We were both in pain the entire time, and I was watching Onyx the entire time to make sure they weren't about to pass out and injure themself.

While making s'mores, sitting at a picnic table, I had to change my seat to sit next to Onyx because they were passing out and could fall backwards off the bench. Onyx faced challenges playing Cards Against Humanity because they were having tics and were, shall we say, relocating cards unintentionally. 

Then there was the bear incident, which interrupted sleep, which resulted in more issues.

I took F and O to Walmart solo. They both were seat-belted into their wheelchairs, eliminating their fall risk and making it easier on me should either pass out and/or have a seizure ... which happened with both of them during our outing multiple times. Then we went to lunch, and we introduced F to the BEST gluten free chicken sandwich and nuggets that we've ever had. We were enjoying our food and each other's company too much to remember to take photos. 

The beach experience included a lot of fun in the water, followed by managing syncope and seizure episodes in the water and helping teens whose bodies ceased functioning thanks to Functional Neurological Disorder back onto the beach and then to our vehicles, which was quite the process.

I'm in awe of how these young adults live with their various chronic illnesses and still manage to live in a mindspace of hopes and dreams and plans. 

Tomorrow it may be my turn to spend the day in a wheelchair. We'll see what happens. Perhaps the chilly, rainy day will provide much needed rest. But with these two, it's not likely.