Chronically Writing - The Spinning Wheel

I've always seen life, especially with chronic illness, as a spinning wheel. The universe is constantly taking a turn at it. Just when you think something is going good or you get used to life, something else stops you and drops you to the ground. It might not seem like a lot. You're used to being hit all the time. You're always waiting for the other shoe to drop.

But this is different. This is a power that you do not understand. It's your own body. From the inside, it attacks you. It's invisible, nameless and unknown and nobody knows about it except for you. Once the wheel stops, it gives you the worst possible scenario. Then, you adjust to this new hell, until the wheel spins again and you have new symptoms.

Chronic illness does not stop because you need to. It's hitting you with pain you

never realized. And if you're a woman, especially a woman of color, nobody is going to listen to you. You bounce from one doctor to another and everybody is giving you excuses. Telling you it's in your head. Do some yoga/pot/meditation/exercise and you'll feel better.

But once you are diagnosed, after months of agonizing fighting and advocating, the spinning wheel changes a little. It hits you much differently...because another chronic illness gets added to the list. You look at the universe like they're insane. Like: Really? As if everything else wasn't happening!

Ever since being diagnosed with several chronic illnesses, I waited for it, like the other shoe that was going to drop. The spinning wheel stopped in July - it was hypermobility. All the skin I thought was fat was collagen stretching because my joints were not staying in place. The stretch marks on my body also were more pronounced and my fingers bent far back.

After my appointment, I went into research mode.

Hypermobility, I knew, was similar to Ehlers Danlos. I personally could name several people who had the same disease. But I did not know it was a spectrum, like autism, and Ehlers Danlos was just a piece of the spectrum. I did not know where I was on it, though, or what the symptoms of hypermobility were, but I remembered my rheumatologist's words.

KEEP MOVING!

With writing, that's tough, but I came up with some exercises. Moving my legs while I type. Dancing and bouncing while I work out a plot in my notes. Doing sit-ups during breaks. And there is always walking our dog, Tips. Lifting weights. Doing the major house cleaning. Swimming when the opportunity comes.

But nobody talks about the pain.

That part of the spinning wheel.

With the syrinx in my neck and fibromyalgia, some days, it's a struggle to keep my head up. It's sometimes too heavy. The syrinx is partially caused by the hypermobility too, so it's a vicious cycle.

Or, I could be walking normally down the stairs, laundry basket in my hand, and my knee could give out. The arthritis wasn't the only issue. My knee cap felt like it was popping out, and it sometimes took a few minutes to adjust. Not to mention, gracefully get up!

There is never any way to sit and rest. Not being a parent to a special needs teen. While Calvin has been more independent and continues to be more curious, the spinning wheel of chronic illness is cruel. It takes energy and time away from my child because I could not take him places all the time. I've made him slow down. Kept him on the store scooter with me, just to prevent someone from kidnapping him.

It's not easy to being a parent when you are trying to parent yourself. It's worse when you no longer have the same abilities you did before. There is a lot of grief in unpacking your childhood, illnesses and doubts. It's also a lot to understand where trauma fits into all of this.

Because it does.

The universe is going to spin the wheel again. I don't know where it'll land. But once it does, I'll be ready...because my only choice is to keep moving. Whatever keeps you going...you never give up too.

Namaste! Have a great day, everyone!

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