Nothing like a supportive community to remind you you’re not alone.
I asked the following question in a group for people living with Ehlers-Danlos Syndrome, “How much time do you spend resting?”
You see, I often spend more time in bed than out. Whether it’s pain, muscle cramps or the debilitating fatigue, there’s something that makes it necessary to lie down.
I’ve been feeling particularly guilty lately because I’ve been needing more rest.
The answers I received from members of the EDS group were so familiar.
Some worked through the week then rested all weekend. Like I often do.
One mentioned needing to do as much as possible early in the day. That’s my reality as well. I usually have four good hours, first thing when I can be up and about.
After that, my body starts loudly glitching.
Sometimes everything aligns and I have a golden day. That’s when I have enough energy to be up and do things with my family. Without feeling I’m forcing my body to keep going.
Being disabled can be isolating, especially in your closest relationships, when you’re aware you often need more help than you’re able to give.
Reading those answers reminded me there are countless others, finding ways to do their best, to live fully in a body with big limitations.
Add Neurodivergence to the mix and see what happens. I get to navigate ADHD, Autism, Dyslexia, Dyscalculia, Depression and Anxiety as well. Thank goodness for coffee.
This reality has required me to learn resourcefulness, reframing and resilience to an extraordinary degree.
As the EDS group is such a blessing and support for me, so is the group I run for my Neurodivergent clients.
A place where you can feel connected, seen, understood. Where you know you belong and will get exactly what you need when you need it.
From a group of people you trust and can be vulnerable with. We’re all in this together.