One of the hardest things about having a chronic illness is needing to rest so much. Doesn’t sound so bad? We all enjoy a little R&R right?
Sure, but enforced rest because your body has ground to a halt when your brain’s still raring to go is no fun. When you have stuff to do, when people are depending on you. When you made a promise, a commitment and then a bunch of chemicals, proteins, genes, whatever, decide for you that it’s just not gonna happen.
And then, once you accept you’re just going to have to lie down, you surrender to another labour: trying to get comfortable. Chronic pain does not make this easy and with Ehlers-Danlos Syndrome, there’s barely a position where some joint doesn’t end up out of alignment. If longer periods of rest are required, muscle stiffness and weakness becomes an issue and a kind of mini-rehab has to be undertaken before you can get up again – gentle stretching and repositioning of joints that have ‘popped.’
I used to spend these rest periods frustrated; resenting my body and begging it to just step up and do what it’s supposed to. At the same time, I would dissociate from my body and perceive it as a cage, trapping me into an inert, passive existence. Rejecting my body in this way meant I was at war with it. With help, I have learned a different way. A psychologist introduced me to Mindfulness which allowed me to connect with my body again, to accept my symptoms as being part of myself and to feel compassion for my body in its pain. Now I work with my symptoms rather than against them. I take comfort in knowing that when I’m resting, I am taking care of myself and I’m teaching my little girl to prioritise taking care of herself and her health. I hope, a legacy of love.