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Living with...

Everyone has something. Something you may see or sense but it is there. Living with lupus can be lonely. For some time, I was feeling really lonely. Not in the sense of global loneliness, I know you are out there...but lack of I can reach out and touch you people loneliness. I was feeling frustrated and overcome with this feeling of defeat. I would wake up and while I do my morning routine of dry heaving, insane body ache and headache...this fear of dread of having to do this another day. My illness takes over everything. I really would like a break from my self motivating banter. Give thanks, this pain just is, keep going, this is not going to kill you, be present, be available, be me...I would like a mini vaca from me...I am bored of me and this chronic BS. Yesterday, I announced that the family would be going to the beach. We live close to the beach but the thought of the motion of the car makes me retreat. However, subconsciously I knew I needed to be let out, a change of scenery. My spouse thought I was going to cancel, as predicted, I stood out of bed the pain was excoriating. I immediately started weeping as I slowly went through my basic morning routine. The car ride was just as my spouse said, I just sit comparable to a comatose body. He was visibly getting stressed and began to regret the voyage. Upon arrival, we parked on the beach and started our very short hop to the ocean. The sound of the waves, the warm sand, that amazing ocean smell. It was spectacular. I sat in my chair and watched the twins play and finally, truly laughed with my spouse. The pain dulled because of joy. I was not dead yet but I was not living either. I had checked out. Lupies, ebbs and flow, never-ending ebbs and flow. I was defeated but alas, today is another day for joy and discovery. I am alive. Thank you.

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