I recently was given the “homework” of journaling about where I feel like I’m stuck in limbo. And I immediately started laughing hysterically, because – EVERYWHERE. I feel stuck in limbo everywhere. The very nature of my chronic illness means I live in a perpetual state of limbo. I cannot make plans with friends, agree to a date, or even schedule an appointment at my hair salon without the mental – and usually verbal – caveat, “as long as I’m up to it”. Which is code for “as long as my body doesn’t decide, of it’s own volition, that NOPE, we’re not doing THAT today (or this week, or this month).” And when I make those plans, and then am ACTUALLY able to follow through, I always, ALWAYS do so with the understanding that I will most likely be sacrificing considerably more of my time to do this thing than the other parties involved. In preparation, yes, but also in recovery. One day spent walking around the Zoo with my clan of small humans (more on THAT in another post soon) means that, BEST CASE scenario, I’ll spend at least two following days largely in bed, or at least with considerably less energy and stamina than my usual scant supply. It’s a gamble I take happily and often, for the joy of feeling NORMAL again, even for a little while. But I absolutely still feel trapped, stuck in limbo, so many of my wants and dreams lost in the nether of “will my body LET me?” Because I know, from bitter experience, the cost of not listening to it when it tells me ‘NO MORE”. So my body calls the shots, and sometimes, my neurodiverse brain does, and I’m left often hanging on as they drag me along, and well, for someone that really prefers to RUN THEIR OWN SHOW, THANKS, this is not an ideal situation. I do not want to spend the rest of my life on the sidelines, saying “oh I’d love to, but I probably can’t”, dreaming of the trips I’d take IF I COULD, or the career I’d have IF I COULD, knowing that where others frequently talk about how “the only person stopping you is YOU” – I really AM stopping me. Or rather, my brain and body slow me down. A lot. And that’s a hard pill to swallow, especially in a society that praises “DOING” over being, that admires the statistics of a person over who they really ARE. So I live in limbo, where I am equal parts so deeply grateful for the small joys and wonderful blessings I DO have, yet still sad and often frustrated at myself over the seemingly “average” goals that I know I may or may not ever accomplish. And I do my best to not compare myself to others, and to make my peace, fragile as it is, with the reality of my health and brain.

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