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For the caregivers — how do you take care of yourself?

lisas_mom
This is kind of a follow up to the caregiver post from a couple weeks ago. I'm a mom and my 19 year old daughter has EDS and POTS and I feel like I'm running on empty. Between managing her appointments, her medications, the insurance fights, the school accommodations, AND still trying to be a mom and not just a medical coordinator... Im drowning. But I feel so guilty saying that because SHE'S the one who's sick. Other caregivers/parents — how do you refill your cup? What do you do for just YOU? And how do you get past the guilt of taking time for yourself?

5 Replies

angie_w

"Normal" lab ranges are based on population averages and they don't account for individual baselines. Your "normal" CRP might be 0.2 and if it goes to 0.9 (still technically "normal") that's a 350% increase FROM YOUR BASELINE. But a doctor glancing at the range will say "normal" and move on. This is why keeping track of your own labs over time matters so much. YOU can see trends that a single snapshot misses.

mia_l

My ANA was negative for TWO YEARS before it finally showed positive. Two years of "normal labs" while I was clearly sick. Some conditions take time to develop detectable markers. Normal now doesn't mean normal forever and it definately doesn't mean healthy.

sara_fl

I heard "your labs are normal" so many times I started responding with "then why do I feel like this" and watching them have no answer. It's almost satisfying if it weren't so deeply frustrating. Normal labs should be the beginning of the investigation not the end.

emptybank

the wishing your labs were worse thing — yes. i have done that. i have sat in a doctors office hoping for bad news just so someone would BELIEVE me. that is a deeply messed up thing that chronic illness does to you. youre not alone in that feeling and youre not crazy for having it

still_here_24

same. my labs are "perfect" according to every doctor ive seen. my body disagrees. i stopped expecting labs to validate my experience and started trusting what i feel instead. not ideal but its where im at

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