I’m frustrated and I feel like an elderly person in terms of my biological and physical functioning age even though according to my chronological age, I should be in the “prime of my life.” As my Ehlers Danlos Syndrome connective tissue disorder seems to be rapidly progressing and my SPD-related balance issues are, for some unknown reason, at an all-time high, the limitations I need to set around the house and in terms of physical activities are becoming aggravatingly restrictive. Without setting these “rules,” my risk for serious injury is too great. For example, going down certain stairs is very risky, as I often slip and fall, cascading down the flight. This is particularly an issue with our basement steps, which need to be taken to access the washing machine. These stairs are not only steep, but very uneven, sloped, and lack an adequate railing and wall for part of the span. I have already suffered serious stumbles then tumbles down these stairs numerous times, enough to override even my stubbornness to be self-sufficient and independent. I’ve resigned myself from being able to do that stage of the laundry, but that just saddles my husband with another chore that I’d like to rid him of. It also makes me feel incompetent and dependent, much like an elderly adult who has to move back in with their adult children.

My short stature has always been somewhat of a hindrance for getting things done wholly independently, such as reaching items on a high shelf. I used to insist on the “chair method” and pull the closest chair or stool to the area and stand on that. Of course, I had the occasional accident, particularly if I lazily selected a spinning or rolling chair, where I’d topple over and end up with some sort of scrape, bruise, or bump if I was lucky. Nowadays, such a fall on my strikingly loose joints and degenerated connective tissue would surely yield a painful and damaging injury–a dislocation, sprain, strain, or fracture. We can’t open that window and take such a chance.

It’s frustrating to feel like I already have to be so careful with my body and place restrictions on what I can do by myself. Just this morning, we were out of toilet paper and baby wipes at the toilet, so I had to retrieve more in the linen closet where they are stored. Wipes are easily reachable since I’m the only who uses them and thus, store them at my arm level. Toilet paper was way up top on the highest shelf and it took grabbing the mop to use the handle as an extension of my arm to whack one down. I must admit that I first tried standing on precariously on tip toes and then trying to stand on a nearby unsupportive box before re-strategizing to use the mop. At the end of the day, this is such a minor inconvenience, but it just feels like it’s becoming the norm for me or at least something I need to program into my mind to be a constant consideration so I don’t get hurt. I’ve already been to urgent care for falls at least half a dozen times this summer alone, and the $50 copay I’d rather save aside, these trips inherently mean I’ve taken a serious spill. Mostly, I’ve been fortunate to evade head, neck, and spinal injuries, but I’ve certainly incurred debilitating limb insults. I’m still in the process of reconditioning my conscious awareness to evaluate the safety of an activity and weigh the costs and benefits of undertaking it independently versus waiting (for simplicity, urgency, necessity, ego, etc.) or asking and waiting for help. As I mentioned at the start of this post, I equate it to the sacrifices in independence elderly people also eventually need to concede, which, after observing my grandparents go through that stage, does not seem like an easy concession. No one wants to feel like they are losing ground on what they’ve achieved over their life, especially as it relates to such fundamental domains like self-care. I have so much empathy for anyone who’s passed through a stage or phase that necessitated letting go of some of these types of activities; it’s ego-damaging to a certain degree. With that said, safety and maintaining good health are far more important priorities than feeling completely self-sufficient.


  1. It sounds really tough Amber. I am sorry you are dealing with this at this point in your life. But honestly, all things for a reason. Who knows what you might be prepared for given the steps you are taking now? All for a reason.

    With that said, you are loved beyond your knowledge. I am always there for you.

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