I realize their intentions are good, but the funny thing is....the braces, the crutches/wheelchair, the mask, the port...that's part of my normal...everyday.
So what is my normal really like?
This is a difficult question (at least lately) because my “normal” or baseline changes weekly.
For me, my “normal” involves multiple joint dislocations everyday (most notably my kneecap, shoulder, ribs, and right hip--but this too can change on any given day), an average pain score of 6/10, daily headaches and neurological symptoms from craniocervical instability, allergic reactions to God only knows what, random POTS episodes with pre-syncope and/or syncope, difficulty tolerating food, weekly IV infusions for blood pressure and heart rate, and unrelenting fatigue/exhaustion.
Everyday I wear a knee brace to hopefully decrease the number of dislocations and subluxations I experience (it still doesn’t stay in place). I wear an ankle brace (or walking boot when I break my foot) to prevent my ankle from rolling out (inversion). I sometimes wear a hip brace to limit extension and hopefully prevent my hip from sliding out the front. With bad shoulder dislocations I often need to spend a few days in a pillow sling. When headaches and neuro symptoms (from neck instability) are really bad I use a cervical collar until my neck can be assessed by my physical therapist.
I use either crutches or a wheelchair everyday due to pain, fatigue, joint instability, and POTS.
My week consists of physical therapy 2-3x and multiple appointments. Unfortunately I am unable to work at this time but hope to contribute in a meaningful way one day.
Life with EDS is frustrating and unpredictable. But with every curveball I just try to keep swinging.
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