My EDS Challenge Day 27- Supports/ Aids in Life with Ehlers Danlos
- May 27, 2021, 1:35 p.m.
I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.
Day 27- Supports/ Aids
The decision “to brace or not to brace” or “do i finally cave in and get that cane/walker/wheelchair when i dont look disabled” are tough and personal questions for someone with EDS/HSD. We may be mobile/ able to do certain things at certain times but in the blink of an eye we tire out. Sometimes because we overestimated how much we could do. Or for no rhyme or reason, our body says “nope, youre done”. I feel safe having options. I choose to have the following mobility aids even though most of the time I can walk and look perfectly able bodied:
🧡 My cane. I take this if I have to wait in any type of line (picking up meds, DMV, etc). If I stand in one place for periods, I need something to lean on. I get fatigued out of nowhere due to my hesrt rate fluctuations due to dysautonomia or if im having a high pain day, I need more options of how to position my body to distract from the pain.
🧡Wheelchair- I ask to be wheeled if I have a long distance to walk. Some days I can walk up to two miles with breaks. But other days I am lucky if I can make it to the kitchen. If theres energy I want to conserve especially if im traveling, I will ask to be wheeled.
🧡Elbow brace (s) my elbow(s) are my most obvious hypermoble joints. (They look disgusting lol)..Sometimes they hurt but normally they are fine. I will brace them while i do my excercises so that they dont stretch beyond what is appropriate.
🧡Abdominal compression- This helps my organs stay in place during movement. Also, blood inappropriately pools in my legs and abdomen because of POTS/ dysautonomia.
🧡SI joint/ Hip belt- My pelvis becomes grossly misaligned during the week because my ligaments pull in weird ways and my muscles tighten. As a result, things get “stuck” out of place. I try to work on these with excercises but the same pattern keeps happening no matter what i do.
🤣🤣🤣 I am a house held in place by duct tape instead of bricks.