EDS Awareness day 25

Day 25 – Behind The Scenes
For many of us the behind the scenes footage would be drastically different from day to day. Even from event to event. I really like being as mobile as possible so I do what I have to to make that happen.

Around the house, I will wear my afo’s (or not.) If I don't I will have more leg pain the next day if I walk around too much. If I am having a bad pain day and don't plan to move much I will just not wear them. Once I put them on though that's it for the day. They don't come off again until I know for sure I don't need to leave the house. My feet have a tendency to swell so if I take them off too soon I may not get them back on.
I also wear who’s (wrist, hand orthosis) I had never heard this term, and it always makes me think of Whoville…Anywho…I wear these to keep my unstable thumbs in place and to support my wrists which are quite weak. I usually wear these all day every day with the exception of cooking and washing dishes cause they shouldn't get too wet.
I also wear a torso brace. I can never remember the name of. More letters like TLSO I believe. It is the newest in my collection of Exoskelliton. It provides support to my back, ribs, and shoulders. It is very comfy and helps me be able to relax because I no longer have to literally hold my body together by tightening and loosening muscles.
I have a smattering of other braces I wear depending on the day. I have 2 knee braces for days when my patellas are wobbly and wonky. I have an SI belt I wear often because my SI is slanted and this straitens it out. Then I have a neck brace for when my neck muscles are to weak to hold up my head. 

The more bracing I need the less likely I am to go out. Because putting on the full exoskeleton is exhausting. By the time I get it all on... 
Then if I do go out I have to decide if I am going to be able to walk with my upright rollator or if I am going to need my wheelchair. If I'm going to need my wheelchair I have to decide if today is a day I can move it myself. If not I need someone to go with me who can. Many days this is the end of my adventure as I often cannot safely move it myself. I also have a problem asking for help. We are working on this but adaptive equipment is not budget friendly in any way. It's a lot of thinking and planning ahead so going out is not something I do often. On top of all the above, socializing in itself is just exhausting.


So there is a small peak into my behind-the-scenes. What happens behind the scenes in your life? Join us on our Facebook Group and tell us all about it!
This is the side of EDS and HSD that people don’t see.

I see you…
I hear you…
And I am so glad you are here ❤️

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