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Permie dazzle - Ehlers-Danlos Syndrome folks

 
Posts: 59
Location: Suffolk, UK
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In my poking around I’ve seen at least a few others mention EDS. *waves in zebra*

I suppose it’s not super surprising that permaculture is appealing to others dealing with this. I’m fortunate to have a flexible lifestyle/work and (relatively) limited issues right now, but I know if I had to go back to working a “normal” job like I did throughout my 20s my condition would go downhill fast. We’re still 7ish years away from getting land, so my health goals right now are focused on being able to get there as fit and functional as possible to build for the far-off future. It’s good motivation!

How has your homesteading journey impacted your EDS (and MCAS/POTS if you deal with the triad)? How has your EDS impacted your homesteading journey?

Lessons learned, things you wish you’d done differently?

Cool adaptations or decisions that have made things awesome?

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Location: Cincinnati, Ohio,Price Hill 45205
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My kid has been diagnosed with EDS.
They are hyper flexible, has joint pain and we have been told this contributes to them tiring easily.
We were told it probably comes from me, as I  was also hyperflexible and experience joint pain and dislocations, as do my siblings.

I'm not sure the diagnosis has been of any help to our family.
 
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Location: South of Capricorn
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Hey Jennifer. I managed to miss this post on the first go-around, glad William bumped it.
I, my daughter, my mother, and my sister all have EDS or EDS/POTS. It has gone from being a curiosity to being the occasional headache back to mostly a non-issue. I am super grateful that my kid has a heads-up about things she can expect, instead of having to chase geese for years to figure out the reasons behind palpitations, IBS, joint issues, mental health stuff, allergies, etc.
Mostly, it's not an issue, except for when it is. Last year around this time, I managed to dislocate some ribs and have trouble breathing, which was fun smack in the middle of the pandemic. It passed. Bright side, as I'm getting older my skin still looks pretty good.
Hand arthritis is probably the only thing that I really need to keep on my radar and that affects my life and work. I'm exploring what works. Certainly not commuting to work for hours every day and being able to work from my home office (and eat the way I want to) has made my life about 1000% better. Same with the flexibility to exercise religiously, which helps keep my joints stable with stronger surrounding muscle groups.

I also have a great blessing: my primary care doctor also has EDS. She has given me permission to not think about it unless I want to, which sounds silly, but I feel better with her having my back and telling me when I need to think about it (and when I don't). This disease has a lot of potential effects, and I can easily get lost down rabbit holes, I don't need that anxiety.
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