Sunday, February 23, 2020

eds update

It has been about six months since I sat down and thought about the EDS in detail - in writing.  It is still here - it will always be here.  BUT, I am not abusing my muscles and bones every day or even every other day anymore to the extent I had been.  And, it shows.  I am not covered in bruises - most of them I can remember exactly what I did now.  EDS makes your skin extremely easy to bruise, even a normal holding the door open with your shoulder while you swing in a box or groceries etc.  And I was seeing that at Lowe's especially around my feet and knees, using them as wedges and levers to pull and push things that I really shouldn't have been handling by myself anyway.

I've seen other improvements.  My hair and fingernails are growing.  Fingernails are also very easy to break, split and tear.  I still see that - I broke two on mailboxes yesterday but not to the quick and I wasn't already to the quick on five others etc.. I don't wake up as often in the middle of the night with pain in my hands from something I did during the day - if I do, I usually 'earned' it, like knitting for three hours straight while I watched NCIS.. but that is tolerable compared to before.  When I get a cut now it doesn't take four or five days of opening and reopening to get it to start to heal - that was especially bad on my hands as a cut on a box at work would turn red and infected and be open for days despite peroxide, antibiotic ointment and bandages - it just kept getting pulled back open before it had time to seal up, and things would get into it and make it infected and that would further extend the healing time. 

My shoulders and knees and foot still crack and crick all over the place but I am not fighting the fracture in my foot every morning just to walk down the stairs and then walking on it for six or seven hours on a concrete floor.  My knee is normal size and despite some pain after I've been in and out of the car all day it has not swollen or needed the brace.  I don't feel every single little fracture and strain piled on top of each other day after day.  In short, there is time to heal in between everything.  Taking care of the infected teeth really have helped my immune system, as well.  I have one left but it has not bothered me much, and with the bleeding after each one I'm going to wait a little bit to do it.

After the route last night I was definitely ready to come home and rest and sleep - muscle aches from being in a car for eight hours etc - but it was a different kind of exhausted and I knew I wouldn't wake up in the middle of the night being hit by the load of pain the day had saved up for me ten or twelve hours after the impacts.  Not everyone with EDS has that specific - but I've read enough that it really hit home - and made me feel like something I had for most of my life suddenly made sense - not an alien, it happens to others, too.  I just hope we can organize what I am doing over the next year that I can make enough to support us while still not tearing my body apart.  That is the goal. 

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