hypermobile Ehler Danlos Syndrome and the broken robot

I don’t want to be defective.  I want to ignore it.  I’ve lived with it so long without knowing what it was - ignoring all the ways I was 'weird' and 'broken robot waiting to be fixed', that I want it to actually be the normal way bodies work and I’m just the one having trouble dealing with it.  But I know it is not how normal bodies work, just how mine works and it is not going to get better unless I stop doing the damaging activities or at least reduce them.   I need to find a happy medium where I am not moving thousands of pounds of product every day, but but not a sit down all day job either, as that stiffens and atrophies the muscles and will cause other problems.

And it is a personality issue that I get frustrated with the delayed work-pain response and instead of taking it easy for the day I get angry at the pain itself -  and then enter some adrenaline stress mode where I do physical things even a normal person has trouble doing – out of the sheer will to do it and extra-stretchy ligaments and some sort of stubborn death wish – and pay for that even harder than my normal days.  On a normal day I feel the pain response about 10 to 12 hours later.  When I've overworked and stretched beyond physical limits it can come on even sooner.  But then at least, I feel like I’ve earned those hours of pain and fever and crashing asleep for ten hours at a time.  And I’m tearing myself apart, bit by bit.  Now that I’ve come to that mountain where I’m looking down and saying ‘I can’t do this to myself anymore’ is where the real hard part begins.  So, what am I going to do instead?  And why do I always feel unworthy unless I have beat myself right to the edge of tolerance?  And the other scary part is, where will I be in ten more years if I keep doing this?

The hard part

I was listening to a conversation the other day between a woman my age who doesn't want children, and a man who doesn't have any.  The woman described having a baby growing in her as an alien symbiote that then must be expelled from the body.  But, I said, that is not the hard part.  They didn't want any further explanation, and I didn't give any.  But.. carrying and birthing is not the hard part.  Being a parent is. 

The hard part is having them with you every day, year after year, while keeping them and yourself safe and sane.  And, it is trying to make sure they transition into good people, through all the anxieties, fears and hard times in between.

That's the hard part - and the most rewarding, and the reason we wanted to be parents.

Heds probably hypermobile ehler danlos syndrome

You have to remember youre only human.  Although, sometimes it seems just the opposite because that shoulder stretches unnaturally far under 'normal circumstances and effort' and that big weight seems to move naturally for you as you pivot it around its center if gravity and use the extra reach and bounce in your limbs and torso to do something difficult for someone twice your size.

Just because you can stretch the limits of your body doesnt mean you really should.  Just because someone wants twenty bags of softener salt diesn't mean you have to load them all and bruise every finger.  And you can hip check the 200 lb vanity against the cart and the wall and load it yourself but you will pay for it twelve hours later.

 You're used to it happening, expect it, but still it is a sign not to be ignored or worn like a badge... which it is hard not to do that because it keeps you feeling normal, maybe even 'super', when you are really breaking yourself in a thousand little cracks and tears.  All the big muscles take that long to realize the strain and complain loudly... the small ones usually kill immediately after because you didnt think about the repetitve strain, but it caught up to you as soon as the muscles had time to cool down.  Those hurt now, and in twelve hours will not only hurt but also throb and/or feel stiff like poured concrete between the strands.

Your muscles are made of weakened cotton string and too much pulling on them is going to show one way or the other.  Save that for feeling the burn of swimming for a few minutes earlier in the day or knitting ten rows on your shawl.  Save it for completing that project at work that needed to be done up and down the ladder but was somwthing a normal human could accomplish alone.  Because yes it is going to hurt but maybe if it has to it should hurt from things you intended to do in the first place, and weren't a stupid thing for a normal person to attempt!

And remember it might take a day for today's muscle strain to heal or two months of struggle... you really never know, or something might not heal right at all.  Youre only human... maybe uncommon in ways that make you feel alien - but still human.

// it is in the family but doctors had never mentioned it to me.. postural orthostatic intolerance was all they could agree on.. everything else was growing pains or from female 'issues' or migraines or just plain not healthy.. pneumonia and sinus infections and poor diet and weak muscles... a severely dislocated shoulder, two broken ankles and one broken wrist and another fractured wrist was just my being clumsy and choosing dangerous sports in gymnastics and martial arts.  well, this explains nearly all of it, including the crowded teeth that are always inflamed and falling apart.  Im not an alien... just a little broken in my code.  Now that i am getting older the cracks and tears are going to cascade some and take longer to heal... so i have to change my habits which is not easy

bits

We went out to Oishii Chinese buffet and Japanese Hibachi tonight.  There was a really good selection at the buffet.  Esme mostly ate fried rice and watermelon, but she was able to find some things she wanted to try.  I tried  a lot of things.  Stuffed clam tastes something between meatloaf and thanksgiving stuffing...

I made this jute string basket with a crochet hook size I. Then I added black acrylic yarn for decorative stripes, to finish the top edge and to add a handle.

OK It's been a long day.  I went grocery shopping, picked cowpeas in the garden and processed them for seeds, made a pillow, wrote a short story/essay, worked on the tapestry a bit and took Esme to the library and the dollar store and the restaurant, then talked with my Dad for an hour, and worked on the tapestry some more.  I'm tired, and I probably should get some sleep.  Tomorrow off and I still need to do some more laundry and process a pumpkin - but haven't decided yet if I want to let Esme Jack-o'-Lantern it, or actually eat some of it, or just chicken it, and save some of the seeds.  Really, we could kind of do it all with it, because just because you cut a Jack o' Lantern out of a pumpkin doesn't mean you have to leave it to rot that way.

bit o bits

I've gotten a lot done today, took pictures in the garden, did some maintenance tasks, sewed two tea towels and three pillow covers that were waiting for me to do them.  We took the trash up, and I found and ordered another foot stool for Esme's room where we read (like the one by the chair in the hall - it was still available to order on clearance).  Shelled some cowpeas to dry, processed the onions into a potato onion soup and have done a little knitting.

So far, not having coffee is not biting into my productivity - but bringing it back.
We'll see how it continues.

bits

So I've given up coffee now, for what, five days running?  I've had a little bit of powdered coffee each day just to use it up and not waste it, but it is nothing compared to the two full pots of coffee (plus the powdered in between sometimes) I was consuming before.  It's the equivalent of one cup to two gallons.. crashed caffeine levels.

I'm not ready to say that it is 100% better. I miss the coffee, and warming up some water is my 'tic trick' or grabbing a piece of Trident gum if I'm at work and have to go out on the floor... but it's not the same.

But am I feeling better?  It's hard to tell.  My leg is not swollen at and under the knee anymore... and I noticed some changes in it again last night.  My leg  has felt 'twisted' (inside the muscles) on the outside calf for the past week after I used the ice pack and Salonpas and compression brace to ease down the ball-sized knot in my inner calf muscle.  Last night, one area above my right ankle had a large 'white' patch that was slightly cool to the touch (and I wasn't wearing jeans.. so maybe I was getting cold, too)  - but when I massaged it I realized it was the remnants of the 'muscle knot' I had further up my leg earlier last week - the one that went down when I put the compression brace over it while I worked.

Its still 'weird' this morning.. it feels like a pad of fat or something on that side compared to the other leg's regular muscle, or like it has a layer of water slightly swollen?  It hurt briefly last night which was why I noticed it, but after massaging it and putting hot water over it I felt a 'shudder' in those tendons and it hasn't hurt since.  So it still looks odd but doesn't hurt and it isn't remarkably cold or anything.  Massaging it made the veins in my foot below it stand out.  I couldn't bend my leg at the knee upwards towards my waist earlier in the morning, but after the hot water treatment and the shudder I realized I could bend my leg all the way up to my waist without pain.  So, something is happening and it might actually be good.

So, no coffee (or next to no, and once the box is gone and not being wasteful I doubt I'll buy more).  Lemon ginger tea.  Brushing my teeth 30 minutes after a meal if I can, ACT mouth rinse morning brush and night, trident gum if I can't.  I've got to find a better 'get up and get Esme on the bus' routine for brushing my teeth after having tea and a food item with her in the morning.  I've ended up brushing after 'second breakfast' each morning after I get back home and have more time to make something substantial.

I noticed I am NOT going back to sleep dead tired after putting her on the bus, and I'm not getting 'dead tired' until 8 or so at night.. so 5:30 am to 8 pm is a good run compared to before.  And I'm doing things.. I've done some other self-care and laundry and crafts and thinking about lists of things that need to be done etc etc...

The other two things I'm doing is limiting wheat bread items (exception for dinner time with family and one fruit and grain bar for snack at work) and sugar and avoiding corn.  I am mixing a smoothie some mornings with a banana in it to add magnesium and was adding black beans to my meals for the week for the same reason.

Will see in another week if I can say these observations have continued.

First Day of Sixth Grade

 We're already to sixth grade?  Time flies.

bits

We are so glad our Minerva dog is back.  She unhitched herself from her collar the other day and ran off and had been gone for two going on three days.  We were worried the  coyotes had gotten to her.  But then she came slinking back in the house completely exhausted tonight. 

I have gone to minimal caffeine intake.  Yesterday and today.  We will see how well it lasts.  Had a very bad dental appointment and am looking at some reactions with other things in the rheumatology stuff I was looking up.

Esme starts school on Monday!

Recipe File : Sardines and Olives with Zucchini and Nectarines

Place into a frying pan: 
1 can of sardines, boneless and skinless, in olive oil, the whole can undrained
-- break up the sardine filets until small
About three tablespoons of sliced black olives
About 1/3 cup of raw zucchini, cut small

Pan fry on medium heat, putting on a lid and turning down to low as soon as it really starts to sizzle.
Cook for a little while longer until heated through and zucchini has started to soften, then turn off heat.

Wash and cut one large nectarine into small pieces, set aside half for something else.
Wash and rinse a handful of blueberries
pulse the nectarines and blueberries together in a chopper until it forms a salsa

Spoon the fish mixture onto one side of the plate and the fruit salsa on to the other, pair with seeded rye bread

I see no reason why you could not use mackerel for this recipe as long as it was boneless and canned in olive oil, as well.

Bits

Happy to get these photos today :)