this is how we do it

 

 

the spider plant I brought to work in September as a tiny clipping - it is growing well at work and I am remembering to keep it watered

My theory of 'triage' alarms - which I know just look 'insane' to anyone else -  where I keep myself in check for what I should be doing and when.

I have a few extra ones for clock-in time at post office on Saturday and Sunday as well, which are not shown.  Several of the ones above are designed to wake me up so I don't sleep all night in one position or without drinking some water - because both of those things are very bad for me.  

When you are hypermobile and really fall into sleep, things seem to 'migrate' joints wise and I have woken up before and realized that I was sleeping with an ankle or knee bent completely wrong and it didn't hurt at all until I tried to move it.  Waking up and turning over a lot during the night keeps things from overstretching or falling into 'sublux' and staying there too long (as long as I keep in 'near sleep' and don't like get up and bake a cake or play a video game for hours etc. (turning on screens generally isn't great)).

I begin to turn myself over back and forth and check elbows and shoulders and knees and ankles etc at 4:45 although I usually don't actually get all the way up until about 5:15.  Every time I sleep five or ten minutes on the snooze alarm and turn over something else goes CRACK/CLICK and eventually it centers back where it should be to function.  The one bad thing about having this routine is that the dogs and cats know it and actually will try to wake me up a minute or so before the alarm - which can make it hard as they want me to get up out of bed immediately and go let them in or out (or out, then in) and I do have to be careful especially on the stairs especially if that left ankle is the one being 'uncooperative'.

All of this operating an uncooperative skeleton also really tires me out and I do good by myself when I can and just fall asleep when it is possible, instead of waiting for when it is 'proper'.  So sometimes I might fall asleep before I complete some of the important tasks, or be too tired to remember to do them until I've slept a few hours.  And if I wake up at 1:45 and realize my phone isn't plugged in, or I didn't start the dryer, or don't remember where the keys are - that gives me that much more time to right that problem before it is 'crunch time' of actually getting to work on time.  And then, even then, I leave more than a half hour early beyond the time I think it will take to get to work, just in case.. or I plan to, but sometimes I still have that 5 more minutes that needs to be done, feed chickens, unfreeze water dishes, etc.. and that built in cushion helps a lot.

I worked all through last weekend at the post office, helping out with Amazon Sunday for the first time in weeks, and they want me to do that again this weekend.  We went out for our groceries and got Christmas dinner items tonight after I got home from the office job.  I haven't paid so much at the grocery store in years... although we did some stocking up.

Languages : mostly Japanese, a little Czech.  I am still a bit annoyed with the Czech voice app but if I can get a bit more 'brain' I might do some more on it.  I really like the Japanese reading/story app still. 

some things in general

I did a whole lot of crocheting and knitting trying out this toy pattern I saw a picture of - winging the entire thing, unhappy with some of it, trying other things to push it along etc.  I learn a lot when I do these, and the knitted ones usually turn out great but the knitting takes so long and is so small and hard on my fingers sometimes.  Six of one, half a dozen of the other - since I'm not on duty at the post office I thought I'd work on it yesterday and hope I didn't strain my hand for whatever I do on Wednesday.

 

Talking yesterday I know there was a lot that I wanted to say but couldn't find the right frame of reference.  It's taken me thirty years to realize a lot of the methods I now operate by - and a lot of those were just trial and error.  I just have to make my ADHD tendencies work for me, because this is me, I'm the one getting things done in here, so knowing how it gets done best for me is the way to go.  I'm sure a lot of my methods looks painful to others, and trying to put it out in speech is really hard for me because you can't edit and insert and delete like you can in text without becoming a Mime with a whiteboard /ha - but also - in life you can get all the instructions and all the tools put on your workbench but you have to figure out yourself minute-to-minute how to get things done with them.  I think my dad said it as 'wherever you go, there you are, work with that'... I'm still working on it... and I get things done, eventually.

Then, at forty, I found out more about dysautonomia and Ehlers-Danlos, which run in my father's family and affects individuals differently.  I knew about the dysautonomia from being diagnosed with POTS at nineteen, but learning about the entire 'umbrella' of EDS disorders and genetic links was like getting to see the actual operating manual for something you only learned by hunt and peck.  And even with all I've learned so far, I still haven't completely processed that because life doesn't slow down often - and then you have to decide whether to rest or catch up on things you've set aside for the moment - to decide whether to use up your energy while you have it, and what on etc etc.. or to reserve it and hope you still have some when you need it next.

What I've learned in general about hEDS (hypermobile Ehlers Dalos syndrome, "EDS type 3"):

I can give no advice at all on healthy eating to anyone really - but diet has been about the only thing that can be managed since hEDS has no 'cure' and is genetic, and just naturally gets worse with aging, which is why more people with it start to realize and learn more about it in their thirties and forties, even though they've had it all their lives and sort of just 'got by' until they began to age.  First off every body is so different you just have to find your own middle ground over time, and my body is even worse because hEDS is just so hard to understand in the first place.  The body is always under constant repair, and as you age, your body repairs slower, so in hEDS the damage starts to build up and snowball if you aren't taking care of it.  hEDS is a problem at the base level of how the body makes collagen, slightly too stretchy and fragile, and the body replaces these structures all the time, but slower as you age.  'Dietary collagen' doesn't help because it does not replace the collagen the body is always making in every cell of your skin, muscles, blood vessels, even eyes and gums and so forth, that is just slightly wrong here and there, a little like swiss cheese.  So things break down and strain and 'degrade' in weird and unexpected ways, sometimes heal, but not always quickly or correctly without help, highly confusing unless you at least know why.  A lot of the dietary things that help are advice bodybuilders would follow - even though it isn't expending the 'exceptional' effort of perhaps a bodybuilder, the muscles are constantly still needing that kind of fuel to rebuild themselves from what is just normal activity for most other people.  I'm still figuring out the very strange needs of this condition and I'm sure it doesn't really add up to healthy, but it's healthier than before I understood why everything was going haywire trying to follow the advice a 'normal healthy person' would thrive on.

So when I'm hungry - I follow my weird-food instincts because they're usually pretty correct, high 'good' fat to process the fat-soluble vitamins, high protein, lower carb, lower sugar, lots and lots of anti-inflammatory foods and spices.  Some of the stranger things I like, green chiles, hot peppers, bananas, cucumbers, avocado, olives, peanut butter, celery seed and seaweed etc.. are because they contain specific nutrients that my body needs and are hard to get elsewhere.  I'm craving avocado, not donut - but sometimes I crave tacos or Indian type recipes because of the spices and the antioxidants that come with those foods - black beans, coconut milk, butternut squash, egg yolks, hot curry etc...  And, combinations that other people would find odd sometimes taste really good to me - because I need all those things, and tastes are made up partially by our body's responses saying 'oh yes, more of that!'  I've tried methylfolate once, but should try it again.  I hate that it has to be ordered and I can't get it locally.  There are studies saying a lot of the dietary issues can be helped by adding that, because the lack of some enzymes in EDS gene carriers can cause problems processing folic acid, which is in nearly everything, and then that also causes trouble processing copper and other micronutrients, which are necessary for the muscle repair etc.. snowball effect, too much of what the body can't process, tying up some of the things it really needs to process, and inflammation.

Coffee causes other people to be overjittery and anxious and can't sleep - but again, I'm a case of opposites.  These are things I swear my body 'knew' before I really consciously did, but I often had a very hard time 'listening' to it over the magazine and health advice that gets constantly blared at us in society.   And I always have drank so much coffee at times, you'd think I should be a constant interdimensional blur, but it also has a key anti-inflammatory in it and keeps the vascular system's constriction vs. dilation function constantly exercised which helps combat the POTS dizziness and fainting problems I had so badly years ago.  The few times I tried to stop coffee 'for my health' resulted in inflammatory nightmare weeks that I was told was 'withdrawal' and I'd feel so much better if I just waited until I 'detoxed'.. no, nope, I wasn't 'just in caffeine withdrawal', I was in pain and angry, all my joints felt like I had been thrown from a horse and I was so tired and brain-fogged but couldn't sleep well, and I felt nauseous from drinking plain water that drinking the water was a constant effort where I drink down cups of coffee before I even realize it's empty and stare into the empty cup with little cat-whimpers before levering myself up to go get more. 

Although - I'm really glad my cousin finally tuned me into corn being an inflammatory for us, because that little bit of information to cut that out wherever possible really changed a lot.  Once I started watching where that was in my diet and trying to avoid it there was a huge change in all of my healing and muscle inflammation processes.  And there is corn meal and corn starch in so many things!  It's a lot easier to manage the inflammation that is still here when I'm not actively adding to it with something I didn't realize we were 'allergic' to.  Most of all, understanding the cyclical nature of constant repair and energy expenditure that is present in hEDS really helped me understand energy-fatigue cycle that comes with it, and the exercised 'in shape' vs the overuse 'injury' of the hypermobile muscles.  It also explains why doctors would always think I was 'fine' and then I would turn into a melting type mess and they were like 'how did it get so bad??' and then I'd get back into a repair cycle and it was like 'wow, you must be better' etc etc.. In general though, I 'run myself into the ground' less often now that I know better, although it still happens - and I remind myself to stop early at 'good enough for now' on some things sometimes to assess and not OVER-overuse things that will already be needing to rest and repair later.

 

finally reached the 1000 day streak on my PC account, which I've had since 2017  I was doing French and Chinese yesterday, got Super preview and will try to finish up some sections today in the French and maybe another language.

This week:

I am not on at the office, that I know of, this week - that's good and bad.  It's bad in that I'm not getting the hours, and that will catch up to us later, but it's good in that I had been working a lot and needed a little bit of a break.  The garden is in rough shape - but still producing tomatoes and a pepper here and there.  Something took advantage of my more infrequent visits and ate some of the cucumber plants on one side of the raised beds.  I tried to pull the fencing back up there - it must have been a deer reaching over the fence since there was such an obvious bite through three of them and bits of the plant was left down on the ground with the fence pushed down.

I didn't find the biryani spice I was looking for at the supermarket yesterday, although I got the juice.  What I ordered at the restaurant yesterday was three times what I normally would, when I go to the other place I only get one set of rolls and that is more than enough, but the recipes are entirely different, too.  But I was glad to be able to use the leftovers at home for dinner.  I used five-spice powder and additional black pepper, a finely chopped shishito pepper from the garden, frozen white onion, soy sauce and a handful of the fine egg noodles to add to the leftovers I took home and make a refried fried rice for dinner while Esme and Mark made a pizza.  My food was VERY spicy.  The olive oil I'm using is Bertolli Light Cooking Olive Oil? ( The price went up three dollars a bottle since the last one I bought, which was a shock. )  But I rarely just fry any food in oil - Mark says he has no idea what kind of cooking style it is - but I add a bit of oil to the pan, maybe a tablespoon, and then actually dilute that with about twice that amount of water - heat it up, add onions and peppers and/or other vegetables, and then when they are hot and sizzling, I'll add more water and soy sauce and powdered spices (and the noodles here), sometimes add the frozen greens from the garden in this step because they get really soggy if added in the earlier one, and get that boiling again, then add the rice which I cook up a half cup or a cup at a time and store in a glass container in the fridge.  

I did that sleep four hours and check on the sick chicken thing again, and now I've been up for three hours again.  Yesterday I fell back asleep for two hours later - and today I actually got about four more after I had been up for three.

Writing this is keeping myself from getting back into that crochet and straining that hand before I get a chance to have the effect of yesterday 'hit' and tell me what the muscles feel like today.  (often a ten to twelve hour turnaround on pain there)  I don't think the poor little chicken will make it, she seemed a bit more deflated yesterday even with drinking the bit of yolk I gave her and more antibiotic water and a warm wipe down instead of the soak that I thought might have been worse for her the other day - but mostly the left leg that was hurting her still looks fine but she isn't putting any weight on it at all now that I can see.

handcrafted meditation

 

I do a lot of handcrafts, still, even now.  My hands often hate me for it now, but still - I press on, although sometimes a project will sit until I can take the 'balancing point' again between I have to do 'other things' (like driving, etc) with my hands that are more pressing than this.

 That sounds a bit depressing, but it's not -really.  It's a nice thing to have 'in my back pocket' to do in the middle of the night or when I need to think something over.  I'm not solving deep math problems or physics or etc.. but I do let my mind wander far and deep and wide and sometimes that 'doing nothing while doing something' is valuable beyond compare.

 I do tend to use these things - washcloths, and bags, and baskets, hats and scarves and mittens.  They always get used somewhere.  And I do like the 'encapsulated time' effect I also have with items I have made.  I can remember where I was, some of what I was thinking - maybe a movie that was on, by looking at the work.

 A handful of washcloths in different cotton and linen yarns - and a crochet hamper basket, because FB keeps advertising one to me and I scoff and say 'if I wanted to - I could make something as useful, maybe not as 'chic' as that one - but it would be mine.