My son and I both had rough days yesterday, and right before bedtime,
my wife and I were talking to him about good days and bad days, limits,
and why at a certain point we all start to feel overwhelmed and fall
apart. I considered bringing up spoon theory, but thought it would be a bit too abstract for him. So instead, I started talking about about Captain America’s shield.
Because
in general, every day has good stuff and bad stuff. And just like Cap,
we all have a shield we can use to deflect some of the bad stuff and
keep it from getting to us. But sometimes there’s too much stuff to
block it all, and Cap gets hurt. We all have bad days like that
sometimes, where there’s just too much.
What makes life trickier
is that your shield can change size. If you’re hungry or overtired, your
shield might shrink down to the size of a saucer, which makes it harder
to deflect anything. On the other hand, if you’ve had a good night’s
sleep, gotten some good exercise, and had fun with your friends, you
could end up with a super-shield that’s as big as you are. (Or even a
full suit of Iron Man armor. We went off on a tangent at this point,
wondering why Tony doesn’t go to Wakanda and make an Iron Man suit out
of vibranium.)
As a metaphor, Cap’s shield worked well. We talked
about why something might not bother you one day, but the same thing
might really get to you on another, depending on how big your shield is
that day, and how much else you’ve been trying to deflect. It also
seemed to be a good way of talking about self-care, and ways to
strengthen your shield so it wouldn’t shrink or crack.
Don’t know if it will be helpful to anyone else, but it was a good conversation with my son, so I figured I’d put it out there.
Oh god, this is absolutely incredible. There are plenty of resources that will tell you what to check in on when you’re feeling poorly, but this is the only one we’ve found that actually takes you through them step-by-step, with no executive function necessary! Bookmark this and reap the benefits 🙂
Did it and it didn’t help me any, which made me feel kind of angry. Which I guess is helpful? It makes me laugh anyway XD
You have to prepare to be emotionally ready to handle normal test results when you’re secretly hoping the tests will show something and you’ll have an answer.
Nurse: The tests were clear! 😀
Me: 🙂
Me: 😐
Me:
Me: 😦
Me: Well…. so what could it be? What… what do I do now?
Ten years ago, I was about to get sick I cannot remember it I cannot remember waking up at 7am, 5 days in a row Week after week after week I don’t remember if it was easy but I remember it was possible I cannot remember when nothing ached When if I didn’t walk, it was because I was lazy Not because I couldn’t
I cannot remember When taking a shower Was relaxing Instead of exhausting
I cannot remember When I wasn’t a burden When I was fun And energetic And up for anything And no one had to slow down or miss out Because of me
I cannot remember How it is to remember When I didn’t need to write anything down And didn’t break promises And didn’t forget my own name When I knew all the words I needed When everyone said How eloquent I was I can remember everyone said it But I can’t remember being it
I cannot remember Being upright all day And never lying down Or counting the hours From painkiller to painkiller
I cannot remember Reading page after page for hours For fun And understanding every word Without reading a line twice over Or three times, or five And without feeling like a failure
I cannot remember No pain I cannot remember it What did I do? Did I walk faster? Or further? Did I stay out all night? Or did I just sit around? Without knowing that one day Just sitting around would be all there was And even then The pain wouldn’t end
I cannot remember Having energy instead of pain I cannot remember Concentration and memory And still knowing how my sentence had started When I got to the end
Two thirds of my life, I was healthy And I cannot remember
you know how when you drive your car into mud, you can rev the engine and switch gears and jam the pedals all you like, but the car won’t go anywhere because there’s no traction? the wheels just go around and around in the mud no matter how hard you push the gas pedal. you have to pile rocks and sticks under the wheels to get the car some traction to get going. if you don’t change the conditions the wheels are turning in, you’ll just be sitting in your car all damn day, wasting your gas.
in this case executive dysfunction is having mud under your wheels and the rocks are medication or therapy. you don’t need to ‘try harder’ or spin the wheels faster, you need actual legit help to fix the road conditions.
for people with a chronic condition, life is one long washed-out mud lane to drive across. so being told ‘just go faster!’ or ‘switch gears!’ by people driving paved streets is not helpful. executive dysfunction isn’t the laziness of not wanting to put in the effort, it’s having no traction for that effort to get you anywhere.
People love to talk about whether or not disabled people can work
but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)
Dead silence. Nobody cares.
File this under, oh you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.
This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours of activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.
Far too often abled people see the things they do easily as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.
reblog bc the non activities thing seems really important words
I get X number of pain-free steps per day right now, which means that, for large conventions (like SDCC), I need to be in a mobility device. I had someone ask if I used up my steps every day before transferring to the scooter, and look surprised and a little horrified when I said “no, I save them so I can go to the bathroom unassisted.” Like, they had never considered that walking is involved in peeing.
!
Reblogging for the important point that the term “activity” may mean something very different and much broader for a disabled person with a chronic pain or fatigue related condition compared to its meaning for a non disabled person. If you’re tired enough, simply sitting up in a chair rather than lying in bed is an activity that drains energy otherwise usable for other things. A thing I knew from other people with pain and fatigue related conditions, but worth reinforcing for followers who didnt know or had forgotten.
I think one of the worst parts of having a chronic disease is how it sometimes just breaks you.
You can have several bad days in a row and handle it fine; then one day you lose it because you’ve gone so long taking it that you eventually get to a point where you just can’t do it anymore.
You’ll try to open the dryer door and can’t.
You’ll be cold and won’t be able to get warm. The kind of cold where you can’t get warm so you want to put your blanket in the dryer for half hour but you can’t open the damn door.
You feel grateful for any help you have, but you wish you didn’t need it in the first place.
No one tells you when you get sick that you will have days that don’t just test your pain levels or your patience, they will literally test your very will to get through the day.
from the amazing heyatleastitsnotcancer.tumblr.com
[picture of a Siamese cat’s head against a triangle-sectioned background with many shades of blue. Top line of text reads: What I’m worried about: Being in agony the rest of my life || Bottom line of text reads: What I’m not worried about: Getting addicted to prescription pain meds]
Honestly? This. I’ll take the chance to escape having NO quality of life whatsoever.
Holding the Bowl 