shaking myself (very gently) . being in pain takes a lot of energy!!!!!! being in pain is exhausting!!!!!!! you are not lazy or weak because you need to spend so much time resting, this is your body coping with how much pain you’re in literally 24/7!!!!!!!!!
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If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.
Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.
And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.
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I've always had chronic fatigue. I remember being twelve, and an adult mentioned how I couldn't possibly know how tired they felt because adulthood brought levels of exhaustion I couldn't imagine. I thought about that for days in fear, because I couldn't remember the last time I didn't feel tired.
Eventually I came to terms with the fact that I was just tired, and I couldn't do as many things as everyone else. People called me lazy, and I knew that wasn't true, but there's only so many times you can say "I'm tired" before people think it's an excuse. I don't blame them. When a teenager does 20 hours of extracurriculars every week and only says "I'm too tired" when you ask them to do the dishes, it's natural to think it's an excuse. At some point, I started to think the same thing.
It didn't matter that I could barely sit up. It was probably all in my head, and if I really wanted to, I could do it.
When I learned the name for it, chronic fatigue, I thought wow, people that have that must be miserable, because I am always tired and I cannot imagine what it would feel like if it were worse.
Spoiler alert, if you've been tired for a decade, it's probably chronic fatigue.
Once I figured that out though, I thought of my energy as the same as everyone else's, just smaller in quantity. And that might be true for some people, but I've figured out recently that it absolutely isn't true for me.
I used to be like wow I have so much energy today I can do this whole list for sure! And then I'd do the dishes and have to lay down for 2 hours. Then I'd think I must gave misjudged that, I didn't have as much energy as I thought.
But the thing is - I did have enough energy for more tasks, I just didn't go about them properly.
With chronic fatigue, your maximum energy is obviously much smaller than the average person's. Doing the dishes for you might use up the same percentage of energy that it takes to do all the daily chores for someone else.
If someone without chronic fatigue was to do all the daily chores, they would take breaks. Because otherwise, they're sprinting a marathon for no reason and it would take way more energy than necessary. We have to do the same.
Put the cups in the dishwasher, take a break. Put the bowls in, take a break. So on and so forth. This may mean taking breaks every 2-5 minutes but afterwards, you get to not feel like you've run a marathon while carrying 4 people on your back.
Today, I had a moderate amount of energy. Under my old system of go till you drop, I probably could have done most of the dishes and wiped off the counter and then been dead to the world for the rest of the day.
Under the new system, I scooped litter boxes, cleaned out the fridge, took the trash out, cleaned the stove, and wiped off the counter and did all the dishes. And after all that, I still had it in me to make a simple dinner, unload the dishwasher, and tidy the kitchen.
It was complete and utter insanity. Just because I sat down whenever I felt myself getting more tired than I already was.
All this to say, take fucking breaks. It's time to unlearn the ceaseless productivity bullshit that capitalism has shoved down our throats. Its actively counterproductive. Just sit down. Drink some water. Rest your body when it needs to rest.
There will still be days where there is nothing to do but rest, and days where half a load of dishes is absolutely the most I can do. But this method has really helped me minimize those, which is so incredibly relieving.
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why is it so hard for able bodied people to believe that doctors are sometimes just incompetent? you realize doctors are people, right? people that can be bad at their job. that happens sometimes. they don't know everything because there's a piece of paper on their wall that says they're smart, actually. they can sometimes be wrong, actually. they can sometimes cut corners and take the easy way out, actually. they can sometimes hate their job and make that their patients problem, actually. doctors aren't all saints who do everything right the first time. please stop invalidating disabled people when they complain about their terrible treatment at the hands of medical professionals. please stop putting the feelings of doctors over the lives of their patients.
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