Tinu Abayomi-Paul aka Empress of Twerk. NO DMs Profile picture
Writer. Speaker. Founder. “They Not Like Us” Black. She/her See link for help, NOT DM/tags #DisabledBlackTalk #MySpoons #OwCH #ForTinu 7025088468

Feb 26, 2018, 26 tweets

So right now #myspoons are waiting. I spend half my time waiting now that I'm chronically ill.

Let's talk energy conservation.

So first, the best I have ever heard what it's like explained was

🎥 The Spoon Theory by Christine Miserandino - this is where the #Spoonies Community stems from online.

In short, when I was well I never had to wonder how much energy I had to allocate. It wasn't finite.

Right now? I’m trying to recover enough from showering to eat breakfast. I’ve been up all night.

We’ll circle back to coping. (If you know all this just scroll down to the next Beyoncé GIF.)

But first let’s chat about what #Spoonielife is like. Imagine your phone is at 4% and you have three things you'd like to do. #shareourpain

Imagine that each of those things takes 2% of your battery. That is the daily puzzle of a #spoonie.

Now imagine that it takes a whole day to get your phone to a thirty percent charge. Some days it’ll charge to 50% or 12% for no apparent reason.

But you’re stuck with this phone for life.

And on the outside it looks like a regular smartphone.

So people still expect you to be able to be on full brightness and play iTunes while you browse the web & tweet.

Welcome to being a spoonies, the #fatigue edition. Given this situation, how do we get things done?

First you have to accept your situation. You can do two out of three things safely - some days that's just what it is.

True, you may have a reserve battery for emergencies or borrow a limited amount of tomorrow’s energy.

Just remember the result is often catastrophic. Do you really want to trade two days of bed confinement for this activity? Is it worth it?

Sometimes it will be. Day out with the kids. Save the kittens from a fire. Getting from the gate to baggage claim (even in a wheelchair.)

Second, just as we plan around having 24 hours in a day, so must we plan around our spoons.

Last week of every month I track my energy levels, food, sleep, and water intake, my mood and my activity.

Every few months I recheck during the peak of my cycle.

This helps me know when to schedule things. I can see when I tend to be the most alert & in good spirits. Sometimes being in a good mood matters.

In a nutshell, once you've tracked, you can plan.

Third, shortcuts.

If software can do a good job, use it. If you have people to delegate to or help, drop your pride & get help.

Discard or file todos that aren't priority.

Organize repeated tasks. Get into a routine & muscle memory will do half the job.

Fourth, schedule rest. That sounds loopy now but trust me. Having a calendar notification pop up and tell you rest will help you remember. And you might get more done.

Last, protect your energy. With all your heart and might. If you're tempted to push through? Unless you're on a deadline tied to livelihood money? Don't.

Don't ever push through. It's wack ableism internalized that makes you think you have to be a super-efficient profit center all the time.

I still struggle with this. Even through every time I have pushed through ended in disaster or likely triggered a dip in my health that coincided with a new ailment.

Don't push through. Rest, sleep if you can. You will get souch more done at your version of full power than you ever could running on fumes.

Welp. That's all my spoons for the day. Hope you could use them. Please feel free to reply with tips from your experience.

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