It’s hard out here for a spoonie. Because of Painsomnia, sleep is a struggle. Yes, we’ve turned off our devices. Why did you see me tweeting at 2 am? Because after two hours of lying in pitch black agony, I got fed up with trying to sleep, and got out of bed. Helps avoid mentally associating my bed with sleepless agony, at least a little. And every little bit counts. I was also either venting about my sleeplessness, which also helps distract from the pain, or consoling a fellow spoonie who is having repeating thoughts or is asking for distraction while thoughts of suicide pass. Yes the pain is that bed. Yes we’ve been to the doctor. No, not only can’t we get more pain medicine, our meds have been reduced because of the opioid crisis. Yes, even though the crisis is getting worse, our prescription medication that we rely on to have a normal life and are not addicted to are still extra-restricted. No, medical marijuana is not legal in Texas. So, having said all that, this isn’t even about the pain itself right now. It’s about the vicious cycle of exhaustion that the pain causes. As a chronically ill person, sleep is vastly more important. On 8.5 hours of natural non-drug-induced sleep I can be almost normal for half a day. Or an entire day if I eat, medicate, stretch and rest at the appropriate times. Which is harder to pull off than you think. But to be

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