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 able to afford medication and food, I need to work.
Right now only part time but it means getting up at 6:30 am to help with the kids so that other family members are able to pick up the household slack from my missing income as the former main breadwinner.
Sometimes I can only finish working after 9, due to the nature of my work. Sometimes I just can’t fall asleep until 4 am.
I have mild anxiety, so sometimes it’s repeating thoughts. But for the most part, when I can’t sleep until early in the morning it’s insomnia or sleeplessness, brought on by pain, which some of us call painsomnia.
So I need sleep and rest.
But I can’t afford to sleep and rest unless I work more. But I can’t work more because I’m not getting enough sleep and rest. But I need sleep and rest.
Do you see the problem?
I’m now stuck in this pattern of not being able to get enough
- quiet time to create
- rest time to recharge from working
- work time to make enough to be able to afford to rest more
- money to afford my medication that helps my body relax so I can sleep
- money to afford my inhaler ($170, not covered by insurance until I meet my deductible)
- sleep to reduce my anxiety over not being able to sleep (LOLSOB)
- sleep to have the energy to work enough to be able to afford to rest more.
Now I’m a bit lucky in that I have a company where I can work part time and earn a full time income. Three weeks of full time work would help me create a world where I can live on residual income about half of the time.
But how to get to that world from where I am is super frustrating.
I have the plan together.
But how to get the help to pull it off when I can’t even muster up the energy to finish the list of the several hundred tasks that need to take place?
Being serious. I have been working on completing that list for a year so that I can
- outsource tasks that others can do without training
- train VAs to do 30% of the rest once they are trained
- automate as much of the rest as I can
- Do the other 15 – 25% of the work myself.
So. This is the best case scenario of what spoonies like me go through. When you see our Patreons and Cash me links and PayPal emails, this is what we’re working toward. Or in some cases, payment for the work we’ve done in the community for free, which in our well days we never thought we needed to be paid for.
I posted the thread below a few nights ago to Twitter. Follow the link or read more below for more.
Thread Reader is happy to present an unrolled Twitter story by @Tinu
Tonight #myspoons are perplexed, as they often are. Behind, feeling broken & facing the ever-present question: should I try or rest? It’s the central debate of the #spoonielife. We need sleep but #painsomnia. Need rest but life needs doing. Do we