For Spoonie Entrepreneurs – when working against your body is enough

We’ll be back to the #60to15 series shortly.

Today I want to talk about a struggle that I’m having that I’m starting to think is common to all spoonie entrepreneurs.

As you probably know, I’m both a spoonie and in cancer recovery. While my oncologist hasn’t declared remission, the Lymphoma I have is controlled.

So I’ve been attempting to go back to my regular schedule. Because eaters gotta eat, you know?

This requires money. So biz owners gotta biz. Here’s the problem.

Image credit: Fanette

In my journey back to “normal”, my main struggle has been not getting full restorative sleep.

Sleep is not optional for me.

As a spoonie, I can’t join the rest of the American nation’s brag-a-thon about how little sleep I’m getting.

If I don’t sleep 7 hours, all my conditions get worse at the same time.

From smaller things like weight gain to bigger things like my post-recovery cancer numbers going in the wrong direction.

I used to be famous for saying “I’ll sleep when I’m dead” as a 20-something.

Which was a lie, looking back – yes I’d grind like a maniac. But after a few years of 20 hour work days, I started making enough to sleep 6 – 8 hours. At which time I returned to peak health.

The public disclosure that you have insomnia brings its own host of fun problems, not the least of which is a stream of well meaning advice.

The unsolicited and ineffectual sleep advice rarely applies to spoonies

Spoonies wish you would keep your advice - unless you're also a spoonie.
SerenaWong / Pixabay

If you have a spoonie in your life you need to understand: we aren’t just laying around hoping for the best.

We. Have LITERALLY. Tried. Everything.

Twice.

Offering us sleep/pain advice comes across as well as your significant other’s parent explaining why you’re a bad spouse.

Our lives, situations, pain, sleep issues are different from able people. You and your able body that can be fixed when something goes wrong are not qualified to ablesplain how we can get better.

Either we’ve tried what you’re advising or …

No, actually there’s no OR — we’ve tried your advice by the time we disclose.

We just want to vent because that at least helps relieve the mental or emotional pressure.

Another spoonie will chime in so we know we’re not alone.

Or an able friend will listen to our experiences and we’ll feel like we’re seen, heard, felt.

It helps a little.

So please refrain from telling us the following:

Turn off your devices at night!

Which I don’t even turn on unless I’ve been laying in bed two hours in pain? Those devices?

Try ZQuill or some other OTC sleep aid that combined with our regular meds might kill you in your sleep!

I have access to a myriad of sleep aids. Falling asleep isn’t as big of a deal as staying asleep. The pain wakes me up and keeps me up.

Also, mixing pain meds with anything without running it past your pharmacist/doctor is also known as unplanned death.

No thank you please.

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Thanks for the love but there’s nothing you can do besides listen.

Hey. We spoonies know your advice comes from a good place.

You’re powerless to help.

You think, what if this happens to you?

How will you cope?

There must be hope so you give us some of yours via well meaning advice.

Listen. NAH!!!!!!

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It won’t work.

Don’t give us advice if we don’t ask.

Please, please, PLEASE don’t.

Because plumbers don’t ask roofers how to snake a drain.

It’s not about being above your advice or dismissive.

We’re just in a completely different knowledge category that we need you to either acknowledge you have no clue about or just stay out of it. And let us vent.

“But what if I know what I have to say is awesome?”

If you are simply BURSTING with an idea, there’s a simple solution – ask us if we want your advice.

If we say yes, we’ll listen with an open mind.

If we say no, we’re establishing a boundary. Respect it.

You can go post your big idea to your Facebook status. If you’re ready for us to read you the riot act on your own page about why not being a doctor but always having medical advice sucks.

To varying degrees these experiences with my health have taught me that sometimes I can overcome certain issues by sheer force of will.

But since those times are rare, sometimes you have no choice but to lean into the unconventional.

This time that means I’ve stopped fighting my body’s complete unwillingness to go to sleep when I want it to, and have returned to working around whatever the hell it wants to do.

Maybe once I’m getting the right amount of sleep in whatever way it comes, my body will heal itself to obey my pattern.

In the meantime? Folks will just have to deal. Including me folk.

I can’t take the extra meetings.

I can’t plan fun times out with friends.

I just have thug my way through, as my sister would say.

I don’t take this lightly.

It’s terrifying to go against the norm. I’ll come back to that in the next post, but for now, suffice it to say, creating your own completely unconventional solution is not a walk in the park.

Building a new normal that works.

Trying to sleep by counting sleep. Every spoonie is laughing hysterically right now.
Gellinger / Pixabay

My solution is now, in a nutshell, EFF IT. I’ve started to let my body sleep when it wants to sleep, work when it wants to work, rest when it wants to rest.

I’ll give you a little scoop on how that’s working out for me shortly.

In the meantime, fellow spoonies? I’d love to hear about your relationship with sleep and how it affects your work.