Some people are curious how not having my full course of meds keeps me from working full time.

This is where I'll start the story of #myspoons today.
Not that I owe them shit. But maybe you or a #spoonie squad member of ours might find it relevant or helpful.
So in a nutshell, the less pain I'm in? The more I can do.

"But Tinu" some y'all say, "If your work is mostly digital, aren't you good as long as you have a laptop & a computer connection?"

Haha nawl!
Yes, the bulk of my work revolves around research, writing & digital tools. But.

A- For best results I must be able to do these things consistently.
B- To be really successful I must write books vs articles, be interviewed, give speeches, talks, workshops etc.
Seeing me #onhere so frequently might give the impression that I'm up & about a lot. Not true.

Sometime my fatigue is so bed I don't bother to get dressed. Struggle to get to the rest room.
Not knowing when I might be well for the week? I can plan my week around a meeting or two. Or around one blog post deadline.

Not much more. Which is frustrating given that I come from a grind mentality.
What I can't do? Is increase my output or do everything myself, which I used to do before I thought I could afford help.
So before several sicknesses, with #chronicpain meds? If I needed more money I worked more.

If I couldn't do all the work I charged enough to cover the cost of more mini-mes.
After #chronicillness & #chemo with reduced meds?

A successful day is getting 8 hours of sleep, doing one work thing for two hours & being able to go downstairs to get my own meals.
With meds? Full time work & employing others.

Without meds? Part time work if I'm lucky & taking a month to produce what used to take 2 to 5 days.
"But Tinu" says friends trying to be helpful & me once to a friend more spoonied that I was. "Can't you do freelance writing/work from home jobs/disability?"

Nicki please tell them the answer...
Writers have deadlines.

Jobs need you to be available at certain hours or for you to produce a certain amount.

Disability is not like having cable put in. They might give it to you. They might don't. I'm on my third application.
There are some things I can do. Editing jobs where you are paid a flat fee & work as work comes in.

I'm recording much of my knowledge into a library. It's taking forever but pretty soon I'll have enough to feel good about charging for it.
But it's also bill time. First time U've been stressed since I had cancer. And I don't even have the energy to grind the way I did to run a GoFundMe or Patreon. Looking into Ko-fi.
A lot of people are feeling this pressure. Think of having the pressure of the 1st coming.

But on top of that your body feels like it ran a marathon when all you did was wake up. In terms of both pain & fatigue.

It me.
If the physical burden isn't enough, the mental pressure is overwhelming.

You try to will your body to move like it did before. It's simply not over.

So you imagine how satisfying it would be if your mind could get in a fistfight with your body.
So. Results with you or your favorite #spoonie May differ. But there are very good reasons why we take pain medicine. If we can get it.

The so-called #OpioidEpidemic took our best medicine away without preventing ANY addict deaths. Or providing reasonable alternatives.
In fact they turn what was not a bigger problem, percentage-wise, any other year.

And used it to criminalize addicts instead of getting them into life saving programs. Criminalizing those of us who/legit in the process.

#patientsnotcriminals
So now less of us can work.

More of us are in needless pain & the Ones of us who would respond to #MMJ?

Often can't access the medical care we need to be diagnosed.
Or can't afford $120 -$300 a month for the potency we'd need to address our pain.
Someone is benefitting from this mess. They need to pray I don't find any evidence.

Because I'll be at them into the light until we get our medicine back.
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More from @Tinu

Oct 6, 2018
In any era the theme isn't theain problem. Let's start with the word "breastaurant."
In a world where people need a job enough to have to use their bodies for leverage, #MeToo isn't the thing in the way.
It's basic respect for women as PEOPLE. Does this restaurant perpetuate rape culture? Probably. So do lots of places.

Can you have CLEARLY POSTED rules and security precautions to protect these women? Um yeah.
Read 10 tweets
Oct 6, 2018
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
Oct 2, 2018
Mayne I forgot the code mayne.

Too paranoid to unlock my phone with my face.
My mother's chain mail game is strong. I can't buy phones they open with my face cuz I might be beheaded.

I guess that's what I get for never forwarding these emails.
Also I never open the door for anyone because maybe they stole that uniform although how did they know when to come to my house Mom?
Read 7 tweets
Oct 2, 2018
Friends, Romans, Country ass folks? This week all #myspoons threads will be cross-postedto @WeAreDisabled.
It's a cool project you can learn more about at weatedisabled.wordoress.com -a snapshot of @disabled people's lives & experiences, hosted for a week at a time by various disabled people.
I'm also going to be re-postimg some of my old cancer posts from tinustuff.com.
Read 5 tweets
Oct 1, 2018
I know I have real depression. I know this.

Damn if coffee doesn’t help me more than hurt. #myspoons
I wonder if getting out of the habit of drinking coffee was a daft choice as a #spoonie with multiple fatigue conditions.
Once my body let me get out of bed today, I figured, let me get coffee while I'm up. And wow.

It didn't fix everything (I’m definitely depressed and need a therapist) but damned if I'm not actually getting things done for the first time in 3 weeks.
Read 6 tweets
Sep 30, 2018
I like #Ifeelbad.

I hate the title. It's also accurate given the explanation.

I love the Indian 1st gen lead. I lover her being an older woman in text. I like the nerds.
Did her neighbor just ask her to agitate her compost? I'll fight you. #ifeelbad
I love how her husband wanted her to pick the restaurant, schedule the sitter etc. For the date where HE was going to spoil HER.

As a reward for putting her needs aside for his.

It’s really 1971. We’re just in hell. #ifeelbad #EmotionalLabor
Read 9 tweets

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