I wonder who even listens or cares when I post about #ChronicPain outside the #spoinie and disabled community.

I really do.
Of course I know why I do it.

I'm trying to humanize people whose #ChronicDisease may not be apparent.

It's sad that humans don't naturally want to save an abstract life.
I know that hearing other people's story extends the life of #myspoons. So I share mine in hopes of doing the same for others.

And to be a part of #shareourpain & lots of other reasons.
But I also don't want to be a perpetual bummer. That's why I also share embarrassing & funny things that happen.
Then there's nights like last night. I made a thread full of typos.

And I knew I was on Twitter to distract myself from the burn in my legs & the dawning of a migraine.
I thought "I should write about this." But not only was I too exhausted- the pain overwhelmed me.
Think about that. I spent literally the entire day in bed. And I was too fatigued & overcome by pain to type about 100 characters, rest & continue.
I'd have never thought that was a thing 10 prevent 5 years ago. Being too far gone to send essentially a public text.
You never get used to a life like this. Because every day is a surprise. I woke up this morning able to immediately get up & pee. Which is rare.
And then I lay back down. In an effort to pre-empt agony. I have to take my first pill. And hope that if I rest during the half hour when it can be the only thing in my system?
Maybe my legs won't burn today like they did last night. Cuz I can't do last night again.
Last night was a mess. The kids realized I was up. The internet is down but the cable works. God bless them they'd rather try & watch a show that buffers every ten minutes in my room.
I love these kids.
So I felt the pain creating and I couldn't tweet. I let them come in. Because I miss our Saturdays.

That used to be my kid day. Feed my nieces & nephews & hang day:
God what a huge mistake.
I have been dealing with my pain so I have learned to manage my mood.

I have taught myself, in general, how to keep pain from turning me into an impatient monster.
I failed last night.

After an hour I had to kick them out of my mind because I didn't want to be mean to them.
It's another thing people who are fatigued or in #chronicpsin don't talk about...
You don't know it when your well. But not taking your crankiness out on people, & other social niceties that come naturally when you're well?

They take effort when you're sick all the time.
Luckily I had enough presence of mind to know that if the way a person is breathing irritates you? It's time to evacuate.
I felt awful after the kids left. Is this my life now? I have to drive away the people I love to spare them of me?
Even worse us knowing there are solutions, just out of your reach. Some tempting but wrong (mix pills with liquor). Some effective but illegal (Blue dream).
And of course, being able to get and take the right fucking pills.

I had a better life! But some bureauract at the @CDCgov thinks I shouldn't be able to live a pain free life.
So instead I have to wait until this pain to be too hard for my heart to take. Or for the pills that barely take the edge off to destroy my liver.
Thanks for nothing assholes. I don't know what else I can do. The pain is creeping back in right now. I'm terrified to face an entire day of it. Wish me luck.

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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

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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