Tonight I want to talk about the expectations of people around you when you're a #spoonie.
Especially financially.
We’ll be doing so alongside a story. So you’ll see why this is on my mind.
In my former life, I was a lucky spoonie. I ran two businesses. I don’t like to talk about how much money I made.
Let’s just say I sent my mother money overseas at least once a month & was the primary breadwinner when she came back.
So my heart was heavy when I went to talk to my mother. I had to tell her I was going to bring in even less money than I have been for a couple of months.
Now, I have never truly stopped working. The way my biz was set up, I can make a FT income in 10 hours a week. I outsource. I’m a freelancer but I’m a Boss freelancer.
About 10 years ago I started having chronic migraines. Slowly drifting from once a year to at least twice a month.
In 2016, I was diagnosed with a chronic cancer. In their investigation they found I have mild RA & ME/cfs, also known as fibro.
THROUGH ALL OF THIS I WORKED. I wasn’t balling like I was.
I don’t travel once a month like I did.
Mom had to go back to work to close the gap, 3 days a week . & I want to be able to re-retire her. But.
I’m still sick. I have a new illness I’m navigating.
And there’s the chance the cancer isn’t quite inactive- I’m throwing up some very non-remission numbers & B symptoms.
So in light of all of this, when I revealed that, though I would still be paying my share of bills & taking care of the kids, my income was going down?
I don’t know I just wasn’t expecting this reaction.
Her reaction was a conversation about whether I should get a job and whether I’d be able to resume taking care of most of the bills.
If you know me? You knowI love my Moms, even when she gets in my last nerves. She’s in good health. And she has a point - what happens to everyone else if she suddenly can’t work?
But
I am
Still
Sick.
So I’m thinking about how I set up this Ms Moneybags perception in my family. How did I, a single unmarried person, set these kind of expectations?
And after all the constant & repeated discussion of my health, after her comin to the oncologist with me, how did “let’s run every test known to man” translate to her as”well you’re better now.”
How do I break it to her that I’m not hanging around the house because I don’t know people out here? Is she really not getting that I’m housebound & that it’s because I’m sick?
I thought she was getting it. I thought she understood that I won’t be magically fixed now that I’m going to the doctor.
But clearly not. So this is what I’m gonna do.
(If you find yourself in this situation, maybe wait to see my results before doing this.)
I’m going to sit her down with a third party, with my doctor if I have to, & explain to her that even though I plan to recover financially?
There’s chance of the condition I’m in now is the new normal.
We’re at the point where we have to kind of embrace it & work around whatever problems it brings.
She wanted to live in TX where my healthcare isn’t free. These are the consequences.
I’ve been at my #spoonie version of normal 9 days in November. Meaning most of the month at least one of my conditions was flaring. I’m having trouble adjusting.
This new stress is not helping. But I’m trying to see it from her side instead of bump heads.
In the meantime I have a nonprofit to start and a product line to re-work. If you’re interested in how it works out, I’ll be posting it to #myspoons update.
unroll please
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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.
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.