Three years ago this Halloween, my life changed forever. What started as unexplained fatigue became an ME/CFS diagnosis that reshaped everything—my career, my body, my future. But then came the plot twist I never saw coming: an IUD pregnancy that actually improved my symptoms.

In this deeply personal anniversary episode, I'm sharing the full story—from the Halloween 2022 moment I realized something was seriously wrong, to the shocking positive pregnancy test, the missing IUD mystery during my C-section, and how I figured out what probably happened (spoiler: menstrual cups and IUDs don't always play well together).

This episode is for anyone navigating chronic illness, making impossible decisions about their future, or wondering if the universe might know better than they do. It's about grief and building simultaneously, trusting your path when you can't trust your body, and finding gifts in the places you least expect them.

In This Episode:

• The Halloween 2022 turning point that marked my "before and after"
• What ME/CFS actually means (and why "chronic fatigue" doesn't capture it)
• How I learned to pace my energy and listen to my body after a lifetime of ignoring it
• The IUD decision that was supposed to be "responsible"
• July 2024's 0.1% surprise: a positive pregnancy test
• The scary lack of research on pregnancy with ME/CFS (and the 1/3 statistic I clung to)
• How pregnancy actually improved my symptoms instead of making them worse
• Taking the European vacation we'd canceled due to illness
• The C-section discovery: my IUD was completely missing
• The menstrual cup revelation and important PSA
• Life six months postpartum with baby Violet
• How chronic illness shaped JSM and made me a better parent
• What I'd tell anyone in year one of their diagnosis

Important Timestamps:

• [00:00:00] Introduction and overnight curls
• [00:03:00] Halloween 2022 - The moment with my mom on the couch
• [00:05:00] Getting the ME/CFS diagnosis
• [00:07:00] Learning to pace and listen to my body
• [00:08:00] Building Joyful Support Movement during this time
• [00:09:00] The IUD decision and family planning
• [00:09:30] July 2024 - The positive pregnancy test
• [00:10:00] Researching ME/CFS and pregnancy
• [00:11:00] Plot twist - Feeling better during pregnancy
• [00:12:00] The European vacation redemption
• [00:13:00] The missing IUD during C-section
• [00:14:00] PSA about menstrual cups and IUDs
• [00:15:00] Six months postpartum update
• [00:16:00] Gratitude and perspective
• [00:18:00] Invitation to share your story

Resources Mentioned:

Learn More About ME/CFS:

• ME Action Network
• Bateman Horne Center

Connect & Share:

• Join the Joyful Support Village
• Share your messy middle story
• Instagram: @joyfulsupportmovement
• Watch on YouTube

Products Mentioned:

• Shower chair on Amazon
• "I Have to Go Lay Down Now" sweatshirt

Mentioned in this episode:

Cubtail

Cubtale

Welcome to sharing the Middle where we share the messy middles of life.

2

I'm Lacey, your friend,

in the middle and guide.

3

And my claim to fame this week is

really mastering my overnight curls.

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I mean, I woke up like this and I

can say that because I'm doing a.

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Video episode with this today.

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So if you're hearing this in audio

and you want to go see me talk in per

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well on video, but not, you know what

I'm saying, uh, you can go to, sharing

8

the middle of YouTube to see it.

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And part of the reason why I'm

doing this is a video essay, video

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podcast, I don't know is because

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if you don't know me and

you don't know my story.

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This is a nice overview of where

we are and how we got there.

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So this past Halloween marked my three

year chronic illness anniversary.

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I've tried to come up with a better name

for it and I just can't seem to, so that's

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what we got Now, it's not like I got hit

with my chronic illness on Halloween.

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Halloween 2022 is when

I realized this is not.

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Little it was that my whole life

was changing and, and there was a

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before and an after, and I was in

the after without realizing it.

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so yeah.

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I would say in, I believe it was

like late August, early September,

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2022, I got sick with something.

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What it was, I don't know, it was not

COVID or at least that's what the.

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Tests kept telling me

and I got kind of better.

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But never fully better.

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I remember I was traveling for

work and I went to Boston and I

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was so excited to go to Boston.

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I was going by myself.

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I was like, had this whole plan

to like walk around and all this

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stuff, and even though I was better,

I wasn't really fully better and

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I couldn't do as much as I wanted.

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So I just kind of stayed in that space

for a while and then I continued to.

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Get worse.

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And there are like little, like, you

know, when you look back at at events,

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you can see certain plot points.

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So like, my husband and I, we went to

see a comedian, we saw Mike Bigley.

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It was great.

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We had so much fun.

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And then we walked around

in our downtown area.

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We lived in Cincinnati at the time, and.

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There was something called Blink, which

is this really cool, like light and

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music festival, and I thought I had

what was a panic attack during that?

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Looking back now, I don't necessarily

think that's what it was, Anyway, I just

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started having profound fatigue like.

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Could not get up.

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Fatigue.

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I had to take time off of work.

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I thought that I, like, remember I had

what I thought was an anxiety attack.

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I thought this is physical

manifestations of my anxiety.

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I couldn't figure out why I was so

anxious ' cause I didn't feel it.

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It was just a lot of those things.

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And then, I took some time off of work.

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I'm like, maybe if I eliminate

the stress of work, that'll help.

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And I didn't, It's trick

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I know I can't handle

going out with my kids.

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They were like 18 months and three-ish

at the time, And so I had my parents

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come down to help my husband And

I'm laying on the couch after they

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get back and my mom looks at me and

she's like, this kind of reminds

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me of what happened to your sister.

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Now my sister has her own chronic

illness story and all that stuff, but

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she also kind of had a before and after.

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And when she said that it hit, ' cause

my mom's a very pragmatic woman.

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Like she's a.

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You get shit done kind of lady.

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And so for her to step back and be

like, I think this is bigger than you're

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letting yourself believe, that was huge.

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The next day I got up, I tried to do

some work from home and I couldn't

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lift my arms and so that's why it

was just such a, a marker for me.

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Of what was going on.

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And I started having periods of

what felt like paralysis because

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I've had passing out before.

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not to brag, I have a whole host

of other things wrong with me.

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My husband liked to joke that I was

the healthiest sick person he knew,

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or the sickest healthy person he knew.

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And this passing out experience,

I had a lot of the same.

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Warning signs.

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But when I would pass out,

I would still be conscious.

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Like I could hear what was happening.

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I just couldn't move my body.

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So those happened more

and more frequently.

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I started having more I, I got

these like facial ticks one time.

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It was like whole body ticks.

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We went to the hospital,

nothing came of it.

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' cause unless you're dying, they

can't really do anything for you.

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I started seeing specialists,

cardiologists, neurologists.

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a rheumatologist and as any chronically

ill person trying to figure out what's

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going on, would tell you, all these

tests are coming back that everything's

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normal and you're not normal.

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I will say some of my tests were

coming back off, especially like

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lymph nodes or, Immune system being

something going on there, but not

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enough to really worry about anything.

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We did MRIs.

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I did have one doctor say

after all these tests, well at

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least we know it's not serious.

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And I just, I had this moment

of like, I've lost my life.

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Like at this point, I could

not work consistently.

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I basically lost my job because

I couldn't, couldn't work.

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luckily my, my husband has been

able to support us and that kind

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of stuff, but severely changed our,

our life and, and level of comfort.

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We did cancel a trip that we had planned

that was like a once in a lifetime trip,

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and ultimately through process of

elimination, I was diagnosed with.

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Myalgic encephalitis, I can never say it.

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Or chronic fatigue syndrome.

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And really it was a process of

elimination, but I mean, all of

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the diagnostic criteria for it,

which means, profound fatigue.

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And when I say fatigue, I'm not

just like, oh man, I'm tired.

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I, when I have my CCFs

or me CCFs, fatigue.

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You know when you have the flu and you're

like, my body is so tired it can't move.

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It is like that, but like all the

time, there's sleepy, tired, and then

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the level of fatigue that I'm talking

about that's like, no, I can't move.

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Post exertional malaise, which is

its own little like mind fuck where

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it is increased symptoms, but it's

24 to 48 hours afterwards and you

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essentially have what feels like the flu.

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But you can't, like, it takes you a

while to figure out what triggered it.

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Trust me, figuring that stuff out.

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Banana pants, brain fog,

orthostatic intolerance, which

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basically means like standing.

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So one of my previous conditions,

you heard me mention passing out.

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I.

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I was officially diagnosed with

Basov VGO syncope, which just means

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I have a tendency to pass out.

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My body's a little dramatic.

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now that increased so I can barely.

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Heat is all a big old problem for me.

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showers are like the devil because

it's just heat and standing up.

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Two things to make me wanna pass out.

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I bought a shower chair and that

changed a lot of things for me.

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So, yeah.

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postex, exertional, orthostatic

intolerance, pro profound fatigue for

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over six months, which I did have that.

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A lot of, chronic fatigue

syndrome folks have a before

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and after, like me long COVID.

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A main component of it is M-E-C-F-S, so.

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If that gives kind of a realm for you

anyway, just all these different things.

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And the hard part about AM E CF S is

it's a little backwards in that you would

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think things like gradual exercise and

that kind of stuff would make you better.

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Nope.

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It actually can make you worse.

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And so the biggest recommendation

that they can give you is

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called pacing and it's learning.

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What your body and your energy can handle.

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And it wasn't until I really stopped

trying to go to specialists and all that

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stuff, but stopped and tried to learn

to listen to my body because I found

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out through this process that, I had

trained myself to not listen to my body.

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I had spent my entire

life not trusting my body.

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You've already heard me say how

I was sick and things like that.

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I, I, I was constantly

second and guessing.

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The feedback I was getting from my

body, I still struggle with this

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three years later, by the way,

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proactively laying down, figuring

out how to make as much of

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my life as easy as possible.

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Eliminating barriers.

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All these things were so important.

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Now I wanna pause here.

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During this time, I, built a

business with my dear friend Sarah.

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We have the Joyful Support Movement, and

I started sharing the middle and writing

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about it with the middle, and that became

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such a necessary part of my life.

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Because I could still be productive

in ways that I could figure out

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how to meet my own expectations.

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I worked with this wonderful woman

named Carrie, Carrie Downey of

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Clarity Company, and was able to

do some contracting work for her.

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So we were able to have some

income and life got normal.

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We moved in that time.

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My husband got a new job.

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We moved.

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I am building this business with

my new dear friend Sarah and I

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have never met in person before.

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This still blows my mind that she is

probably outside of the people who live in

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my house, the person I talk to the most,

and I've never met her in person before.

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And we have a business that I'm so

proud of together and our relationship

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is what really, launched that business.

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I.

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hated being pregnant.

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Remember, I have two kids at this

point, and I hated pregnancy so much,

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and pregnancy was the closest thing

to how I was feeling during this time.

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It was the passing out, all that stuff.

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Everything got worse.

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I threw up all the time.

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It was awful.

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So my husband and I, even though

we literally, I literally.

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Had my daughter, my second

child, and looked at him and

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said, yeah, we'll do this again.

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' cause we knew we wanted a third child

for our family, that it didn't feel

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complete, but we kind of looked at

each other realistically and said, Hey,

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it does not feel responsible to have

another child with our financial

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constraints, with my energy constraints,

all of those different things.

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So I had an IUD, and we just

kind of went from there.

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Then I started to feel nauseous.

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Was it July 20, 24 at this point?

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And I was like, there's

no way I'm pregnant.

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But if you are a woman

with anxiety, you may also.

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I just worry that you're pregnant all

the time because it's been like drilled

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into you that you could get pregnant.

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A long time ago bought this giant pack

of cheapo pregnancy tests like a hundred

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so that I could take them whenever this

happened to assuage my nervousness.

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And for some reason, my husband

was home a little early from work

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before he went to go get our kids.

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And I said, I'm gonna take this test.

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And he was like, whatever.

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And I took it and it was positive

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and we were both shocked because I

had an IUD that is one of the most

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responsible ways of preventing pregnancy.

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I, you know, you can't

really fuck that up.

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I was pregnant.

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Now, he did not believe me at

first, so he went and got multiple

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pregnancy tests and they all came

back the same and I was pregnant.

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I wish I could like, have words to explain

what that feeling was like of scared.

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Right?

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Like, how the hell did this happen?

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I mean, I know how it happened, but,

you know, but also like excited, right?

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I, we wanted a third child.

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I terrified, right?

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'cause if could there be

complications because of the IUD

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and all this different stuff.

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And so we started our journey of

figuring life out with a lady with me.

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CFS being pregnant.

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When I am faced with a challenge

that I cannot do anything about, my

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strategy to deal with that is just

to research the crap out of it.

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I wanna know everything that I can so

that when I can do something, I'm ready.

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I did research about women with ECFS

in pregnancy, and the research is very

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little to start with, but the most

helpful thing that I read was that you

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essentially have the chance of your me

CCFs getting better, staying the same.

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Or getting worse, literally a third

of women that they studied got better.

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A third of women stayed the

same, a third of women got worse.

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And so knowing me in pregnancy, like

I already thought this was going to be

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the most challenging time of my life,

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and I was just aiming to be the same.

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I didn't need to be better.

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I just needed to be the same.

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I needed to not be worse.

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As we get into my pregnancy.

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I actually did start feeling better.

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My husband and I remember that, trip that

we had to cancel when we had to reschedule

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it or we would've lost a bunch of money.

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And so we went on our European vacation

when I was four months pregnant, and

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I think the universe's timing was

part of it because I did better than

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I probably would've done without

being pregnant, which blows my mind.

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I was still me as a pregnant person,

which is still awful, but it worked out

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and I ended up being okay and feeling

like I really had gamed the system right.

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I wanted a third child, but I

was trying to be responsible.

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And here I was having my third

child having done everything I was

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supposed to do, but still having it.

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So I couldn't even be mad.

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I am getting emotional

because I'm just so, ugh.

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In March I had my daughter Violet,

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and she.

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It is wonderful.

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She's the light of this household.

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She's a star.

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Everyone loves her,

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and it has been just the greatest gift

because not only do I have this beautiful

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baby who's like the cutest baby in the

world and delights everyone around her all

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the time, but also breastfeeding can be a

time where women with me CCF s do better,

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and I am exclusively breastfeeding.

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And I will tell you, for the

first four or five months I felt

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better than I'd felt in years.

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Now, Miami ccf s symptoms have slowly

been creeping back in a bit more.

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I have to be more careful.

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I have to get back to my pacing.

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but here I am three years

later, I have a beautiful baby.

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That I never thought I would

have because of this illness.

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And not only did I get the gift

of this baby, but I have the gift

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of feeling a little bit better.

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I had the gift of that trip and

so I'm just so thankful to the

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universe for that experience.

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Now if you're wondering what happened

to the IUD, that's a great question.

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the IUD disappeared,

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I learned later, and this is

a PSA for anybody else that.

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You do have a higher chance of

expulsion of a, IUDI almost said USB.

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I mean, you're supposed to

inject USBs, but not like that.

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Anyway, there's a higher chance of

expulsion if you use menstrual crops

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because menstrual crops use suction

as a way to create a seal, and

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sometimes that can pull on the IUD.

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Our working theory is that when I

use menstrual cup at some point.

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The IUD came out with it, which

I guess just speaks to how

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intense my periods must be.

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But I, I will say we were traveling

when I had my previous period,

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you know, when you're traveling

you're not paying attention as much.

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It must have happened then.

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I truly believe it happened

then, and then I got pregnant.

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'cause that's kind of how.

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The other two went as

we are fertile people.

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so yeah, so just try out

menstrual discs instead.

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That's where you're at.

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we did decide that this

cannot happen again.

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So I did have a c-section with

Violet, which meant that I,

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while they were in there, I asked

them to, why don't you just.

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Sear some stuff off and

my tubes are not tied.

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A vasectomy too, because this could happen

to me again, because that's who I am.

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It's not gonna happen to him.

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My husband will be getting

a vasectomy soon ish.

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If you would've told me.

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I will say three and a half years ago

at this point, this is where I would be,

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that my chronic illness would give me

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the opportunity, we'll say, to become the

person that I always thought I could be.

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That like voice in the

back of my head about.

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wouldn't life be so cool if you could

be like a writer and live to your

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own schedule and do your own things?

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If you would've told me two years

ago that I was gonna have a beautiful

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baby and that it would improve my

quality of life and not make it worse,

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don't think I would've believed you.

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I'm so.

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I'm grateful for this experience,

but I also wanna recognize this

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I need that to be very clear.

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I would not wish this on anyone.

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Would I have created sharing the

middle and the joyful support

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movement without my chronic illness?

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Probably not.

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I'm not, I, I don't know if

I would've been that brave.

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I think now I could say that I

would've been that brave, but.

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Now I could be that brave

without the chronic illness, but

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before I don't think I could.

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I was so focused in on what I should

be doing by other people's standards

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and what life should look like, and

the chronic illness really knocked

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me outta my ass and said, Nope, you

gotta figure out a different way.

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Anyway.

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Is it working?

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I don't know.

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Maybe, hopefully it's working for

me, I would like for it to work for

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more people and for it to be able

to support my family financially.

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And it's gonna happen

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because I still don't think

I can work traditionally.

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I need to be able to have the flexibility

to be like, Nope, I can't do that today.

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And that's not fair to coworkers

What I'm creating can do that.

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And I'm hopeful that it'll make

us money to be able to live

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and not worry like we do now.

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But that's okay.

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Yeah.

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Three years man.

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There's been a lot of other titles

during this time that I've come

331

to, own, like, yes, I am disabled.

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I have an invisible disability.

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My condition affects my day-to-day life.

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That's disability.

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It took me a really long time to be able

to say that because I didn't feel like I

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was bad enough, and that's not helpful.

337

I mean, do people have it worse than me?

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Absolutely.

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Look at me right now.

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I'm sitting here.

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I look great.

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I have a baby.

343

I am still scared.

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You know, I'm still breastfeeding

Violet's, almost eight months.

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We'll probably at least go

a year with my other two.

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I went 13 months and they like weaned

themselves, but I wasn't, I was pumping

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part-time and breastfeeding part-time.

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And this time now I'm breastfeeding all

the time, so it's a little different.

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I am a more empathetic

and thoughtful parent.

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I'm not the energetic parent that I

thought I would be or wanted to be like.

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I so thought I was gonna be classroom

mom and I can't, I can't do that.

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So that's been hard,

but I'm figuring it out.

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This whole experience too

has really just shown me

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no matter what your belief is,

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and even if it is coincidence.

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I love and appreciate the opportunities

and the humor that the universe

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has had for me in this process,

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and that that middle journey

that I started three years

359

ago is still very much true.

360

and at the end or my, before, I thought

that that was an end, but it was really

361

just a beginning to something new

and just the giant middle of my life.

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anyway, that's sharing the middle

and that's a three year lease.

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Update my story.

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I have spent the past three

years sharing my story so that

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other people could feel seen.

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So that maybe if you're in the midst

of something, even remotely close, you

367

can see somebody else going through it.

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It's not pretty, I don't have like a

checklist of like, this is what you do.

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Like, no, you have to figure it

out, but we are in it together.

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And we can figure it out.

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And that's what we're trying to build

over the joyful sport movement and

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the Village is a place for us all to

be able to come together and do that

373

because it would be very easy for me to

judge myself, and I have, and I still

374

do, but creating a space for no shame.

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Has gotten me to the most mentally

healthy place I have ever been and that

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I'm so proud of so much of the work that

I've done on myself in this process.

377

That while my body may not be

as healthy, my spirit, my mind,

378

so much of me is thriving.

379

My family's thriving.

380

And this is a really lovely moment for

me to be able to just pause and be so

381

thankful for the messiness of this middle.

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And I, I hope the mess continues

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If you have a messy middle you wanna

share, you can always, go to our

384

website@joyfulsupportmovement.com

385

back slash submit.

386

We've got some different forms on

there, and one of them is being a guest.

387

In sharing the middle, share your

story, help somebody else feel seen,

388

make sense of your own experience.

389

that's been one of the biggest things

is just by sharing my story, I've

390

made sense of my myself and it has

gotten me to where I've gotten to.

391

So articulate.

392

Anyway, thanks for sharing the middle

with me today and for hearing me Yap.

393

About my experience.

394

I hope you were able to

get something out of it.

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I know I did, so thank you.

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And very important.

397

I have to go lay down now.

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This was a lot.

399

So that's a sweatshirt that

I made that I am proud of.

400

I have to go lay down now.

401

And that's how I manage chronic illness.

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Uh.