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invisiblechaosblog

Thank you @vitassium, for sponsoring this post 💙

Did you know that those of us with POTS are told to eat a high salt diet? We are. It’s also suggested we drink electrolyte drinks and take salt supplements.

Years back, I was on doctor prescribed salt supplements. My doctor didn’t warn me they were so hard on the stomach, and the first day I took them they actually made me physically sick to my stomach. For the months that followed, it gave me the worst stomachaches. When I had my follow-up with him, he confirmed that not everyone can tolerate them, as they can be very rough on the stomach for some. Some tolerate them with no problem— everyone is different!

That’s where @vitassium comes in for me. Specifically formulated for people with chronic illnesses like POTS, Vasovagal Syncope, Orthostatic Intolerance, and Ehlers-Danlos Syndrome, their products are actually backed by medical research and recommended by many doctors.

These supplements allow me to get my extra salt and electrolytes in, while being much more gentle on the stomach.

I like the FastChews and the electrolyte capsules myself, but they have an assortment of products and flavors to choose from for everyone and every taste.

They even have a way to get discounted products— by signing up for their Vitassium Club, customers from supported countries will get up to 25% off their products, and even free shipping on select orders. It’s free to sign up, so if you want to give their products a try, this is a great perk! Sign up at vitassium.com.

Let me know which Vitassium product you’ve tried & like, and which flavor you like best!

I wouldn’t say I’m “happy about it”, but I

I wouldn’t say I’m “happy about it”, but I’ve definitely come to terms with it, and I’m happy to be able to share my own experiences to help others feel less alone. I’m happy to be involved in a community of awareness and advocacy, and I’m happy I can help others. If I can help just 1 person, then that’s a success. ❤️

If you need me I’ll be huddled under allllll the

If you need me I’ll be huddled under allllll the blankets, eating alllll the chocolate.

#pmdd #pms #pmsproblems #pmddawareness #pcos #pcosawareness #emotional #cramps #periodproblems #invisibleillness #chronicillness #chronicpain #endo #endometriosis #endowarrior #polycysticovariansyndrome #hormonal #hormones #trendingaudio #spoonie #spooniesupport #spooniecommunity #spoonies #community #chronicillnessadvocate #chronicillnesscommunity #autoimmunedisease

“Wait ‘til you’re my age”. Ma’am, I’m

“Wait ‘til you’re my age”. Ma’am, I’m 37 with 40x the conditions you have and more chronic widespread pain then you’ve ever had. Your “new” random back pain from aging isn’t worse than my lifetime, yes lifetime, of chronic widespread pain. There’s literally not a part of my body that doesn’t hurt at some point. So no, you’re right, we can’t compare. Because I already have chronic pain and arthritis, and yours started at 80.

Never try to pull out the age card on chronic illness or chronic pain. There’s no age limit to either. You can be a toddler with chronic pain, and who are you to tell them it’s not real or significant?

Chronic pain and chronic illness doesn’t discriminate for age. There’s no age requirement or age restriction.

But I’m not gonna start whipping out these facts when extended family and family friends say these things to me, because I’m not in the mood to start an argument. I just let it “slide”.

This was my day yesterday, and I know this will re

This was my day yesterday, and I know this will resonate with a lot of you.

Sometimes I’m at a doctor and they say things like “wow, you don’t even seem sick”. Yes, you’re lucky— you caught me on a “good” day, where I was able to get out of my bed and leave the house. Those days are few and far between though. You’re not seeing me at my worst, because at my worst I can’t make it to the appointment. At my worst, I’m lying in a dark room, holding in my pee because I’m too fatigued to go to the bathroom. At my worst, I can’t put together even a snack for myself, it’s too much effort. At my worst, there are tears running down my face, silently, from the pain and discomfort. At my worst, you’re not seeing me.

That’s a distinction between chronic illness and an acute illness— you go to the doctor to get better, but sometimes you can’t even make it to the appointment because you’re too symptomatic from said illnesses to get there. I’ve had to reschedule appointments I’ve waited months for, because I just couldn’t make it there the day the appointment came up. It’s not like I can anticipate it either, I never know how I’m going to feel. You just have to deal with it as it happens.

Day 15 of EDS/HSD Awareness Month— Childhood.

Day 15 of EDS/HSD Awareness Month— Childhood.

When thinking back, I get angry. Angry that I was telling doctors 👏🏻my 👏🏻 entire 👏🏻 life that something was wrong. Lifelong chronic pain, fatigue that went beyond what is normal for depression, OCD, and a tween into teenager. Low muscle tone. Stomach issues that started in 6th grade and were so bad, I had 65+ absences a year in my worst years. Stomach issues and fatigue so bad that I had to be homeschooled for the second half of 11th grade.

No one told me I was even hypermobile. Not a single doctor. You know who told me?? My cousin, who’s 8 years younger and a dancer. She’s the one who noticed it. How was it not noticed?? My arms and legs are SO hyperextended, they look backwards. My hips pop out when I walk. But it was my cousin who first gave me the first clue that I could have EDS.

I was already diagnosed with POTS at that point, and only knew of EDS through the POTS support groups, since EDS and HSD is so common with it.

The first geneticist, pre-2018, told me I wasn’t even hypermobile. Ummm what?? My limbs go beyond a lot of ppl with EDS. That’s how uneducated the medical community is on this. In 2018, when the criteria changed, I finally got a diagnosis. It should not have taken 32 1/2 years to get a diagnosis I struggled with my entire life. Imagine if a pediatrician noticed when I was a child? With the right physical therapy, I could have learned not to stand with my knees locked. How to stop from becoming a Bobblehead. Instead, I got worse and worse for 30+ years, until I became so disabled and in so much pain, I can’t even function.

So I’m angry. I’m bitter. I’m pissed off. Because this is not how it should be. And only with awareness will anything change.

Anxiety + OCD = constantly re-evaluating every con

Anxiety + OCD = constantly re-evaluating every conversation I’ve ever had. The night I see friends or family, my mind is at its busiest, going over everything it can remember that I said until I hate myself.

But remember— anxiety and OCD is lying to you!! Everyone doesn’t hate you, and chances are no one remembers the awkward thing you said but you.

Day 13 of EDS/HSD Awareness Month. Where does it

Day 13 of EDS/HSD Awareness Month.

Where does it hurt? Where DOESN’T it hurt??

I couldn’t even include all the places I have chronic pain because I’m not showing my back, hands, etc.

So I’ll list them. I have chronic pain in my neck, the base of my skull, shoulders, upper back, shoulder blades, between my shoulder blades, mid-back, ribs, lower back (with sciatica on both sides), both hips, sternum, thumbs (right one especially), right ring finger (that’s new), jaw, temples, head, both knees, feet, and probably more I’m forgetting. It’s a lot, and I live with all of this pain every. single. day.

Painsomnia is so real. I don’t fall asleep until

Painsomnia is so real. I don’t fall asleep until between 4am and 7am most days. Yes, you read that right. Between my chronic pain, insomnia, and Delayed Sleep Phase Syndrome, it’s a constant struggle.

ASMR has helped a lot though, and that’s why I decided to start doing it as well. But it is causing worsening pain, because I’m sitting up at a desk. I don’t have the core strength, and I have trouble holding my own head up. Able-bodied people really have no idea the struggles some of us have— their simplest tasks, like sitting up, cause excruciating pain for some of us.

I’m never not in pain. Never. I live at a 6 or 7 out of 10 on the pain scale, and that’s being conservative because I know when we think we’re at our worst, it can always surprise us and get worse. Those in daily chronic pain get it. This is why I never say I’m at a 10– because I will always be humbled by worsening pain that will knock me onto my butt.

I will wake up with pain. There is no escape. Lying down is the best position for me, but it’s still not a pain-free position. There is no such thing.

Sorry, Jess can’t come to the conversation right

Sorry, Jess can’t come to the conversation right now, words aren’t wording at the moment. Please have patience while she tries to wade through the fog.

My brain comprehension is…. not what it once was. It takes me a really long time to understand things sometimes, and I’m delayed in a lot of ways— finding words, remembering things, understanding things. It makes me feel stupid, but I know that’s not the case. I have pretty significant brain fog every single day, and I struggle with it a lot. I don’t remember the last time I had actual “clarity” up there…. It’s been years.

Brain fog can be no joke, and so scary. The symptoms are the same as early Alzheimer’s, but you never hear people say that out loud. It makes me scared of what my future, as an older person, would look like. Because if I have those symptoms now…. Well, I don’t even have to complete that sentence.

PSA— Stop giving unsolicited medical advice, esp

PSA— Stop giving unsolicited medical advice, especially when suggesting simple fixes like yoga, essential oils, prayer, positive thoughts, or crystals will cure our complex medical problems.

It’s a straight road to get blocked when we get the spam comments about these things, but also when a real person actually suggests it and doubled down on their comments.

If it was that easy, there wouldn’t be millions of people sick. Some of us have genetic conditions, and many of us have conditions with no cures. So stop pushing your snake oil cures. There 👏🏻 is 👏🏻 no 👏🏻 cure.

Can certain treatments help symptoms in combination with other more tradition treatments? Sure, it’s possible. But not everyone is the same, and just because something helped you or someone you knew, doesn’t mean it’ll help me.

At a certain point, after being sick for years and years and trying everything you could, you start to tune out these people. At this point, 10+ years later, assume I’ve tried it.

Being gaslit by a doctor is unfortunately far too

Being gaslit by a doctor is unfortunately far too common, and it’s happened to too many of us (and often multiple times).

After being gaslit by a doctor, it may take a bit to feel comfortable enough to see a new doctor, because now we have PTSD and the fear that it will happen yet again. This is the reason I’ve been to over 50 doctors in the past decade.

The most important thing is you don’t give up after the traumatic experience. We must keep trucking along, because many of us don’t have the liberty of giving up. We rely on the medical community for diagnoses, for medications, for treatments, for guidance. We have to keep going, despite the PTSD caused by previous unprofessional people in the medical community. It’s so important to not give up.

Day 8 of EDS/HSD Awareness Month. Did you know t

Day 8 of EDS/HSD Awareness Month.

Did you know these quick facts? They speak for themselves.

Day 7 of EDS Awareness Month— Celebrate a win.

Day 7 of EDS Awareness Month— Celebrate a win.

There aren’t many of these for me anymore, but this is a win in my book. I decided to start doing ASMR (I’ve found it to be tremendously helpful in my anxiety). Last week, I officially went live for the first time on TikTok. It’s slow going, and I wish I had more viewers, but it’s still a win because i am pushing myself. It’s creating a lot more back, shoulder, and neck pain, but I don’t wanna give up. I’ve gotten great feedback, saying I’m a natural at it, so I hope I can get a following and be able to make the money I so desperately need doing this.

I’d love if you joined me if you like, or are open to trying ASMR! I will also create a YouTube at some point, but for now I’m just going live on TikTok. My username on there is chaosintoasmr if you’re interested in supporting me! 💜 I’d love it if you did!

Wish me luck as I embark on yet another endeavor, as I try to piece together things I’m passionate about to create an income for myself (selling vintage, blogging about chronic & mental illness, & doing ASMR).

Today is Hanson Day, and we are celebrating 26 yea

Today is Hanson Day, and we are celebrating 26 years of music— 26 years of music that changed our brain chemistry.

Flashback to 1997 with me. I’m just finishing 6th grade, and I’m 11 going on 12. This song is everywhere— “MMMBop”, and these 3 boys from Oklahoma instantly become my favorite band. “It’s not a phase” is right, because here I am, 26 years later, 100+ concerts later (I lost count over a decade ago), and still supporting our favorite trio.

I owe my very best to this band. Friendships, memories, concerts, adventures, traveling. I am so grateful for them and their music, and all they’ve given me to enrich my life over the years.

Thank you, @hanson, for 26 years of happy ears. 🧡

Day 4 of EDS/HSD Awareness Month — Shining light

Day 4 of EDS/HSD Awareness Month — Shining light on Hypermobility Spectrum Disorder/Hypermobile Ehlers-Danlos Syndrome.

I explained in a previous post (day 1) why I use both interchangeably, so if you’re confused, refer to that.

I did not know I was hypermobile until more recently— no one ever told me. You know who told me? My cousin, who’s a dancer. She mentioned how much I hyperextend my legs, and how perfect my form is (what form? This is how I stand. I didn’t know that you weren’t supposed to lock your knees when standing. I still don’t know how to stand without locking them).

Since I had a POTS diagnosis, I realized I needed to get screened for EDS. I wasn’t diagnosed until 2018. At the age of 32 1/2.

The photos are from over the years, showing some of my hypermobile joints. My ankles in the first picture, my elbows in the 2nd and 3rd, and my knees in the last one.

I’m so hypermobile, and yet it took me 32 years and 2 different geneticists to even get a diagnosis. And even that wasn’t perfect.

It shouldn’t be this hard. Pediatricians need to be aware of it to help screen children and teens like me who are complaining of chronic pain and fatigue, but are told it’s only “growing pains and depression”. Do better, doctors. If I was diagnosed decades earlier, I truly believe my chronic pain wouldn’t be quite so severe today.

It’s day 3 of EDS Awareness Month, but I don’t

It’s day 3 of EDS Awareness Month, but I don’t have anything zebra to wear, so I’m sharing some Met Gala memes I made instead.

These was too good not to participate in. Which is your favorite? I’m partial to the first one 😆

It’s Day 2 of EDS Awareness Month, and today’s

It’s Day 2 of EDS Awareness Month, and today’s picture is “What you see Vs. What you don’t”.

This picture is telling, because guess what? They’re taken the same day. I’m not a “before and after” (although this is before and after make-up). This is me, underneath the guise of foundation and concealer. This is me, feeling flare-y as hell from walking around for a little while while I was in Philly for a wedding. This is me, struggling. This is me, beneath the false smile.

I still had to do my makeup and get dressed and go to a wedding. I still had to play pretend. Little did I know I’d be playing pretend as an adult too-pretending to be healthy. (I am absolutely making a graphic out of that!)

Don’t judge us based on how we look. You don’t know what’s really going on on the inside.

It’s Ehlers-Danlos Syndrome (EDS) & Hypermobilit

It’s Ehlers-Danlos Syndrome (EDS) & Hypermobility Spectrum Disorder (HSD) Awareness Month.

I was diagnosed with HSD in 2018, at the age of 32. I was told I was just a couple points shy of the EDS diagnosis because my fingers weren’t hypermobile enough and I missed one point in the main criteria. One point! Then when my primary looked at the evaluation, she said I had that thing the previous doctor said I didn’t— translucent skin.

For this reason, I often use hEDS/HSD interchangeably. My doctors think I do have hEDS.

There’s so many unknowns within these spectrums, and I think eventually it’ll be realized that those with Generalized HSD really have hEDS.

Day 1: Photos of me in my part of the world— Long Island, NY.

I don’t think others realize just how beautiful LI can be. Our beaches are beautiful, our east end is full of farms and vineyards, and I get to live in the suburbs of the biggest city in the country. There are drawbacks, obviously, like cost of living and harsh winters, but the spring and summer in my little corner of the world is unmatched. 💜

“I’m an over-thinker, so I can hurt my feeling

“I’m an over-thinker, so I can hurt my feelings on my own”
T R U T H.

My mind never shuts off. Ever. Never ever. It moves at rapid pace, and loves to settle on topics that I don’t wanna think about (shout-out to OCD’s intrusive thoughts). I’ve been living like this for over 30 years, so I don’t even know any difference at this point. Add general anxiety, depression, and ADHD into the mix and it’s a clusterf*ck of hell up there 😂

Who else is an over-thinker who can relate? 😂

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