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Your chronically ill Christian bestie!🦋
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✨ POTS • IST • SEVERE ME/CFS • FND • CVS • FIBRO • AIN • IBS • BP • OCD • PTSD • ADHD & Co. ✨
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I figured it was about time to share my full list of diagnoses. I list many of them in my bio but wanted to have a place where I could list them all.

All of these diagnoses are confirmed and diagnosed by a medical professional. by @thatchronicallyillchristian

This morning (yesterday now, at this point), I had an appointment with my Cleveland Clinic dietitian. It was my first appointment since my most recent cyclic vomiting episode.

I shared how I had been unable to tolerate food, water, or medications for weeks at a time, how the vomiting only stopped a couple of weeks ago, and how I have lost over 12% of my body weight in just over two months. I am still struggling with very minimal intake due to early satiety (feeling full after eating very little).

We went over what I typically eat, what upsets my stomach, what I can and cannot tolerate, and what a realistic nutrition plan looks like moving forward.

I am really happy with how this appointment went! Instead of being told to eat more fruits, vegetables, whole grains, nuts, and fish, I was encouraged to eat whatever my body can tolerate right now. We also discussed increasing my intake of MCAS-friendly nutritional shakes, electrolytes, and soluble fiber.

Our goal is to take things slowly, one baby step at a time. My nutritional goals aren’t even close to what my body actually needs daily, but they are substantially higher than what I am currently getting and are realistic for me to work toward.

I am hoping to follow up in 4–6 weeks and see some improvement in my nutrition, less weight loss (or even weight maintenance!), and hopefully an increased ability to tolerate more foods.

One other update is that I was officially diagnosed with severe protein-calorie malnutrition today. My palliative care nurse had already identified malnutrition and muscle wasting about two weeks ago, but my dietitian made the more specific diagnosis today.

While it’s not a diagnosis I wanted, I am grateful to have a dietitian who understands my limitations and is willing to meet me where I am.

Cont in comments by @thatchronicallyillchristian

Pic from a day before BUT: I wanted to record myself opening the blanket one of my besties sent me!!! Thank you SO much @selflovesara_ 🥺🥺🥺🫶🏽🫶🏽🫶🏽

I also had 2 dissociative seizures while recording and instead of just scrapping the whole video I decided to make it somewhat educational? If you could even call it that lol. I have FND not epilepsy, and my seizures were dissociative or functional, although functional seizures can present is SOOOOO many different ways. Mine present in many many different ways. This is just one way.

Anyways, thank you bestie!!!

#ilovemybestie #besties #fnd #chronicillness by @thatchronicallyillchristian

Can you relate to any of these?

What are some of your chronic illness things that sound dramatic until they’re your everyday life?

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#mecfs #chronicillness #chronicpain #POTS #functionalneurologicaldisorder by @thatchronicallyillchristian

Today I saw my neurologist because I have been having cheek & jaw spasms, uncontrollable blinking, trouble chewing, swallowing, and right thigh tingling, burning and numbness. It has been incredibly hard to chew, eat and talk normally due to the spasms as well as sleep normally due to the nerve pain. I also talked to her about my daily migraines.

I was worried I would be dismissed and not taken seriously but I had videos and she was able to see exactly what was going on with my chewing and face symptoms.

She said my spasm and blinking and struggle to chew is part of my FND and I will be going to speech therapy to help treat my chewing issues to help prevent further choking. I am also going to get a swallow study done. I’ve had 2 done in the past but things could have changed. So I’m interested to see how that goes.

She explained it like this: she said that my brain struggles to send the proper signals to my mouth to chew and swallow properly. Makes sense.

As far as my leg goes, the end goal is to get an MRI of my back (I believe) to see what my nerves are doing (I think this is her thought process? The brain fog is so bad) but we have to do an x-ray first, then likely a CT scan then the MRI. Insurance is picky.

Lastly, my migraines. She sent in Ubrelvy as my new rescue medication as my previous rescue med didn’t work well for me and then we are going to do the monthly Aimovig Autoimjector as well for migraine prevention.

She also tested my strength, she noted that my legs are very weak. I totally agree. Being bed bound does that to you lol. She put in referrals for PT and OT. Will I be able to physically attend? We’ll see. The last time I did in person it caused significant PEM.

Overall, it was a very good appointment but I struggled a lot. It was at a hospital 30 mins away (I don’t drive, thankfully my mom drives me) and
I had to walk a long distance to get to my appointment (even with my rollator). I’m think I’m going to have to bite the bullet and start using my wheelchair next time.

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#neurology #FND #functionalneurologicaldisorder #MECFS #chronicmigraine by @thatchronicallyillchristian

It’s severe me awareness day.

I have had severe ME for about 9 months now. Before I was moderate-severe, since developing the illness.

I genuinely don’t have the spoons to say much today. But I wanted to post something because this day is so important and I want others with severe ME to know they are not alone, are thought of and are dear to my heart.

I also want to hold space for the countless souls we’ve lost to severe and very severe ME. 💙🕯️
My heart aches for them often.

If you don’t have ME, I encourage you to learn more about it. Sadly it’s an illness anyone can develop. No one is immune. The chronic illness community is a community you can join at any time.

#severeme #severemecfs #severemeawareness #mecfs by @thatchronicallyillchristian

I’ve been wanting to write something for a while but I just haven’t felt up to it.

But today, today feels different.

Today feels heavy.

I’ve been having a lot of these days recently.

Depression on the other side of a string of manic episodes.

Extreme exhaustion and lethargy in the throes of Myalgic encephalomyelitis & co.

I have to rest after every little task I do.

Sitting is strenuous.

I’m finding I almost always if not always need to be in a lying position.

Every time I have to get up from bed or roll over in bed is too much.

Lights even in short bursts are too much to handle.

Each and every day I suffer.

But because of my relationship with God, I can say I suffer strong.

It’s not easy.

I cry a lot and I often wish this weren’t my reality.

But I trust God will sustain me until it’s time to go home.

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“Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”
‭‭2 Corinthians‬ ‭12‬:‭8‬-‭9‬ ‭NIV‬‬

#myalgicencephalomyelitis #meawarenessmonth #meawareness #chronicfatiguesyndrome #bipolardisorder by @thatchronicallyillchristian

Happy Blue Sunday, 2026!

This is my second Blue Sunday diagnosed with ME, and my first Blue Sunday with severe ME.

Today I am celebrating by wearing my favorite (and only) blue pyjamas, drinking some yummy coffee from my cutsie blue daisy mug, enjoying a slice of cookies & cream cake, and this year I’ve chosen to donate to the Open Medicine Foundation.

I hope you’re celebrating too!!

#bluesunday #mecfs #myalgicencephalomyelitis by @thatchronicallyillchristian

The first photo was from the last day I felt like myself. This was exactly 1,244 days ago. The last photo is my most recent selfie, while deep in the throes of Severe ME. Suffocating, deteriorating from the inside out as it seems.

For ME awareness day, I want to share with you all of the things ME has taken away from me.
The first thing that comes to mind when I think of what ME has taken from me is my freedom. More specifically, my freedom to drive, my freedom to explore, and my freedom to be spontaneous.

Before ME, I would go on daily drives, sometimes for hours. I would sometimes make plans with friends on the fly and make regular visits to my local parks, one of which is my all-time favorite. It’s been over a year since I visited that park.

ME took away my ability to attend church and commune with other believers on Sunday or during the week for special events.

ME in addition to POTS and IST, took away my ability to sit and stand for long periods of time, go for walks, and walk my dog, Sunnie. She has not been for a walk in three years. Oh, how I yearn to walk my dog.

ME has taken away my ability to be out of bed for longer than 2 hours a day, broken up into smaller chunks throughout the day.

ME has taken away my ability to attend birthday parties, weddings, family reunions, and other family gatherings.

ME has taken my job as a Pre-Kindergarten teacher, which I loved more than almost anything in the world.
At times, ME has taken my ability to eat normally, and consistently taken my ability to sleep normally.

ME has taken away my ability to dress up, put on makeup and feel good about myself every once in a while.

ME has taken my pain-free days away from me and made it so that my mind is always cloudy.

ME has taken so much from me in such a short period of time. I went from Moderate to moderate-severe to severe in just over a year and a half. I’ve only been diagnosed with ME for that long.

And ME always makes it so you pay for any and every ounce of exertion you experience. Any ounce of “fun” or physical “enjoyment” is met later on with painful, high-symptom days riddled with PEM.

Continued in comments!

#myalgicencephalomyelitis #meawarenessday by @thatchronicallyillchristian

$I finally took my @kerdomofficial lightweight power chair out for a stroll (or a roll) around the block and I’m so thankful for the mobility this chair unlocks for me. There is absolutely no way I could walk even a fraction of the way I went today yet I was able to travel around the block with this power chair! I hope to be able to get out more now that it’s nicer out. I’m praying my ME is kind to me. Thank you @kerdomofficial for gifting it to me! #kerdommobility #kerdom #chronicillness #mecfs #myalgicencephalomyelitis by @thatchronicallyillchristian$

This experience being chronically ill is truly unlike any other.

I mainly talk about ME/CFS which stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the hallmark symptom of this condition is PEM or post-exertional malaise.

PEM is A “crash” after minor activity, which may be delayed by hours or days, taking days, weeks, months or sometimes even years to recover from.

There’s also something called “rolling PEM” which essentially means your body doesn’t get the chance to recover from one episode of PEM before starting another so it’s constantly in some sort of episode or one episode right after the other. This can happen when your body experiences an exerting event after exerting event with little time in-between. This is what best describes my PEM experience.

I’ve talked about PEM many times on my insta before but I’ve never talked about rolling PEM. It’s like a bad flu, hangover and poisoning all happening non stop or If I do get some relief, it’s for a day or two and then it’s back to the same debilitating symptoms: crippling fatigue, flu like symptoms, painful limbs, nausea, dizziness, fever, brain fog, sensitivity to light, smell, touch, sound and temperature, a bad malaise feeling, full body weakness and tremors both inside and outside of my body, GI upset symptoms, body aches, irritability, moodiness and much much more.

When I say I sometimes get some relief, those brief moments of relief are not void of symptoms. I still always have disabling symptoms. This illness alone at its most mild form is enough to disable someone. I have it at a moderate-severe level on a normal day and leaning more towards severe (if not severe) during PEM.

I wish more people knew about ME/CFS and PEM and especially rolling PEM.

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#mecfs #severeme #myalgicencephalomyelitis #severemecfs #chronicfatiguesyndrome by @thatchronicallyillchristian

I got to experience the flea market for the first time since becoming disabled thanks to @kerdomofficial and their light weight folding power wheelchair! It had been over 3 years since I had been able to join my dad at the flea market - something him and I used to do every weekend faithfully since he could push me in a stroller!!! Thanks to the freedom given to me by this lightweight wheelchair, I got to experience what I thought I never would have been able to experience ever again due to my inability to stand or walk to long periods of time.

Also, the flea market has gravel, rocks, dirt, and a little bit of grass and while I did struggle with the chair at some parts with bigger rocks, for the most part, it handled the terrain beautifully.

I can’t wait to continue to join my dad at the flea market as my health allows! Thanks @kerdomofficial !

#kerdom #kerdommobility #lightweightwheelchair #mecfs by @thatchronicallyillchristian

Ashley Hope ✨ | Your Christian BFF and SDIT Sunnie

@thatchronicallyillchristian