@chronicallyspicy.bsky.social
I live with chronic illness/pain due to a genetic disease called Elhers Danlos & its co-morbidities MCAS & POTS. I also have CPRS, one of the most painful conditions known.
#nrspain
26.10.2025 14:10 — 👍 0 🔁 0 💬 0 📌 0
It’s hard to believe that so many things can be going on at the same time. Lol
I may be physically exhausted daily but it’s the emotional exhaustion that hits me the hardest.
But everyday I fight.
#chronicillness #chronicpain #hEDS #MCAS #POTS #spoonielife
Omg! I didn’t realize it’s been a month since I last posted! I’ve been so busy with Dr. appts, my daughter got married in June, & my son & his girlfriend had their baby in July! I’ve also been flaring badly because of the heat. Bleh! Hope you are all well!
05.08.2025 02:48 — 👍 1 🔁 0 💬 0 📌 0
Hahahaha some days it feels this way.
I had knee surgery on Monday and held class on my conditions in pre-op and recovery. Lol
I appreciated how much they wanted to learn in order to make my stay more comfortable.
#ehlersdanlos #mcas #crps #chronicpain #chronicallyill
My birthday was last month and I was only hoping to have my morning coffee interrupted by some breaking news
13.05.2025 10:05 — 👍 0 🔁 0 💬 0 📌 0Yes it does 🥰
13.05.2025 09:37 — 👍 1 🔁 0 💬 0 📌 0
Connective tissues have five functions
Protection, Support, Binding, Transport, Immunity
Connective Tissue Proper
Tendons, ligaments, dermis, arteries & cardiac tissues, muscles, nerves, lymphatic organs, fat tissues, cells including the brain & spinal cord, lining of GI tract & other hollow organs
Supportive Connective Tissue
Bones, cartilages covering articulating joints and bone ends, elastic cartilage of ears and epiglottis, fibrocartilage of the vertebrae, knee meniscus, and other compressing cartilage
Fluid Connective Tissue
Blood
Ehlers Danlos Syndrome
is Complex it affects the body’s connective tissues. 80% of the human body is composed of connective tissues. This means that a person with EDS may have issues with as much as 80% of their body.
How I feel on any given day can change by the hour. I’m tired of not being able to make plans in advance. Good thing my granddaughter likes spontaneity!
#chronicillness #chronicpain #ehlersdanlos #mcas #pots #crps #cranialcervicalinstability #spoonie #spoonielife #alloutofspoons #nrspain
I’m currently trying to recover because I pushed myself too hard this weekend. I hate admitting that I can’t do things like I used to. To be cont…
#chronicillness #chronicpain #ehlersdanlos #mcas #pots #crps #chronicfatigue #pem #spoonie #spoonielife #alloutofspoons
This! All of this! I have learned to mask too well and it’s been to my detriment. To be cont…
#chronicillness #chronicpain #ehlersdanlos #mcas #pots #crps #spoonie #spoonielife #alloutofspoons
Some days it just all gets to be too much. I am generally a very positive person and try to not let things get to me. But sometimes when things just pile up too fast and too high I have a good cry. But then I get myself up, dust myself off, and start all over again.
#chronicpain #eds #crps #nrspain
And it sometimes ends up being detrimental to us because we aren’t given the proper pain control we need. I function at a 7-8 daily which would mostly likely be a much higher number for someone that doesn’t live in constant pain.
12.03.2025 00:47 — 👍 0 🔁 0 💬 0 📌 0
I have been having thee absolute WORST brain fog of late. My attention span is that of a gnat!
More than one of my conditions cause brain fog unfortunately and it feels like they have all teamed up on me. Lol
#chronicillness #chronicpain #nrspain #spoonie
Living with chronic pain can be hard. Especially when you suddenly get side tackled by something you never saw coming. It took me a long time to learn the new me & how to work with my pain & find a balance.The key is to try and pace yourself. Set a timer. Do things in little increments.
21.02.2025 17:25 — 👍 0 🔁 0 💬 0 📌 0This is something I can get behind.
12.02.2025 03:26 — 👍 1 🔁 0 💬 0 📌 0
😤😤😤
08.02.2025 05:47 — 👍 0 🔁 0 💬 0 📌 0Living with EDS is living with constant pain.
www.tiktok.com/@spicy_disas...
A bit on MCAS. It’s a pretty complex illness so we’ll definitely be coming back to it.
www.tiktok.com/@spicy_disas...
Every damn time! 🤣🤣🤣
www.tiktok.com/@spicy_disas...
A little about CRPS.
www.tiktok.com/@spicy_disas...
Weird things that happen to me. Lol
www.tiktok.com/@spicy_disas...
I was invited to join Kimberly on her Podcast, The Chronic Truth, to discuss living with chronic illness/pain. I do not have a date or time as of yet for when it will air but will let you know as soon as possible.
06.02.2025 20:32 — 👍 0 🔁 0 💬 0 📌 0The crisis is his competitors getting contracts that he wants.
05.02.2025 22:44 — 👍 1 🔁 0 💬 0 📌 0
This is my introduction video from TikTok. I’ll only post a few pertinent ones from TikTok here and then after that I will be posting new content.
www.tiktok.com/t/ZT2rnP2uq/
