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Why I Shut Down

When I have a flareup, I usually get quiet.
It’s not something I do intentionally, I’m just trying to survive.
I don’t feel like talking or being around anyone.
I don’t feel like talking about “it” because “it” is so bad that I am surrounded by “it,” being swallowed up by “it,” and drowning in “it.”
I can’t bear to talk about “it,” too.
It isn’t easy for me to communicate when I’m in the middle of a bad flare, so I don’t.
I cry.
Breathing hurts.
Eating hurts.
Air hurts.
I haven’t ever explained why I get quiet when I don’t feel well.
But I guess It’s because I don’t want people to know how much pain I’m really in.
Because it’s awful. Really awful.
People don’t like to see it.
I’ve experienced that firsthand.
It’s like inviting somebody over to watch you vomit.
No thanks.
When I’m painful, I usually have difficulty speaking. I get my words mixed up, I can’t think of the right words to say, I can’t follow a conversation...
Sometimes all I can think about is the pain.
It overloads my brain.
I don’t think when people have the flu, or they’re in the hospital having surgery, they feel like they need to call people and say “hey, I’m feeling shitty and I don’t want to talk about it.”
They just go on having the flu or recovering.
They get a hall-pass.
And that’s just what’s kind of not fair about chronic illness.
It doesn’t go away.
It’s an illness that’s chronic.
Because, well, chronic illness.
So I try to sleep.
It’s the only time I don’t have pain.
”When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving (unsolicited) advice, have chosen rather to share our pain...”
It’s the quiet ones who we choose to sit with us and just.be.quiet.
Nance 💜

#AutoimmuneDisease #DegenerativeDiscDisease #JointHypermobilitySyndrome


What can I expect from a pain specialist? #CheckInWithMe

Reaching out to y'all because honestly y'all know more than anyone I am surrounded by at this point, at least in a way which is more realistic to my story.

So tomorrow...gosh darn early tomorrow morning...I am going to see my first pain specialist. I have absolutely no idea what it entails. My family has all urged me to make sure that I ain't put on narcotics like gabapentin (probably spelled it wrong) or hydrocodone. Like, I already don't want to be on those things, but also if it's a PRN that will keep me from going to the hospital... I'm game for it.
Other meds like Rx-strength tylenol/ibuprofen and naproxen give me rebound headaches, so I take them as rarely as possible already. I have a cream for muscle aches but if I use it as often as perscribed my skin gets too sensitive for clothing. So yeah...I am unsure if the horror stories of pain pill pushing are true, but I also don't want a doctor giving me the same treatments I have been giving but dont work or will work only if I give up my busy life.
If anyone can give me a reality check, heck would I appreciate it. #EhlersDanlosSyndrome #PseudotumorCerebri #Asthma #ChronicPain #ChronicIllness #HypermobilityEhlersDanlos #hypermobilityspectrumdisorders


Something like a charley horse in both ankles??????

Normal day besides the normal pain then all of the sudden collapsing in the floor because of the lack of movement and immense pain in my ankles and then pain shooting through my thighs and feet?????? Anyone know anything #ChronicPain #HypermobilityEhlersDanlos

1 comment

Feeling overwhelmed

Apologies for the rant.

I miserable in my job. I am the only female in the building and no one talks to me unless it is work related. I am look for another job but I don’t know if I can get through interviews and meeting new people and how my conditions would affect this. I want to take some time off work but I would only get statutory sick pay and as I live alone I wouldn’t be able to pay the bills. I’m just feeling so alone and overwhelmed. I don’t know what to do anymore. I just want to lock myself in my home and never leave. #Depression #Anxiety
#HypermobilityEhlersDanlos #JointHypermobilitySyndrome #PosturalOrthostaticTachycardiaSyndrome #Fibromyalgia #EhlersDanlosSyndrome #BingeEatingDisorder

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I was never been a “healthy” kid per se but ten years ago my onset hit me like a tidal wave. When everything hurts you kind of have to pick and choose what to mention to doctors. Finally, I’m beginning to meet doctors who take me and my EDS seriously. This past Friday I had my 20th procedure since February 2010. It was shoulder surgery to repair an ALPSA lesion and in two days I’m seeing a hip specialist. 🤞🏼

No matter how someone presents themselves show them kindness, because you don’t know what other battles are being fought closed doors. #EhlersDanlosSyndrome #EDSers #EDSAwareness #InvisibleIllness #Spoonie #PosturalOrthostaticTachycardiaSyndrome #IfYouFeelHopeless #HypermobilityEhlersDanlos #HEDS #Gastroparesis #Endometriosis #CheckInWithMe