My World Got Small and Fuzzy Again: An Invisible Illness Blog


Yup back in bed. I had three great days. I to to walk, drive, and even feel a little bit normal. This might be one of the most frustrating things about Ehlers Danlos Syndrome is how changeable it is. You can even start to visualize your life without it s you get an hour or few days reprieve. On good days I try to see that as a wonderful thing. At least I got a few days but then there are days like this. Every move I am making has a loud crack. I sit up and my rib pops further. I tried to put on a bra and now my left arm is hanging out of its’ socket. I had to ask someone to grab my youngest and keep her until I could keep myself together (pun intended).

Sorry this is not one of my everything will be all right posts. This is a day full of questions like: Should I go to the hospital? How much color change? Is it smurf blue or has it gone full walking dead zombie grey? The big question, is an emergency? Like I’m willing to risk getting on a pain medication list or I’m willing to pay 2k for the chance of help emergency.

Will I be able to afford the ER? So this is my real life right now and the only things holding me together are my friends and cousin texting because they know I can’t talk on the phone, opioid pain killers (yes they are necessary for mass dislocations), Watching UnReal for the second time on HULU, and of course my pug. I forgot my friend and cohost Kyros who got me a Keypad that only requires me to move my fingers so wish me luck on less typos!

Update: Due to massive tibia and femur dislocations I am now full time on wheels. Watch your toes!

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