I’m exhausted.
When you fight the demon that is dysautonomia, being exhausted and stressed are things you want to AVOID. Yes, like the plague. Where’s my “GO AWAY” sign?
I am exhausted, though. And now bedridden – in a way, at least. Yesterday, despite having taken my Mestinon and other medication as directed, I felt like crashing. My body was giving out.
Since last Friday, I’ve been experiencing blepharospasms. My right eye feels as if there is a brick in it, weighting it down in the socket. The slightest breeze – or normal indoor atmosphere – irritates the surface increasing the twitching and blinking.
All weekend I’ve had moments where my body just… twitches. It’s like tremors running through my legs, hands, arms… and it’s exhausting! I can’t seem to settle down!
And all this has led to some serious exhaustion. At this point, I had to call family to feed me and help me to the bathroom. For someone who is very independent, needing someone is just terrible and can make you feel worse. But I standing makes my blood pressure fall, dramatically, and I start to black out. To even get up and go to the bathroom, it take preparation. Preparation to sit without blacking out. Preparation to stand without blacking out. And to walk… eat… drink… or just not blacking out while laying here on my couch!
The reality of my situation makes it difficult to relax and get the much-needed rest. And my diabetes insipidus doesn’t help the situation. I need to get up for bathroom every 20 minutes or so. And I can’t skimp on my water intake when my BP is low!
At this point, I’m merely trying to avoid hospital. Especially by ambulance.
Endometriosis: the silent life sentence 
Endochick,
I’m so sorry you are feeling so lousy!! I hope things turn around soon. I wish I could give you a hug. I guess we’ll have to settle for a virtual hug.
Take care!
Jeanne
P.S. When the time comes that you are in the car again, be sure to aim the vents away from your eyes. I’ve been aiming my vents the opposite way from me for years because the air hurts.
I can’t live without those vents. Even in cold weather. Finally got a new script for compression stockings. The doc only sent for the ones that stop at the knee! I’ve always had them to the waist so not sure if these will work.
I just happened to stumble upon your amazing blog as I googled syncope and endometreosis! I myself was diagnosed in June of 2011 after 25 years of suffering & countless doctors who brushed off my concern of endometreosis. It wasn’t until I had a gallbladder attack & had to have removed that they finally confirmed this silent death sentence! Ever since then, I’ve tried everything short of surgery since most women I talk to tell me it doesn’t help & even comes back with a complete hysterectomy! I’m literally at my wits end!
Unfortunately, High Hope’s, those women you’ve talked to are right. Endometriosis can return, even after a complete hysterectomy. This is because endometrial implants can remain behind, and unless you remain without all forms of estrogen to let them die off, the disease will come back.
Sorry it took so long for you to get a diagnose! It’s often the norm for women to take up to 10 years from symptoms starting to get a diagnosis, but 25 years isn’t unheard of, either. Hopefully, you can get some relief though.
Thanks for reading and hopefully you can find some support here!
Looking forward to more reads! Thank you again for taking the time out & responding back!