Pain terrors.

“Endometriosis tortures people. It doesn’t kill them but there are times when you may wish it would kill you.”  Dr. Andrew Cook

I absolutely hate what just happened to me and still is. Excuse my writing, I’m having a acute pain attack. I call them pain terrors, like a night terror. This happens about once a week in the middle of the night, waking me up in unbearable acute pain.

I was sound asleep, then out of nowhere I wake up in the most horrible pain, confused and unsure of my surroundings. Unable to catch my breath, heart racing. My body is in full on fight or flight mode. Sheer panic. I wake up more, touch one of my dogs, as if to ground me. Quickly assess my symptoms. Is this an ER emergency? I’ll wait a bit. I’m curled up, one of my heating pads is permanently plugged in and on my bed. In a bit I’ll attempt to grab a few ice packs from my freezer.

I honestly don’t know how one person can be in this much pain and it not be an emergency, but it never is. It’s the worst type of pain I’ve ever felt. So much worse than my torn ACL, my broken hand, and my gallbladder attacks. Feels more like post surgical pain, but worse. I’ve gone through this pain countless of times, unfortunately. It’s happening more frequently these days.

How I wish I knew I had endo prior to surgery. I would’ve found a specialist. I can’t change the past. So here I am.

My lower ribs feel like there’s a rubber band around my body, the pressure! My abdomen is burning from the inside out. Tiny knives are carving my insides. The pain radiates outward through my back. My lower left pelvis feels as if my ovarian endometrioma cyst has it own painful heartbeat. It’s hell. I wouldn’t wish this pain on anyone.

Deep breaths, I can’t because of the pain. So I’m slowing down my breathing. I want to cry, I can’t because of the pain. Silent tears it is. Ugh.I just hobbled bent over and got my ice packs. I’m going to use my TENS unit next. It’s a portable unit with four electrodes. You attach these around your painful areas, it creates high frequency zaps that confuse the pain signals to your brain. Sometimes it works, depends on the pain. At the very least it helps me focus on the pain created by the machine rather then the pain from my body. Insane, lets create pain to take away pain.

Its about an hour since I started typing. I’ve calmed down a bit and the TENS unit is helping. (I also edited and added to what I wrote above) Just writing about this attack is helping a lot. I can’t believe that this is my life right now. It’s really scary, but I’ll get through it. I always do.

I’m afraid to fall asleep. I’m 46 and afraid of the dark, the boogie man. I live alone and haven’t given it much thought in the past. I’m used to it. However in the last few months, it really bothers me. What I wouldn’t give to have someone here to help me, to be my rock. It’s terribly lonely. Very.

I’ve turned on the TV and the lights. Golden Girls it is. I’m deciding if I’ll sleep in my living room. It’s less scary to me. I don’t sleep well out there and the dogs will be restless. But I may feel more calm at least. I imagine I’ll be up for several more hours, that’s been the case in the past. My adrenaline is pumping and it’s hard to calm down. When the sun comes up, it’s comforting. People are waking up and around. Not that I ever call anyone about this other then my mom. Bless her ❤️.

Well I hear the birds now, the sun is rising. I’m going to try to sleep. I’ll leave you with a terror dream I had a month ago. I was in a hotel room, it started out as an ER room but somehow morphed into a 70’s Howard Johnson’s poolside room. An intern was listening to my abdomen with a stethoscope, then she started hitting me with it. I informed her that it was hurting and she was using it wrong. She claimed it was a new method. Then knives came out of the end. She was stabbing me. I woke up.

I can’t wait for my excision surgery. I hope I can afford it soon. I pray.

This is no way to live. This is solely coping. I miss me.IMG_3329

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A Day in the Life. Fatigue 1.1

“Woke up, fell out of bed
Dragged a comb across my head
Found my way downstairs and drank a cup
And looking up I noticed I was late tired”

That’s about where my day starts and ends. I exist after that, actually I spend most of my days trying to figure out how to control, accept, or just live with my symptoms of endometriosis. This has been my life since my surgery in October of 2017.

I’ve decided to explain endo on a later post. That’s a lot of work and I do not have the energy. A short unscientific explanation is this; I have a disease where I have a bunch of irregular cells, similar to those that line the uterus, that are growing in my abdomen and invading my organs. These cells are inflammatory and extremely painful.

I think of the movie “Alien” quite a bit. It feels like that an alien is in my body. I also think some good UFO/ alien conspiracy theories could be “birthed” from how weird endo is. “Dude, there are these women who have uterine type cells growing in their abdominal cavity, I bet aliens could use them as hosts.” I wonder if there’s been a study on the correlation between alien abductions and women with endometriosis?

There are a lot of studies out there and even more unanswered questions. No one knows the cause, and there is no cure  Like I said, aliens  ; )IMG_3326

FATIGUE

Grinding fatigue as severe as that experienced with advanced cancer is present in most cases.

That’s an excerpt from one of the “rock star” endometriosis specialists. As fightening and depressing this sentence is for me, it brings me comfort and validation. I need validation. Everyday I find myself questioning my symptoms. I’m living through them, I know they are real and not in my head… however after being beat down and dismissed by so many health professionals and people. I doubt myself. How can I be this exhausted no mater how much sleep I get, after multiple naps, or how much effort I put into living a somewhat healthy lifestyle? How?

Fatigue doesn’t feel like lack of sleep. It’s debilitating. I can’t do anything to combat it, and I’ve tried. This is probably my why I can drink coffee until bedtime and fall asleep within seconds. A positive for me! This morning I woke up and felt alert and focused, slowly over the next hour I knew the brain fog set in, the heaviness of my limbs, and I just felt flat. Like a shell of a person, a tired shell, a tired shell who can’t put a sentence together. I must have different body language in this state of fatigue because my dogs start pacing towards the door to my room even before I realize it myself. They know. I had started to write this and was adamant about finishing. I drank the rest of my pot of coffee. Walked around the house, took my 10 vitamins, drank my Perrier, ate some protein, and nope, I’m still catatonic.

The only comparison I can think of is that it’s like the fatigue you get when you have a really, really horrible cold, with an infection, or the flu. The kind that knocks you off of your feet. You have your Netflix lined up, maybe a book, however all you end up doing is sleeping, uncomfortably at that

There’s no pushing through it, I surrender and go back to bed. These “naps” aren’t 30-60 mins. I’m talking 3-4 hours. Solid sleep. It’s horrible, I hate it. My elderly dogs on the other hand, love this. We are one big sleeping pack and I’ll admit that Ollie and Cecil are wonderful bedfellows.  What’s even more frustrating, these multiple naps I take don’t actually help. I wake up fatigued. My eyes are less likely to close at least!

To be continued… zzz.. due to exhaustion.

best, Ellen

Quick intro/test

I set up a wordpress account 6 months ago and finally feel “okay” about sharing my personal story. There are two driving reasons.

One, if I can help just one women get diagnosed earlier than I was, if I can let her know that she is not alone, that her pain, her exhaustion, and her feelings are real. This will all be worth it.

Two, it’s easier for me to let my friends, family, and anyone else know what I’ve been going through in one place.

It’s scary to open up. Who really wants to talk about female parts and periods. Endometriosis is SO much more. It effects organs both women and men have, it is very common and rarely talked about. It effects us all, whether you know it or not.

I’m going to take a nap. Fatigue is a huge part of my life since October. Stayed tuned.

Best, Ellen