#endotryingtoholdittogether

“It’s time for a second opinion,” my doctor says. I’m paraphrasing from an exchange we had on the messaging system for the hospital system, but that’s what it boils down to. After nearly two years of trying to manage the pain, mood swings, and fatigue that define endometriosis for me, my doctor has run out of ideas of how to get me to manageable.

I’m also at the point where I can no longer discuss specifics of my care with many people simply because it’s gone beyond the scope of their understanding. My mother, when I mentioned the latest round of birth control pills were failing, put it best: “Why can’t they do something?!” It was nearly a shout on the phone as I laid on my back and gently probed my ovaries to see if they were sore that day.

My husband, a never-ending knight helping me fight the dragon that sets fire to my insides, felt my mother was being insensitive. “They are doing something,” he says when I tell him about the conversation. “They’re doing a lot.”

“I know,” I reply because oh hell yes I know. “But all Mom can hear is her child is in pain, and she wants the pain to stop.”

The truth is, it’s hard for people who don’t live it to understand how chronic conditions work. Those of us with them are good at masking our symptoms because we don’t want to be buried in an onslaught of genuine but exhausting concern from the people around us. And we doubly don’t want to hear suggestions of things we should try that have worked when someone had bad cramps that one month or was super tired after staying up late that one night. And we triply don’t want to take shit from people who think we’re faking or overreacting.

The truth is, it’s hard for the people who have the chronic condition to accept how it works. Or, at least, it’s hard for me. Asking for help, relying on others to get me taken care of, these are things I do not trust. It’s nothing to do with the people around me — I’ve surrounded myself with loving, supportive people who understand and sympathize — and everything to do with most of my life spent around the opposite sort of people by accident. People, who, on the surface, radiated friendship and care and love but were simply facades of all those things so they could constantly tell me their problems, get a sympathetic ear, and provide back no real care or help when I was doubled over on my couch trying not to cry because moving sent pain through every part of my body.

I’ve spent a lot of time working this out with my therapist. My trust issues run deep. My need for validation possibly deeper, but when I get the validation of my husband assuring me for the nth time with absolute patience that I am not a burden, I have a hard time believing him.

This is what my pain is like: There are tiny, spiky points of pain in my uterus and my lower abdomen and in my ovaries and radiating down my legs to make my knees pulse and my hips burn and radiating into my lower back and setting off nausea and fatigue. These spiky little points bind together like sticker burrs and press press press against all my soft parts. When there is a break in the pain, there is the feeling that it’s going to come back. It’s a paranoid cycle of pain, relief, and then, back again, more pain. It makes it hard to walk, to eat, to talk, to sleep. It makes it hard to write and read and crochet and enjoy anything. It removes my energy and replaces it with a soft clay lump that isn’t ever quite forming anything besides weight.

And then the mood swings enter in, and I’m struck either feeling completely useless and shitty or I’m battling back a wave of irrational anger because my husband had the nerve to stand in front of me and slightly off to one side as he reaches for his toothbrush in the bathroom.

The fatigue gives the world a slightly fuzzy glow on the edges and works only to intensify the mood swings or make the pain feel even worse. It’s an unending cycle of hoping today doesn’t fucking suck even though I’m trying so hard not to keep score of good days and bad days.

The exhaustion of my continual war with my body has led to depression. I go into a state of do-nothing-and-think-nothing where I simply sit on the couch and stare at the walls. I let little things go, like washing my face at night or answering text messages. On the truly bad days, I have to negotiate with myself to eat even if I feel hungry. I wonder, in that state, if everyone feels like an overcooked potato when they’re depressed or if this is a symptom that is purely me.

I’m on meds for the depression and for my anxiety and my allergies and my pain. I see a therapist every other week, and we work to unravel the long list of traumas that have affected me even before the endo became the central concern in my life. She has suggested that some of my depression could be linked to what I’m unraveling in session, and I don’t disagree that it’s possible. We’ve switched tactics recently to see if another form of therapy can both reduce my trauma and also pull me away some from the deep analysis that I sometimes can’t shake and leads to mood drop. Lightening the load by hitting feelings quick and then letting them merge with everything else. We’ve only done one session, so I don’t have an opinion on if the new plan is working. Right now, with this news of a second opinion, I feel like I want to curl up and cry forever.

I had surgery in November to tie my tubes and check for endo tissue, and they cleaned me out as best they could. They also found out that a surgical clip from my appendectomy had broken off and embedded into my ovaries. There was a brief moment of hope that some of the pain I was having was caused by tiny metal slivers jamming themselves into my organs. This turned out not to be the case. When I’m in pain now, it’s as much as it was before. Those little slivers never stood a chance of hurting me more than my own body.

1 in 10 women is said to have endometriosis. Most of us have had to fight to simply get a diagnosis, being told by more than one doctor (four, on my personal count) that it was “just period pain,” and we simply had to knuckle through and deal with it. They suggested exercise, a healthy diet, less caffeine and alcohol. Exercise is nigh on impossible when it feels like your thighs are separating a muscle at a time. Healthy eating is a dream when you feel like your uterus is going to fall out your body if you don’t placate it with potato chips and gummy worms. The only way to get through the fatigue is more caffeine, and there’s a point where nothing works for the pain until you discover the bottom of a bottle of wine. I try like hell to keep myself healthy on the good days. I move, I eat pretty well, I stick to my usual two cups of coffee, and I’m cutting back on my alcohol, but on the bad days, it’s hard enough to get out of bed and put on pants; fuck the rest.

My work turned me down for work-from-home. I had a note from my doctor explaining that my care takes considerable time and planning. There’s the gynecologist for the endo, the primary care physician for the rest of my body, the chiropractor for body work, the therapist for helping me sort my shit, and the psychiatrist to track my depression meds. Soon, there will be a pelvic physical therapist and another gyno. There’s also days where I get exhausted by the drive in and being able to work from a company laptop hooked to a VPN would let me accomplish my tasks at a speed and comfort level that will actually let me do things. But the company felt I didn’t need this assistance. Instead, they’ve assured me I’ll be given as much time as I need to go to my doctors and handed me an FMLA form to fill out for intermittent leave. Basically, once I burn through all my sick and vacation time, if I need unpaid time off, they’ll have a form saying why. I haven’t filled it out. To fill it out feels like a failure. It feels like another part of my independence is dropping away, that my need to rely on others to help me is getting too high. I’ve considered going back and arguing work-from-home from a pain perspective, but everything extra right now just makes me tired.

Online, there’s a vibrant, loving, sympathetic community of endometriosis sufferers helping each other out. They exchange tips and tricks, information from their doctors, and simply offer love and support when someone feels overwhelmed. I’ve found them by accident; as I’ve told my endometriosis story on twitter and tumblr, they’ve popped up to cheer me on and try and help. They’re kind and sweet, sometimes confused by my treatments but always willing to listen and ask. Many of them that I’ve seen call themselves “endo warriors,” using the hashtag #endowarriors to find each other where hashtags are used. They are full of piss and vinegar and probably as many meds as me, and seeing their spirit makes me think of avenging angels and pure justice. They fight, more than anything, for all of us to be understood and respected, and if I’m not careful, I think I could deify them.

I am not one of them. I’m not an #endowarrior. I am, in truth, an #endokindofhangingon, or maybe #endofeelslikeitsgonnawin. I’m so sapped of strength and vigor that even the idea of using the hashtag they offer with no strings feels like a lie. I’m not fighting; I’m gripping the world with my fingertips and begging myself to hold on. Something will work. Something has to work. There’s a combination of drugs and therapy and body work that must (must) be able to give me a mostly trustworthy level of comfort.

I am in mourning, and I have been for almost a year. I miss my independence, my energy, my sense of small adventures. I miss sleep feeling good and being able to walk through a big bookstore without getting exhausted. I miss the words I haven’t written and the movies I haven’t seen because those efforts feel like rocks tied to my wrists, and so I avoid them. I miss my piss and vinegar and the conversations I used to have because I wanted to push and prod and ask questions and maybe have a little debate. I miss the Gayle who fought through every period with gritted teeth and a death grip on the world she wanted. She wasn’t taking care of herself at all, but by god, she had a fucking fight in her.

I don’t want to get that second opinion. I wish like hell I didn’t need it. I just want to feel a little better every day and have that little better build to something more. A build that won’t be demolished by those spiky little pain stickers. A build that can’t be cracked or broken by my pain days. But, realistically, I don’t get that anymore. I can’t hold back the barrage of what’s happening to me and also be healthier, but to be healthier I have to admit I’m sicker than I ever thought possible. To do that, to come to terms, maybe then I’ll be an #endowarrior, but right now, I feel like I’m just #endo.