I’m never sure how to put into words what dealing with this disease really takes from me. Or whether I should talk about it at all. We talk about the pain, the symptoms, the treatments, the surgeries, and are called ‘brave’ for it. But we talk about how it makes us feel and there’s always the ones who throw out words like “attention seeking” and “victim.” I’ve never considered simply surviving brave. Because what other choice is there? I’ve been down the other, darker, colder path, and somehow with full thanks to the wisdom and power of the universe, I ended up back here each time. Surviving. By the grace of the universe and the luck of the Irish.
The real bravery, to me, comes in not only surviving but in baring your soul and thriving. It’s something I try with varying levels of success. Surviving pain is a matter of keeping breathing, one moment after the other (not an easy matter I admit, but not a complex one either.) Thriving takes something else. It takes a drive, a deep reserve of energy, one which runs dry in me far more often than I wish.
The past few weeks I’ve been surviving. I’ve talked before about how I don’t trust often, or well, so when I do it’s devastating to lose that trust. I’ve had enough therapy to know it traces back to rape trauma, and the time surrounding that, and that not everyone can be painted with the same brush as the people in my life then. But still.
A few weeks ago I lost faith in not one, not two, but three people I’d put my trust in in the space of three days. One in particular, though possibly the least impactful, framed my mindset for the events of last week.
I’m not a perfect person, far far from it, but I’m not a cruel one either. Being treated with cruelty and disrespect by a group of people I barely know, and one who I’d bared my soul (among other things) to, someone I’d explained myself to and asked with all vulnerability to be open and honest – it shook me to my core. In those moments my brain overwhelms me, and starts to spiral. I see it in my mind as a game of Mousetrap, where one ball knocking over a level sets off a domino effect of catastrophe and chaos that ends in the dark place. Some small blip on someone else’s radar can be your undoing. I know when I cause or contribute to a situation. This one I did not. So without a rhyme or reason or any form of explanation to hold on to, I spiralled.
When it gets dark for me in these places I hold on to one piece of wisdom I read years ago. When someone hurts you, and you feel anger towards them, every time that anger rises take a deep breath, think of the person who caused you hurt, and as you exhale send all the love, light, and good energy you can authentically muster through the sky to them. Anger only causes you pain. Sharing love brings you healing.
So this is where I was, a week in to trying to find my feet again, when I suddenly noticed I couldn’t bend over any more. I’d been in pain, more than usual, for a couple of weeks but I’d written it off as part of #endolife as we call it. Stress causing more pain. Not being willing not open up to anyone else, because that hasn’t worked well lately, I ignored it. (Trusting doctors hasn’t ended very well for me in the past either.)
It shocks people when I tell them that endometriosis doesn’t mean I have bad periods. It means that I am in some level of pain, every day, about 26 smears of the month. This is what I’ve felt for around 10 years now. So it’s no wonder that when I notice I can’t bend over because of a swelling in my left side I don’t consider it worth having checked out. I have a specialist appointment in a month, we’ll discuss more surgery then, and what is anyone going to be able to do for me in ED anyway? So I left it. For three days I ignored the fact I couldn’t bend over, and that I was popping tramadol like candy, when I usually try to control my symptoms with supplements, heat, yoga and massage. Because I was in no headspace to taken on any on any further burden to actually deal with.
Then Tuesday morning there was the blood. And I freaked. Quietly, calmly, internally, I freaked the absolute fuck out. Mid-cycle pain, sure. Mid-cycle bleeding, never. Blood when there isn’t meant to be blood has only ever meant loss and trauma for me before. (I’ll talk about that sometime.) I knew that wasn’t the case here, but I was shaken. Something deep inside me said something was very wrong. So finally I moved.
Those who know me will know it’s not at all surprising that not only did I drive myself, in a considerable amount of pain, to the doctor’s office – I then insisted on driving myself to the emergency room as well. This isn’t bravery. This is sheer ass stubbornness about not wanting to risk relying on anyone else, in case they didn’t show. So I hobbled inside, on my own, and waited and calmly in line until a triage nurse asked me my name and date of birth and it took me so long to answer he asked if I’d forgotten who I was. Ironic. No…I remember…I’m just trying not to throw up on you. Thank the universe for the doctor who had called ahead so that once they knew who I was I was rushed into a bed pretty damn fast.
And that’s when I fell apart. Lying in a bed, in the middle of ED, alone in a hospital gown, needles in my arm, staring at the ceiling in agony listening to my heart rate as tears rolled down my cheeks, certain that these people would just be another group who wrote me off, thinking
Is this it? Is this rock bottom yet…again?