Identity, Uncategorized

The Battle Continues…

Those who know me know I’m fairly open about my mental health status. I have Borderline Personality Disorder, PTSD, and Pseudobulbar Affact. These have in the past wreaked havoc on my life and relationships and I have worked hard over the last decade or so to reign these terrors in. The past year has been an “interesting” one. With today being World Mental Health Day, I decided to finally post about what has been going on, why I’ve been kind of absent/off lately, and how I’m fighting against the darkness. First I need to take you back a few years… 

Nearly three years ago I got hurt pretty badly in training after making a stupid mistake, without the right safety equipment, and fell from the silks. R.A.C.K. applies to circus arts too FYI! What seemed like a minor fall, honestly more embarrassing than anything until I got home and my knee seized up, resulted in major injuries to both knees including completely detaching my ACL from the bone on the right side. I went from training most days a week to barely being able to stand much less walk. Surgery went well as did my initial recovery. I was able to get back to ropes within a few months as well as contortion training. During this time there was also a significant amount of new stress from work. Circus and rope had been part of my self-care routine both physically and mentally for years now. It was a great relief to be back at it again doing something I loved and that made all the chaos of the world would fall away. Five months later though I had to stop again for a mix or reasons. It sucked a lot, to say the least, and I lost one of my major mental balancing practices. 

Fast forward about two years and my physical health continued to be an issue. I was having more and more problems with fatigue, joint pain, random chest issues that mimic a heart attack but isn’t actually a heart attack. I went and saw my primary to try to find answers. He kept telling me it was all in my head. After multiple visits insisting that this wasn’t normal for me even with a bad brain flair, I finally got him to run some tests but nothing came back to explain why I was so miserable. Again, it was just that I was crazy. I started to believe it. 

Fast forward again to the late winter/early spring of this year. A lot was changing in my life. I was moving to a new area of town without roommates, I had a rowdy puppy just starting his training and a quickly aging service dog, and work was shifting yet again. I knew with all the changes happening so rapidly and dramatically I was bound to have some mental health-related issues so when I first noticed myself drawing away from people and things that I loved, having higher levels of anxiety/agitation, and losing focus easily, along with increasing fatigue, body pain, and migraines it was easy to chalk it up to a combo of BPD, PTSD, and PBA and general normal life stress. I mean the doctors had said I was physically fine after all. 

By the end of April I was quietly contemplating self-harming behaviors to find my balance, ANY balance, again. I could hardly focus, was actively avoiding spending time with my chosen family and friends, and stopped eating consistently. One night I was chatting with Stacy (she’s my person) and she mentioned that maybe I should check in with my psych because I was having some concerning behaviors that even I couldn’t turn a blind eye too or explain away. So I did and I also let my SIR and Alpha know something was up even though I wasn’t sure what yet. I was still very much under the impression this was just ramped up anxiety. After talking with my psych we realized that while yes, I was definitely suffering some serious mental health shit, I was also dealing with something else … something was definitely physically not right. By now I had spent over a year with three trips to the ER (and a few where I probably should have but avoided telling anyone as to not have to go) being told it was all in my head. She helped form a plan to help me sort out the dark voices that had taken up residence in my brain AND a plan to figure out what in the world was going on physically. 

So the past few months I’ve spent digging myself out of a shittasticaly dark depression. One that was significantly worse than even I realized when I found myself thinking “hey where’d all the lights go.” During this dig I’ve also been working with new doctors to figure out why my body hates me even thought all my tests say I’m generally ok. Turns out I AM crazy BUT so is my body. I’m the lucky recipient of not one hereditary genetic mutation but TWO! MTHFR (aka the Motherfucker gene mutation) and Ehlers Danlos Syndrome. Woohoo! Awkward X-Men status for the win. Or not. One of the reasons I started having more and more issues after taking the second hiatus was that without training for circus or rope regularly I was losing the muscles I had built that were counteracting the EDS. I had also lost a major form of mental self-care which left me even more susceptible to my issues.

People with EDS are called zebras.

So what’s my plan of attack now that we’ve found the missing puzzle pieces? I’m working closely with my doctors on both the physical and mental side of things. After about five months we’ve gotten a good mix of meds that are reducing the inflammation, pain, fatigue of my body. Understanding what’s going on with my body and accepting that I’ll always have issues has greatly helped my brain balance out some. So has working with my Psych and therapist. They’ve been an excellent source for checking in regarding reality. I’m also enrolled in an actual weight training class at Uni to learn the how’s/why’s of proper weight training since it’s a key in protecting my body from the effects of the EDS. Hopefully, soon I’ll be able to start training again too. I miss contortion and Lyra something fierce! Additionally, I’m making sure to keep communication with my people open and honest even when the answer to “are you ok?” is “I don’t know.”  I’m still learning to let others help me but it’s getting easier. I’ve tended to be the emotional rock for others but have trouble letting others be that for me. It helps they don’t give me much of a choice in that matter.

There are days that I am still struggling. Days when my body hurts and my brain is running a million miles per hour.  The fact that Stella, my service dog of 10 years, has hit a point where she’s not doing all that well adds a whole different layer of stress. She’s been my rock and constant through so much.  When all of this collides I become quickly overwhelmed to the point I start to shut down.  I refer to it as my brain melting. It’s both embarrassing and frustrating which just adds to the already overwhelmed status. “Irrational aemok” can’t see anything more than the world burning and breaking around her. Often times, when it’s really bad, I can’t talk and even a hug from someone I care about is too much. When those moments hit I try my hardest to listen to “rational aemok” that reminds myself that this will pass and that I just need to wait and slowly start working through the to-do list. Meds help a lot too!  

This kind of brain melt happened a few weeks ago at one of my favorite events, Florida Power Exchange, on one of my busiest days of the con.  All of the stress of the weeks before con plus Stella having a really hard week collided and being with people I feel safe and secure around apparently signaled my brain it was ok to meltdown, process the chaos, and reboot. Bad timing brain! Luckily I had my family there, particularly SIR, Alpha, Syn (leather cousin), and Stacy (my person) there. I told them I wasn’t alright and that I needed them not to ask or I’d completely lose the last threads of sanity I was clinging too. They were able to run interference when needed and help me reset within a few hours what previously would have taken days or weeks. Was I 100%? Absolutely not. Was I able to fulfil my commitments and rock them? Resoundingly yes!

That night I was able to be part of a very special flash mob during closing ceremonies. One that was six years in the making and truly important to Amaia and me. Somehow we had kept it a secret for about 8 months and had about 30 people involved. I’m still not sure how we didn’t blow it! Fitting the “You Are Not Alone” theme perfectly we performed “This Is Me” from the soundtrack to The Greatest Showman. It was intense, to say the least, both for myself and the other performers as well as the audience. Hell, I made more than one Dominant cry which made my sadist side happy! For me, the song and our performance was about being raw and vulnerable and giving voice to the fact that our bruises and battle scars aren’t just skin deep but no matter what we are worthy of love and friendship. We all have fought battles in our life and survived to see another day. We are never alone even when the battlefield seems vast and empty. It also made me think about when SIR, Alpha, and I were just starting the discussions of service and they asked about all the ways I identified not just the girl side because if they took on the girl in me they took on all of me.

Yes, the dark voices in the back of my head will rear their nasty little heads again. Will I ever be really “healthy”? Yeah, no. Am I going to let this stop me from leading a life full of adventure and wonder? BIG FAT NOPE!  Sometimes the battles are long, hard, and all up hill. Other days they’re just blips on a radar hardly noticeable. Either way, I am determined to keep fighting and finding my balance.  I fight knowing that I am not alone. That I have friends and family who have fought a similar darkness. Who care for me and are keeping an eye that I don’t dance too far down that spiral again. I fight because I am more than my mental & physical health issues. 

2 thoughts on “The Battle Continues…”

  1. I love all of you and your parts. I am always here to talk or to stfu and listen to what you say and what you don’t say. We have memories to make cuz!

  2. In case, I have not said it recently. I adore you. Sharing this, your struggle, makes me realize that maybe I can one day share mine. I love you. I see you. You will NEVER be alone.

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