Dysphoria, meet Dysphoria

Dysphoria, meet Dysphoria

I’m writing this today, not as a woman, but as a person. A human being. I’m writing today as myself. That’s important to me. I’ve thought a lot about this topic over the last year or so, a lot. It has consumed some nights. Trying to understand in case I did feel like discussing it one day I wanted to get it right. Often I worry about getting it right based on what I think other people want to see. In this case, I don’t think that matters. My perspective matters. I have so much to say and I struggle really hard to stay on topic when I start writing. I don’t write often, not as much as I would like, but when I do it just starts to pour out of me and like if I don’t get it out now, I’m going to lose it forever. Which isn’t far from the truth. Certain things come back around, but many are lost within my head.

What am I talking about then? Being nonbinary. Why? Well, even though I didn’t know it at the time, I was always nonbinary from the first moment I questioned “Why do I have to be a girl?! Its not right!” Oh lord, how I did not want to be a girl. I didn’t want to be a boy either. I wanted to be Laura or whoever I was. I wanted to just be a person. Sure some days I played up my female assets, that’s what I was expected to do because I was supposed to be female. But I’m not. Its an outward wrapping over a mind and soul that is very much just me and doesn’t feel comfortable being labeled as female or male. It feels incredibly wrong.

Why am I talking about this here? Menstruation, PMDD, pregnancy, post partum psychosis, all of it worsened a dysphoria I have suffered with from a very young age and never had any name or label to call it. In my disorganized world, I like labels. Labels make me comfortable, so when something is felt but has no label, well its scary. This dysphoria was gender dysphoria. Sure I had pretty dress and shoes, long hair, and read and did girly things. I also played with grasshoppers, wandered around in the woods, wanted to fight mythical creatures with swords, I wanted to save the damsels and the animals. I wanted to be the hero. But girls weren’t really heroes. Not even in the 80s and 90s really. I loved wearing my jeans and tshirts. I loved cars and dinosaurs. I enjoyed “boy” stuff which is kinda acceptable. You know what I didn’t like? I didn’t like baby dolls or barbies. I thought they were just absurd and pointless, no imagination, no creativity. They were only useful as riders of all my various horses. I did love horses. I also remember feeling very often how unfair it was that I be born a girl, it wasn’t that I had wanted to be born a boy, but just the unfairness of it all. I didn’t want that life. And I felt very uncomfortable being pushed into a role that I didn’t choose, I didn’t want, nor one that I could any where close as well as those who apparently understand it and enjoy it. In elementary I was consistently told I was dyke, lesbian, and all other kinds of unkind names. I didn’t understand it. I knew it was negative to them and the part that I didn’t like was that they were rejecting me some how. But the words themselves were lost on me. Thanks to my naivete. Yes, I was different. I was something to be scared of and I didn’t understand why.

Then came puberty and the slavery to hormones and womanly things began. Now I had to be a proper young lady now that I was bleeding out of my uterus each month and could produce babies! I grew out my hair, I dressed for my new body, learned makeup and hair dye. You could say I went provocative all the way. Well, if I had to have this body, wasn’t that what it was supposed to be for? Sex? Attracting men? Isn’t that what I was supposed to be good at? Oh how I wish I could go back and just hug myself and tell me how wrong I was.

I hated menstruation. I hated my periods. I felt dirty. I felt wrong. I had no control over it and that made me feel even worse. And now I had to be responsible for so much more. Taking care that I had pads or tampons, making sure that I didn’t bleed over my clothing, washing underwear because it was stained, or the sheets, the spots on the mattress. It was horrifying to me. I know many feminist aren’t going to like this part. I’m supposed to like bleeding every month, be in touch with the nature of my body. For me, that’s bullshit. I hated every moment of it. Remember my birth control pills. Buying pads that itched and were bulky. The cramps. The fatigue. The crippling migraines. Cleaning blood off my hands, legs, vulva. I cringed every time. I hated it. The fact that I could have babies. Eww. I felt more alien in my body.

And there are those who tell me I’m supposed to love that part of me. No. I can’t do that. Not even now.

Dysphoria, meet dysphoria. My mental health took a huge hit with menstruation. PMDD is brutal all on its own. Add to that many unknown diagnoses and you have a maelstrom of self loathing, hatred, shame, and confusion. My headspace was never good most days, but the cyclical PMDD crushed me. My period started when I was 14 and half years old. Is it a coincidence that by the time I turned 16 I was dropping out of high school? I think not. Is it a coincidence that I got married before I was 19? I think not. That’s what girls do right? Get married? No offense to my husband, we are still married at 16 years and I do love him still! But it was a role I was playing. Is it coincidence that until my PCOS made it so my periods would skip for months at a time that I couldn’t keep a job? I think not.

Nearly 3 years ago when I had my surgery, part of the relief was not just that I no longer had PMDD. But that the very things that so many people consider critical in being female were no long a part of me. I could cry with joy at the thought that I no longer have a uterus! I can no longer have children. Many women cry because they think this means they are no longer a woman. For me? That is what I have wanted for so long. And I feel shame for that. I feel shame for being glad that I am rid of that which so many women would love to have again. But I’m not a woman. I’m not. I don’t expect you to understand. I felt enslaved. I felt forced. I felt violated. Just by having a uterus and ovaries and all the rest that came with it.

Now, I feel free. I’m not a woman. I’m me. A person. Free of PMDD. Free of servitude to dysphoria upon dysphoria. I have so much work still ahead of me. So many more holes to claw my way out of. This though, this is freedom to be able to do just that.

 

Menstrual Related Psychosis

Let’s talk about Premenstrual Dysphoric Disorder and experiencing mania or psychosis! Yes, this does happen. Yes, it is often misdiagnosed. Yes, it can be treated. Yes, you can live a better life. PMDD can be a very hard disorder to live with. When you get thrown in manic or hypomanic symptoms or possibly psychosis, it can make life unbearable. It is important to talk about this as it is nothing to be ashamed of, its more common than we all think, and there are things to do that can help. First, is to understand how and when mania/hypomania or psychosis may present for you. It’s true it’s not the most common issues when dealing with PMDD, but women do experience it so let’s talk about it.

Mania or hypomania are different and are experienced differently. If you are experiencing these symptoms it does not mean you are bipolar even though it is most commonly associated with bipolar disorder. Manic episodes generally last a week and include a feeling of euphoria, elevated energy or irritability. Manic episodes also generate racing thoughts, rapid and pressured speech, decreased need for sleep, grandiose ideas, rapidly changing conversational topics that are unrelated, restlessness, impulsivity, poor judgement, and engaging in risky activities. Hypomania is usually an episode that lasts 4 days and includes many of the above symptoms but not to the same extent, it is milder. Especially be on the lookout for increased participation of goal oriented activities or engaging in activities that have a likelihood of negative consequences.

Mania or hypomania may occur both before or after ovulation. For myself I experience hypomania and sometimes mania, prior to ovulation. I felt wonderful, I felt I could conquer the world, I engaged in way too many activities, was very impulsive and compulsive and overall I ruined many parts of my life. It was very tricky to identify what was being happy or what was hypomania. Yes, I received a misdiagnosis but upon finding the right path for me and understanding more about my hormones, how they affected me, and tracking carefully I could be conscious of my hypomanic episodes and reach out to family to help me. Sadly, bipolar medications were not of any help since it was a hormonal issue for me.

I want to address psychosis now. I happened to suffer from postpartum psychosis and sadly it continued to be a monthly experience for me there after for years. It was one of the most traumatic experiences monthly for myself and my family. Because of misdiagnosis and not knowing that hormones can in fact induce psychosis, I felt so horribly alone. I felt broken and that I was a burden on those around me and was only traumatizing them. As many of you well know, PMDD has a nasty way of making you feel like you need to save your family from yourself, when you add in psychosis with hallucinations that tell you the same thing, sadly it is more than enough to drive women over the edge and to suicide. I’m including this list of possible symptoms many of which women with PMDD suffer through each month, the kicker is going to be the second part of this list.

  • Social withdrawal/social isolation or loneliness
  • Apathy
  • Agitation, restlessness, hyperactivity, or excessive excitement
  • Anxiety, nervousness, fear, or hypervigilance
  • Hostility, anger, aggression
  • Depersonalization (a combination of intense anxiety and a feeling of being unreal, detached from oneself, or that one’s thoughts are not one’s own)
  • Loss of appetite
  • Worsened hygiene
  • Disorganized speech like rapid and frenzied speaking, incoherent speech, and excessive wordiness
  • Disorganized behaviors, like a lack of discretion or restraint
  • Catatonic behavior

The second part to identify an episode of psychosis:

  • delusions (beliefs with no basis in reality),
  • hallucinations (for example, hearing, seeing, or perceiving things not actually present),
  • the sense of being controlled by outside forces, or paranoia
  • disorganized thoughts.[i]

This list is not here to scare you, this list is simply to let you know that if you are experiencing any of these symptoms along with your PMDD, you are not alone. It is helpful to have information that can guide you on the right path to treating yourself and taking back your life. It wasn’t until years later that I had heard about premenstrual psychosis, as it is no longer studied in the medical profession. At one time it did exist, so its is entirely possible for a small population of women who suffer from PMDD, to also exhibit psychosis during their cycle. It is of utmost importance to know you are not alone, to know that these are symptoms of a chemical sensitivity and something that can be treated.

After ovulation, and my progesterone spiked I would suffer from psychosis, with hallucinations, paranoia, disordered thinking. I would also experience moments of depersonalization and rage. It was like my mind had been hijacked. I was a little girl sitting in the corner of my mind, watching my body go through these horrors, hearing the words come out of my mouth that I could not control but wanted so desperately too.

PMDD is not an easy thing to battle month to month, as soon as you get a short reprieve, then you are right back at square one. We try so hard to mask our difficulties but I’m here to tell you that it is crucial to getting the help we all need to be completely upfront about what we are going through. You are never alone, there are millions of women who battle PMDD and who even have similar stories to you. I know I am not alone. I chose to go the surgical route when I was 32 and have a total hysterectomy and oophorectomy. I no longer combat PMDD, I no longer destroy our lives with hypomania, and I no longer suffer bouts of psychosis. However, because of my battle with PMDD and all that it brought to the table I do have Complex Post Traumatic Stress Disorder. Please know, even when PMDD ends, we experienced trauma, we lived through trauma, and it is okay to still struggle in our daily lives. There will always be someone there to listen, someone who understands, you will never be alone.

If you or someone you know is dealing with PMDD, has episodes of mania/hypomania or psychosis, please reach out first and foremost. No one wants to go through this. There is help. While mood stabilizers may not always work, sometimes antipsychotic medications can help women who suffer with PMDD. There are always risks to taking medications, but there are risks not getting the help we need too. The first step is to always track, every day, to find a pattern to the symptoms. Many menstrual tracking apps can be useful and include many symptoms as well as the ability to write notes should you need to include further details. Talk to your loved ones, talk to your doctor. Let them know your fears about discussing this topic, what you are hoping for and what you don’t want to happen. It is your life and it is your body, you do have the right, even when you are suffering mentally and emotionally to control what happens to you. Reach out to peer support groups and educate yourself as much as you can. There is hope, it takes a lot of work, but there is hope.

 

 

 

[i] http://www.medicinenet.com/psychotic_disorders/article.htm

Pure – O

When I ran across the term pure O or purely obsessive compulsive disorder, it felt the same way as learning about PMDD for the first time. It struck to my core. There have been many things I’ve looked at and thought oh that does fit me, or maybe this is what I’m struggling with but few have resonated the way that PMDD did and now pure O.

As I’m writing this I have just a basic understanding of pure O but within me, with every part of me, it is my truth. For a time after my surgery for PMDD I was well. I was very well. I was succeeding at everything I tried. In fact just months after having surgery I successfully moved myself and my kids up to Washington, where my husband had been for the past year but I couldn’t join him due to being too sick every cycle. I was homeschooling and doing it well for once. I was able to organize our home better than I had in years. I was always cooking and planning our meals. Those first months we didn’t ever eat out. I was succeeding at taking my life back and achieving my dreams.

But something happened and it seemed to trigger a whole new bout of what I now know is pure ocd. I felt like everything I had been doing was a lie. That it couldn’t be true. That the monster still lurked inside me and this was all just a lie. I’m not well. I can’t be well. Why can’t everyone see that I’m not me, that I’m not what they think, that I’m still that monster. Then the thoughts that I might hurt someone, the constant fear of something bad happening, and me being the cause. The fear for my children and their lives. The fear that nothing is real. When you combine pure o fears with dissociations due to PTSD and you are already doubting reality, well it takes on a whole new theme.

Since I was young I have been very anxious. Neurotic. I’ve lived in constant fear it seems for nearly my whole life. Sometimes it swallows my existence, sometimes I can see through it for a bit. But I’ve never been able to explain why I’m so anxious, so fearful. I couldn’t put into words just how all consuming these thoughts have been and knowing that they aren’t rational hasn’t helped me as I keep dismissing everything but its still swallowing me whole.

I just spoke, in fact this morning, to my husband about how I felt that I was self sabotaging myself as a form of self punishment. For not being better. For not living up to the person that I know I could be. I wish I could put into words just what it feels like in my head. Thinking that I should suffer. Thinking that I’m this horrible thing, inhuman, that I deserve every horrible thing that has happened, because obviously these thoughts prove that I am disgustingly monstrous.

A near constant theme with my therapists has been me saying how worried I am that I’m a narcissist or a sociopath. I’ve even told them that I fear I’m a psychopath, I’m no longer in touch with my consciousness like I should be. And I get the same response each time, its impossible for a person who obviously cares so much about others, worries so much about others and how they feel, and making sure I don’t hurt anyone, that it just is not possible. I don’t believe them. No, my thoughts whisper to me that they are lying, just refusing to see what is truly there.

I read one blog post (My room is a mess but I still have OCD) in particular about pure O that cut me so sharply, that their words mirrored exactly my own being and my own thought patterns and I have to say I cried, in a primal way, as in the loss of your being. I felt my true self laid bare for all to see. I can’t prove that I’m a monster because I’m not a monster.

And in one particular poignant video from The School of Life (see here) was the description of  a sufferer of pure O as someone “who has derived the impression that they did not deserve to exist… (and their thoughts) an attempt match their basic sense of self and what would be needed by their society to concur with it.”

I don’t think I’m far off the self sabotage as self punishment when I spoke to my husband. My sense of self is, honestly, that I shouldn’t exist, I don’t deserve to exist much less be happy or successful.

So what will I do with this knowledge? I’m going to go seek treatment. Apparently, there is a form, ERP, that may be beneficial. I don’t like living like this. I don’t like living in constant fear of myself and the world around me. Feeling like a monster, an alien, that I have no right to be here and or that all I’m ever going to do is cause pain for others. I’m sad. I’m sad that again I’ve spent years struggling with something that has a name but is so unknown to so many. I’m sad because with out a doubt the phrase “obsessive anxiety” written on my daughters diagnostic report in some form or fashion is exactly my struggle, which I too had a that young age, and that I have not searched out for the proper therapy for her yet. I’m sad that I know moving forward that it will hurt to try to heal this part of me. Because it is my core. It is me. I am, truly, the monster inside me and my own worst enemy, just not in the way I believed before.

To my Mom…You are a hero

I didn’t get a chance to write this yesterday. I wanted to but my head wasn’t in the right place. I pondered for weeks what I could get my mom for mother’s day. She isn’t your typical mom, much less a typical woman. Her needs and wants are hardly expressed and mostly, she is content. Except she misses her grandbabies. 😘

My mom is human this she is flawed and imperfect. Her biggest flaw to me though is not seeing just how incredible she is, how strong she is, how intelligent she is, and the most loving soul I have had the privilege to know.

My mom fought so hard against mental illness and stigma. And there were days she failed, but she found a way to keep going. I’ve been there Mom, I know how hard that is. I know how much it hurts and the guilt and the fear that envelopes us.

Your fight, your strength, your bravery (yes you are incredibly brave) helped me through my darkest and deepest hells. I don’t need to compare our life experiences, there can’t be but we have both been in hell and clawed and fought our way back. We still traverse the pits at times but we go through it together.

I see soany other daughters have horrible relationships with their moms. I want to cry for them. Regardless of what happened in our past we hold on to each other and we are more than just.mother and daughter. We always will be. Mom, I couldn’t think of anything to get for you but I can give words to just how proud I am to be your daughter. How you have helped me through the worst times, watched over our little angels with more love than I could have hoped for, and held me when I needed you most. I love you and I miss you every day. You can never know what kind of hero you are because you can’t see what the rest of us see. Thank you for everything, thank you for your unduing love and support. Thank you for being my Mom.

TMS day 6 – 11

TMS day 6 – 11

It’s been awhile. Sorry, been a bit busy what with 13-16 appointments per week and exhaustion, burnout, and well life. Had a couple medical issues from family members and they are tearing apart my apartment wI love those moments when I feel like loving life again.hich is driving absolutely crazy. Yes I used the word crazy and no I don’t feel guilty, I have a right to that word because I have been crazy and insane and it applies. It’s mine, back off!

Anyways, the TMS has been working for a few hours after each treatment. I have had a few setbacks due to missing days or because my medicines or hormones got screwed up. I found I cannot take Vistaril for anxiety. It creates this simmering pool of rage just below the skin that overwhelms me and terrifies me. Yeah, little known side effect. I’m also off today to get my new GP to increase my estradiol because if I don’t get my levels up then I’m not setting up the TMS and ME for the best chance of success.

I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.

I’m up to full strength on both sides. I definitely can tell it helps with my anxiety and I feel lighter after each treatment. Currently that feeling does go away in the evenings and I feel like this stifling fog has layered itself back over me. To be honest, I hate that. I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.

I want desperately to feel well, rested, and like I can live again. I was both elated and crushed when I got my response from my disability review… “Your disability is continuing.”

I cried both out of relief that I wasn’t going to be shoved off the deep end and possibly back into psychosis but at the same time so sad that this is me now. I am that person, with a truly invisible disability, constantly judged by society who has no inkling of what my life has been or continues to be. I miss work, I still dream of walking into one of those beautiful high rise buildings in downtown Bellevue and sitting behind a desk going over year end financial statements. I want to be that powerful individual who provides for their family and can whisk away to great vacations and buy the car of my dreams. I want to earn an income to allow my husband a chance at retirement.

Stress though can lead me straight back though. It affects my hormones, thus I can’t allow more stress until there are better answers to my hormones issues and resulting mood disorder.

I love those moments when I feel like loving life again

So far, no side effects from TMS. YAY! I am truly thankful for that as I seem to be so sensitive to so much now.

I’m learning more about natural ways to help me. Meditation and I’m looking at essential oils, even if it just helps me feel a little calmer I’ll take it. My vitamins/minerals are crucial and cannot say enough about a good magnesium and vitamin D3 with K2.

I’m doing all that I can to set myself up for success. I’m hoping my insurance will approve maintenance TMS treatments for me if I should need them. The hope is eventually my brain will be trained to keep the activity level changes TMS is making to my neurons. Keeping fingers crossed and I promise to keep updating when I can!

I love feeling light. I love that the racing thoughts disappear for awhile. I love that I am able to sit outside and enjoy the sunshine and not care what others think of me. I love those moments when I feel like loving life again.

TMS Day 5 – I’m so tired!

It was a long weekend! Day 5 TMS treatment was Monday, but I wanted to wait for 24 hours to give me time to analyze a whole day. So like I said in Day 4 my hormones got messed up and my worst days would be Friday and Saturday. Saturday proved to be a doozy for me, I was all over the place and it was bad. I also had a damn virus and felt physically miserable which just exacerbates everything else.

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Monday I was still recovering from the weekend. I panicked in the morning because apparently, I forgot to turn my alarm, but my body faithfully woke me up right at 7 AM. Got my kids ready, my TMS appointment was at 9 so I decided since I had to leave pretty early I could also take my kids to school. They were thrilled with me. They don’t really enjoy the bus, it’s too noisy and busy for them. I don’t blame them at all. I got them dropped out at school, got me a drink from a local 7-11 and headed into traffic to get downtown.

Going in I had to do my weekly mood/sleep/anxiety questionnaires. For the past several months I didn’t really have to think about it, because my answers had always been the same. It wasn’t getting better. Now though, instead I had to actually think about certain questions. It wasn’t that it was huge improvements, but that it was a noticeable difference under certain categories. Like my sleep wasn’t as disturbed, I had periods where my thoughts weren’t jumping to anxiety-inducing thought after thought. I was still sad a lot of the time, but not all the time. I didn’t feel hopeless all the time either. I had more than one bought of hope, of clarity, of when breathing wasn’t a chore. I had occasions where I could see a break in the cloud of depression and pain. I noticed even though I had a horrible weekend, I did not have any panic attacks. My mind didn’t keep poking at the constant annihilation anxiety that keeps sitting back there and laughs at every hopeful thought of mine.

I struggle with depressive realism, yeah it’s a real thing, and I come off as extremely jaded, cynical, and completely the opposite of the happy go, lucky person, I used to be. I mean that is what usually happens in life right? You grow from your experience and become jaded? But jaded to the fact that you should try to find something in life to enjoy? That there is even a reason to experience happiness in life if you are just going to die and your whole self is tossed into oblivion? Yeah. Happy thoughts.

Anyways, back to the topic brain, stop running away.

Treatment was easy Monday. Its becoming routine now, I go in, get settled in, chat with the TMS tech about how I’m feeling and any adjustments I need to make. I plug into and watch my heroes on Supernatural, my Winchester Brothers, and Castiel, my guardian angel in a trench coat and ignore the tapping on my head. Max strength and frequency on the right and I was at 115% on the left. Nearly to 120%.

I was in an out faster than I thought. I enjoy just going and sitting and not really having to think about doing anything for 40 minutes total and enjoying my show without guilt.

As I left, I made sure to pay even more attention to my mood and anxiety levels. I noticed it all day. I checked in with myself often. I am often hyperaware of my thoughts and emotions anyways, but usually I get bogged down in them. I didn’t today. I could check in and move on.

Until around 4:30-5:00 pm.  I burned out at that point and my mood noticably dropped. My sensory issues came up, my irritability came up, and so did my anxiety. It was the cloud lowering back down and enveloping my mind. I knew though I just had to get through to the next day, the next treatment. I knew that the TMS was making a difference, just for several hours, but maybe my brain could learn to what it needed to do. Maybe this old dog could be taught new tricks.

Much love my peeps.

Day 2 & 3 of TMS

I didn’t write up my experience yesterday, not because it was bad, just because I ended up running all over the place in the afternoon and made a mad dash to Costco in the evening for some badly needed groceries. Rather than having to go into Downtown Seattle for my treatments I can no go to a more local office, so traffic is much better and its closer. No parking garage either! My car will be much safer! Yay! 😀

Anyways, back on track now. I did take my Adderall today, I promise. Just not responding very well.

For Day 2 and 3 my treatments both took about 35 minutes total. That is 15 minutes on both sides, plus the setup and finishing. Very simple, I walk in to the office, the tech usually is ready for me and takes me back to the treatment room. Again same chair, which by the way has a very adjustable headrest, which is nice. I’m on the taller side for my gender and I have a long neck so having the ability to adjust it is helpful for comfort and being able to sit still for longer.

They are starting treatments on the right side, which is still like a tapping metronome to me. It still makes me drowsy. My therapist suggested I put a metronome app on my phone for moments with heighted anxiety if that is really soothing to me.  I get to now watch Netflix on an iPad with ear buds during treatment, which means I get to watch my favorite show Supernatural! This makes time go by very quickly and keeps me focused on things other than the tapping.

The area where the “tapping” is a bit sensitive to the touch now. I am currently at 105% of the threshold strength. Therapeutic levels are usually around 110-120%. On the left, they are going to keep building up slowly to 120% and on the right for me it will be 110%.

Both days I did experience mild pain behind my left eye due to the placement, meaning that the frequency is hitting a nerve. They did work to adjust it and most of the pain was greatly reduced. I did still have mild pain behind the eye, but it was very much bearable. This is due to just where my nerves are and where the placement of the coil needs to be to be most effective.  The tech was very accommodating and understanding. After the treatment I have not had any residual pain and though I have a mild headache, I usually do most days anyways so for me it is not an issue.

I found out yesterday my estrogen levels are low, which is definitely impacting my mood given my history and what I know about myself, so hopefully between getting into see a new doctor who specializes in hormones and TMS over the next few months I will start seeing improvement. I hope I get some semblance of energy back soon, we will be moving in June and that process is already driving my anxiety and fatigue.

I’ll have more to share this weekend after the first four days of treatment. So far its pretty simple and essentially painless.