PMDDs Impact on Life

PMDD held more sway over my life than I care to truly think about.

It wasn’t alone of course. With it was PTSD and OCD, depression and anxiety. Undiagnosed autism and ADHD. But PMDD was an unknown trigger for a great many of my struggles, I think even before my period actually started. Hormone fluctuations do start before the actual cycle starts you know and I think I was always sensitive to them.

So what kind of impacts did PMDD have on me? Well, I’ve always been a bit more awkward and impulsive, but hindsight is 20/20 and I can see a great many of my more tumultuous and impulsive acts started about the time I lost control due to hormones after my period started.

I was never comfortable in my skin and adding bleeding every month and insecurities it brought did not make it any better. The weight gain, the acne, oily skin, and just feeling ugly overall. I never felt or even wanted to be a woman. I didn’t want to be a man either. I wanted to be me and just me. So I hated I had to go through this process of “being a woman” when it was not something I felt remotely connected to. I did not want children. I did not want periods. I did not want any of it so it just felt like this was just there to make me suffer. I felt gross, dirty, and diseased. What I didn’t understand that this was my gender identity and anxiety around my self identity being brutalized by my own mind and body. All in all it really messed up my head and how I see myself. But I talked about this in my previous post.

This leads to my mental/emotional health. I have struggled from before I knew I had hormones. When menstruation started though I had such a sense of loss of control, loss of knowing what and who I wanted to be, I felt like I was in a pinball machine. The flippers beating me around and around banging into everything but always being dragged back by the gravity to a dark well, just to be shot out again month after month. I missed more and more school, I was suck more often and had horrible migraines and chronic headaches. I felt lost and alone and wrong. How could it be this damn hard and people around me still happy and able to cope! What was I doing wrong? Why was I such an alien to this world.

When you have mental health issues and are developmentally different anyways hormones can mess it all up more than most. When I was feeling my most well was at the days before ovulation. After that I always missed work, I always had migraines, I was always more irritable and anxious, I was always more sensory avoidant, I was always more prone to panic attacks and fearful obsessions. Always. Living in a cyclical state of despair and pain does something to one’s brain and soul. It scars it repeatedly, over and over. And that doesn’t take into account the constant self berating, harm, and should statements that circle around and around and leave lash marks all over our psyche.

PMDD/PME cost me and my family alot. In trauma. In grief. In health. In money. In stability. In relationships. In love. In every aspect of our lives.

I’m still angry. I’m angry because doctors didn’t listen. I’m angry because we all suffered needlessly. I’m angry that I didn’t have a name for it much earlier. I’m angry that my children are scared of puberty because of what their mother went through.

I’m sad at the career I lost. Dreams I’ve had to give up. Opportunities that I missed. The joy of my young children. I miss the relationship my husband and I once had.

I miss my self confidence. I miss my self esteem. I miss control. I miss emotions that don’t feel like tidal waves. I miss being happy and not being afraid that me being happy meant something was wrong.

What did untreated PMDD/PME cost me? School. Friendships. Family. Physical health. Mental health. Sexual health. Career. Confidence. Self esteem. Self love.

I learned something though from my battle. I learned to fight. I learned to not surrender. I learned just what I was made of and that I can get through it tooth and claw. I will pass these lessons on to my kids and to who ever I can reach.

Thankfully, PMDD is not life long and we just have to fight long enough to be free of it. It’s going to hurt. It’s going to leave scars. But keep fighting it. It’s worth it.

Hormones play a huge role in mental health, one we don’t understand much and one that there is not enough significant research into. Yet. The players are changing so I hope that changes too.

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.

 

Why we choose to die

Why we choose to die

No, I’m not going to hurt myself so no one panic, I am writing from experience and that is all. Most people don’t know why or can’t understand why a person would choose to die (suicide). Obviously I’m not speaking for everyone, I’m am speaking for myself and I know I’m not alone in my sentiments on this topic.

The vast majority of people will have blips in their thoughts like “oh, I wish I didn’t exist.” Or “I can’t take this, I wish I was dead.” Maybe even “What would happen if I just drove my car off this bridge.” These are normal thoughts, normal for anyone facing stress and troubles that are hard and maybe feeling lost and alone. I’m not downplaying these thoughts, and if they make you uncomfortable you should definitely be talking about whatever is causing these thoughts, but in our society? They are normal.

Suicidal ideation may go beyond these thoughts, may even consume your thoughts for more than a few seconds. And it may really feel like you just want to end it and sometimes you may not even know why. These thoughts often scare us. They scare us more because we think it means we actually do want to die. Being suicidal and suffering suicidal ideation are very different though. Neither are normal, but one is suffering from thoughts and the other is being in a state where dying is sought out. One is not suffering from the thoughts. Take a moment think really think about that.

When I feel suicidal, my suffering is not caused from thoughts of dying. My suffering is caused from the thoughts of continuing to live. To live is to suffer. Pain. Loneliness. Shame. Guilt. Horror. Despair. Fear. This is living. Words and deeds leave invisible scars that fester, rot, and consume all that is healthy and light. And then I watch this fester seep into those I love, those I cherish and it hurts 100 times more than if it was just myself. I am poison. I am dooming everyone around me and I have to save them from my disease. Sometimes this just becomes my ideation, sure. Other times it forms into a desire, a plan, a hope. Regardless of what death is, it is an end to this suffering, this blight.

Most of my thoughts now are chronic ideation. No plans. At times I wish I could plan. At times I truly just want to leave this world and it would be so easy to do so. So much easier than facing every single day and night. I am not cut out for this world, this society. I scar way too easily. I go on, I wake up each day, because I’m not selfish. I wake up for my kids. I seek out care to do my best. But you can’t blame me for not being too upset if death comes knocking, as much as I fear that unknown, death and I go way back. I feel guilty for even thinking this way, so for those who died by suicide, there is no doubt in my mind that their choice (most not all) was not about any selfish thought.

Most people cannot fathom the anguish of which our minds can experience. It is akin to nothing else in this world. It lies, it poisons, it rots, it severs, it bleeds, it boils, it burns, and it terrifies. It doesn’t like to rest though. And as the scars build more and more layers, the pain can’t escape and it can’t be reached to be assuaged.

I know some who are reading this may not experience these thoughts but rather are seeking to try to help a loved one. And you may be exhausted and scared. I know, I’m sorry. We don’t want to be this way. We don’t want to dream of death. We know that it’s asking alot to listen and help us, it’s asking alot of us to continue living too. Try to remember that. If one day we do choose, we aren’t trying to hurt you. We just grew too exhausted from the battle fatigue to stand up and fight.

I don’t regret my attempt. Not any more. It gave me so much more than it took. To anyone making plans or wanting to die, I’ll listen. I can’t fix your life or your thoughts. I will fight beside you though.

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

A year since TMS

Just a short update from my TMS. When I wrapped up my TMS experience last year, it was good. I did feel better. Not 100% and I wouldn’t even say 90% but we were also buying a house and moving which for anyone is rather extreme on the emotions, stress, and anxiety. Shortly after the move I did fall apart. I burned myself out. So while I think that TMS did have some benefits, they are short lived for those like me. I have brain damage, much of my anxiety comes from my cognitive impairments and just who I am. And my insurance would not cover maintenance treatments, which may have helped me, but alas, I had to do without and have struggled since. It did not make things worse though. Which is huge really. Others experience with TMS may have longer lasting benefits, its going to be hit or miss, but I can say that on the days I had treatment and for a period after my anxiety was better, my headaches were better, and I felt overall more capable.

The human condition

Going on 3 years post op I’m still hostage to hormone fluctuations but it’s not all bad! Feeling well is not a destination. I’m never going to feel well every day, that is a myth and legend and just unattainable. This no longer really upsets me though.

I think we have been sold a bill of goods that is for things that just don’t exist. Now do I think that means we can’t feel well? Or happy? Healthy? No, not at all. It means that we shouldn’t expect it to be a constant. Considering all that we must face in our day to day lives, all the stress, all the agony, all the choices and decisions we have to make every day feeling well is always going to be at the mercy of it all.

So why do we keep pushing ourselves and telling ourselves we are failing if we are not happy and feel like we can take on the world every day? Because the media and so many people tell us that’s what we need to strive for. They are wrong. If you are pushing and pushing yourself to feel happy and well, do you think that you actually will? I know I don’t. It makes me stress more. It’s unattainable. It’s a lie. Yes they are lying to you.

Should you stop doing what you can to feel well or happy? Of course not, but you shouldn’t destroy yourself or your self esteem to try to get to a destination that doesn’t exist. When I ease up on myself, my mental well being and my overall happiness is actually satisfying. I hurt physically and some days I’m just plain miserable, but all in all, I’m satisfied where I am and that brings me the most peace of mind.

I’m not trying to get to happy, I’m trying to enjoy happy when it exists in my life. I’m trying to find the joy and spark on the days I have the energy and ability. And I’m telling myself on the days I don’t that it’s alright.

I’m forgiving myself for being human, flawed, and ill because it’s simply the human condition.

I’m not going to stop the things that may help me, I’m just not going to feel a failure when they don’t always work. I didn’t fail.

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.