The Voices of PMDD - Don't Wait Until It's Too Late

Day 100. 100 days since I have had my menstrual period. I’m 54 years old and finally heading into menopause. After a lifetime suffering from PMDD you would think this gives me joy, but all I taste are the ashes of my family, my ambitions, and myself. For decades PMDD has taken a monthly flamethrower to them all, and now I can only sift through the embers and mourn.

This disease has done terrible damage to everything that I wanted to be, and the person that I thought I was. Even though my husband understood the illness, my monthly insanity finally broke him and he was in the final stages of leaving me a year ago when leukaemia struck. Now we live together but separate, as I help him through the long dangerous recovery. We get on well enough but the loving intimacy is gone. He can’t tolerate me touching him, even as a comfort. Too late. Too late.

My grown sons love me but despise my behaviour. I’m sure I have ruined trust in women for the youngest one.

I work hard and am mostly appreciated at the office but it’s clear that my regular loss of emotional control has permanently stalled any career advancement.

I was a bright and positive young woman who truly believed I had a shiny place to make for myself and my family in this world, but this disease has made me betray the little girl that I was, the one who believed she was good and would do good things.

So I urge every one of you to fight, fight harder than I did, look for answers and for care that actually works for you whether it’s SSRIs, birth control, supplements, cannabis, diet, exercise, or therapy. Don’t get complacent. Don’t give up. Don’t assume your family can put up with this forever. Don’t wait until it’s too late. Too late is closer than you think.

~Anonymous

The Voices of PMDD: Sharing our Struggles

Today we have a guest post from a woman who has taken what I think is the very healthy step of naming her PMDD.  Naming your PMDD helps to separate you from your disorder.  You are not your PMDD and that is what we all need to remember when PMDD strikes.  We are more than our PMDD, and better than our PMDD.

I call her Agatha. 

Some of you may have met her unknowingly. Her presence is noticed only by my few nearest and dearest...and even most of them don’t understand her. I’ve decided to talk about Agatha because I spend so much time as/with her, I am tired of trying to explain myself, or feel guilty, or desperately sad that things annoy me when they shouldn’t even make a shadow. 

Agatha is my PMDD...or who I am for up to two weeks out of the month. Yes...EVERY month. I have PMDD...Pre-Menstrual Dysphoric Disorder. Have you heard of PMT (or PMS if you’re American)?  Well, PMDD also has to do with the menstrual cycle, but is a million time worse. Maybe a billion...at least. After I have ovulated and the hormone levels change, so do I. I become someone that has taken me years to recognise, and more to understand. I describe it as having the ‘Dementor’s Kiss’; Harry Potter fans will of course understand the reference. For the rest of you, that is when all of the happiness you have ever felt, experienced, or hoped for, is sucked out of your soul, leaving you with no choice except to dwell on every bad thing that has ever happened to you...in the deepest pit of despair. 

I now understand it has got worse the older I get, because I have more experiences. So there’s more happy to be sucked away, and more pain to be left with. PMDD doesn’t just mess with your mind and soul, it likes to play with your body too. Any pre-existing conditions are highlighted and heightened...luckily for me, I have a back condition, so usually I am in considerable extra pain in the lead up to the bleed. I also get a barely-controllable eczema outbreak, and permanent, draining headaches. Then there’s being so tired, that I’m not sure if I’ve been to sleep. And I’m pretty positive that the world tricks me by deciding to speak a different language to me...because I haven’t got a clue how to distinguish between words, let alone decipher what they are saying. It’s all very confusing, and delays cause you to feel very silly; therefore, it’s better not to talk to anyone.

Ah...but wait! Why would anyone want to talk to you anyway? You are nothing, and nobody. Your past experiences have shown you that, right? There’s no hope for you, so stay put and don’t move, because nobody wants you. Your children can’t stand you, you’re so irritable, and their noise hurts your oversensitive ears. They also want you to come out of your dark, safe hole - they want food, they want to talk to you, but they are far too loud for you, and they would be better off without you...right? You’re lucky your back is screwed, and your muscles are aching in every area, because then you can’t drag your unwanted, pathetic self into the road for some juggernaut to put the world out of its misery, fed up of having to have your unworthy ass live in it....no one could possibly want you around, and you should probably top yourself to do them a favour. Everyone you know would have a greater life without you in it. 

The disillusionment of the world eats you up, the unfairness of “the system” has you physically aching for the world to end. You dislike your family, you don’t want to talk to your friends...and there is nothing but pain and despair.

And then one day, I wake up and something feels different. I have a harsh stomach cramp, but that’s nothing compared to the aches and pains of the previous week. I smile at my text messages, and I kiss my husband - it feels nice. Everything feels nice, and everything looks nice. I go to wake my children up with the biggest hugs and talk about upcoming plans for fun things. Oh wow, I also need sex. Like NOW. I want sex ALL the time (see, there is an up side to imbalanced hormones!) my mind and body are depraved instead of in pain. It feels good. And I wake up the next day feeling the same...and so on. I have a wonderful two weeks of coping with everything and having big smiles, and then something happens that will either irritate the crap out of me, or a loud noise hurts my ears, or I wake up and can’t move because of back pain...so I check the calendar - shit, it’s Agatha time. 

I gave the person I become a name, so I can fight myself, tell myself ‘it’s just Agatha, she’ll go soon, just hold on’. This is my most recent tool for the battle - after exhausting diets, exercise, herbal treatments, vitamins, finally giving in to my Doctor and attempting anti-depressants. Nothing works. So it’s me against her.

She’s getting stronger, and I can feel her on her way. I’m not ready, I’m still not over last month’s visit. I want to keep smiling...but no, time to batten down the hatches, because she will be here by the weekend; I will be forced to face every demon I have ever encountered, and I’m scared.

Can’t give up though, I have to keep fighting. I can now differentiate between who I am, and what is caused by her. It’s me against her....

.....c’mon then bitch.

PMDD Symptom Play by Play Number 2

The following guest post was written by the blogger Cheekyminx. With her permission, several of her posts about PMDD are being featured on this blog. To find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support.

I did promise to write another PMDD symptom play by play, and since my symptoms just kicked in today, I thought now would be as good a time as any to bare my "hormotional" soul. This isn't easy. In fact, it sucks. It's dreadfully intimate, questionably revealing, and even harder to admit. But I am committing. So here we go...

8 Days Out

So what changed in me that I knew that symptoms had kicked in anyway? Well, I felt constipated and bloated today (first time since last cycle), I started pulling my hair out (not intentionally...my fingers just go to my hair and when I pull them away, my hair follows!), and most importantly, I feel just plain flippin' irritated for no extraordinary reason about EVERYTHING. I feel somewhat hair-triggerable, if you will. So I'm starting to avoid the things that trigger me (being everything, meaning isolated myself). I have to add that this month has been an incredibly stressful one already with plenty of relationship tensions. I was already irritable, but it felt different than it does today. I wish I could explain it. There is an accompanying intolerance now that wasn't there before...an inability to censor. My diplomacy skills are fading. Many say that PMDD magnifies what is already there. If that's true, this month ought to be a "real blast".

7 Days Out

I just flipped out over my husband saying, "don't worry", when I couldn't find how to reverse an action he told me to take in some software, messing up my work view. I did warn him my symptoms were coming on.

So are men really that stupid? Don't ever effing tell me how to feel! And certainly DO NOT belittle my frustrations with your petty sentiments of projection. YOU "don't worry"! I'm frustrated. Deal with it! Ouch! Okay, last two nights...a touch of insomnia. Today, RAGE! I think I could pick up this 20-ton glass desk and hurl it out the window like it was made of cardboard! There is a jittery tension just underneath my skin accompanied by an overwhelming desire to be alone in the house...for the rest of my life. I have ghost cramps too. That's what I call cramps that arrive before my period.

6 Days Out

6 days? I don't know if I can last another six days. Today was rough. I cried this morning. I cried this afternoon. I cried tonight. I'm feeling incredibly insecure, let down by and estranged from everyone in my life, anxious, grumpy, and deeply sad. I have wished that I would simply die. Since that's unlikely, I just vegetate with Netflix until bedtime with grateful anticipation of the total unconsciousness it brings...and hope I never wake up.

5 Days Out

Didn't sleep well last night, ironically. In fact, I was ruminating in a way that only comes on with PMDD...a hateful, angry way. I swear, I don't know where this shit comes from. I seem to manufacture it in spite of my desire for peace. Each time I woke in the night, I pounded my pillow and cursed bitterly. This morning, I did my best to isolate myself. I tried to be on my best behavior too, bearing in mind today's best bore more resemblance to a caged animal than to a somewhat decent human. Despite my PMDD Tourette's, a lovely symptom where pure shit just gushes from my lips, I managed to hold-back on some of my impulses to push and stomp. With every bite of my tongue, a part of me celebrated the tiny victory (quite alone...as it was evident to no one but me) while in the next moment I was unbridled...judging, criticizing, blaming, fed up with the same old crap...emotionally abusing my husband while at the same time hearing in some vague and distant background all the kinder things I wish I was saying instead. They were too remote for access. They were a distant land. I wanted to run to my room, to be safe, to protect not only myself but him--the only measure I have at my disposal...isolation. It was too late. His deepest wounds were activated, his own mind becoming the same enemy mine had become to me. It would seem PMDD can be contagious, even without the hormones. My husband reacted and in turn became the emotional abuser, taunting me, drilling me, pressing me, driving me to tears with his own screams of how crazy I am, how uncaring, how hopeless, telling me nothing my PMDD mind hasn't already been telling me, but reinforcing it in a way that broke and battered my already damaged spirit. He threatened me...with quitting, with walking out. He's promised that so many times, and today, I wish he'd follow through. That same distant part of me was proud of him for speaking up for himself in the only way he knew how...not for how he did it, though. How he did it hurt. I must admit today, I had suicidal thoughts. I had world-destroying thoughts. And I cried and heaved, shook and crouched in a corner, desperate to be free of this storm inside of me and the external manifestations of it. Emotionally spent, I listened to a looping recording of a mantra about 20 times which calmed my suspiciously empty mind. I can't believe I'm writing this.

4 Days Out

After yesterday, I'm really emotionally exhausted and kind of blank. I've lost a day. I thought it was Thursday but it's only Wednesday. That's been happening a lot, but I don't relate it to PMDD. It's living in the middle of nowhere! There's nothing I want to do...or feel or think. Despite needing some groceries, I can't make myself go. I feel like the remnants of a bird that has burned in flames but has yet to arise once more from the ashes. I continue my deluge of mantra listening. And I eat chocolate. I know my situation is complex. I have many marks against me right now. To be honest, I probably have some form of PTSD after two years of the worst stress of my life which I admit at least half of it I took on willingly, arrogantly even, in addition to being peri-menopausal and PMDD. I also have no grounding, having moved to a foreign country where I cannot speak the language and where my support network is still fairly non-existent. I had a massage therapist when I could afford her, and now, I have a talk therapist who I will have my first session with tomorrow (Thursday. Not today, Wednesday.) It's a trade-off. There's the recent passing of my mother, too. It's a lot to cope with. Add "relationshit" to the mix, and it's tough to tease apart the symptoms of PMDD from the disaster that is my life. So everything just swirls together into a big complicated mess. Charting saves the day and preserves what little sanity I have left by revealing an intensity of symptoms at certain times of the month. I will persevere. I am resilient. I am determined, too. And in moments, I am remembering who I am.

3 Days Out

This morning, every bone hurts. It was very difficult to get myself up and moving. I would love a massage, but I don't have the funds for one. Yin yoga will have to suffice. My symptoms were less today, which historically, has happened...things can actually mellow before the actual onset of my period. Although, usually without fail, I blow out the day before. We'll soon know...

2 Days Out

Last night, I slept 12 hours!! Pretty typical right before. My dreams were very bizarre. My hair continues to fall, and I had ghost cramps again. Another thing that's started today is a weird head-to-toe itchiness; I've heard other women complain of this too, so I'm no longer surprised. When provoked earlier, I quite easily lost my cool outwardly, but overall, in my head, I feel more stable today, so I'd have to relate any emotional symptoms to other things in my life and not necessarily PMDD. Or maybe I'll start early. The cramps are a good indication I might.

1 Day Out

Surprise! Guess what's here, sparing me an extra day of misery and uncertainty? How am I feeling? The first thing I noticed was the intense ache from head to toe as I pulled myself out of bed at a fairly human time of day. I feel about 20 years older in body. Add a headache and the typical cramping in my lower gut, too. But I can handle the physical symptoms; they are kind of a joy after the week I've had. Emotionally, I feel tentative (as the rest of my life is still incredibly challenging). But I don't feel that uncontrollable sense of building blood-level tension that prompts me to catastrophize and explode (not that I couldn't given the right stimulus...but that I don't feel that "hair-trigger" thing). My mind is also quieter. When I woke this morning, from a dream about pastries and cookies, my first thought wasn't "Oh, fuck, I'm still here; shit, shit, shit!", it was more like, "I'm up." There was no punching of pillows or immediate tears. How do I explain it? It's like an equilibrium, a balancing out. A relief! So can I count on a few days of relief? Or will something fluctuate and turn me mental again? Sometimes, on day 5 or 6, I rebound into "crazy-land" for a day. Sometimes, I'm okay until I ovulate. It's difficult not knowing. It's difficult not knowing, too, whether outside circumstances will inflict traumas that bring the stormy inner waters back to the surface. I hope not. I need some peace. I need some rest. My problems are all still there. My relationship is still falling apart. I still live in the middle of nowhere in a foreign country. I'm still dealing with loss and grief and change of massive proportions and living an unrecognizable life. Somehow, somehow, there's something accessible now that feels like strength, like resilience, like patience, and even serenity. Holy crap! Did I just feel myself smile?

The Voices of PMDD -- The Rising and Passing Storm

Today I am honored to be able to share the work and insight of guest author Julie Peavey, who initially wrote this essay about her PMDD for an English class.  I believe it will strike a chord in many hearts, and says things that have been left unspoken for far too long.  Millions of women the world over are losing precious days and weeks of our lives due to this menstrual disorder, with no real relief in sight.  

How much longer must we suffer like this?  

How do I effectively describe what I go through each month?  How do I compare who I really am to the ugly beast that raises its head, without sounding like someone who is insane?  Every month, because of Premenstrual Dysphoric Disorder, or PMDD, I temporarily become someone other than myself as I enter a storm that I cannot control and must wait for it to pass.

            I can feel the PMDD approaching, hovering, waiting.  It feels like a another presence, a shadow, that lives inside of me and it’s slowly making its way to my mind where it can take over my thoughts and emotions.  It’s behind me where I can sense it, but not see it.  I’m aware of it there and can push it back for a little while, but I can’t stop it and it slowly creeps forward, closer than it was before.  I try to prepare for the inevitable, knowing that I can never really prepare myself for what is about to come.

Darkness, despair, and swirling thoughts descend upon me.  There is a part of me that wants to give up.  I could easily spend hours lying in silence, trapped with my own thoughts in my head.  I question my existence and purpose.  “Why am I here?  Do I really matter?”  My thoughts jump from one to another so quickly that I can’t even fully register them.  Except for one.  One thought keeps coming back over and over again no matter how hard I try to push it away or change it.  That is the thought of being alone and wishing that I had someone I could connect with at that moment, someone who would really understand me for who I am and what I’m going through.  I feel the loneliness in the pit of my stomach and the tears start to flow.  I am unable to stop the emotions once they start, which only leads to frustration at my inability to control the crying.  The tears flow heavier.  I beat myself up for my lack of self-control.  In my head I am yelling at myself to stop crying, to suck it up.  It doesn’t help.  I cry harder, I wail like an infant who yearns for her mother’s embrace, because I too, am in need of a comforting touch to ease the pain of loneliness.  My mind lies to me as I’m not truly alone, but I can’t comprehend that, I believe the lies.

            The loneliness and sadness overpower me.  As a tornado twists and turns and destroys everything in its path, so do those two emotions.  They swirl inside of me destroying any rational thoughts and creating turmoil.  I feel as if I am wrapped in a heavy cloak of loneliness.  Its weight is present in my every thought and action.  My desire to reach out for help is shattered by the false realization that there isn’t anyone I can turn to for even a moment of comfort.  I have no need to share my cloak; all I need is to feel a small amount of weight lifted by the simple connection with a positive soul. 

            Then the depression starts and I go in the opposite direction and want to avoid contact with people.  I write in my journal “Go ahead, lock me up and put me away.  Help me escape this existence called life.  Medicate me until I can no longer remember my name or feel this pain.  Isolate me from the world and allow me to create voices in my head.  At least they will understand me.  Take from me what I do not want and give me peaceful bliss instead.” 

I stay home from work and spend hours wrapped in my blankets thinking that this will somehow help.  I finally pull myself out of bed only to sit in front of the television and numb the emotions with food and hours of watching Netflix.  This is only a temporary fix and somehow I finally garner the strength to reach out to an online community, a family of understanding souls who also suffer every month.  The support comes; words of encouragement and wisdom are given with empathy and compassion.  We know better than anyone else what each other goes through and because of that we are there for each other if only we ask.  “This too shall pass” is shared with me, one of our favorites, because we all know that this eventually will pass.

            And it does pass; the storm ends and the waves of depression subside as the beast settles down to rest until my body decides to send the chemicals needed to wake her from her sleep once again.  The sadness and loneliness are gone and the heavy cloak is replaced with a veil of happiness.  Life has meaning again and I laugh easily and freely. I feel peaceful and calm as I rise early to watch the sun crest the horizon and wash away the darkness.  There is light in my soul again and I stroll in the sunlight and witness nature’s glory all around me.  I experience delight and appreciation in each passing moment, basking in the joy of life.  Like the butterfly that emerges from its cocoon transformed, so too, have I emerged from the storm transformed back into my true self.  I reconnect with my friends and family and vow to always treasure the love and close bonds that we share.  I re-visit the online community and this time, I am one of those offering support and words of encouragement, because I understand exactly what they are going through and wish to ease their suffering if I can.

            The days move forward and I search for a remedy from this madness called PMDD.  I am hopeful that with the help of my doctors I will eventually find a solution that will lessen if not eliminate these symptoms.  I am temporarily free, and yet I can’t help starting the countdown until the next battle begins, and I hope, I hope and pray for the strength and courage to make it through the storm one more time.

To find out more about PMDD and what is being done (and what needs to be done) to help women with this disorder, please visit the National Association for Premenstrual Dysphoric Disorder/Gia Allemand Foundation, or the NAPMDD Facebook page.  

Also, until midnight October 26, 2016 NAPMDD is participating in the Love Is On Revlon challenge in an effort to raise One Million Dollars for PMDD Research.  We are currently in the top 12 of 150 competitors.  With your help, we could reach number one.  For more information, go here.