PMDD Doesn't Do Normal

A guest post from a reader who understands her PMDD well, but didn't always...didn't understand it at all for more than two decades...  I am posting this because she could be any one of us...  Any one of us at all.  

Living amongst demons.…

I THOUGHT I suffered depression for years and the depression was like a rollercoaster sometimes out of control and sometimes more manageable but always there in the corner like an unwanted house guest. 

I THOUGHT I “just” had bad PMS and could get enraged at the drop of a hat.

I THOUGHT that was just my way of life now—I was unhappy in my marriage but accredited that to my issues with ‘depression’.

I THOUGHT about all the symptoms I had and how some didn’t quite fit in the depression tick list and how I couldn’t even fit depression correctly.

I THOUGHT pills were a way of life but why did they never really resolve anything?  I would up my dosage until I couldn’t anymore...only to find the rollercoaster was now an even wilder ride than before.

Then, just over 2 years ago, after receiving counselling for a childhood issue, I found the courage to leave my unhappy marriage. I spent some time alone and the plan going forward was to concentrate on me and my children and this ‘depression’ that had blighted my life…

...only life doesn’t go to plan and instead I ended up meeting and falling in love with the man who was to change my life in so many ways, including discovering PMDD.

The unveiling of a Monster….

Through a series of unrelated events I met my PMDD.

So here I was, deliriously happy, in love for the first time in what felt like an eternity…

An innocent joke made by a friend:  “You may be happy now but has he seen you at that time of the month, kicking cupboards, punching walls, and slapping him?  That love at first sight feeling may drain then, eh?”

I laughed, and said, “I never hit my ex—always punched objects or throwable items only.  Kicked a few doors through.ˮ

My friend realized I was being serious and asked, “Are you serious?”

“Yes.  Every woman does for a couple of weeks before their period, don't they?”

“Er, no.”

Silence.

Growing up, periods and “embarrassing” women’s problems were not talked about in my house.  At all. I wasn’t told what periods are. I instead have an horrifying memory of blood trickling down my leg in the school changing rooms and me sprinting all the way home, crying, thinking I was dying. My mother ran through a textbook version of This is why and don’t talk about it...

...So I didn’t.

Until a joke about periods made me wonder.

Isnʼt it NORMAL? Doesn’t every woman have extreme rage over silly things? And I don’t mean get a bit moody (although that is in abundance also) but no… rage, like a bubbling anger inside you, a pressure cooker just waiting to explode at the most unexpected time?

Isnʼt it NORMAL?  Doesn’t everyone bleed so a packet of Always can be polished off in a day?  Doesn't everyone have to wear two pads at a time and it still ruins clothes and underwear?

Isnʼt it NORMAL? Doesn’t everyone have a migraine about two weeks before the big day? Not just any old migraine, but a crippling, debilitating, every-sound-is-magnified-and-echoes-around-your-head-like-tiny-hammers migraine, where your strongest painkiller that usually packs your headache away in minutes won’t touch this baby—in fact, it reduces you to tears every month?

Isn’t it NORMAL that your stomach swells to the size of three large melons for a couple of weeks a month, so that none of your clothes fit anymore?

Isn't it NORMAL that cravings take over, where every carbohydrate becomes your best friend and worst enemy all rolled into one?

Isn’t it NORMAL that anxiety reaches climaxes that debilitate you, where day-to-day tasks feel like a high endurance challenge you haven’t the energy to even think about, let alone complete? Where facing people in any situation makes your heart feel like it is going to pound out of your chest?

Isn’t it NORMAL that depression pushes you deep into a pit where you feel complete despair but don’t really understand why, and nothing positive can be included in your world right now because no positivity exists anymore and the world is a dark hell?

Isnʼt it NORMAL to experience so much pain during your period you feel you should be in a hospital, and not on a couch with a hot water bottle?

Isn’t it NORMAL to not be able to look in the mirror because you are so unhappy with this person vacantly staring back at you?

I started to suspect maybe not, maybe this isn’t NORMAL after all...

...then came the Eureka moment, the grand unveiling of my PMDD.

This came from being in so madly in love that one second away from this man made my heart ache…

then suddenly…

I am looking at this man and wondering Why am I with you?

I don’t fancy you.

I definitely don’t love you.

My man protests. “Whatʼs wrong?  You do love me, darling.  Look at all these texts, these photos, these little love videos we sent to each other!ˮ

And then he says:  “Why does this keep coming up every now and then? I don’t understand!ˮ

So I look at these texts, these videos, these photos of a happy couple—but it’s not real.  It isn’t me.  That can’t be me.  Not the real me.  I can’t just “imagineˮ all of these negative feelings I am feeling now, in this moment, not to be real.

“No! Youʼre lying!ˮ

Now I am angry at you.  “Don’t lie! I wouldn’t love you!ˮ

Now youʼre clicking my pressure cooker rage on. I DON’T FANCY YOU, NEVER HAVE, NEVER WILL, AND NEVER WILL LOVE YOU….

Then my period comes and I am awash with love for my man, my beautiful man.

I am now full of another feeling—guilt—guilt that I have treated my beloved like a stranger, and an incompetent, unattractive, unlovable stranger at that. I feel like I was featured in an episode of Supernatural and was being possessed by a demon.

I could see what the demon was doing but had no control until the period exorcised it from my body and mind.

So now it was clear… The reason it wasn’t crystal clear to me for the 20 years previously was my unhappy marriage.  It is easy to blame depression and complete lack of insight regarding a woman’s cycle, but now I have found my soul mate and for two weeks a month we have a relationship that people find sickeningly sweet, the kind where “You put the phone down first, I love you,ˮ “No, you, I love you more…” so WHY, WHY would that change?

EUREKA! 

PMDD!

So for the last two years I have been researching this demon, liaising with my doctors, checking, comparing, having ovulation tests, making notes, diary entries...

...and the conclusion is this monster lives in a closet in my head until it’s time for its centre stage moment.

What have I learned?

PMDD is like a chameleon that can adapt and change to capture its enemy and inflict the most damage.

For example: it goes for my relationship feelings, every month, but my partner is amazing.  We adapt better, we know when it is coming.  I get a mist, literally a mist, I look around and it is like the room has suddenly become foggy. This is my sign it is here, the monster has arrived....

So we don’t panic anymore. We go to PMDD mode.  I give the heads up to my partner.  Instead of sloppy love texts, just four words set in place a temporary change in our relationship.

“the mist has arrived”

From this moment on we are now buddies, just good friends, no attempt at affection because he knows I no longer love him, he knows when what he is saying or doing is setting the pressure cooker switch to on so he backs off, allows me to explode in a safe way or just allows the hurtful words to roll off him.

I am lucky. I have a partner who can help me get through another month, survive another cycle.

BUT…

PMDD is clever.  As I said, it adapts. So now it knows I am getting good at battling my demons. So now it changes... now it cranks my anxiety up to uncontrollable levels where I am panicking about everything and anything... I worry my children will fall down stairs, will choke when cleaning their teeth, my partner is going to be killed in a car crash, have an electric shock from the toaster… and bigger and bigger, more extreme thoughts, thoughts that don’t stop….

It throws me into a pit of depression where I can’t leave my bed for days. Everything anyone says around me sounds loud and doesn’t make sense. 

Why doesn’t anyone understand this hell I am in?

There is no way out… the world seems a dark place… I am broken….

So far I haven’t found anything that pulls me out of this pit of despair.  For now PMDD has won yet another round.  I will let it have its minor victory until I can adapt, until I can change, until I can throw up a quick ladder out of the pit, until I can press pause on the vortex of negative thoughts that engulf me…

And so it is… My cycles have now become rounds in a boxing match… Some I will lose, and some I will fight, and will come out battered…exhausted…bruised… and a little more clued up to this hidden enemy.

But for once, I fit a symptom tick list…

I now KNOW what I am dealing with.  And that PMDD is not NORMAL.

And that makes all the difference. 

Until the next round, PMDD.

I will be waiting.

~K

Guest Post, Cat's Story: Living with PMDD

I have suffered with Premenstrual Dysphoric Disorder (PMDD) since I was 13, but I was only diagnosed at 27. For over 10 years I had been diagnosed as depressed and in and out of community mental health departments. After stopping the Pill and having a baby at age 21, my hormones went crazy and I suffered pre and post natal depression. In the years that followed I began noticing a pattern to my moods and depression. At times, I thought I really was severely mentally ill. I always had PMS, but I realised  my worst times happened when I was due on my period. My PMS was so severe  it had begun to take over my life, wreck relationships, ruin jobs, studying, and caused me so much emotional pain I often found myself considering suicide. I would become housebound, with no social life or friends and fearful of ever making an appointment because I could never guarantee how I would be feeling.

It was only my persistence and researching that made me realise I did in fact have a mood disorder and not straightforward depression. I Googled 'mood disorders' instead of depression and discovered PMDD – Premenstrual Dysphoric Disorder. I read the only book available at that time, and began to track my moods using a chart from the book. I found a GP willing to listen, took in printed information and my charts and got the correct diagnosis of Premenstrual Dysphoric Disorder. Coming to terms with what that meant took many years, and sometimes I still struggle.

PMS is one thing, many women suffer with moodiness, anger, irritability at pre-menstruation, but my PMDD threatened to destroy everything. As a mother, I felt I wasn't well enough to look after my children, I have been unable to work and feel really separated from the rest of the world. Only 3-8% of women suffer with PMDD, the rest get through each month without disaster. It is very difficult to find people to talk to who understand what I’m experiencing when PMDD is so rare, and when menstrual problems are often seen as something to joke about or ridicule. I have often dealt with comments like 'pull yourself together' and 'get a grip', and even people denying PMDD exists.

PMDD is distinguishable by the dysphoria that is experienced. Feelings of being completely overwhelmed, spiralling thoughts, outrage, anger, frustration, anxiety and suicidal ideation coupled with the physical symptoms, which can include, bloating, IBS, tender breasts, cramps, lower back pain, lethargy, and sleep and appetite changes. I am sensitive to the changes in hormones during my cycle, and I also experience a few days of unstable moods and physical symptoms during ovulation. My PMDD does not occur once a month but twice a month, leaving on average 10-14 days of feeling like me, and the rest being spent coping with symptoms. This will continue until menopause.

I am now 34 and have tried every medication offered to me. I have discovered I am very sensitive to any type of hormone and cannot tolerate the Pill or IUD. I spent a total of 5 years on anti-depressants, which never really worked for me. They took the edge off, but didn't stop the extreme lows and outbursts. I have seen psychiatrists and gynaecologists. At one point, I went through hormone treatment to stop all my hormones and put me into a chemical menopause. This is often a route that works for PMDD sufferers, and many go on to have hysterectomies. Unfortunately, this option did not work for me, and the treatment made me very ill.

I have found that counselling has helped, along with mind techniques such as CBT, NLP and meditation. Finding support is essential. Being able to talk through the irrational thoughts can usually avert disaster. Keeping busy is also a good way to keep the mind focused, so I draw, create, paint, write and bake lots!

I am now medication free for the first time in my life. I have had to learn my cycle and I now plan things around it. I avoid busy social situations when I know it will be too much for me. Eating healthily, regular exercise and avoiding stress has also helped improve my symptoms. Making sure I continue to communicate with loved ones and work through problems, finding strength to leave the house even when I don't want to and being open and outspoken about my disorder all contribute to life feeling easier and less stressful and traumatic. Fitting into society and getting a regular job is a whole other problem. After all, who would employ someone who can only function and deal with stressful situations for 10-14 days out of every month? I focus on my children and being the best mother I can be, my writing, art, and getting through each month without trauma. 

Living with PMDD is very challenging, but I am trying to make the best of my life, for me and my children. There is always hope, the negative feelings and dysphoria will always pass. Life is a rollercoaster but as someone once said to me – you're a long time dead. Women need to speak out and stop being ashamed of suffering from PMS/PMDD. Every voice helps change the way people think and I find talking and being honest is always the best option.

You can find out more by reading my PMDD blog and check out my artwork.