‘This isn’t just something all women go through, like starting your period or having a zit on prom night’: living with PMDD

Guest post by Elaina Moscato

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April is PMDD Awareness Month. According to Mind: “premenstrual dysphoric disorder (PMDD) is a very severe form of premenstrual syndrome (PMS), which can cause many emotional and physical symptoms every month during the week or two before you start your period”

“It is sometimes referred to as ‘severe PMS’. While many people who are able to have periods may experience some mild symptoms of PMS, if you have PMDD these symptoms are much worse and can have a serious impact on your life. Experiencing PMDD can make it difficult to work, socialise and have healthy relationships. In some cases, it can also lead to suicidal thoughts.”

In our first guest post from across the pond, Elaina Moscato writes about her experiences of everyday life with PMDD.

ElainaAs I sit at my job, I feel the storm brewing. I have a life preserver that is deflating (my Modafinil, which treats excessive sleepiness), and I’m trying so hard to hang on till 5:00pm. I know the worst of the PMDD is creeping in. My head bobs from exhaustion. I hide behind my office door, avoiding chats about “diet plans” and what they’re having for dinner – conversations I just don’t have the power for. I blank stare, without blinking, longer than the Mona Lisa.

The brain fog is the worst during these days; I once forgot my debit pin at a gas station TWICE! The young attendant didn’t think I was as adorkable as I had hoped. It’s not easy at all. I would rather go through labor again than deal with another 2 ½ weeks of this mess.

It has taken me a long, long time to come to a point in my life where I understand what is happening to me every month. I have always been tired. I have always been emotional. But, something else was wrong too. It was deeper, and I couldn’t quite pinpoint it.

I started to go to doctors for my severe exhaustion and sadness at nineteen. I had just met this young Stallone type in a very dramatic, love at first sight kind of moment. I was on cloud nine but just so tired, so emotional. Growing up, I was never one to run to the doctor for minor things – so it started out slow. At first it was just a diagnosis of mild depression or anxiety. Ok, I thought, I can deal with that. I will just breathe in and out more, and try to relax. So easy!

Fast forward my life, two years or so, and I now have two children. Now the exhaustion is ten times worse. Crap, I have two kids and a husband now. So, I go back to the doctors. This time I receive the same diagnosis from my male gynecologist, my male primary physician, and my male therapist: “But of course you are tired and anxious, you have two children!!” Noted, MEN, duly noted. Fine. I start my regime of antidepressants.

I then start to notice I am sleeping a lot, more than ever before, but interspersed with periods of restlessness and not sleeping well. I’m confused. I take my kids to school, come home, sleep till I have to pick them up, then go to bed early most days. I feel crazy; severe anger and crying spells come about all of a sudden over nothing. I once found myself irate because my daughter turned around in the shower and knocked the shampoo bottle off the ledge.

I would have these horrific days right before my period, and then it was as though the clouds broke and the sun was back! I could think again. I could interact and feel human again. I would have days where I was up, productive, and loving life. I cleaned the fridge out! Soap scum in shower, GONE! Finally a real mom. I knew it was time to head back to the doctors.

Same diagnoses: more depression, more stress, more Zoloft [Sertraline to us in the UK – an SSRI antidepressant]. I was also taking over the counter sleep aids more and more often to feel I was getting a “deeper” sleep, in the hope I wouldn’t have to nap during the day. It didn’t work. Leaving the house would spark severe panic: “when will I get a nap in?”, “will I even be able to  converse correctly?”, “am I going to remember the items I need at the store?”

I returned regularly to the doctors, searching for answers. I was tested for: thyroid issues, depression, Chronic Fatigue Syndrome, Lyme’s disease, MS, Rheumatoid Arthritis, narcolepsy, and Fibromyalgia. When the results came back negative, I was quickly dismissed by the doctor, who was sure they knew what was wrong. I repeatedly had tests and blood work done – my insurance hated me, I’m sure.

It got to the point where I couldn’t even talk to my father about my issues anymore as he was getting annoyed. I learned who I could and couldn’t talk to, or so I thought. After a falling out with a family member I found out many of them were talking, calling me a hypochondriac, which hurt immeasurably.

By this time I was on Ambien, Prozac, and medication for fibromyalgia. All of which made me a zombie and pretty much useless. I hurt in my bones constantly. I always felt like I was running a fever. My kidneys hurt. If you think you are depressed before, wait until doctors give up on finding your ghost disease and just start throwing meds down your throat to shut you up.

My issues were causing me, a 30 year old woman, to feel closer to 50. Fed up, I decided to slowly come off all my medications and start juicing instead. I started to eat cleaner and closer to raw than I ever thought I could. I started doing yoga. I was feeling better! The clouds parted, and I was alive again! I even got a job!! After 11 years of being at home raising children, I was finally living “normally”.

That didn’t last long. My issues slowly crept back in. this time I felt I had a spotlight on me. I was working and interacting with people, having to pretend I wasn’t sad, angry, tired. It was taxing. Stress from home and work kicked in, and I took a nose dive quickly.

I was getting emotional at work, panicking on my way home, and obsessing about my looks and if I was worthy of being out in public. I sobbed hysterically on the floor of my bathroom, thinking I would be prettier if I just cut my face up with a knife. I would nod off at my desk from this extreme exhaustion, feeling I was going to cry from the tiredness. I would think about how I could get home to sleep, or I’d just sleep at my desk. I worried about my job. Then, a couple days later, I was fine again.

Back to the doctors, this time because I didn’t want to lose my job. Finally, after more than 20 years, I was told by my male gynecologist that I may have a form of PMDD. He glossed over it quickly as he prescribed birth control and Prozac. I went to a sleep specialist who, after finding all the tests were normal, put me on Modafinil. It’s basically legal speed, and I love the stuff! I would be jobless and falling asleep at the wheel of my car if not for this miracle pill. But I was still informed it was just like PMS, that all women suffer from some form of it. No big deal.

I started doing my own research. This isn’t just PMS. This isn’t just something all women go through, like starting your period or having a zit on prom night! This is getting worse every year for me and I want answers. Through my search, I find an organization called IMAPD, and I find answers to questions I didn’t even think to ask. I find beautiful women speaking out. Most importantly, I find hope. I realize some of these poor women have it so much worse than I do; that if they can do this, I can too.

I’m in no way better, or living my best life, but I’m open and honest now. Call me whatever you want: emotional, dramatic, hypochondriac, insane, and a liar. I honestly do not care. I care about my health and finding the exact concoction of exercise and meds to get through each month.

My daughter is now showing signs of this ungraceful beast, which breaks my heart, but I want to help her find her voice and her concoction to live her best life. Keep pushing, keep living, keep having hope. Who knows what next month will bring for me. All I know after writing this is how badly I need a nap. Wonder if my co-workers would notice me sleeping under my desk?

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