A year ago, my body drastically shifted in how it responded to my menstruation cycle. I didn’t know it then, but I had developed PMDD (Premenstrual Dysphoric Disorder).
This is a story about chronic fatigue, PMDD and suicidal ideation. I’m sharing it because it was so difficult for me to find anything personal about PMDD on the internet (aside from on Reddit – don’t do it!) and I hope to help fill that deficit. While this is a professional website, professionals are people; I’d like to bring more of real life into work life.
Shifting cycles
Since my early 20’s I had been familiar with my menstruation cycle causing ebbs and flows in my mental health, and learned coping strategies to help handle them. The same couldn’t be said for my ADHD cycles of burnout, but I was starting to understand those, too.
I knew when I wouldn’t want to eat; when I’d be overly-motivated in my creative work, or want to casually climb a mountain; when I’d avoid friends and become a fallow field. I was getting better at planning around these times.
But last summer in our sunny kitchen, while I was getting the milk for breakfast, something in my chest cracked. Thick, jagged shards – I couldn’t breathe. Without knowing it, I clunked to my knees and curled up on the hard kitchen floor like a child, jerking with unstoppable sobs. For the first time since a major depressive episode in my early 20’s, I was afraid of myself.
I couldn’t answer for the sudden emotional agony in my chest. I called in sick. Days went by, and it didn’t get better. I called in sick some more. Lying in my dirty pyjamas and sweat-soaked bed sheets I stared up at the ceiling for hours, just because it was there.
“No, Sam!”
Do you remember that scene near the end of the last Lord of the Rings film, when Sam holds Frodo on Mount Doom’s gaseous basalt-scree? As rocks fly all around them in the unbearable heat, he asks Mr Frodo if he remembers the Shire. Frodo says no: he can’t recall the taste of food or the sound of water, nor the touch of grass.
Not to be dramatic about this, but I was that empty Frodo, people. I had forgotten what it was to want. Distantly, I knew that I needed to eat food to live – but it felt like that was nothing to do with me.
Seconds were towering – existing was like being stuck in the dreadful pause before a GP tells you the bad news. And yet, I had no thoughts. Images and ideas travelled through my mind, but I hadn’t conjured them – they just occurred and I didn’t care. Nothing to do with me.
It was a forced stillness I hadn’t experienced for more than 15 years. Only, this time, nothing traumatic had happened to trigger it. I wasn’t dealing with PTSD now, or going through any big life shifts. Eventually, a week of intense burnout, depression and fatigue passed as suddenly as it had come. I was able to shakily stand, to go back to work. But every month it would return, and each time for longer – each time worse.
Finding a diagnosis
I found my own diagnosis through a deep dive on the internet. Premenstrual Dysphoric Disorder. Being trans* I knew what it was to sometimes feel separate from my body. But this dysphoria was another level. The internet told me to track my symptoms for at least two menstrual cycles before approaching a GP, so I did, and the GP – a middle aged man – agreed with the diagnosis, recommending I start anti-depressants.
Couldn’t I just get a hysterectomy, I asked? No, I was told. Too expensive. Could I get HRT? No, they said. I’m too young.
I’d spent my adult life of dynamic mental health not entertaining chemical help. I’d wanted to know myself, and to help myself heal with therapy, boundary building, facing my aversion to conflict, building self love, getting better sleep, eating better food, etc. etc. – all the stuff that had worked before. But this time, those things weren’t working. I agreed to the medication. It would take three months to ‘acclimatise’ to SSRIs. Until then, we wouldn’t know if they were helping or not.
Worsening symptoms
They didn’t help.
The next month, I was due to head to Australia with my sister and 6-month-old niece for a holiday that had been booked a year in advance, for our cousin’s wedding. I looked at my cycle tracking app with dread. I was going to have a PMDD resurgence during the flight out.
I warned my family in the group text chat, sharing a link to PMDD and ensuring them that the suicide rates linked to the condition were nothing to worry about; I’d just likely need their patience and support over the fortnight we were spending together.
Sitting in plastic chairs at a gate in Singapore airport, waiting for our connecting flight, my sister’s face changed as she observed me. The sudden despair swamping my chest must have been visible on my face. I handed her back her daughter. My spine curled in of itself like someone was pressing me down. I laid my jacket over my lap and stifled my sobs with it. I felt weak and sick. There were still 14 hours left of our journey.
Suicidal Ideation
Over the three months of trialling the antidepressants, my PMDD got worse. I was starting to entertain death. How could I live through this, three weeks out of every four? It would stop with the menopause, but that was more than a decade away.
During the days-long peak of each episode, my skull felt too small to contain the surging, incessant emotional pain, anxiety and mania. My brain felt too big, too tight – like it had to get out of there. It would be so unbearable that I’d scratch violently at my scalp, shaking my head, and growl-roar in frustration. Up until that point, my housemate had hidden her worry well. Seeing her expression, I realised it was getting bad.
Learning to ask for help
But like empty Frodo, I thankfully had my Sams. When I wanted to die, I called my best friends. I didn’t know what to do and neither did they, but they answered my calls anyway. They listened to what must’ve been hard to hear and witnessed my pain.
They cooked and delivered food for me when I couldn’t get out of bed; they changed their plans to meet at my house when I was too weak to get dressed; they hugged me through the crying fits while others sent cards, full of things to make me laugh once the crying stopped. Most of all, they showed me patience and gave me grace.
They were incredible. I have never been so thankful for the love in my life. Because of them, I learned to forgive myself for cancelling plans last minute, or being ‘dull’ by resting. I started to abandon my typical avoidant coping strategies, and allowed myself to be seen when I wasn’t ‘at my best’.
When my mind was at its worst, it didn’t matter what I did, where I was or who was around me. Nothing could make it better, I just had to get through it – but knowing that people who I greatly valued and admired loved me made that possible.
More new medication
After a lot of research online, I found a private PMDD specialist clinic and was lucky to afford an hour-long appointment. She showed me graphs of the hormonal shifts and mental responses that looked most like mine: mania during ovulation; a steep decline in mental health, appetite and energy as I entered the luteal phase, along with increased muscle pain, insomnia, nightmares, heart palpitations, nausea, anxiety, paranoia, fatigue, uncontrollable bodily jerking and a deep, suffocating feeling of despair, before I’d win back my one week of normalcy.
Those ‘normal’ weeks were the golden hours before sunset. I remembered what it was like to want to speak to loved ones, to feel hungry, to be interested in things. But all the time I’d know what was approaching; too soon, the sun would go down, and for another three weeks I’d be back in the lightless pit. It would be worse than last time, because it always was.
The specialist doctor prescribed me a combined contraceptive pill that had the hormonal balance customised to my particular type of PMDD. It would take another three months to acclimatise to, she warned. I arranged sick leave for those months and gave myself a break. Just three more months, I’d tell myself. Just stay alive for three more months.
I’d gotten through hard things before, I reminded myself. I could get through this, too.
Chronic fatigue
The pill worked for more than half my symptoms. The extreme mental ups and downs that had come with every hormonal shift were almost gone, and the previous, calmer PMS symptoms replaced them. This was the biggest blessing; a win big enough to feel gratitude for for the rest of my life. But week on week, my ability to get out of bed was worsening.
Spending a couple of hours socially after work would make me bedridden the next day. Walking to the shops only five minutes down the road required gearing up for. Whole weeks were still spent in bed; I’d have to hold my bladder, long into the afternoon, while I didn’t have the energy to reach the bathroom. I played so much Stardew Valley (hard recommend for people stuck in bed!) and listened to hundreds of hours of history podcasts, finding comforting entertainment in stories I already knew.
When a walk with friends over the weekend was elongated due to a lack of buses, it took me two days in bed to recover. When our cousins, their children, my aunts and uncles stayed over for Christmas, I had to sneak off for four naps during the day and went to bed before 6pm, only to wake up feeling just as tired.
I realised that this wasn’t going away. Having previously found solace and comfort in the outdoors; being a long-distance hiker and weight trainer; I was going to have to give up so much. My life was going to be irretrievably different, and I was going to have to accept it.
Grief and hope
To accept something, people say you have to grieve it. You can only grieve something once you’ve looked it dead in the eye. For days, I held my child self that was so afraid; tried to remind myself that my identity did not revolve around my hobbies, and that there was so much richness in the things I could do at home. I was devastated.
Crying to a friend who I had always hiked with, she reminded me that an old friend from college had cured himself of Long Covid.
Hope.
I got in touch.
Mind training and meditation
He was such a kind and beautiful human being, in how he responded to my request for help. He empathised like no-one else could, sending me website links to stories of people who had gotten out of the fatigue pit, and the details of his own recovery journey, recommending meditation chants and visualisations.
I was told to avoid the news for two weeks; surround myself with people who were willing to agree that I could heal myself; meditate on hope every morning and every evening; scan my body for every symptom of fatigue, as it tried harder and harder to protect me. Again and again, I spoke lovingly to these symptoms, telling them they could stand down. That I was safe.
Because I was safe – after all, there was nothing physically wrong with me. After all the persistent stress, a nervous system in overdrive, and the introduction of antidepressants (which can apparently trigger chronic fatigue – spoiler alert), my mind had learned that my day-to-day life was dangerous. It tried to stop me from doing anything that would put me under that kind of strain, which it thought was everything.
But with my friend’s help, and the two weeks of constant self calming, encouragement, and determinedly optimistic thinking, this started to change. I was rewiring my brain, apparently. The mind-body connection, eh? And in a surprisingly quick and relatively painless time, I was feeling better. While I still have days of fatigue and rest more than I used to, it’s nothing like it was. And I can recognise the difference between chronic fatigue symptoms and the genuine need to rest.
Cowabunga
I am proud of what I’ve overcome. That even at the bottom of that pit, I managed to keep trying. More so, I can acknowledge all the achievements I forced on myself in a (rather unhealthy) attempt to feel in control over my withering health. Among other things, I’m proud of creating, co-producing and performing a live drag and music fundraising event for Palestine; we sold out the venue and raised £1,000. My dear friends in Sheffield, you know who you are: thank you so much for joining me in that venture.
Chronic illness puts things into perspective; I got braver with sharing my written work, had poems published in four anthologies and performed them at open mic nights and protests. I created ways in which I could socialise without worsening my fatigue, such as hosting queer film nights with homemade desserts. And I managed to do well in university essays for a subject I’d never taken before.
But I’m also proud about the days I managed to shower when it was the last thing my body wanted to do; to reach out when I needed help; to leave the house. These are no small feats when you’re chronically ill. I’m grateful for the new skills, appreciation and perspectives PMDD and chronic fatigue has given me. So here’s to being healthier, and the ability to rest.
Links to PMDD support
If you have PMDD, these websites and resources really helped me. Hopefully they can for you, too:
- Mind: What PMDD is
- Rethinking Mental Illness: PMDD
- The PMDD Project, a UK-based charity raising awareness and offering support about the condition
- IAPMD: Types of medical and healthcare support
- Other people’s stories about living with PMDD
- Advice you can share on how to support you
- A research report on managing PMDD, for those of you who like science.
For chronic fatigue support
There is still so much we don’t know about ME and other chronic fatigue conditions; causes – and therefore treatments – may be different for different people.
However, if you’re interested in some people’s stories about their recovery, you can read them here.