This blog is a space for disabled mums to come when they need a reminder they’re not alone, for those with mental health issues to read and know that another person gets it.
I’m going to be presumptuous and assume that the majority of you that follow me know, I have PMDD.
Premenstrual Dysphoric Disorderis a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone. It’s suspected this reaction arises from a cellular disorder in the brain. Symptoms can worsen over time and or around reproductive events such as menarche (the first menstrual cycle), pregnancy, birth, miscarriage, and perimenopause. Three weeks ago I chose to turn off my ovaries. A subcutaneous implant of GNRH Analogue was placed under the skin of my abdomen to shut down ovarian function. This process is called Chemical Menopause or medically induced menopause. It should (if it works) put my body into a reversible menopausal state. If this works well and symptoms subside I’ll hopefully be added to the waiting list to have my ovaries removed. This isn’t a first line treatment, nor is it an easy one to endure but for the sake of my health specifically my mental health I felt I had no choice but to utilise this option.
So why the fundraising and what’s this about Teal Tuesdays?
April is PMD awareness month. A whole month dedicated to raising awareness for those of us living with a premenstrual disorder. And this year IAPMD the charity that facilitate awareness month are making Teal Tuesdays their big fundraiser.
How do I get involved? That’s the easy part. Below is a simple step by step guide to taking part.
Why do you need donations? Donations help IAPMD continue to provide vital spaces and educational resources for patients, healthcare providers, and researchers. A donation of just US $25 can fund a 1:1 peer support session for those in need. Funds raised also help IAPMD to further research Premenstrual Disorders and support their mission to create a world where those with a PMD can not only survive – but thrive!
Can I host an event or do my own sponsored thing? Yes absolutely. IAPMD have curated a list of ideas to make it easy and fun to participate.
Image used with permission
Why Teal? The official ribbon colours for PMDD are teal into black and like many charities have a colour that represents them, IAPMD wanted theirs to be a signature colour for those who fundraise for them. Plus, it’s a great colour and IAPMD can’t wait to see what you do with it!
Can I buy something to wear? Yes! Bristol based designer and fellow PMDD patient, my mate, Amy Steel of One Tuff Muvva has donated some super fun designs that you can purchase on T-shirts and a variety of other items. Find them here.
Note from me: PMDD is a debilitating chronic illness that is widely misrepresented and dismissed. It takes a person on average 12 years to get an accurate diagnosis and many women are misdiagnosed with Bipolar Disorder. This charity has not only helped me understand my condition better with their comprehensive resources, their groups have answered many of my questions. Though international IAPMD have a small team and each one of them work tirelessly to make Premenstrual Disorders visible. Their mission is to create a world where those with a PMD can not only survive; but thrive. If you are someone who was assigned female at birth, a woman, wife, mother, daughter, sister – I urge you consider making IAPMD a cause you get behind. PMDD & PME can and does ruin the lives of those living with it. Without information and awareness sufferers will continue to be misdiagnosed and incorrectly treated. It can occur at any age and worsen over time. IAPMD is the only charity of its kind providing international support to PMD sufferers worldwide.
I wanted to write this post – no scrap that actually, I NEEDED to write it. Not for sympathy. Not for ‘attention’ well for attention to the topic maybe, but for my truth. The need to share my truth of this awful rollercoaster I’m on with my health.
To the outside world my life has never looked less complicated. I’m married to the best man I’ve ever known. I have two beautiful kids. I’m writing and advocating – two of the things that set my soul on fire.
So what have I got to be so hysterical about? This week is the 4th week I’ve not been able to stay up for longer than 3 hours a day. My body is not working as it should. My mum, husband and two of my best friends have all looked after my kids during half term: a week when I should be making memories with them. 3 weeks ago I caught a common cold that left me in bed for 5 days at my mum’s house. Off the back off that came a Fibro flare, my joints seized and neuropathy took over my extremities. This week I had some blood tests which show my inflammatory markers are high again.
The pain I’ve been trying to hide has left me angry and ashamed. I’m angry because I’m tired of having to explain that I’m sick, even though I don’t ‘look’ it. The physical and mental toll of being unwell is too much.
I’m angry at the world for not understanding my needs.
I’m angry that the sound of two people talking at once now cause visceral reactions in me, that make me want to run into oncoming traffic.
I’m angry because I’m ashamed that once a month during PMDD I am hysterical and I’m ashamed that I can’t look after my own children without help.
I’m ashamed at the way I respond to stress and stimuli.
I’m ashamed at myself for not being more grateful on the hard days.
I’m ashamed that I can’t cope with life in an admirable and inspiring way; because society deems that’s the way disabled people should cope.
That I’m not thriving despite anything – I’m surviving at best.
“I’m scared to be around them, in case I fuck them up with my very existence”
Yesterday I walked the dog in the rain and thought about throwing myself in the river. I don’t want to do that, but it’s a thought that niggles for 10-15 days a month, sometimes grows arms & legs & tells me my life, my wonderful life, with my beautiful family isn’t worth sticking around for.
I could and would never intentionally leave my kids, but this knowledge terrifies me too, because sometimes I’m overwhelmed by it. I’m scared to be around them, in case I unintentionally fuck them up with my very existence.
That word again: SHAME in my opinion parents are shamed for their struggles. Especially mothers.
She’s not doing enough her kids are acting out.
She’s doing too much her kids are neglected.
She needs help – those poor kids.
And on it goes, the shame cycle.
For example: usually, after a post like this I get an influx of messages from kind strangers, telling me they’re sending love, and solitary one or two messages from people I know in person. My real life friends. It’s a tough one because whilst we absolutely should not rely on external validation as a coping mechanism, it can still be difficult to tell your brain that. With social media now being our go to resource for almost everything, you think your friends and family have seen it, you think they’re rolling their eyes. And because of those insecurities, it’s hard to dismiss the notion that these feelings, intrusive thoughts and so on, are feelings we indeed should be ashamed of.
I wish she’d keep it to herself because it makes me uncomfortable!
I dunno why she writes all that stuff there’s no need it’s so cringe.
She doesn’t know how lucky she is.
If she were really feeling that bad she wouldn’t be posting about it.
And it got me thinking, is this what we want our children growing up to believe? That when they feel bad about their life they must keep quiet? That if it’s so bad they’re even possibly thinking of ending it, nobody wants to hear about it. They should only tell a doctor or someone close to them because other people, the rest of the world, might feel uncomfortable if the whole truth is shared with them? Should we be teaching our kids that their feelings don’t matter because they’re cringe to read about, silly to other people who might not understand them? Attention seeking.
It’s not about attention, but even if it is – so what? Don’t people who might be feeling suicidal, or so unwell they’re struggling to keep themselves safe, deserve attention?
Aren’t we all – just trying our best to survive, with some of us finding it easier or harder than others at different times. It’s not about comparison, who has it worse, or wanting a pat on the back for speaking out…. It’s about acceptance on a grand scale. It’s about making small changes that will lead to larger societal shifts in how we relate to each other.
For me personally, the problem isn’t with recognising feelings of shame. I’m aware of them I’m aware of behaviours that stem from them. No, for me it’s about self compassion, that’s the one thing I can’t seem to grasp and it’s a major road block in helping me execute strategies to deal with shame and all of its associated emotions.
I made some decisions this week that I hope will help me tackle this moving forward.
In keeping with a recent blog I wrote that had a very clear yet totally metaphoric ‘food’ theme. I wanted to continue the metaphor and write another blog in similar fashion, about my year.
I’ll start by saying, it’d be easy for me to write a tick box of the things I’ve achieved professionally in 2022.
Quit a job where the hours didn’t support the limitations of my disability ☑️
Published my first newspaper article and my first short story ☑️
Got nominated for a Mental Health Blogger award ☑️
Found a job that fuels my passions and hours I can work around my sick days☑️
But this isn’t LinkedIn and whilst these are great achievements, they’re the icing on the cake – not the cake itself. For me, the actual cake is all about the ingredients. The ingredients which I collected, gathered, thoughtfully and responsibly sourced and lovingly cooked up, once I realised what kind of cake my life had been lacking for, well…. ever!
Ok, let’s drop the metaphors for a moment. I think what I’m trying to to say is, for a long, long time, I was basing my value and happiness on the things I could do that weren’t limited by my health, both physical and mental. For example, I can’t run because of limited mobility, but telling people I was walking my way back to health just didn’t feel good enough. Spending a lot of time resting to avoid things that trigger my poor mental (and physical) health, well, it just doesn’t sound very productive. I always feel lacking in some way. I didn’t want to, and couldn’t, drink alcohol for most of 2022 because of medication, but saying I went for a really great breakfast date with my friend just felt lame amidst conversations of wild nights out and instaworthy excursions. I’ve seen friends so scarcely over the past year while watching everybody else, including my own mum, have a social life that would trump that of Kate Moss in her halcyon days.
I didn’t stick to regular baby groups or devote my time to the school’s PTA. I spent half of 2022 unable to even do the school run at all, because I couldn’t lift my son, and definitely not his pushchair out of the car on my own. Not least do both while holding my daughter’s hand. Instead of these things, I spent months trialling hormone replacements and cholesterol lowering medications, to lower my risk of both suicide and heart attack. And when the most exciting thing you did all year was stay overnight in a Mollies Diner with your six year old…. Well, it just doesn’t have the same ring to it as ‘I partied with my girlfriends on a hen do in Ibiza’ or ‘I took the family to Lapland for Christmas’ (Though Lapland is 100% on my bucket list)
That said, the ingredients I ended up finding and mixing for my own special 2022 cake, are worth sharing. They’re worth sharing because they’ve kept me alive, but not only that, they’ve actually made me pretty happy.
So here’s a list of that extra special ‘cake’ recipe I discovered during 2022.
Therapy is something I talk about a lot so won’t dwell on too much here… but it was previously something I had determinedly avoided really seeing through – that is until this year. I’ll say, one last time that I recommend everybody have a course of good quality therapy at least once in their lifetime. It really is life changing.
Liking myself was a close second in non negotiable ingredients for the perfect slice of life cake. Once I’d completed therapy and the shock of reliving past trauma had passed, I got serious about cutting myself some slack. All of the things I mentioned above that had me feeling lacking, were more a result of me just not really being okay with who I was and how my life had turned out. I didn’t do anything special to help like myself better, I just tried (and continue to try) to make sure that everything I do, I do with integrity. I’ve stopped doing things that leave me feeling bitter and agreeing to things I know I don’t really want to do. I could list many changes but the bottom line is self compassion.
Acceptance is the hardest one. It’s an ingredient I thought I would never be able to find and keep. I’ve spent a life time pretending I don’t care about situations I’ve been in, pretending to have accepted something unchangeable, but then remaining tightly wound and seething inside. Learning to really accept things for exactly as they are – is not easy, but once you master it – or in the case of the metaphorical cake – add a dash of it – it tastes great!
Quality time with the people I love. Real, meaningful, wholesome time. Conversations I’ll remember forever because I was present and listening. Being a reciprocating participant instead of being someone who shows up at surface level.
When I look back at this list of ‘ingredients’ I know that by following the ‘cooking guidelines’ consistently, that happiness can be found in a big ol’ slice of this cake.
My world has been spinning out of control again recently. I’ve felt once again overwhelmed and incapable of coping with so much responsibility whilst being so unwell. I’ve not felt like ‘me’ and some days, I’ve not been able to articulate what being ‘me’ feels like. The worst part is -or one of the worst part(s)- as I come out the other side now, is, I know all of these feelings are down to PMDD. Yes I still have overwhelming responsibilities and health issues, with seemingly endless insecurities, in spite of PMDD, but none of them feel as overwhelming when I’m not premenstrual. Such a scary illness… I can’t even… so I won’t…. Instead I’m going to list 5 things that have helped me cope and survive the past week during the latest luteal maelstrom.
I was lucky enough to spend the weekend in Weymouth with my mum and Ciara and truthfully, I had never needed the time away more. The weekend arrived when my panic and anxiety was highest in my cycle. Being around my mum is helpful because she’s very understanding. Though it’s still difficult sometimes to be around people when you’re not at your best. Below are some of the things that helped me through those days and I know they benefitted not only me, but Ciara and mum too.
1. Watching the sunrise.
There’s something so therapeutic about watching the sun rise. There’s a sacredness to being awake before the world officially starts it’s day. Of course there are always a few people milling around, but the first morning light is like a balm for my mind. Even better that this time I got to watch it by the sea. To view the sun’s reflection and listen to the waves lap at the same time is magical. I’ve always felt quite lonely and not very safe at the thought of going outside at the literal crack of dawn, but winter months bring a later sunrise and in the last fortnight I’ve made the effort to get up and out twice to watch it, and can report it was so worth it. There’s a placidity to it that calms my jangling nerves and puts me in a better place to start the day.
2. ‘Fancy’ dress-up
Let’s face it, we’d all like to pretend to be someone else once in a while, right? The sheer effort somedays to put a face of makeup on and make it outside is too much to bear thinking about, but somehow going out of the norm is strangely comforting. I loved being this witchy woman and picking pumpkins with my mini. I wasn’t even bothered at all the weird looks I got -and there were a few- if anything though, I got a confidence boost from them. Sounds weird I know, but with Halloween fast approaching there’s literally no better time to have a bash at being someone else.
3. Creative craft
It’s not ironic that I write my worst days. Ask any creative and they’ll tell you some of their best work was created during times of extreme stress or melancholy. Even without delving into the history of creatives and mental illness, for many of us craft and creativity can be a therapeutic outlet. In fact it’s even seen used in practice such as mindfulness and some forms of CBT. I often try to get creative with the kids when I or they are feeling stressed. It’s a great way to connect without any pressure. It’s something we both, particularly Ciara and I, find really relaxing. This (pictured) creative practise was simply ‘free’ drawing on pumpkins and it was soothing for us both, a great way to wind down from the day’s stressors or after lots of high intensity activity. It’s also a cute Halloween craft and a great idea for rainy days.
4. Creative Writing
As above. The creative process is a calming and therapeutic one. For me, words will always be my go-to outlet. Writing all my thoughts really does help me to process them. This notebook created by my friend and literary idol Emylia Hall, founder of the creative writing course Mothership Writers is full of motherhood writing prompts and gorgeous illustrations. It was the perfect accompaniment to a really rubbish week. I can honestly say I felt better during and after using it. It’s definitely going to be a permanent fixture in my self soothe kit.
5. Nature: Preferably involving wildlife
You don’t have to be an animal lover to appreciate the beauty of wildlife. Some of my favourite de-stress activities include animals in their natural habitat. When I first suffered with lingering PND after Ciara was born back in 2016, a common favourite was feeding the ducks and I’ve resorted back to doing this whenever I feel low. Earning the trust of wildlife requires being present and patient and that’s why it’s such a great grounding activity for when you feel as though you’re losing your mind. This little squirrel pictured, was a little too tame to be honest and made himself comfy on my thigh in wait for Ciara to snap open a monkey nut. It left me with a smile though, and there’s a lot to be said for simple pleasures.
This blog is not intended to substitute medical advice or the advice of a trained professional. If you need to speak to someone about your mental health, please make sure you do so. Be that your therapist, GP or an organisation such as Samaritans. And remember that if you’re concerned about your ability to keep yourself safe please call 999 or go to your nearest A&E.
In the interim though, these few simple, accessible and affordable techniques may help you focus on the present moment. Particularly for those rollercoaster mental health days that are often up and down. To prevent spiralling out of control all together, maybe one or two of these activities can help you process your thoughts a little more clearly. I’m by no means an expert, apart from in the field of my own lived experience, but everyday I am seeking small but manageable ways to be more mindful and regain a modicum of control over the often obsessive thoughts that plague me during both PMDD and times of high stress. We could all do with taking more breaks, and so I hope this blog will be helpful in encouraging you to do just that.
This week if I had to use 3 words to sum up my HRT experience I’d use: BLOODY, ENTHUSIASTIC and BRAVE.
Bloody
I’m still bleeding two weeks after the last time I told you I was bleeding. Which isn’t ideal. It’s not spotting either, it’s a couple of pad changes a day. The main cause for concern here is I can’t really tell what is or was my menstrual period and so I don’t know my cycle as I normally would and therefore struggle to determine how my symptoms relate to which phase. However, for now, I’ll take the blood. I don’t want to put up with it forever, of course that would become troublesome, but so far the blood I’m losing is a minor problem and is being outweighed by positive changes and more calm.
I’m also unsure whether this bleeding is related to the oestrogen gel, or the progesterone in the mirena coil as both report similar effects. It still needs noting though, because it is a troublesome symptom if it continues long term, and I don’t want to have to add an additional progestin treat it.
Enthusiastic
I chose this word because for the most part it’s how I’ve felt in the last two weeks. Potentially this suggests it’s when I’d usually be in the follicular phase, or that HRT is doing the job it was prescribed for. The trouble with me is, I am a pessimist, after decades of cyclical hell I’m almost programmed to think it can’t be working. However if I’m being honest, with both you, and myself, I have felt better, less anxious and more able to cope. It’s summer holidays -I mean if there was ever a time that was going to tip me over the edge this would be it! But I’ve managed to get out with both kids, I’ve caught up with friends (just having the energy and enthusiasm for this, is hugely positive) In the last few days I’ve suffered migraine attacks and felt fatigue and muscle pain (which I think is related more to Fibro than PMDD) and still my mood hasn’t plummeted. Moreover I’ve not been plagued with those awful intrusive thoughts. All of this, for me, is quite something!
Brave
I chose this word because I have done things I’d usually panic doing, like driving places I don’t know, on my own, and trying to get my steps up, increasing my movement. I’ve still had anxiety around doing these things, it doesn’t just disappear, but it’s anxiety in relation to normal life stuff as opposed to being crippling, as is normal during PMDD.
Gynae Appointment
I saw the gynaecologist to discuss my treatment plan and review my use of HRT. He got full marks as soon as I entered, when he thanked me for my email. I was relieved to hear that he had taken the time to read it, it was long! I explained all of my symptoms to him over the past two decades. He asked me how I cope during PMDD and I explained to him that for the most part, I don’t. Some would argue this, but I am forever calling on my mum and husband to come and help with the kids or indeed in a panic that they then have to talk me out of. I told him I’ve been in crisis so many times premenstrually that I almost feel it’s normal. That I swing from feeling like ‘I’m going mad’ to being able to cope. He fully supports a PMDD diagnosis. To be honest just hearing those words as opposed to the ‘severe PMS’ my GP always uses was such a relief that I ended up leaving in tears.
What was even more positive for me was the options he presented me with. Just finally feeling as though I have some was effectual in calming my racing mind! I’ve always known the treatment pathway, I’ve just never been able to get a doctor to consider me for the next stage before now!
We concluded that I will remain on the HRT for another few months unless I do not see any continuity with the improvement, or I experience a relapse. The next phase is chemical menopause which is induced by injection of GNRH analogues. As it’s an open referral to a private hospital, it’s left open so I can call him any time and book the next available appointment for the GNRHA shot. If I go down this route I will leave the mirena in situ and continue to use Oestrogel. I would then trial the medication for 6 months before deciding whether or not to have surgery to remove both of my ovaries and Fallopian tubes (Bilateral Salpingo Oophrectomy)
No major surprises at this appointment I knew what was to come next, I just thought I’d have to fight harder for it. Relieved to say I didn’t. The consultant explained that to obtain the injections for chemical menopause, I would need to have the first one in secondary care (Private treatment centre) and then I could be referred back to primary care to receive the injections on the NHS. This was really reassuring considering my mum paid for my appointment and I have £14 in my current account, so there’s no way I can afford private healthcare in the longterm. That said it was still worth every penny to us as a family, to enable me to have these discussions with a knowledgeable doctor whom is experienced in Premenstrual Disorders. I feel like there’s hope, and options and both of these were in short supply before my appointment.
I plan to write another blog really soon to answer questions relating to PMDD, but please remember IAPMD are the oracle when it comes to premenstrual disorders, so head on over there if you need advice, questions answered, or resources to support you.
If I could sum up the last three weeks in three words they’d be INSOMNIA, ANXIETY, and HOPE.
Insomnia
So let’s start by telling you about the insomnia. I’m not going to sugar coat it, it’s been horrific. It began almost as soon as I started using Oestrogel and unfortunately it remains. If you’re reading this, you’re probably a HRT user yourself, menopausal, someone who thinks they may have PMDD or a PMDD sufferer. Or maybe you’re none of the above and have no previous insight into hormone replacement therapy at all… I know it can be confusing when deciding whether or not to try a new treatment, especially with how the media portray HRT as either a wonder drug (and for many it is) or a carcinogenic. But like with anything we put into our bodies, there are side effects to consider. For me, insomnia has been one of the most problematic. As a mother and someone whom lives with chronic fatigue and on occasion hypersomnia, I have found this particular symptom difficult to navigate. Mainly because, if you’ve ever lived with insomnia you’ll be aware of how it can feed into anxiety. Just how dark the depths of the night can become when sleep is evading you.
Anxiety
Since beginning HRT I’ve had loads more energy – which to some would be deemed a positive side effect. However, for me it’s not been so good, because the energy I seem to now have in surplus, is creating a quagmire of anxiety and ‘nervous tension.’ In short – I can’t relax. I’m feeling often keyed up and on edge.
A few other notable side effects have been:
Hot flashes
Nausea
Breakthrough bleeding – though this could be attributed to the recent mirena coil I now have in situ.
Hope
But I’m still hopeful…. Mainly because what else have we got if there’s no hope? And also because it’s very early days and adding in additional hormones was always likely to cause some symptoms particularly when you’re adding them to treat a hormone sensitivity and not necessarily a depletion as you would in menopause.
I’ve also just finished reading I BLAME THE HORMONES by Caroline Suzi Church and that gave me hope. It’s something I want to review on its own blog post, because the similarities between mine and Caroline’s PMDD trajectory are so similar, it’s more than I can possibly squeeze into a paragraph on this blog, but if you have PMDD you absolutely need to read it! Not only is it scarily accurate, a whole half of it is dedicated to treatment and self help. It really is a wonder of a book with so much insight into reproductive mental illness.
Positive changes
Finally, I need to finish by saying there have been some positive side effects, though fewer, it’s important for me to be transparent. Many people have great results using HRT and as mentioned above I am still really hopeful that I too, will get to experience more of these going forward. One positive change I’ve noticed is a reduction in the severity of my overall joint pain. Which is pretty huge considering I’m in pain almost all of the time. I’m not pain free now by any means, but my joints are beginning to allow more range of movement and I can only attribute this change to coinciding with my use of HRT. Another thing that’s improved is the horrific intrusive thoughts I was having. They are not gone altogether, but when it comes to feeling out of my mind I’ll take every single win (however small) I can get and this is one that suggests HRT could be the right direction for me.
Some people may see the month as a time to celebrate their individual success and accomplishments, whereas others may celebrate the feeling of pride about being disabled.
Have you heard about Disability Pride? Honestly, it wasn’t until a few years into my diagnosis that I first heard of it myself. Though I think that’s because I wasn’t referring to myself as disabled back then, despite spending weeks at a time in bed, wracked with pain and requiring months and months off from work. Unable to function without help, everyday activities became once in a blue moon activities. There have been many times over the last six or so years that I’ve been too unwell to dress myself or shower. Not as a one off, but consistently for long periods of time. At times I’ve been too disabled to work and to walk. My own disability pride has arrived, but only after battling years of internalised ableism.
I was once a person that believed disabilities were -for the majority at least- visible. I believed you had to have a permanent wheelchair or an aid, a prosthetic or an obvious disfigurement to be considered disabled.
I believed if you were depressed you had to look depressed (whatever that looks like) Despite myself suffering from mental ill health since childhood, I still had this idea that mental illness meant being obviously and outwardly ‘crazy.’ (I use this term to poke fun at my own misconceptions and it is not intended to cause offence.)
I’m here today to say, I was wrong. Not only was this way of thinking disrespectful to minority groups including those with disabilities, it was wholly inaccurate, and it was disrespectful to myself. I spent a lifetime playing down my own experiences, symptoms and health issues, because there was no way I was possibly suffering as much as someone else. But there’s an issue with the notion that other people have it worse and therefore we must ‘suck it up’ and the issue is that it’s harmful. It’s harmful because it attempts to invalidate a person’s suffering. Someone will always have it worse, we know this without a doubt, but to apply that to a person’s suffering (including your own) leaves us open to discrimination, feelings of shame and guilty whilst also furthering to escalate mental health issues.
Disability pride means celebrating all disabled persons regardless of the severity of their disability or it’s visibility. Not everyone who becomes disabled will remain so forever, though many people with chronic and ongoing illnesses will be impacted enough by their conditions to be considered disabled.
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
My battle with internalised ableism is an ongoing one. Despite feeling more comfortable, open and able to discuss my health and it’s effects on my life, I still feel some guilt around doing so. I feel as if I am seen to be attention seeking if I tell the truth about how my illnesses affect me. There’s a real crossover between being positive and not focusing on all of the things you can’t do, and downplaying symptoms to appear more positive to the outside world.
In 2020 around 20% of the working population reported disabilities. This number, though higher than previous years, is still disproportionately low, considering more than 1 in 5 of us are affected by disabilities in the UK. It is unfortunately more likely that disabled people don’t feel able or comfortable disclosing their disability to their employers. Disability pride is a great way to celebrate disabled people for whom we are. As well as raise awareness, and shine a spotlight on discriminations such as the disability pay gap and lack of world wide accessibility in the work place.
The purpose of DP is to highlight that a disability can have a significant impact on a person’s life, whatever the cause and regardless of its visibility. It also encourages more people to be proud of their disabilities. Perhaps you’re like me, and find it hard to pride yourself on things that have felt traumatic, debilitating and painful. Or perhaps you are proud of how far you’ve come, in spite of, or alongside your disabilities. Perhaps, you’re just proud you’ve managed to stay alive. And that’s ok too.
Disabled people are almost twice as likely to be unemployed as non-disabled people, and 3 times as likely to be economically inactive
Disability Pride Flag The charcoal background – to represent those in the community who have been subjected to ableist violence, as well as representing protest in the community. The “band/road” shape – represents how disabled people face barriers and have to navigate their life according to them. The different colours in the shape represent the creativity in navigating life, and how the community is breaking free from stigmatisation. The colours – represent the various experiences and needs (mental illness, developmental disability, invisible disabilities, physical disabilities and sensory disabilities) in the disabled community.
There are many ways you can still get involved in disability pride month. Sharing on social media, writing your story, and talking to your employer about supporting disability pride, are all great places to start.
One of the things I get asked occasionally when discussing PMDD and how I manage it, is how I track my menstrual cycle. Now, I know, as a writer, I should probably favour good old fashioned pen and paper, but instead I prefer to use an app. It’s quick and easy, and all the information you need is available at your fingertips. I’ll go into more detail about which app I use and why, shortly, but first a few reasons why you should track your menstrual cycle.
THE WHY IF YOU HAVE A PREMENSTRUAL DISORDER….
There are many reasons why you might wish to start tracking your menstrual cycle, or maybe you haven’t been considering it previously at all. Either way, here’s a few core points as to why you might start. Not all of them are relevant to PMDD, but if you do have PMDD see this as a reminder that in order to gain access to adequate treatment, and or diagnosis, you really needto have tracked your cycle for a minimum of two months (or two previous cycles.)
The reason being, cycles as we know, change, with hormones fluctuating regularly. When living with PMDD specifically I would (personally) recommend cycle tracking to have taken place for a minimum of three to six months. Because, as a consequence of hormone fluctuations, symptoms will too fluctuate and it’s important, for diagnostic purposes, to note the severity in symptoms and whether they occur frequently or ad hoc. It’s also useful for you individually to note how long your PMDD episodes last, their impact on your life, and whether normal every day activities are compromised. PMDD doesn’t only come with psychological symptoms, despite it being a hormone based mood disorder. Many persons with PMDD also experience a range of more prominent physical symptoms than those with PMS. And all of that’s without really delving into the influence they have on our moods and mental health. IAPMD recently published a study showing that an alarming 34% of persons with a menstrual disorder such as PMDD will attempt suicide. If you have been feeling depressed, anxious or dealing with intrusive thoughts, see a health care provider as soon as possible and start cycle tracking. It’s a really useful tool in determining if your symptoms could be related to, or be exacerbated by hormonal changes and your period.
THE WHY IF YOU HAVE A NORMAL CYCLE….
If you’re someone who has never experienced menstrual health issues, you might be wondering why you’d bother to track your menstrual cycle. Surely if your period arrives like clockwork every month with minimal impact on your life, cycle tracking is an unnecessary chore? Well…not necessarily. The purpose of tracking your menstrual cycle is a personal one, but many people still want to get ahead of aunt Flow’s monthly visit, and keeping track is a great way to do it. You may be planning a holiday in advance and having tracked your cycle for the last few months is more likely to give you an accurate prediction of when a future cycle is likely to end and your period start. You may be keen to learn when you’re likely to ovulate. Again, this is more likely to be accurate if you are regularly keeping track of when you bleed. Many people now use cycle tracking as a medicinal birth control alternative, as well as when planning pregnancy. Perhaps your period has always been regular but now isn’t. Could you be pregnant? Is it peri menopause or even menopause itself? You might also be experiencing symptoms that you are completely unaware could be caused or exacerbated by hormonal fluctuations. Did you know common illnesses such as colds and sort throats can also be caused by hormonal changes including being premenstrual? Learn more about ‘period flu’ here. It’s even possible you’ve developed random hives, or your hay-fever is much worse. When you are cycle tracking though, looking back at the calendar you can pinpoint when this is likely to occur in future and potentially prevent the impact. Perhaps your migraine attacks have worsened or increased despite avoiding your usual triggers. Aches and pains have been bothering you, and fatigue is something you’ve been sure is just ‘normal tiredness’ but has become overwhelming recently.
Hormones affect so much of our bodily functioning and have the power to better or worsen how we feel much of the time. Without tracking your cycle it’s simply impossible to know if physical symptoms you could be putting down to everyday problems, are actually linked to hormonal fluctuations, imbalances, sensitivities, and in some cases more serious illnesses such as PMDD, endometriosis or poly-cystic ovarian syndrome and even some cancers.
HOW DO I TRACK MY CYCLE?
There are infinite ways you can cycle track. Of course, as previously mentioned, good old fashioned pen and paper AKA a wall calendar or diary, will suffice. Just be sure to be consistent with diarising your symptoms and how they affect you. Specific menstrual health diaries are available to purchase on Amazon too.
The reasons I personally choose to track using an app are: it’s quicker, you can set reminders to prompt you to log symptoms, and even add medication prompts on some. Ovulation prediction is easier via an app too, it does it for you based on your previous two cycles. The App I use and have always used is simply called Period Tracker and is free via AppStore it has all the above features and also includes a place to diarise what’s going on, or leave yourself notes. Other common favourites seem to be FitBit and using your phone’s built in calendar, adding emojis to describe mood and notes for symptoms. There are so many to choose from though, plenty of options to make finding the one that works best for you easy!Typing in key words such as menstruation or period in your preferred App Store will allow you to see which ones are available on your device. As ever the infinite wealth of resources available via IAPMD is also a fantastic place to start. They have a self screen tool for people who feel their symptoms could be related to PMDD or PME. Diagnostic criteria and advice as well as symptom tracker sheets specifically designed for PMDD. You can access all of their resources via this link
I personally use a cycle tracker to prevent, reflect, prepare and manage my periods and their impact on my life and abilities. It helps me understand why I might be feeling a certain way and is also a useful tool when presenting symptoms to healthcare professionals. Good luck, ‘appy tracking!
Disclaimer: Everything mentioned in this post, including the links and suggestions, are my own personal experiences, opinions and preferences, and are not affiliated in any way with the websites or brands mentioned.
As someone who identifies as disabled, living with several debilitating chronic illnesses, I am forever searching my beloved books for representation of such characters. Until now I’ve been yet to find a protagonist whom is presented as disabled and humble. A character doing things along side of their disability, as opposed to in spite of. So many portrayals of disability can come across as though everyone living with one should be more productive, and offering accurate representation of invisible yet life limiting chronic illness, is paramount for awareness. Fiction writers are getting better at being more inclusive, particularly with mental health in narratives, but many are still falling short on the disability front. It’s a hard balance to strike when wanting to write exciting plot twists, but including a realistic representation of disabled or mentally unwell characters. What tends to happen is, a disabled character may get a side part in an able bodied person’s story. Or a mentally unwell character might end up being the villain in an attempt to emphasise the extremity of an illness, but I’m pleased to say, not in this book.
Seven Days In June by Tia Williams is a tale, written with grit and heart. Honestly, I devoured it, what a marvel! A book that really inspires the likes of me, a chronically sick, wannabe author.
Eva Mercy is a single mother and bestselling erotica writer who is feeling pressed from all sides. Shane Hall is a reclusive, enigmatic, award-winning novelist, who, to everyone's surprise, shows up unexpectedly in New York.
When Shane and Eva meet at a literary event, sparks fly, raising not only their buried traumas, but also the eyebrows of the Black literati. What no one knows is that fifteen years earlier, teenage Eva and Shane spent one crazy, torrid week madly in love. While they may be pretending not to know each other, they can't deny their chemistry - or the fact that they've been secretly writing to each other in their books through the years.
Over the next seven days, amidst a steamy Brooklyn summer, Eva and Shane reconnect - but Eva's wary of the man who broke her heart, and wants him out of the city so her life can return to normal. Before Shane disappears though, she needs a few questions answered . . .
What the blurb doesn’t tell you, is:
Protagonist Eva Mercy lives with the (often invisible) disability, migraine. The pages dedicated to her illness are raw, heart wrenching and honest, despite their fictional nature. Eva is a complex character and Williams is a perfect story teller. Offering up a window into the life of a young disabled mother. Not only is Eva a disabled person but a talented author, mother and sexual human being, too! Real life with migraine is often painkillers and dark rooms and this book captures that, even down to triggering smells and ‘face melting’ pain. It also tells the full story, the story of a woman with complex emotions, sexual desires, ambition and drive, that is often hindered by migraine attacks. As is her ability to parent and participate in loving relationships. It links trauma which is so often the catalyst to a life of chronic pain. But includes subtext, relating to mental health and teenage mistakes, drug abuse and even parental neglect.
A Reese Witherspoon Book Club pick
If I had to rate this book in stars I’d give it a full house simply based on the mention of migraine, and the debilitating nature of their attacks. However, I’m giving it a 4.5, and the reason I hold back the full five, is that the plot itself, whilst raunchy, does teeter over the edge into contemporary romance. If happy endings aren’t your bag, this book may not be for you. What I will say, is the road to happiness is portrayed with honesty, stubbornness and heart. Bonus, it’s a relatively short read that isn’t clunky to digest.
Can you advise how to communicate with my 15 year old daughter after sexual assault as we’re trying everything and failing, suicide attempts, self harm….She’s missing so much school she’s withdrawn but still wants to go out all the time with friends. We’ve got counselling through the police and school. Trying to just be there for her and show love and understanding but it’s affecting the whole family her younger sibling is self harming as she sees her doing it and thinks that’s how you handle things. I should have protected her but I’ve let her down.
Dad – East Anglia Uk
Dear Dad,
First and foremost I’d like to express my sincere apologies for what you and your family are going through right now. I can only imagine how traumatic this must be for each and every one of you. I’m really pleased to read your daughter has been referred for counselling, as someone specialist in this field will be paramount to her healing. With regards to her still wanting to go out with friends, I imagine it might come from a place of craving normality. Her friends will likely be carrying on as normal to some degree, where as you as her parents are understandably concerned and unable to ignore the enormity of what she’s been through. Many victims of sexual assault will feel misplaced shame in relation to the attack, and this can have an impact on familial relationships. I am not a mother of teens but I have been a female teenager who suffered with her mental health, during a time when sexually inappropriate behaviour was common place. My advice is purely based on me empathising with your daughter and not from experience or professionalism. I personally wouldn’t advise forcing her to talk, it may be simply that she isn’t ready yet, or hasn’t fully processed what happened to her. I do recommend that when she is ready, having frank and honest conversations about the assault. Acknowledging that it happened and was extremely traumatic for her, may be an important part of her healing. It sounds as though she is unsurprisingly experiencing extreme emotions around the incident. There is a particular type of therapy I have found really useful for emotional regulation. It’s called Dialectal Behavioural Therapy and is focused on coping with uncomfortable emotions and better managing the effects of them. It really helped me with intrusive thoughts and extreme anxiety and panic attacks. It could be worth asking your GP to refer your daughter or looking to see if there is anywhere that offers sessions in your area. I would also suggest that if you are ever concerned about your daughter taking her own life or attempting to, calling 999 or taking her to A&E. Many GP’s are proving, in my opinion, quite useless recently, so if you’re ever concerned for her mental health and aren’t getting support from them, hospital is the next place to try. I understand that might not be what any of you want, but my experience of being in hospital for my mental health actually turned out to be a really positive one. I believe it saved my life. Your daughter may need trauma counselling alongside DBT so still accept the offers from the police and school. Additionally I want to address what you’ve mentioned about feeling as though you’ve let her down and didn’t protect her. I have heard this being a really common thought process for loved ones of victims, but I need to stress that you are not responsible. You are clearly a loving and concerned father and everything you are feeling right now is valid. But you cannot take the blame for someone else’s actions. You didn’t cause this, you didn’t allow it to happen, and you are not in any way shape or form to blame. I think every parent on the planet wants to protect their children at all times but unfortunately it’s not possible for us to do so. Please if you take nothing else from this response, know this is NOT your fault. I hope that the police are providing you ALL with support, but if not please ask your doctor for help or talk to someone you trust. Lastly in relation to your younger child, I would recommend trying to access counselling for them too and having a chat with their school to see if they can offer some support. I’ve listed below support services that may be able to help you further. You may already be aware of some of them.
Young Victims provide support for both victims and families.
Young Minds could be well placed to support your younger child to process what’s going on in the family.
Give us a shout offer free and completely confidential text support to anyone struggling to cope. This may be useful for yourself and your daughter.
Finally, I’d like to wish you and your family healing and hope. Please know you are not alone, you are not to blame and you are doing everything you possibly can to help your daughter. Being strong for our children isn’t easy and in these circumstances I can’t begin to imagine how difficult it must be for you. I hope that with the right support your daughter and your family will be able to heal.
Take good care of yourself.
Steph x
Send your questions or confessions to divamumsteph@hotmail.com and include ‘Dear Steph’ in the subject line. Can be 100% anonymous if requested. Otherwise first name and region will be shared.
MMHAW runs from 2nd-8th May 2022. It’s purpose is to raise awareness for mental illness and mood and anxiety disorders that occur during the perinatal space. The perinatal space is considered to be from pregnancy right up until your child is a year old, but in my personal experience this fluctuates for everyone. Last year during MMHAW, I was pregnant, and in a very dark place. I opted not to get involved in much awareness raising, though it was a decision that I found difficult, because spreading awareness of topics such as this, is so important to me. However, whilst these weeks/days/months are so important, they don’t come without triggers. So I want to let you know, if you’re in the perinatal space, just out of it, or five years postpartum, if spending too much time online is proving triggering for you right now, please take a break. Not feeling able to spread awareness is ok. Joining in for one day is ok. Wanting to get involved in the whole shebang is ok. Having good intentions and then changing your mind? Also ok.
Maternal mental health/illness is complex and the effects are different for everyone. We’re often warned of postnatal depression but maternal mental health is so much bigger than depression alone and definitely doesn’t just occur postnatally. I’ve had two babies and suffered with my mental health with both, throughout pregnancy and during the perinatal space. But the effects of each illness were very different. For example with my daughter I suffered low mood (depression) as more of a prominent symptom. I would want to be away from her a lot and I struggled with bonding and finding my identity as a mother. With my son, anxiety and intrusive thoughts were the overriding emotional responses to pregnancy and for a long time postpartum. I couldn’t be alone with the children for weeks after his birth, I felt as if something bad was going to happen whilst they were in my care. I had many intrusive thoughts and my main fear was of developing psychosis. Funny really, because the fear of this very nearly tipped me onto the scale of being psychotic.
Have you ever considered the language used in relation to maternal mental illness?
The reason I ask this, is because I have realised as a sufferer and survivor that we are still relatively behind in how we refer to maternal mental illness. Many people still only resonate with the term postnatal depression except we know that postnatal is just one period within the perinatal space. We know that depression is just one of the many perinatal mental illnesses that affect women during this time period.
Other types of maternal mental illness include
Maternal Anxiety
Maternal OCD
Peri and postpartum psychosis
Maternal suicide
Exacerbation of existing mental health conditions such as bipolar disorder and obsessive compulsive disorder
Development of menstrual disorders postnatally
Organisations such as PANDAS often now refer to mental illness that occurs during the perinatal space PMADS which stands for Perinatal Mood and Anxiety Disorders. Others refer to postnatal depression as PND or PPD and some like myself who suffered both depression and anxiety refer to it as PNDA. Perinatal depression and Anxiety. The terminology might not seem overly important, but what is important is the level of understanding and knowledge, that maternal mental illness is not just one symptom, it can often include all of the above at the same time.
I’ve just finished ten months of medical and therapeutic intervention since giving birth to my son in July 2021. I am also medicated for both anxiety and PMDD. Having my children crippled me physically, it shattered my mental health and any equilibrium in my life disappeared. I love my kids, that’s not in question. Though I found growing, birthing, and caring for both of them during the perinatal period, traumatic in the extreme.
What really saddens me when I look back now is that I cried out for help, particularly in my second pregnancy. From just seven weeks pregnant I asked for mental health support. I was told I wasn’t anxious or depressed enough at that time. There was no preventative intervention, nobody to guide me. Particularly as I carried my son during the height of the 2020 pandemic. By the time I was admitted to hospital on the verge of psychosis, the damage had been done. Not only did I need to recover from the trauma of a debilitating pregnancy, I had to do so whilst mentally very unwell and with two children to look after. I still believe that if I had been referred to the perinatal mental health service earlier in my pregnancy my experience would have been very different. You can read more about my experience during my second pregnancy here. Pregnant and chronically ill.
I haven’t shared Kaiser’s birth story, because still to this day, ten months on, after much therapy and support, I find it a harrowing and destabilising time to reflect on. I can talk about it in conversations but I struggle when recalling the details and writing it all down. It causes me pain. And whilst I’ve worked through a whole heap of trauma and accepted my illness, delving into and sharing the true extent of my thoughts is not something I’m completely comfortable with yet.
What I am willing to do is share a quote from the day he was born. A quote that I wrote in the notes on my phone during our first night with Kaiser.
I feel scared of my baby, scared of what the responsibility of being his mum means. I’m missing my other baby, I can’t cope with this one too. Am I a bad mum? I don’t want to be here, in this room with the yellow light and the sound of feet moving and trollies rolling outside of its door. I don’t want to go home either. I just don’t want to be HERE at all.
12.10am 02.07.21
There is a lot of work being done by charitable organisations such as PANDAS as well as The Perinatal Mental Health Partnership to find out what’s causing huge hold ups for people waiting for mental health care during the perinatal period. NHS England are also working on extending the time you can be supported when suffering perinatal mental illness. It’s currently until your child is a year old, however many women find symptoms of mental illness might occur later in the perinatal period and need further or ongoing support.
If you are struggling with your mental health at all please reach out to your GP or one of the organisations listed below. You’re not alone. If you feel like you’re not getting anywhere with your GP ask to see someone else. If you or someone you know is suicidal please visit your nearest A&E department or call your maternity unit immediately. Mental health care is for women during the perinatal period is as essential as physical healthcare.
Three months I’ve been writing these, and they are basically just a way for me to brain dump, to offload and overshare. However, when I look back to number one, I can also see personal growth. Those confessions I wrote in the first few chapters of COACIM were so much bigger than the ones I’m bringing to you now, and that’s because things have changed.
So what’s been happening? A lot actually. But before I get into it, I have to admit that having Shaun off over Easter for a week was undeniably helpful. This week, I am feeling done in. My joints hurt, I have brain fog, migraine symptoms and generally feel under par. It’s only two weeks since I last felt like this which is proper shit as it means this menstrual cycle, PMDD and Fibro symptoms are massively overlapping, and ergo exacerbated. The last week of the Easter hols was just me and the kids, and surviving that after a week away and all of us contracting norovirus, along with my normal and new symptoms, was pretty tough going.
You know what though, I’m proud of me. I’ve been relentless with this PMD Awareness month stuff, now having raised over £500. I’ve had so much support, mostly from strangers online as per, and those IRL proper mates that show up for you whatever shit you’re spouting about on the gram. I also participated in two instagram lives, one with IAPMD and one with The PMDD Collective; you can check them out below.
I’ve finally got childcare sorted for going back to work. Kaiser has had his settling in sessions, he did really well, especially as it’s at two different settings. We’ve been together for such a long while now that I imagined him to be clingier, turns out if you have snacks and give him lots of attention, he’s anyones’
I have a few things going on health wise. Mentally, I’m trying to prepare for being discharged from the perinatal service, and it’ll come as no surprise that one of my confessions is that, I’m terrified. I’m worried of how I will measure up without a team of people supporting me and fighting my corner. Physically I’m still waiting on test results for a second diabetes check, and appointments for my heart issues as well as physio.
I’m due to return to my job in less than a week, so I’ll have to adjust to life back on the 9-5 for those two days. I’ll confess that I’m not looking forward to it. To say that I am would be a lie. In all honesty, it’s nothing to do with work, they’ve been great and supportive. It’s all to do with me! The reality is I don’t know how I’m going to fair as an increasingly disabled person, and mother of two other persons, back in the working world. With our financial situation as it is at the moment though, there is no other viable option and this makes me very stressed indeed. I feel like I am only just coming through my recovery journey of perinatal mental illness and regaining my mobility, whilst still managing an ever increasing list of health problems, and I’d be lying if I said I didn’t think work was going to upset the equilibrium I’ve finally established in my everyday life.
I’ve realised since being involved with IAPMD this month how much I love my advocacy work and I’d really love to be able to keep giving back, writing and making a difference but again, I don’t know how achievable that will be once I’m back doing what I have to, to put food on the table. That said I still really want to expand my blog, upload the fiction I’ve been working on and share that with you all. I also have a new interactive feature coming soon!
Dear Steph is a new agony aunt style feature where I’ll be answering your questions about almost anything! Just for fun. My friend Amy keeps on telling me how wise I am, and during my collaborative work with House21 I was often told I should cameo on their Dear Donna feature! So I thought fuck it, and decided to go for it.
I hope you’ll send in your problems or confessions for me to comment on to divamumsteph@hotmail.com adding Dear Steph in the subject line. It can be 100% anonymous if you so wish. Serious and funny/questions/problems welcome.
There are a few restrictions, mainly because I need to protect myself and make sure I’m offering support to anyone who writes in. (Knowing my luck nobody will -LOL)
Important to note, I’m not a professional so if your topic includes any of the following please seek professional support.
Sexual assault
Illegal activity
Health issues that require a medical opinion or further investigation.
I will happily give my advice, personal opinions and share my experience on mental health and or chronic illness, but if you require specific medical advice please seek support from a qualified practitioner.
I want to hear your most embarrassing moments and comment on them (no judgement here) I want to hear about your relationships, struggles, motherhood woes and workplace dramas. Is your mother in law driving you up the wall? Have you fallen out with your best friend? Maybe your partner is giving you the ick? Or are your kids’ as feral as mine and you need some reassurance that it gets easier? Basically I’m trying to fulfil one of my younger selfs’ dreams of having my own agony aunt column in the back of That’s Life magazine. So do me a solid and send in your woes and faux! Dear Steph will start as soon as your emails come in, and I’ll respond to one a week, once a week, on a Thursday.
Oh Little You. What if you had known that this journey of menstrual hell, poor health, psychological trauma and self sabotage would eventually lead you to finding your best, most compassionate self? If you had known this would you have been kinder to you? I wish that you had, it may have made the road here easier. The paths you walked were often the wrong ones, but it wasn’t entirely your fault. You have an illness, several actually. A brain that absorbs too much and erupts like a volcano every few weeks. I wish you had believed in more holistic methods like therapy and diet much sooner as they may have helped you earlier. I wish you’d given yourself more opportunities and grasped life with less fear. I also wish you’d known that PMDD was lying to you. People didn’t always hate you, some did, and some didn’t know how to handle you, but I wish you hadn’t let PMDD convince you it was always your fault. That you were just some fucked up kid that there was little hope for, because that wasn’t true. I wish you had believed in your creative self sooner and found better ways to self soothe.
Right now in the present day, you are managing a lot, but you have the experience now that Little You didn’t have. The lessons you have learned and the life you have led, have not been easy. Without those lessons and life choices though, you may have never made it to this point. I wish you had known that when you felt as though you were fighting against the wind, that storms come and go. That it never stays dark forever, that believing your life is inherently terrible will only leave you feeling, terrible! PMDD has kept you stuck, on a loop of misery that left you feeling inadequate, wrong, and misunderstood. It didn’t tell you that one day you would be proud of your journey. That when you felt suicidal you didn’t want to die, but instead for the way you felt in those moments to die. For it to stop.
Little You should know, that you’ll also learn a lot from PMDD. You’ll learn that better days come. That somethings are out of your control. That life is a marathon and not a sprint and that deep down you are not some angry, misunderstood teenager. You’re a person that will grow, heal and learn.
This month is premenstrual disorder awareness month and I have teamed up with The International Association Of Premenstrual Disorders as a PMD Awareness Champion. Over the course of the month I’ll be sharing my personal experience of living with PMDD, as well as catching up with other PMDD warriors. This year’s theme is Connect The Dots and I talked to several women I’ve connected with via Instagram to find out how they connected the dots, between their hormones and their mental health.
I asked these brave women three questions which were:
1. When was your ‘light bulb’ moment? 2. How did you connect the dots? 3. Do you feel as though you’ve found a manageable treatment and if so, would you mind sharing what that is?
I’ve included my own answers below too.
Me, Steph:
I can’t tell you exactly when I knew it was PMDD because hormonal changes have affected me my whole life.
If I look back now I can see how the most traumatic experiences in my life were either in relation to my menstrual cycle or my reaction to such experiences was exacerbated by my hormones and their fluctuating.
For me, I was quite aware of the fact that hormones played a big role in my life and on both my physical health and mood, from a young age. In childhood I had a hormone condition called Premature Adrenarche. PA is diagnosed when your adrenal glands over produce sex hormones. Adrenarche can happen in both male and females, but obviously for females and AFAB individuals, puberty means periods. A lot of my dot connecting came down to PMD’s running in my family, thus having knowledge of them from other sufferers. Since menarche my moods have been severe during luteal, so bad that I was diagnosed with clinical depression at 13 years old and prescribed antidepressants. I also attempted suicide. It wasn’t until some almost ten years later, and I got my first iPhone, that I started cycle tracking using an app. Along with my mum’s knowledge of my symptoms and their severity, we pieced it all together and it became apparent that my symptoms were very obviously cyclical.
Over the years I have had many successes followed by, ultimate failures with treatment. Many treatment options have worked for a limited amount of time, until 𝐏𝐌𝐃𝐃 comes back with a vengeance. For example I’ve tried countless antidepressants and birth control and they have all helped for a period, until they don’t anymore. I can also say it’s definitely worsened in severity and duration since having children. Symptoms have also increased, such as allergies. I’m now allergic to the hair dye I’ve been using for a decade and silver. Migraine is relentless and an attack lasts for days. Treatment wise, I have biweekly B12 injections, try to manage my sugar intake, take SSRI’s month round and use progesterone only contraception – The latter has limited success in the treatment of PMDD, but combined with other methods works ok for me at the moment. What I have found really useful is, since the birth of my son 9 months ago, I have been having intense Dialectal Behavioural Therapy. DBT involves learning distress tolerance skills, and how to dial down the intensity of emotions. Skills include using holistic treatments too such as cold therapy. I really feel DBT has been invaluable in treating symptoms of PMDD particularly.
After giving birth I began mapping how I was feeling along side some cbt for PTSD due to a traumatic birth experience and I started to realise every cycle I was physically and emotionally not well
Research, research, research
CBD oils have been amazing, I live with chronic pain which worsens around my cycle and impacts sleep so these help me get into a deeper sleep, SSRI’s all month too. And lastly, the fitbit app tracking my cycle to rationalise why I’m feeling the way I’m feeling (I can pretty much tell exactly when I’m about to ovulate or bleed based on my emotional state)
For me, it was when I stumbled across the PMDD Information page on the Mind website.
After years of various tests and being told by the doctor that I’m ‘fine’ this was huge. I ticked every single box for PMDD symptoms and I just knew that this was what I was going through each month.
I went back to the doctor armed with this new knowledge plus a symptom diary that i’d been keeping for the previous 6 months and they agreed that the diagnosis was PMDD.
Yes. But it’s just sticking to it that’s the problem! My go to treatments are regular B12 injections, keeping on top of my SSRI intake, Ice hats, pain medication, plus loads of water and trying to cut down on sugar and fatty foods (even though this can seem like the most impossible task in the universe, during hell week!)
My lightbulb moment came when the doctors kept telling me I was ‘just’ depressed and giving me SSRI’s and the pill and wouldn’t listen that I only felt this way some of the time rather than fully. Hormonal contraceptives do not agree with me and I knew there was more to it than that but trusted them that they know what they’re doing.
It took a long time but I noticed that I felt immediately relieved and lighter as soon as my period started so good old google came to the rescue and I started reading about PMDD
I felt like for the first time what I had been going through was valid and real when no one seemed to believe me or understand.
I just don’t know how bad each cycle is going to be, however I did find an SSRI useful for a while, they’re not for everyone and I no longer take them. I’ve found that taking things easier/slowing down and planning things for the parts of my cycle where I know I’ll be more positive and less likely to cancel helps because I don’t then feel like I’m letting people down or being unreliable which is a big thing for me – getting outside whenever you can works wonders too even if you don’t feel like it or it’s raining being in nature does more good than people realise
My light bulb moment was when I was with my ex partner and he called me a psychopath. I was so upset and angry that I punched a hole in the wall. I scared myself with how angry I got. I was so angry that he called me that, but it made me think about what I had done to warrant that, and I thought “shit, I’m not a psychopath, but I’m not myself either, somewhere in between maybe”. It was going round and round in my head, and for a few days every month leading up to my period, I was so deeply upset, I didn’t want to be here, and it was like a cycle that I couldn’t get out of. Why am I like this? This isn’t me. But in the moment, I couldn’t see it.
It wasn’t until I was out the other side of those few days that I could reflect on my behaviour and feelings and realise properly that it ISNT me! I spoke to my GP, who put it down to “bad periods”.
I told them this wasn’t just bad periods, bad periods don’t make you suicidal, aggressive, or run away. Bad periods are tummy cramps and a heavy flow.
I pushed for more help, tests, anything. I was advised to have therapy for my dark thoughts, and they prescribed me SSRI’s. After I gave birth, they changed me to ca different SRRI. But the main help for me is telling my close people “it’s coming” or “it’s happening”. I find myself apologising in advance. “I’m not going to be myself for the next few days and I’m sorry”. Which makes me even more frustrated. No one that I have met so far, has ever heard of PMDD. Except a few queens on Insta! I try to explain it to people by saying “it’s like the volume is turned up full blast on everything. My emotions, the hurt, the anger.” You could say something to me on a normal day and I’d brush it off. But say the same thing to me on those few days and my world comes crashing down. The best treatment I’ve found more than telling people, or medication, or therapy, is reminding myself that it’s all in my head. Sometimes that can be hard, and it doesn’t take the thoughts or sadness or anger away, but it makes them more bearable, knowing that I am ill, not crazy. My ex partner didn’t help, but now he’s gone it’s so much clearer to see. I’m poorly. I have been diagnosed with PMDD, it’s not just in my head but at the same time that’s all it is. Finding others who are going through the same thing and trying to raise awareness for PMDD to others as well as medical professionals helps too. I felt like I was going mad, because I was told I was, and felt like I was. But it was all in my head and that’s where it stays. Like you say (sic) Cunty Carol just comes to visit a few days a week, and where I used to be terrified of her unpredictability, now I can at least say “fuck off Carol, I know why you’re here and I’m okay with it, close the door on your way out”
Diva Mum 