What it’s like to Love Someone with PMDD: Two Sides of the Same Coin.

Trigger warning ⚠️ contains references to suicidal ideation. Severe mental health health and Premenstrual Dysphoric Disorder. 

‘I used to shout at times of frustration, ask him what the fuck he’s playing at, but this new level of suppression required to stop me exploding in front of my kids, often leads to tears instead.’

Me

We’re supposed to be going out. I don’t really feel like it, actually that’s an understatement, I don’t feel at all like it. I’m trying to put on a brave face for them. It’s futile. I’m waiting for him to get our youngest child dressed but it feels slow, as though he’s not doing it fast enough, on purpose, maybe to annoy me. So the tears prick the back of my eyes and before I know it, I’m shaking with sobs. I used to shout at times of frustration, ask him what the fuck he’s playing at, but this new level of suppression required to stop me exploding in front of my kids, often leads to tears instead. Deep down I know this is irrational behaviour. I even say aloud “I’m sorry, I don’t know why I’m like this.” But they’re just words aren’t they? I’m still like it.

It’s not his fault, and it’s certainly not the children’s fault. Some would argue it isn’t even my fault, because Premenstrual Dysphoric Disorder is physiological. It’s not a behavioural choice. I don’t choose to want to run the-fuck-away or open the flood gates to save myself from screaming the house down every-time I feel overwhelmed.

Some would also argue that there lies the choice. But there’s a stigma attached to a woman’s reproductive system that fuels societal norms and tells me I should be able to control this. I wish people didn’t really believe that. Sadly, many do.

I can feel my senses screaming, the hair on my scalp feels sore, the streams of noise I can hear, the kids to-ing and fro-ing around the house, collectively chattering, the sound of toys clattering and zips being pulled on coats, all feels as though it’s taking place inside of my head. The sounds are amplified and terrifying, because it doesn’t feel normal. I wonder if maybe I’ve finally reached a level of mentally ill that is beyond reparation. But even if that was true, what would I do?

I think about suicide and the perfect ideal of disappearing into an anonymous abyss. I think about not blowing up my life on a two week roster. I think about it against my will. I think about not disappointing more of my loved ones. I think about it, but I can’t do anything with the thoughts, because doing so would harm them irreparably too, and then I wouldn’t even be here to say I’m sorry. And I am sorry. I’m so sorry they have to put up with this. With me.

‘I’m frustrated, yes. Who wouldn’t be. I’m frustrated with the situation.’

Him

Of course I’m sick of walking on eggshells. I know she’s going to kick off in a minute and it’ll be my fault. It’s always my fault. The octaves are increasing and I can sense her anguish. I’m frustrated, yes. Who wouldn’t be. I’m frustrated with the situation. It’s definitely gotten worse since the second pregnancy, and the birth of our son. Or maybe I was just more able to tolerate it before we had two kids. Having children makes the situation harder. I’m running around back and forth trying to get the kids ready and make sure she’s ok. I can’t do everything. I know she’s spoiling for a row. I can feel her distress and it’s grating, because it’s really tough not to take it personally. I know she doesn’t mean it. I know she’s hurting. I don’t put up with this shit for the sake of it. I put up with it because I know her, and this isn’t her.

I try to preempt stressful situations and get ahead of them. Sometimes I don’t listen to the nagging, if I’m honest I don’t always listen to how bad she feels. It’s not because I don’t care, I think we all (men) do this to some degree. We’re just trying to keep our head above water too. Trying to fix it. I hate seeing her in pain. I know it’s real, but I don’t know how to help.

‘I know I’m useless. I guess this need to be useless alone makes me feel noble.’

Me

He’s going to leave me soon. I push him away cyclically because I think it’ll be easier, easier for him, not for me. I know I’m useless. I guess this need to be useless alone makes me feel noble. If I am not around to hurt them with my lack of energy, my anger or my tears, surely that’ll make me a better person? I’ll disappear for them.

Who would want to put up with a hormonal, angry, anxious, and constantly unwell, wife? I’m the mother of his kids but I’m not a great one, am I? How could I be when I can barely keep up with our children? I struggle to walk very far, I’m always tired and I dare say, my pelvic floor ain’t what it used to be. I’m overweight because I’m pumped full of hormones, and I crave sugar in the middle of the night. I’m not the woman he fell in love with. I know that much. I was a skinnier, funner, possibly sexier, but still angry, bitch back then.

I often wonder how we’ll survive this. How we keep coming back from it every month.

Him

I love her. We get through it because the good days keep us going. She is a great mum. I know she doesn’t think she is but I’m proud of her, and I trust her parenting implicitly. Our kids are kind because she’s taught them to be. I know she worries about our daughter picking up on things, but the way I see it is different. I see her doing her best. Our kids are lucky they have what they need, and we have fun. Yes it’s hard, but it’s not just hard. It’s amazing too.

Me

I know everyone fucks their kids up a little bit. With the best intentions our actions impact them. I worry. No, worry isn’t a strong enough word. I am petrified that my kids will remember my dysfunction and forget all the times I tried. Equally, I don’t want them to shoulder the burden of believing I fought only for them. I want to find the strength to do it for me, but it’s hard. I’ve been doing it for too long. I don’t sleep. My brain is a cacophony of clashing thoughts. For two weeks out of every four, I hold on white-knuckle, in an attempt to get to the next phase. It feels like a game of Street Fighter except for the fact that completing a level isn’t victorious. The end is never the end. When the mental torture subsides, I am left with acute physical symptoms. Pain that takes weeks to disappear. Debilitating migraine attacks, chronic and all encumbering fatigue. Dense brain fog, mouth ulcers, and chest pain. Even my face hurts. I might do a small task and need to sleep for the rest of the day. It’s a lot of pressure on him. A lot.

‘Sometimes I say the wrong thing, like “it’s in your head” but I don’t mean it’s not real.’

Him

She says I don’t communicate with her but sometimes it’s easier just to push through. Because there is an end. She sees it as forever, but it’s not all the time. I’m not making excuses for her, but I don’t see it as constant. Maybe I have more hope, but it’s life factors that make life hard, not just her illnesses. Life would be easier if we had more childcare, she got more rest, we had more money. Maybe if I could work less, and so on. Even if we had those things and the gift of hindsight, none of them would cure her health, or eliminate all of our problems, because there’s no such thing as no problems. Families aren’t perfect. Our bests’ might sometimes look different but we’re both doing the very best we can. Everybody I know is dealing with something, and I don’t say that to minimise how she feels, I say it because it’s true. I say it to reassure her, that whatever the problems are, nothing is so bad that I’d give up on her. We’re a family. I don’t dwell on things in the same way she does. I know from living with her that being able to not dwell is a luxury. She doesn’t switch off because she can’t. Sometimes I say the wrong thing, like “it’s in your head” but I don’t mean it’s not real. How she feels. I don’t mean I don’t believe it. I know it’s real. I just want her to know that I don’t worry about us in the same way she does, because I know we’ll be okay.

Teal Tuesdays – The Fundraiser You Need to Get Behind this April, and Why.

I’m going to be presumptuous and assume that the majority of you that follow me know, I have PMDD.

Premenstrual Dysphoric Disorder is 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.

If you’re able, please help!

Chronically misunderstood- My personal experience with shame.

Content warning! Severe Mental Health chat.

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.

It’s Scary dealing with a Flare Up when you have Chronic Illness.

Flare up definition: A situation in which something such as violence, pain, or anger suddenly begins or becomes much worse

Medical Dictionary

It’s doesn’t matter how long you’ve been living with your illness, or whether or not you’ve experienced something similar with previous flare-ups – The reality is that when symptoms increase or worsen, it’s scary.

Living with chronic health conditions leave you vulnerable. On the days my pain is so intense that I can’t think about anything else, my mouth is full of ulcers and no matter how much rest I get l, I still can’t physically stay awake, on those days I’m not just scared, I’m terrified.

  • I’m scared for a few reasons one of them being, I wonder if this is it, is this the new level of disabled at which I must live the rest of my life.
  • I wonder if it’s something else. I could bet, almost every chronically ill person alive will tell you, it’s common for us to ignore worrying symptoms such as chest pain or numbness. We don’t bother trying to wrestle with the traffic wardens of the NHS, (GP receptionists – I said what I said) having to beg for appointments. We’re used to being in pain. We soldier on, albeit miserably, but that doesn’t mean we’re not scared. Wondering if this time the chest pain really is a heart attack or the migraine is a stroke. We spend our time debilitated simmering on if maybe our pain is being caused by something even more malign.
  • I’m scared because I know it’ll always be this way. Sure there may be periods when I feel better on a sliding scale, ultimately though, I know this is my life. The cycle of up and down and baseline to unbearable will continue for the rest of it. That’s some scary shit to have to live with.
  • I’m afraid my people will eventually give up on me. My husband, my friends. The cancelling plans and feeling constantly burdensome to those you love, is tragic. The feelings are always there in the back of my mind. I spend hours ruminating on if this time they’ll reach their limit of how much support they can offer me. It’s not easy being a sick person and it’s not easy on my loved ones either. It’s not my fault, but it doesn’t make it any less worrying.
  • I’m scared my medication will stop working. When you are living on pharmaceuticals to try and reclaim some semblance of a quality of life, there’s a constant nagging, and valid fear that they will become ineffective or be taken away. It’s a dependency that I never asked for.
  • I’m afraid people will think I’m faking – I often struggle to articulate how awful I feel when my symptoms are exacerbated, because ‘I’m exhausted’ sounds a lot like I’m tired and ‘my whole body aches’ sounds like maybe I just did a work out or played sports – and because of that I fear the judgement of others. Fatigue isn’t the same as being tired and being in chronic and relentlessly agonising pain isn’t the same as post workout aches, but to be able to articulate the level of shit you’re feeling, really isn’t as easy as some might assume.
  • I’m scared my kids will resent having a poorly mum. I spent five days this week in bed at my mums. I’m thirty-five with two kids and there were five days this week I couldn’t care for them. Not only could I not lift my eighteen month old son, I couldn’t drive my daughter to school or stay awake long enough to read books with her. That scares me. It scares me that they’ll grow up feeling I was absent.

It’s hard. It’s harder when you’re met with judgement, ableism and misrepresentation – eg: Sounds like a horrible virus….. no, this is just my life. Or, you were fine last week…. Yep and things change. What do you think caused it?….. Perhaps something, perhaps nothing. I have a lifelong health condition I get sick often.

I wrote this post to try and articulate my thoughts and fears around the latest of flare ups I’ve experienced. I know better days will come again and those are the ones I live for, but in case you’ve ever wondered if being chronically ill is something you just get used to – it isn’t.

(Not) 2022 In Review

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.

🥳 Happy New Year 🥳

HRT to treat PMDD week 19

Can’t believe it’s been 9 weeks since I last wrote an update on my HRT journey. A journey is exactly one of the words I’d use to describe it. There’s so much in the media at the moment about the use of hormone replacement therapy, and often strong opinions both for and against. I’d say for me, I’m still pretty on the fence.

So what are the three words I’d use to describe this most recent cycle? Improved, unusual, and you guessed it (a) journey.

Improved. Because, for the first time since commencing treatment I felt a really significant improvement in psychiatric PMDD symptoms last month. The level of anxiety was what I consider bearable (no anxiety is nice, but when you’ve felt close to the edge every month for decades, bearable is considered good!)

Unusual. This one is a weird one. I can’t work out why my symptoms were reduced. I’ve been using ovulation strips when I think I’m ovulating to confirm that I’m still cycling, and unfortunately- I am. So it’s not as if there was some kind of ovarian wipe out that can be thanked for the minimal mental turmoil. But we celebrate small wins here. And it’s nice to report feeling less tormented, for once.

The Journey is ongoing. In fact, I’m certain it always will be. Whether that be post op – or continuing with my reproductive system ‘in tact.’ I know this, because trauma and our experiences of it never really leave, so even in the absence of horrific PMDD my mind is still naturally searching for worse case scenarios. It can pluck them so easily from seemingly thin air!

Observations

I feel I need less oestrogen around ovulation and more straight after it. A steady dose of high supplementation is not always the missing jigsaw piece. I am not medical in any way, but I know my body, probably better than I know anything. If I have too much on the lead up to ovulation, I become anxious in follicular. This is less than ideal because this should be my ‘good’ week. So I am going to talk to my gynaecologist about tweaking dose and admission around this time, and see if it results in a positive change.

I’ve started planning my life around PMDD again. I used to do this around my period specifically, but now I focus solely on my moods and when they’re likely to turn. It’s not ideal, but it is necessary to get the best out of my days.

I’m about to ovulate again any day now and my usual body aches, shingles pain and mouth ulcers are creeping back in, as they do every month around this time. So it’ll be after next week that I’ll tell if I had a one off better cycle last month, or if HRT can indeed finally be thanked for the decrease in negative mood fluctuations. It’s a rollercoaster that’s for sure, but anything, any scrap of positivity is better than PMDD itself. So like with most minor improvements in my life, I cling to them with fervour and hope for the best.

Because in the end, despite science and medical intervention, hope is what keeps me going. ❤️

It’s a small world. A short story.

Selin Andrews woke up feeling flat. It wasn’t the first time this week, or even this month she’d felt drained of all her energy. Her mouth felt like sandpaper and her head as though it was filled with cotton wool. As she brushed the length of her long auburn hair in the mirror of her childhood bedroom, she stared at the dark circles that had become a permanent fixture around her hazel eyes, wondering if she could call in sick at work again, preferably without her mum noticing. Unlikely, considering her mum was a lady of leisure these days. Michelle Andrews spent an age dawdling around the house in the mornings, getting ready for lunches at the Ivy or another equally fancy restaurant, with one of her equally fancy friends. It wasn’t that Selin begrudged her mum this social acclaim, Michelle was a lovely mum whom was making the most of every second of her long awaited retirement, and Selin was happy for her, but she was also jealous. It pained her that her own life once so full of vivacity and social engagements, now revolved around whether or not she could summon the energy and the mental courage needed to climb out of bed and inhabit the shower of a morning.

You need to help yourself, Michelle would say, with kindness, though barely managing to disguise her evident frustration. What Michelle didn’t understand, is that Selin was trying to help herself, and she herself was also extremely frustrated. The days she managed to turn up to work despite being wracked with pain was such an achievement, she really felt as though she deserved a medal. Unfortunately nobody was giving out medals for turning up to work. Even when that turning up would cost Selin a whole weekend in bed trying to recoup some of the energy she’d lost doing so. She knew she’d been off sick lots. She knew her colleagues questioned the authenticity of her illness. She knew this, because she too had once been a colleague who rolled her eyes when the serial “sick note” called in yet again. That was until life had struck her with a debilitating illness that nobody could see. Sometimes as she sat here in her childhood bedroom staring at the garish pink wallpaper her mum hadn’t bothered to replace, she wished she’d lost her leg in a car crash. She knew these thoughts were irrational, insane even, but Selin felt with such an injury a modicum of sympathy might have been thrown her way. These days all she got was noncommittal murmurs and the odd poorly concealed eye roll.

Selin grabbed her phone from its charging port on her bedside table. As she tapped it the screen flashed up with a photograph of the family dog. Drew was an eight year old Red Setter that had the greying eyebrows of an old man, he was also her best friend. The knowledge that at twenty-five years of age she had a best friend of the non human variety depressed her greatly. Her phone told her it was six fifty am and that, as expected, she had no new messages. She tapped into Instagram where her life lit up again. People all over the country and some even in other parts of the world, passed by her profile to double tap on a picture or comment on one of the many inspirational quotes she liked to share. She had friends and family following her instalife too, but either rarely bothered to take the half a second it took to double tap her latest upload, and even fewer left comments or slid into her DM’s. But when Selin’s body forbid her from being able to leave the house, it was this virtual world that was helping her stay connected. When her friends had stopped checking in and her world had become small, this online space had opened up to fill a void. It allowed her to connect with people who understood her situation. People whom were going through similar themselves.

It had been four years since Selin had been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome, though the reality was she’d been living with it and many comorbid conditions, for much longer. Her life had once been vibrant and full. Days and nights out with friends scribbled on a calendar which had hung loosely to the kitchen wall in her flat. Her flat. The one she had shared with her ex, James. James had been a good boyfriend for the most part of their relationship, he’d stayed in a lot of nights with her when she wasn’t physically able to drag herself out to socialise. He’d been with her that day in rheumatology when she’d been diagnosed. He’d even seemed positive at first, with a real desire to help her manage this complex condition. Then when she’d been off sick for weeks at a time and he came home to her unable to move from the sofa to their bedroom without his help, he’d started looking at her differently. It had happened gradually, the transition, his blue eyes that had once belied a lust and deep love had started to look at her with pity. Instead of staying in with her on the weekends or planning around her illness, he’d began going out more often with his friends. Coming home later and later, until one night he didn’t come home at all. Selin had been out of her mind. Already prone to anxiety, she’d called all of his friends to find out where he was and when they weren’t forthcoming she’d phoned his family, and the local hospitals.

As she sat now scrolling her newsfeed, double tapping on posts she’d missed from people she followed, she decided that today would be one of those days she fought her body and took it to work. Or at least, she’d give it her best shot. ***

Lacey Rowe had been following Selin’s ChronicallyBored instagram page for some time. She liked seeing the quotes Selin created herself and shared with her audience. Lacey also had fibromyalgia and it had become so bad over the past two years she’d had no choice but to give up her job at a publishing house. Lacey now stayed home day in day out, doing her best to manage her health. She was relentless with routine and tried hard to go to bed at roughly the same time every night, eat consistently healthy foods and had given up her beloved wine in search of cures. A belief that cutting out vices would ease her pain. Lacey no longer worked, but she had responsibilities Selin didn’t have. Lacey had a son. His name was Rafe and he was just about to turn three. Rafe was a well behaved three year old. His cherub face was always smiling and his speech was great for his age, he also never, ever, forgot his manners. In some ways Lacey took all the credit for his upbringing, she knew she’d done a great job and he was teacher’s pet at his preschool too. But she also felt immense guilt. Every time she looked into her son’s chocolate brown eyes and sniffed the sent of his chestnut hair, she felt a stab so acute she wondered if a person could die from such feeling. Lacey’s guilt stemmed from not being able to do all the fun things Rafe’s friends’ parents did. Like host parties in their gardens and offer to help out for stay and play in his preschool class. For starters, living on benefits meant they had very little money left over after necessities were paid for, and secondly, Lacey simply didn’t have the energy or confidence to offer to volunteer her time. She knew the other mums at preschool thought she was odd, possibly even rude. She was neither of those things, but she was unwell. Making small talk was hard for her as brainfog rained over her thoughts and left her forgetting her words. She would constantly stutter and trip over them whenever she attempted conversation with a stranger. That’s why she loved following account’s like Selin’s. They made her feel seen. She knew Selin didn’t have children, but in age there was not much between them and she was pleased to learn they even lived reasonably close to each other. Selin was always tagging Bath as the location in which her photos were taken and Lacey lived about twenty minutes away by train, in a suburb just outside of Bristol.

***

Selin’s workplace was situated in central Bath. What was once a Georgian townhouse was now several small office spaces where she worked selling advertising for a local newspaper. The building itself was ornate, complete with sash windows and a boardroom- which had likely once been the lounge of a wealthy bank manager- overlooked the heritage city. Her office was quiet. The desk she manned was one of four, the others inhabited by Janet, a vibrant lady of indeterminable age, Sasha, also twenty-five and already married to a successful entrepreneur and Juliet, Selin’s very stern, and very straight, boss. Selin’s role was mainly administrative, fairly low grade and uncomplicated work for most people. Though Selin wasn’t most people. The moment she’d entered the building earlier that morning, she’d known it had been a mistake. The air was stuffy and emitting a damp smell which played havoc with her senses. The monitor she was working on too bright and the chair she sat on no longer adjusted to support her back. The pain had accosted her body just ten minutes after the start of her shift. As she forced her eyes to focus she felt her phone vibrate in her pocket. Realising it was now almost lunchtime, she decided to wait until then to read the notification, which she doubted was anything other than one of her many shopping apps alerting her to their latest sale. When she finally did walk out onto the cobbled street and pull her phone from her bag she saw instead that is was a direct message from Lacey. Selin had interacted with Lacey tons of times since the launch of her instagram profile and they’d had such a good rapport she felt as though she really knew her, despite the two of them having never met in person. Lacey’s message was about to change that, it read: Time to stop talking about it and plan in a date to meet up. Rafe is at his dad’s this weekend why don’t you come here and we can drink tea and lounge about on the sofa?

Her anxiety addled brain told Selin no way. She couldn’t possibly travel to Bristol on her own. She would have a panic attack or get stuck trying to get off the train. She’d be in so much pain when she arrived that she’d surely need a lie down immediately, and what fun would she be to Lacey then? Lacey had anticipated this would be her reaction and before Selin had even begun typing a reply her phone chimed with a second message: I know you’ll be tired when you get here so I’ll collect you from the station and drop you back whenever you feel like you’ve had enough. No pressure. X

She needed a friend, more than she had ever needed anything in her life. Somebody to complain about the day with and make inappropriate jokes about life with chronic illness. The kind of jokes that healthy people didn’t understand or find funny. She decided that instant that she would go. She still didn’t know if she’d manage the train though and planned to ask her mum to give her a lift instead. Hurriedly, whilst trying to stuff half a tuna baguette into her mouth at the same time, she sent a message back accepting Lacey’s invitation.

***

When Michelle pulled up outside Lacey’s new build with its overgrown hedge, she noticed the children’s toys stacked neatly to the side of the blue front door. It was weird to her that Selin would have a friend with a child. She was still Michelle’s baby, and her life had been so halted since she became ill that Michelle often wondered if Selin would ever make her a grandmother. Nevertheless she was glad her daughter was making friends, and hoped that the shared experiences would mean Lacey wouldn’t drop her daughter like a hot cake when the going got tough. Because it did, get tough and she’d seen the devastation Selin felt when friendships had inevitably failed. She’d felt the grief of her daughter’s health just as profoundly as Selin herself had. Smiling, she waved her daughter goodbye and drove the thirty minute journey back to Bath with a good feeling deep in her solar plexus.

When Lacey opened the door Selin knew instantly that she’d made the right choice. The petite woman with her dark hair and elfin features drew Selin into a deep hug and told her the kettle was on. Lacey’s house smelt of cinnamon and though a little untidy in places, it wore the coziness of a much older, and well lived in space. Sinking into the soft leather of Lacey’s sofa whilst waiting for the tea to brew the pair struck up a diatribe of conversation that was so easy it felt as though they’d been friends ten years, not ten minutes.

The two women spent the afternoon laughing. They drank copious amounts of tea that had Selin running to Lacey’s downstairs loo every half hour, sitting on the pan with the door ajar so she could continue conversation. They had so much in common it felt bizarre. Lacey opened up about the breakdown of her relationship with Rafe’s father, telling Selin how he’d left her when she was a few months postpartum and suffering severe postnatal depression. Selin told Lacey how James had become more like a carer than a lover. They each took comfort in the other’s life experience and neither felt they were being pitied. In fact their respective health, though relevant to the conversation wasn’t the focal point. They both loved eighties music and neon, fancied the new bloke in Eastenders though neither could remember his name.

When it was time for Selin to leave, Lacey hugged her new friend tightly. A solidarity had formed between the pair and when they agreed to meet again in a fortnight and venture out for lunch, each knew, without discomfort or simmering insecurity, that they’d be there. Being sick had made each woman’s world undoubtedly smaller, but together they were about to take future steps towards growing them. Each were as certain of the friendship’s likelihood for longevity as they were that daffodils would bloom the following spring.

Ask Me About PMDD

Earlier this week I shared the below image to my Instagram stories and gave you the opportunity to ask me any questions you might have about PMDD.

Image used with permission from IAPMD

Having suffered with this illness for more than 20 years I feel I am equipped to answer questions relating to the condition and as a result of my own experience. However, it’s important to note I am not a medical professional and all answers are my own words, with no association to any organisations that are linked in this article. Relevant links are included so that you are able to corroborate mentioned treatment options and use diagnostic tools.

How did you obtain diagnosis?

This question came up several times, with many of you saying you had tried and failed to have PMDD accurately represented when speaking to GP’s and medical staff. In my experience from discussing PMDD within the online community I have come across similar tales and it’s one that follows a similar trajectory to that of my own experience. I first suffered from mental illness at aged 13, suicidal ideation, attempts and thoughts occurred, followed by bouts of extreme rage, panic attacks and enduring anxiety. It wasn’t until some years later I had made the connection between my feelings and my menstrual cycle. I remember seeing a GP aged around 19 when I said I believed I was suffering from a hormonal imbalance. I didn’t know at this stage that PMDD is a reaction to normal hormone fluctuations, an imbalance was my assumed interpretation. She told me all women suffered ‘some PMS symptoms’ and that there was no diagnostic blood tests that would give insight into my mental health and it’s correlation with my cycle. Since then I have seen the GP and several gynaecologists in excess of 100 times for the same problem. When I finally began to be taken seriously around age 23, my GP still referred to my condition as severe PMS. Last year aged 33, I became so unwell during pregnancy and after the birth of my son that I was hospitalised and it was only then, under psychiatric care that a psychiatrist referred to my illness as Premenstrual Dysphoric Disorder. More recently this year when seeking further intervention privately, the Gynaecologist (whom is also head of his department in an NHS hospital) again confirmed a PMDD diagnosis.

Diagnosis is a huge relief, it allows us to stop gaslighting ourselves into believing we are raging hypochondriacs. BUT clinical diagnosis is not necessary for treatment of the condition. Your GP can advise, and treat PMDD symptoms even whilst still referring to it as PMS. If these early treatments such as lifestyle changes, hormonal birth control and SSRI’s work for you, you may never need a formal PMDD diagnosis. That’s not to say you won’t want one for your own clarity. If this is important to you, I suggest keeping on at your GP for specialist referral. If you are struggling to get a diagnosis and believe you have PMDD please head over to IAPMD for help and information on diagnostic criteria and talking to your doctor. They have an array of tools to help you cycle track and a glossary of terms that will help you explain exactly how your condition affects you see: Iapmd toolkit.

You also have fibromyalgia, do symptoms of both conditions overlap?

In short, yes. In detail, a higher percentage of fibromyalgia sufferers are women. A symptom of the condition in women can include painful and heavy periods dysmenorrhea. It’s also known that many persons living with fibromyalgia will suffer mental health problems, so it’s my opinion and personal experience that it’s fair to say symptoms overlap. PMDD can trigger a flare up in fibromyalgia pain, more prominent and prolonged fatigue, as well as sensory overload, brain fog and migraine attacks. The key difference between the two is that PMDD only occurs during the luteal phase of the menstrual cycle, which occurs between ovulation and menstruation. Instead, fibromyalgia symptoms can and do occur at any time during the menstrual cycle. I am often alerted to the arrival of PMDD by waves of crippling anxiety and intrusive thoughts that disappear when my period arrives. However some physical symptoms that might be triggered by PMDD end up lasting long after it’s end and will alert me to a Fibro flare up. Also with my experience of fibromyalgia, pain doesn’t ever disappear entirely. I always have some form of baseline pain. Many people also report joint pain with PMDD along with migraine attacks, these are present premenstrually as a result of PMDD and can occur and worsen at any time with fibromyalgia.

Can PMDD come on at any time in life?

Yes, it absolutely can. Some people find their PMDD starts or worsens with a reproductive event, such as menarche (which is when mine started) after pregnancy/birth or miscarriage (when mine worsened) or with the onset of perimenopause. For some it will seemingly come from nowhere. It is believed that PMDD can also be linked to genetics, childhood trauma and depression.

Is PMDD a disability?

Here in the UK, you are covered under the Equalities Act and therefore thought to have a disability if you have an impairment that is either, physical or mental and the impairment has a substantial, adverse and long term effect on your normal daily activities. Depending on the severity of your symptoms you could be covered under the act with a PMDD diagnosis. When explaining PMDD to my employer I advised how it affects me, for example: I suffer menstrual migraine attacks that leave me bed bound for days, along side extreme fatigue and joint pain. As well as this I also suffering debilitating anxiety, intrusive and suicidal thoughts and panic attacks, which make carrying out daily activities impossible. Cognitive impairment such as brain fog and an exacerbation of any underlying symptoms are also worsened with the onset of PMDD. The fact these symptoms occur every month, and last for 2 weeks makes this a long term condition with substantial impact on my life and ability to function.

Why do doctors prescribe SSRI’s for PMDD if it’s hormonal?

After diet and lifestyle changes SSRI’s are a treatment option to help manage the mood and anxiety symptoms that are present with PMDD. Whilst you may feel you aren’t depressed, some women (myself included) have found benefit in taking SSRI’s, both month round and only or double dosing during the luteal phase of your menstrual cycle.

Are palpitations a symptom of PMDD?

PMDD has many, varying symptoms. They range from severe mood alterations, to debilitating physical symptoms. I personally do experience palpitations during both ovulation and the luteal phase. I’m also extra sensitive to stimulants such as alcohol, sugar and caffeine during this time. All of which make palpitations worse and more noticeable. If palpitations are persistent it’s always best to get them checked out to rule out other possible causes, though I know many people experience them alongside profound anxiety, so if this is one of your PMDD symptoms it could also be exacerbating your palpitations.

Summary

  • PMDD is a chronic and debilitating condition with a range of symptoms that vary in severity.
  • There are a range of treatments used to treat PMDD and their effectiveness is very individual.
  • PMDD can and does exacerbate underlying conditions, this is sometimes referred to as PME (premenstrual exacerbation)
  • PMDD can occur at any time during a person’s menstruating life.

I hope this information is helpful. For more detailed and expert advice head to IAPMD where you’ll find everything you need to learn more about PMDD.

HRT to treat PMDD – Week 5

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.

HRT to treat PMDD – Week 3

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.

Disability Pride

Disability Pride Month can mean various things to each individual in the disabled community.

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.

https://www.inclusiveemployers.co.uk

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.

https://www.gov.uk/definition-of-disability-under-equality-act-2010

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

https://www.scope.org.uk/media/disability-facts-figures/
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.

A novel for the migraineur

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.

Praise for Tia Williams. You have a new fan!

Buy Online at Amazon now

Menstruation and it’s effect on underlying health conditions.

You all, or at least those of you that have been following me for a while, know that I am big into learning about how hormones effect mental health. Living with Premenstrual Dysphoric Disorder my whole menstruating life, and an extreme sensitivity to hormonal fluctuations, I have made it a mission of mine to know exactly where I am in my menstrual cycle at all times in order for me to be able to predict how hormonal changes will impact my mood. In doing so I have become increasingly aware how the rest of my health is also impacted by hormonal fluctuations, and in this blog I’ll talk a bit about my personal experience and provide links to evidence based information supporting my theory, that hormones affect everything! Including, mental and physical health.

In 2016 around ten months after my daughter was born, I was diagnosed with Fibromyalgia. I have lived with chronic pain for as long as I can remember, but after pregnancy this seemed to worsen to such a degree that I was becoming less able to function and struggling to participate in every day activities. I also had a range of other symptoms such as cognitive dysfunction, profound fatigue, and an exacerbation in conditions that were already present such as PMDD and Migraine. The same year I was also diagnosed with shingles.

Since then, with every menstrual cycle I have experienced an exacerbation in all of the above symptoms in the extreme.

Society already knows that menstruation comes with its own set of symptoms, like bloating, menstrual cramps and backache. As well as for some women and in some cases, brain fog, nausea, fainting and migraine. But what about for those of us with underlying health conditions? Are you aware, that like me, your period could be exacerbating symptoms of illnesses already in situ? For example, during the luteal phase of my menstrual cycle I will experience excruciating joint pain, severe, frequent and lengthy migraine attacks, reoccurring shingles site pain, profound fatigue, and cognitive dysfunction that interferes with daily living. Alongside common symptoms of poor immune function, such as mouth ulcers, sore throat, wheeziness and more.

Why does this happen? It’s a good question and reliable studies are difficult to come across. So far I have struggled to find any solid UK based studies, that are available to view online. That’s not to suggest there aren’t any, just that we can’t view them. However, as well as studies showing how menstrual health affects mental health, Ncbi have various studies that show how oestrogen, progesterone and testosterone have been known to affect immune and inflammatory markers. Below is a paragraph was taken from two separate studies on immunity and sex hormones:

Exacerbation of common medical and mental health disorders at specific phases of the menstrual cycle is a prevalent phenomenon. Although the precise cause is unclear, studies implicate complex interactions between the immune and neuroendocrine systems. Females and males differ in the energy consumption and nutritional requirements which are based on the interactions between environmental factors and sex hormones (1). The studies in early 1940s ascertained that females have enhanced capability of producing antibodies (2, 3). This enhanced immune reactivity in females helps mount an effective resistance to infection and therefore females are less susceptible to viral infections, but can develop immune-pathogenic effects and predisposition to autoimmunity due to hyper immune responses.

Separate, but few studies have taken place in the US to determine whether conditions such as fibromyalgia may be related to low oestrogen as it’s a condition that preferentially affects women.

Many women/AFABI with chronic health conditions report increased severity in symptoms around menstruation.

We know that oestrogens affect diseases like cancers and can cause significant disruption to the most bizarre of health issues, including things like dental problems during pregnancy and temporomandibular joint dysfunction. We also know that hormones are a key trigger for many women with migraine. Myself included. I cannot take the combined pill as a treatment for PMDD because of the increased risk of stroke associated with oral oestrogen and migraine with aura. We also know that peri and post menopausal women suffer increased symptoms similar to those mentioned, including joint pain, migraine, frequent viral infections and reoccurring oral health issues, and those associated with syndromes such as fibromyalgia.

Unfortunately at this stage and without hard and steadfast reporting it’s not suggested that HRT is a treatment for any of the aforementioned ailments (besides PMDD.) However, if, like me, you’ve noticed a key link between when your body is experiencing hormonal changes and a decline in your physical well-being, it’s worth tracking your symptoms for at least three months. I use an app called Period Tracker which is available on all app stores and is free to download. It’s easy to use and converts to PDF for easy printing. Tracking your cycle is not only imperative to make connections for symptoms of physical health decline, it’s also as mentioned, a useful tool to predict mood changes, ovulation, and to document any treatments you might try to combat symptoms. The period tracker I’ve mentioned (not aff) also has a prompt for medication which I find really useful particularly during the premenstrual period, when brain fog and memory are affected.

For me and many women like me, it’s not just a period. It’s not just menopause. These hormonal changes are having a profound effect on quality of life and more needs to be done in order to find reliable and safe treatment.

Radical Acceptance – What it is, and what it is not.

I’ve mentioned on my socials recently that I’ve become more accepting of certain aspects of my life. First and foremost I’ve accepted the fact that I am disabled. It’s taken me seven years to fully get on board with the idea that this is something I must accept. In fact, my acceptance came very recently whilst attending a course of Dialectal Behavioural Therapy. One of the sessions was based solely on radical acceptance and what it means.

So, tell us, what is it?

In a nutshell: Radical Acceptance is a skill in Dialectical Behavior Therapy (DBT) that helps people learn how to accept very painful events, challenges, people, or aspects of their life. It’s one of the skills found in the Distress Tolerance module of DBT.

Radical acceptance for me personally has been about the above, accepting my illnesses and the fact they are life limiting, but that there are still moments, days, weeks, that are good. Sometimes even great. Radical acceptance has also played a role in how I relate to my pregnancies, my early motherhood experiences and things in my past that I cannot change. Major regrets and mistakes that I have made that have played an overwhelming role throughout my life.

So are you saying we should accept people who treat us badly, or forgive ourselves or others for things we’ve previously felt were unforgivable?

No. Foremost, radical acceptance doesn’t mean forgiveness. You can regret something you have done, dislike the part of you that did it and still accept that it happened. Similarly with actions of others. For example if you’ve been in an abusive relationship and your partner has hurt you badly, radical acceptance isn’t about forgiving the person who hurt you, or continuing to accept abuse. It is about accepting a situation, to help you gain the most peace and enjoyment from your life. If hatred for that abusive partner is eating you up, or if because of the trauma you suffered, you’re too scared to go out, practising radical acceptance can help you move forward to live a life more inline with your personal values. You do not have to forgive someone’s mistakes, you just have to stop letting them take up space in your head. I know it’s not easy. Another example for me: I have many regrets but one in particular has been eating away at me for over a decade. Everyday I was continuing to punish myself by telling myself I was not a good person. My ruminating became so bad it was affecting my parenting, I was having daily panic attacks and feeling as if my family would be better off without me. When learning about radical acceptance the psychologist advised me that I didn’t need to forgive myself, I could still hate what I’d done and understand that I could not change it. I could accept that it happened and try and build a life for myself, or I could continue to ruin my life by going over and over the same thing. In doing the latter I was hurting my family because they were worried for me, and that only served to make me feel more guilty and unloveable. RA is complex at first, but once you come to learn more about the concept, practice radical acceptance of the little things, like spilling cereal all over a freshly washed floor, the easier it becomes to do it with the big things. Like me with my regrets and my health.

Another one that I’ve been practicing (if you’ve been following my blog for sometime you may have come across me talking about this before) is the acceptance that sometimes people won’t like me and there’s absolutely nothing I can do about it. I don’t like everyone, in fact I’m quite selective in the people I call friends. But when it comes to others not liking me, I have been known to take it really personally. I’m not sure why, maybe it’s an abandonment thing, or a need for external validation. Anyway, the point is radical acceptance has helped me manage the impact of this and get outside of my own head.

If it were that easy we’d all do it

I know. And it isn’t easy. Therapy never is though. I think the first thing to remember with RA is that it’s about not fighting with your reality. Not actively trying to overcome something. Instead allowing the feelings you have about it to be there, but not take over. One of the psychologists on the course I attended, gave a good example of how to practise RA in the everyday. She used the analogy of being late. You know you’re late, you could stress and rush to get to your destination faster but you’re still going to be late. And if you stress and rush you’re likely going to feel worse. So accept that you’re late and are still going to arrive late, but this way, hopefully in a much calmer state.

You may never fully accept trauma you’ve experienced, and that’s ok.

The idea of practising radical acceptance isn’t to negate every bad feeling you’ve ever experienced, but to better manage those feelings when they are taking over your life.

Try it with the small stuff, and if it feels too traumatic to build up to the big stuff on your own, consider a course in dialectal behaviour therapy. My personal experience of DBT is that it’s worth it’s weight in gold when learning to manage painful and intense emotions. Being a big ol’ bag of emotions almost permanently, it’s been a freeing and life changing experience for me.

For more information on DBT click here

Confessions of a chronically ill mum #12

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.

LIVE with Brett from IAPMD
LIVE with Emily and Ally from
The PMDD Collective

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.