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 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.

Confessions of a chronically ill mum #17

It feels as though the last week has been littered with extremes. I have felt full all the emotions. Health has been quite poor, a migraine attack the weekend saw me in bed for three days. The longest I have been out of action for a while. To make matters worse I was due to be out with mum and friends yesterday and had to cancel. I’ll never get over the sinking feeling of firstly, having to let people down, and secondly, serious fomo at having your life made smaller because of illness.

I’m waiting for a call from the doctor regarding my referral for a more detailed treatment plan for PMDD. At the moment despite taking medication and birth control I seem to have fallen back into a fortnightly switch. Meaning, I get two goodish weeks, and two that set me on fire with the flames of hell. (Not an exaggeration) My anxiety has been so palpable the last two weeks, coming at me in waves, and I’ll confess, there’s been a few incidences where I’ve felt really terrified, again. Terrified that all it’s going to take is that one hormonal cycle that tips me over the edge and into madness. For those of you that think I’m already over that edge… Hun, you have no idea!

A few things have been niggling at me for a while – like Kaiser’s birthday and feeling some panic around what I remember from hospital and his birth. Those feelings of insanity and desperation- and PMDD seems to bring those niggles into the spotlight. I’ve tried again to write Kaiser’s birth story but it just too painful and triggering for me to go back there, it’s also too long! So much happened in those ten days I was in hospital, every-time I think I’ve told the story, I remember more, and it’s mostly hell.

Another thing PMDD does, is make my physical health so much harder to manage. This week I’ve had hives, migraine attacks, nausea, all over body pain in the extreme, and profound fatigue like someone has pulled the plug on my body and it cannot function until it’s recharged, which isn’t as easy as just getting some rest, when you’re a mum!

I think I mentioned quite recently that I’ve been working really hard on trying to be more consistent with my blog. I’ve also had a couple of other writing projects in the pipeline. I’ve had a few rejections too, which have been quite hard for me to move past. Not because I think I’m better than I am, but because it takes so much energy to be creative that when it doesn’t pay off as you hoped it would, it can be disappointing in a much more personal way. As I said, hormones don’t help my mood and undeniably influence how I perceive rejection whilst in luteal. It’s funny though, I’m writing this today after a hellish migraine, and there’s some pattern to me feeling a need to write after an attack. I have no idea if there’s any scientific evidence to suggest the brain becomes more focused after migraine, but for me, it seems fitting.

It’s been mentioned to me that I seem fixated with my hormones lately. And looking back at my last few COACIM it would appear to be true, I am fixated. However, I don’t think it’s just lately. I’ve always been obsessed with them, because of their insurmountable affect on my life. But I will confess again, that since having Kaiser they have felt magnified and I am both distraught and fascinated at how the fluctuations of hormones affect me (and one in twenty other women, too.) It’s hugely important for me to raise awareness of hormones and their effects on health, mental health in particular. So this is one fixation that’s here to stay. So much so, my next blog post is going to be about why you should track your menstrual cycle.

Also this week, I spoke to Enable magazine about living with Fibromyalgia and the impact of the condition. The lack of support during covid, for people in chronic pain, along with the changes to NICE guidelines and the prescribing of pain relief. The publication hasn’t gone live yet, so I don’t know how accurately I’ve been quoted, but when it does I’ll definitely share.

Finally, the kids…. Kaiser has been having tummy troubles since transitioning to cows milk and this has further affected his already crap sleep. And Ciara, well, she’s been her own kind of emotional. She is such a good kid, but communicating with her can be difficult at times. I notice she isn’t like me in my directness, she can hold back and that can make me panic, thinking there could be something going on she isn’t telling me about. However I also know, I need to learn not to push her too hard, together we are navigating this new stage and trying to respect each other’s feelings. It’s a whole new world, and finally I’m about to say something I never normally do…. She’s growing up too fast!

All in all, I’d say this has been a below par seven days. Life has felt harder, but in keeping with trying to retain some positivity, I am confident it will improve again soon. For now though I’ll leave you with some pics of the kids, because they may be enough to cheer someone who may have also had a shit week, up!

Almost one, not a fan of the sun 🌞
We chose to visit a man made beach on the coldest day of the week

Confessions of a chronically ill mum #16

So much can change in a week. Such as estrogen dissolving as fast as an effervescent pill. Or progesterone over egging the pudding and ballsing up those chemical reactions, more catastrophically than Walter White on his first cook. I’m speaking in metaphors because I’m bored of saying the same thing about how I feel being attributed to hormones. My boredom doesn’t make it any less true though.

This week I’ve felt my patience being stretched and my rage reaction time quickening. My body has shown signs of a flare up in similarly dramatic fashion.

Aside from that though, there have been good things happening too, and as is the new and improved version of myself; I want to concentrate on those. Not because I’m feeling overly positive, but because I am trying to extract the positive from days when there feels like there hasn’t been any.

On Saturday I wrote a caption on Instagram that saw me confessing to finding parenting both of my children, whilst alone and with physical limitations, really fucking hard.

The reason for the post wasn’t even so much about the kids, but more in relation to how I feel about myself and my disabilities. I know they are there, I know how much they impact me, and you all know, because I write about it. However, in my everyday life I find myself playing down how bad things get sometimes, because I’m worried about what other people might think. Or even sometimes because I do go as far as gaslighting myself and telling myself that I’m the problem, rather than the fact that my being unwell, is the problem. I compare myself to other mothers, as many of us do, but I compare myself to healthier more able mothers, and that is not a fair comparison. Being kinder to myself and remembering that I have limitations is an important part of healing. Even if that healing must occur every luteal phase, every flare up in chronic pain, with every migraine attack, I must remember it’s not my fault.

After I posted the above to Insta I packed up a picnic for Ciara and I, leaving the boys at home and we went out to meet up with our friends. A girly afternoon in the woods was exactly what was needed to distract myself from overthinking, to calm down and get some reprieve from the noise and the chaos of being home alone with both children earlier that morning. It did wonders for my mood in lots of ways and was great bonding time for Ciara & I. We made a den in the woods and ate chocolate cakes and cold pizza slices from tinfoil. Ciara climbed trees and used her imagination whilst I got to sit and have a moan to a friend. It was therapy, and simultaneously a reminder that these are things I need when I’m not feeling great. When I’m overwhelmed and unable to fight through the mental and emotional fog of everyday life. I need to take a break, get outside, force myself out the door and just enjoy being away from my phone pinging a comparison inducing notification every 75 seconds.

That little outing also reminded me, it’s ok to not love every second of motherhood. Reiterating to me that my not loving every second of motherhood, has no bearing on my love of being a mother. Which is an insurmountable amount of love. I just needed the quiet time to be able to reflect on that.

Outdoorsy but make it chill
Unless you’re six, then make it fun.

This coming week I have a lot going on in general ‘life stuff’ terms, and I need to remind myself of the things that soothe me when my mental health, hormones, or physical ailments are drip feeding their steady dose of hell into my body.

Do you have a go to self soothe aid? During therapy last year, one of the first things the psychologist advised me to do was to create a self soothe kit. I plan to write about this in more detail in a new blog, but until then, do share your personal self soothe favourites – but keep it clean! 😜

Confessions of a chronically ill mum #15

Hey! If you’re reading this, thank you. I’ve been really trying to up my blogging game of late, and it’s hard to keep up the momentum to post regularly sometimes, so I appreciate and value your time as readers, immensely.

I posted to Instagram yesterday confessing that I’m feeling really quite triggered by my son Kaiser’s fast approaching first birthday. I don’t remember feeling like this on Ciara’s first birthday, despite the memories of her in NICU I just felt proud and glad to have made it twelve whole months, and whilst I still feel proud and glad to have made it twelve whole months with Kaiser, the memories are stirring up emotion, too!

In other news, I’ve had my first physio appointment 18 months after the onset of pelvic dysfunction. It’s a long road to regaining strength, but I know I need to focus and do the exercises provided to get the best results.

Another confession from me this week, I’ve been eating really badly. I have zero motivation, hormones are wreaking their usual havoc and I can’t focus on eating well. I’m craving all the wrong foods and it’s doing me absolutely no good whatsoever. I need to do better. I know that diet affects how I feel and even though I know this I still find it so bloody hard to get it right. Our Gousto box usually turns up on a Monday and at least takes one problem (deciding on what to eat) out of the equation. Except, this Monday it didn’t turn up and that means I have to go shopping with no idea what to buy and even less idea of what to cook. If you’re a food blog, help a girl out, give me your best ideas.

Platty Joobs Stuff

I had a bloody lush little rendezvous with friends over ‘Platty Joobs’ last week, it was proper soul food. If you’re wondering if I’ve suffered because of it, then the answer is not as much as I thought I would. I really did enjoy myself despite not really drinking much alcohol. I laughed a lot and just felt really safe and able to be myself, which is something I value in my adult friendships. Following the rendezvous, Shaun and I spent all day Friday in bed, eating, chilling, binging Power Force and just being our pre kid selves, which was a delight. On Saturday I was starting to feel hormonal and my mood plummeted a bit, I’ve been feeling Fibro flarey for weeks and this was more prominent on Saturday too, but we got outside with the kids and it perked us all up for a few hours. Following that, Kaiser was sick everywhere and has slept like shit since. Oh and Ciara has another cough. The joys, eh! You know what though? We’re ok. We’re not great, we still struggle, the battle is ongoing, but in between, during mundane moments and fresh air, and sofa snuggles, we’re ok.

PLATTY JOOBS
WOODLAND WARRIORS

Final note, please remember I’m still looking for content for Dear Steph you can email in your dilemmas to divamumsteph@hotmail.com

PMDD Awareness Challenge: Day 24. Dear Younger Self

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.

I wish you knew how much you’d live to overcome.

Confessions of a chronically ill mum #11

I started out really unhappy writing this one. I’ll forewarn now that it includes some glumness! (Maybe a lot) As ever though, I keep it honest.

The beginning off the week was tough going because I was exhausted from Ciara’s party and already feeling a little run down. Then Wednesday night about midnight I started, (pretty much out of nowhere) vomiting. It was awful, and it went on for 3 days. When the vomiting finally subsided it started coming out of the other end. Vile. And I cried, a lot. It was my birthday Saturday and I spent it in bed, crying. Monday we were due to go on holiday with the kids to Dorset and Shaun began vomiting for over 24 hours, so we weren’t able to make the trip as planned.

Life: It’s just life. And it is! It’s one of those things that can’t be helped or avoided or unpacked, because it just happens, people get sick. But when you get sick on top of your everyday sick, I’m not gonna lie it kicks you a little harder in the kidneys. Vomiting always makes me feel quite heightened anxiety because it’s a involuntary action. I have no control over it, and no power to stop it. I’ll be honest it’s taken a lot from me this week. I’ve felt pissed off at a ruined birthday and genuine frustration at how long my body takes to recover from ‘everyday illness’ whilst managing its’ several chronic illnesses. Taking a bath at my mum’s yesterday to avoid sharing the only bathroom we have at home with Shaun, I felt sick and faint.

Kaiser gave me zero grace in my recovery. He woke up at midnight for 1.5 hours and then again 2-4am both nights whilst Shaun was ill. Again, just life stuff. I keep repeating the ‘it’s just life’ sentence, not because I’m minimising my experience. I’m not. It’s been awful. But because, I have spent many years battling out of the ordinary things. Things like having a baby and spending nine months in therapy because you believed with every ounce of your being that you were crazy, incapable, and unsafe. Things like getting pregnant and suddenly being unable to walk, driving around in a mobility scooter and eating your way to gestational diabetes. Things like never being able to show up because your illnesses’ block you at every turn. Those things are not just life, they’re my life, sure, but they’re not everybodies. Sickness bugs though – they are a free for all and one of the things I learned during my time in therapy, is that I have to give a certain level of acceptance to this everyday stuff and not let it consume me.

I confess that I have always been a person that reacts negatively to stress. Where some people might shrug off the everyday stuff, I take it and wrap it around me in layers. I’ll also go as far as confessing to having used it as excuses over the years. Yet, I’ve also felt the weight of it. Learning to accept certain scenarios doesn’t mean I’m ok with them. Nor does it mean I don’t have to work hard to live through them, it just means, simply - that I have to prioritise peace. 

Moving on from all the sickness, and bugs and life as a disabled mum, for a second…. If you’ve been following me on socials you’ll know that I’m fundraising for IAPMD by way of a raffle. It was my intention to make a fuss about this via my birthday weekend and really try and get some momentum going. Unfortunately, you know what, put paid to that! However I have managed to raise significant funds in the last few days and we’re now on a grand total of £308 smashing my self set target of £250 out of the park. I’m thrilled. And forever grateful to all the strangers on the internet that want to support a cause close to me. Of course my friends and family too, but strangers on the internet are definitely more frivolous with their cheering, that’s for sure! (Just stating an observation, don’t @ me!)

Today, we made it to Dorset. I am still expecting one of the kids to start vomming any second but I shan’t dwell! We drove down this afternoon, made it to the beach for a chippy tea and then holed up in the caravan and listened to the rain pelt it’s tin roof. I didn’t realise how much I needed this break until I arrived here and my shoulders dropped. Tension leaving my body, anxieties being swept up with the spume of the sea, literally. I don’t even apologise for my over the top description of just how sacred this trip is. I needed it, the kids needed it, Shaun, though still feeling fragile, needed it. I hope the bastard that is norovirus and his mate covid manage to stay the fuck away from us for the rest of the week and beyond.

PMDD Lightbulb Moments

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.

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Lori:

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)

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Amy:

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!)

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Jaimie:

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

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Maisie:

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”

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Confessions of a chronically ill mum #7

We started well. The weekend the kids and I went for a short walk on our own. This was a big deal because I rarely go out alone these days, and it was the first time I’d been out on foot with both children. As my health has worsened so dramatically in recent months, I have developed quite significant, but understandable, health anxiety! I took the win Saturday, rested in the afternoon and woke up Sunday ready to attack the day. But it didn’t quite work out like that. I woke up feeling extremely fatigued to the point where I couldn’t keep my eyes open and had to have a nap mid afternoon. For most of us with fibromyalgia this is normal, particularly following a day in which we’re more active. However, for me, fatigue is also a symptom of the pro-drome phase of migraine.

Being the hormonal mess that I am, I have noticed migraine attacks increasing in frequency again in the last two months. 2am Monday morning I was woken by the head pain, swiftly followed by cold sweats, hectic fever and vomiting. Monday was a write off. I spent all day in bed unable to watch tv or read and silently crying in between naps. I’ve said it before, but migraine is the most debilitating symptom for me, even more so than not being able to walk well, because migraine is a complex neurological disease that affects everything!

Fast forward to today, Thursday and I am feeling better. Not by any means ‘well’ but I was able to get out yesterday and I haven’t needed my husband to stay home from work to care for me. I also managed to get out this afternoon even though I couldn’t think of anything worse at the time I forced myself to do it and I have to say…. I’m converted. All the times people said to me ‘you need to get out’ while I led in my bed riddled with pain and anxiety, I thought those people were prize pricks to be honest, but I can see there’s merit there. I will say it’s not as simple as just getting outside when you live with chronic and or mental illness, and even in motherhood it can be hard to just get up and out. Let’s be real here it takes longer to wrestle a screaming baby into the buggy and pack your nappy bag than it does to do your weekly shop! But if you can get outside, you may benefit to some degree. For me the benefits are:

  • It’s a scenery change from the monotony of mum life.
  • I feel a sense of achievement if I’ve been able to do something, even if it’s as simple as popping to the shops.
  • That sense of achievement rewards me with feel good endorphins.
  • It’s so much easier (for me anyway) to be ‘present’ whilst in nature and not dwell on negative thoughts.
  • It’s free!

During pregnancy when I ate every meal in bed and couldn’t get down the stairs, going out was not only a physical impossibility, but it became mentally terrifying. I avoided leaving the house for so long, doing it now feels alien, but it also feels good. I feel like I’m taking back some control.

I don’t have any major confessions this week, other than I’ve spent a lot of it feeling sorry for myself and on occasion a little bitter about how shit and unpredictable life can be when you’re unwell. I’m worried about how I’m going to do my job in a few months when I’ve already cancelled a Keeping In Touch Day because I was so unwell. However, those feelings were scuppered by guilt as they always are when I look at the bigger picture and remind myself how lucky I am to have the life I do. I’ve also learnt that life is more fun and fulfilling when you’re grateful for the tiny things. Like a hot cup of tea or getting into bed with a good book.  Kaiser, my youngest, is an absolute rogue. I’ve had to take deep breaths a plenty in the last couple of days whilst trying to stop him climbing the stairs and then throwing himself down them. Dunno if this is a boy thing but fuck, it’s hard work. 

It’s easy for me to write this today because today has been such a huge improvement opposed to earlier in the week. That’s not to say I won’t feel the sadness and resentment again in the near future, but it means today I choose happy. We don’t always get a choice, and so on the days that we are gifted one, we have a responsibility to ourselves, to make it a good one.

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Confessions of a chronically ill mum #5

The difference two weeks make when you’re living your life around hormones, pain, kids and food…

Ok so some context, last week I was so irrational and some days inconsolable. I cried relentlessly and burst into a tearful rage when my husband told me roofers were coming to do some work on our roof.

I’ll go as far as confessing my embarrassment when I attended group therapy Friday and had to partake in an exercise. It went like this.. 
Group facilitator: Name a situation this week whereby you haven’t been able to contain your emotions. 
Me: My husband told me the roofers were coming and I don’t want them there, making noise, antagonising the dog, leaving their shit all over my driveway, waking the baby up with their clanking, etc etc etc. 
Group facilitator: Ok now strip away your interpretation and just give us the facts. What was the situation?
Me: My husband told me the roofers were coming. 

I can laugh about it now, because I realise how pathetic it is to get so emotional and behave so irrationally over something rather minor. However, to me and my perception, all I could think of was them invading my safe space and my peace, and my feelings felt really valid at the time. I know my hormones and the way I am living my life around them at the moment isn’t sustainable. My daily tracker consists of days feeling angry/anxious/flat/tearful to severe itchy skin/insomnia/nightsweats/cramps/bloating and more. But even with these hellish symptoms, likely as a result of taking progesterone, I’ll still take them over feeling suicidal every month and having migraine attacks that last a week at a time. Weighing it up with pros and cons isn’t the right thing for me to do, because in all honesty I have to accept that I will live with moderate to severe symptoms probably indefinitely, whilst praying that their severity is less.

In the last two weeks Ciara has been poorly, emotional and generally not herself. In the last few days she has perked up again and this brings me joy, I really struggle to regulate my own emotions when the kids are ill and I know they need me to master this better. For some reason I just seem to retain so much anxiety when one of them is not their usual selves. Kaiser has started flying around on his knees faster than our old Seat Leon, and climbing the walls quite literally, but still rarely sleeping. I’ve also spent a night alone in the house with Kaiser that I was petrified of doing, eradicated lots of foods from my diet and lost 6lbs despite the cravings those hazardous hormones bring! So it’s not been all bad.

It’s also noteworthy that whilst some symptoms have been tolerable, fibro fatigue and brain fog has been much worse, though physical pain in the more manageable stakes. We’ve gotten out and seen friends we’ve not seen for ages. I’ve all but organised everything for Ciara’s birthday party, and…life goes on. It’s up and down and yoyo’s persistently but some of it, is ‘just life’ I guess, and not everything is a catastrophe, as much as my brain would like to convince me otherwise!

Next week I have my first appointment with the diabetes team postpartum, and also an appointment with cardiology. Alongside these I have to collect my new laptop for my imminent return to work and arrange for Kaiser to meet his childminder. It’s all go for sure, but it’s not all bad. Shaun and I have a night off this weekend, his parents are having both children so we can lie in bed all day and binge watch all the TV we started the last time we didn’t have the kids home which was January!

Life is good and then it isn’t, it’s awful followed by magnificent, excruciating and liberating all at once. So far this week, I’m grateful for small wins, play dates, family and friendship.

Ps. The roofers haven’t even turned up yet!

Confessions of a chronically ill mum. #4

It’s all been going on! Since last week’s news about my health, I’ve been determined to go full steam ahead with the diet change. For us, living on takeaways we can’t afford and binging on food instead of our pre kid vices like booze and fags, has been the norm for so, so long. Shaun set us a goal of no takeaways in February and I know we’re only 2 weeks in but for a couple who ate pizza and mail order brownies several times a week, we’re smashing it. I’ve signed up to do a diabetes prevention course which I’m keen, but also stressed about getting started on. Keen because I want to make the best changes possible, but stressed because it’s another thing to try and squeeze in to my ever full appointments calendar.

Kids

Kaiser has started crawling! At seven months old, Ciara was crawling at six months plus two weeks, so this didn’t come as a huge surprise. But how annoying are kids that move so soon?

Confession - This week Kaiser had to see a paediatrician. I won’t go into detail here but, we need to get a urine sample from him. Note I say need and not needed because after two hours of trying to catch his piss in a plastic tub, inside a waiting room on the children’s ward, I gave up. I also, and shoot me for being a terrible mother, wished they would just do a bastard heel prick blood test and let him scream! After failing in my attempts and wrestling him into a position that wasn’t comfortable for either of us, I left the appointment sweating profusely in unbearable pain and doing a lot of cussing. Nobody wants to see their baby in pain, but dear god I would of preferred the blood spot over that pantomime. Worse still I am going to have to endure the debacle all over again in my second attempt. Have googled whether it’s ok to wring out a nappy, but have been sadly informed it is not! Fucking Kids!! To top that, Ciara had an appointment at Bristol Eye Hospital and fainted! My second confession is that I was glad it was Shaun that was with her and not me. I know that sounds awful but I also know I would have panicked so badly I wouldn’t of been able to cope. Or maybe I would, maybe I’d have dealt with it on autopilot. Right now though, I’m just glad she’s safe and seems to be otherwise fine. She’s so desperate to go to school tomorrow for her non uniform day in aid of Childrens Mental Health Week that I’m letting her sleep with me tonight so I can monitor how she’s doing. 

Hormones

I’ve been struggling immensely with TMD and went to the dentist on Monday only for them to shave off half of one of my wisdom teeth and then tell me that probably won’t work. PSA, it didn’t! Unfortunately, hormones (those bastards) really flare up all of my pain and it’s not unusual for me to experience horrific TMD during ovulation and through luteal.

Speaking of hormones, I’ve been taking progesterone for around 4 months now, and whilst I am seeing some relief from the mental health symptoms, physically things are no better. In fact I may even go as far as to say they are a little worse. It’s hard because I have to weigh up what is worse, and realistically I know it’s the crippling anxiety and thoughts of suicide, along with inexplicable rage. But knowing this still doesn’t make the physical symptoms any easier to manage.

Breakthroughs

What I will say though, is that I am managing the mental symptoms I am experiencing, much, much better. And I think I have therapy to thank for that. It’s a slow burn, therapy! It makes you feel vulnerable with each session, but the more vulnerable you can allow yourself to be, the less that vulnerability is able to take hold. Then suddenly, seven months later, you realise you are doing better! You don’t always feel it, but you know it’s true. The feeling of drowning in quicksand every time you have a bad day gets less, and it starts to feel more as though you’ve just been inconveniently splashed by a car driving through a muddy puddle.

I’m not saying I’m cured, or that I will never have episodes of dread and impending doom again. But I feel right now, that if I do experience that again, I have more tools in my arsenal to help me fight it. I’ve another eight weeks of group therapy to get through before I can be discharged from the perinatal service. Discharge looms, like a black cloud really, because I’ve been helped in so many amazing ways by the team that I’d like to be able to talk to them about my trauma forever. At some point in the not so distant future, I’m going to have to hold my own hand.

Subtle break-throughs

If you suffer from anxiety, or the feeling of impending doom and inexplicable terror that comes with panic attacks, the debilitating calamity that is intrusive thoughts, the unrelenting personality shift before your menstrual cycle because of PMDD? I hear you. I see you. I am you.

If you suffer from one or all of the mental illnesses mentioned above, you will know that logic is about as far away from fear as is possible. You may as well fly a rocket to Mars and you’d be no closer to logical thoughts during a panic attack. I’ve been having therapy for five months. The single longest stint I’ve ever managed to stick at anything relating to my mental health that doesn’t come in a blister pack. Full disclosure I take the pills too, I need them, but therapy is a different level of healing. It’s eye opening, confronting and real hard graft.

During these five months I have had breakdowns, many breakdowns. I have also experienced breakthroughs. These tend to be subtler, less outwardly monumental, but I can tell you from experience they are transcendent and quite awe-inspiring when you become aware of them.

I’m going to give you an example of one of my recent breakthroughs.

I am currently waiting for several hospital appointments, one of them may end up being quite life defining so it’s pretty important. With anything of importance for me, almost always comes anxiety. Throw in a self diagnosed terminal illness via Dr Google and we’re talking full blown life limiting panic attacks. But, not this time. I got my appointment letter a few days after the referral was made, though supposed to be seen within two weeks the NHS backlog means the clinic are running two weeks behind. Where as this kind of delay would usually lead to more panic, endless overthinking and probable sleepless nights, something has shifted in me and I feel different.

My logical brain has always known that there is little point in worrying about something that hasn’t happened yet, but regardless of my knowledge I have never been able to stop myself from said worry.

Worrying about tomorrow, steals today’s joy.

After going through what I have in the last five months, being scared of my own brain and constantly coming up against new challenges in trying to change the way I think, I decided right at the beginning of my recovery that I no longer wanted to live in fear. Of course simply not wanting something isn’t usually enough to stop it from happening. But with subtle changes and a keen desire to get better, engaging and working hard during therapy sessions and opening up fully to my mental health team, I have noticed a shift. I still feel anxiety around the appointment of course, but anxiety itself is a normal healthy human response. It only becomes problematic when it interferes with our everyday lives. And in this instance, relating to this appointment….I’m so happy to say it’s not doing that.

I don’t want to waste time worrying about an outcome that I cannot predict or influence. I don’t want to fear the worst only to find out when the time comes that it’s not the worst, then look back regretfully that I had wasted precious moments living in fear.

What if it isn’t a tiger in the long grass? What if it’s just a fluffy little kitten?

I won’t bullshit you, I know I’m not always going to be able to rationalise in this way. So many factors contribute to my own personal experience with anxiety and panic, that there will inevitably be times when I falter, and times when I fall. But what I’m doing right now, today, is I’m saying no to worrying about things that aren’t within my control. Isn’t anxiety itself a deep rooted need to control our fears and possible catastrophes?

How did I get here?

  • I took on board the offerings of tips my therapist suggested, such as grounding and breathing techniques and practised them even when I didn’t believe in them.
  • I reminded myself that if there’s a possibility that my world might fall apart, there’s also a possibility, it won’t.
  • I take prescribed medication religiously and stick with it for the recommended amount of time.
  • I’m trying, I say trying because I don’t always succeed, to implement healthier lifestyle changes, such as getting more exercise and eating healthier.
  • I write my feelings. It’s a personal favourite in helping me to process them.
  • I try to stay more in the present moment.
  • I have an amazing mental health team that I talk to regularly, even when I don’t think I have anything to say.

I know these things aren’t easy to do, I know this because it’s taken me twenty years to even begin to start really healing. But along with the above list, I also believe that celebrating small wins is a great way to remind ourselves that even when we are not where we want to be, we are further forward than we once were.

Me this week on a particularly bad day. Reminding myself it’s just a bad day not a bad life.
Also me this week on a better day

104 days postpartum

It’s funny how days are marked by our worst memories and our great ones, are often lost in mind with no clearly accessible date and time attached to them.

At 5am on the 11th October I woke up, eyes barely even open before I was thrust deep into a panic attack. My body wracked by the sensations, my mind reeling from the racing thoughts. To say I was devastated is an understatement, this is the first acute anxiety attack I’ve had in just under three weeks. Three weeks isn’t very long to most people, but it felt joyous to be able to think clearly for a while without the feeling of dread hanging over me. Without ruminating and catastrophizing. Without the pain in my teeth from my clenched jaw. Without the fatigue that hits you after yet another night of insomnia. Sleep when the baby sleeps… haha, if only.

What I’ve noticed though, in the fifty something days since I last updated my postpartum progress, is how hard I’ve tried to implement grounding techniques. How dedicated I have been to my recovery. I started a new contraception eight weeks ago to try and eliminate my periods, ergo reducing symptoms of PMDD. I’ve been on similar contraceptives in the past for the same reason. In this instance I have bled non stop for eight weeks. I am so run down I have ulcers in my mouth and reoccurring shingles pain, requiring more medication to combat. Around the same time I started the new contraception, I also switched my migraine medication for a slow release version and this has helped immensely with preventing attacks.

My son is now fifteen weeks old, he can hold a toy in his hand, chatter and laugh. but he rarely sleeps. His charming little face is one of the most beautiful I’ve seen, that is when it’s not screwed up like a tomato that’s past it’s safe to eat stage, wrinkly in places and as red as hell.

In the last one hundred and four days I have felt every emotion to ever exist. My days are now spent trying to wrestle a screaming baby into a car seat I’m unable to lift, and reading books about Biff and Chip with the big kid. I don’t get any opportunity to rest, which is hard when you have an illness that requires it. I’m mortified to admit some weeks it takes me three attempts before I manage a shower, and even then it’s hurried.

I guess what I’m trying to say is, I find it much easier to remember all of the hard bits, the downs, the panic and the tears and I’m very good at choosing to ignore the successes. Deeming them unworthy in their minutiae. Such as; getting the baby down for a nap on the first attempt. Watching his sister cuddle up to him or gently bounce him in his bouncer with her foot, whilst idly watching yet another episode of Bluey. The beauty in the pumpkin patch photoshoot we’d had recently, a windy autumn day surrounded by orange and forest green, the memory of the rain pelting down on our clothes afterwards, and rushing home to drink hot chocolate.

Watching my son grow, though hard, has not been wholly clouded by my poor health. It’s been beautiful in so many ways, and I’ve enjoyed very much time spent with him. I can feel my confidence as a mother returning somewhat. I have my first night out coming up and I’m anxious. When my daughter was a baby I couldn’t wait to get out, feeling more than ever that I needed to let off steam. Now the only steam I’m interested in, is the steam coming from a freshly boiled kettle and the piping hot tea that comes after the boil.

My pelvis hasn’t healed, I am still struggling with walking as with any physical activity. Unfortunately, it does seem this is likely to be yet another long term problem, but we knew that was a possibility.

I use the word progress to explain how far I’ve come and it’s the reason I’m utterly disappointed when I come up against relapses like that earlier panic attack. Im devastated when Im unable to rationalise my intrusive thoughts. Yet in spite of relapses, hard days, long nights and tragically cold cups of PG tips, I’m grateful. Grateful for the support I’ve received from an amazing perinatal mental health team, from my family, and from those few close friends who selflessly and with conviction, care enough to remind me I’m doing ok.

They say it takes a village to raise a child, and there are many people whom have contributed to my progress. Thank you. And here’s hoping for another 100 days of progress to follow.

54 Days postpartum

23.08.21

My daughter was on her way to bed last night when out of nowhere panic hit me full force. My son, lying in the crook of my arm, suddenly started to spit milk out from the sides of his slow flow teat, and I realised, the hand that was holding his bottle was shaking. I felt hot, from the feet up, like a flush, my brain scrambling for grounding thoughts that just couldn’t make their way to the forefront of my mind. It’s coming I thought, knowingly.

My husband comes when I call, and holds me tight. Our son, bewildered at why he’s suddenly had his bottle snatched from his mouth, our daughter, obliviously cleaning her teeth in the bathroom above our heads. Breathe Shaun tells me. Why am I like this???? I sob, trying to catch my breath. You’re not like anything, Steph. It’s a panic attack and it will pass. He reassures me, never letting me go.

It’s been 54 days since I gave birth. Our son will be 8 weeks old on Thursday 26th August.

This isn’t a birth story, because my birth story is too long, the trauma that surrounds my pregnancy will not shrink into an Instagram caption or a rushed blog post. This is a progress report.

When my son Kaiser was born, and during the days preceding, I was in a constant state of panic. I would have moments of calm, but they were fleeting and hard to grab onto. I’ve plateaued at a panic attack approximately once a week now. I know that a large part of their occurrence is directly linked to hormone sensitivity, yet that gives me no control or reassurance regarding their assault on my life.

I’m currently under the care of the most amazing perinatal mental health team, they are some of the best medical professionals I have ever come across in my entire life and I’ve met a few. Sadly this support was massively lacking during my pregnancy – but that is a story I’ve semi already told and one that would take up the duration of the rest of this blog. The point, is that I have some amazing people in my life at the moment helping me heal from acute anxiety, intrusive thoughts and various states of panic. I genuinely don’t believe without their consistent support during the postpartum period, that I would have gotten these bastard attacks down to once a week on my own.

The trouble is, I’m still very much in a state of fight or flight. During the periods of calm, I am logical. In fact I am probably calmer than I’ve ever been in my life and generally laid back (a term probably not often used to describe me as a person) but I can’t stay there, because as quick as I’m calm, a storm cloud opens up the heavens on my head and I am ready to flee the country as though I’m being chased by a hungry tiger.

However, during those moments of calm I have reflected. I have corrected, and I have made changes to my mindset. Living with chronic illnesses as I do, migraine, fibromyalgia, PMDD etc it’s easy to become all consumed by pain and suffering. The shift in my mindset has been that I don’t want to be consumed by this suffering anymore. I know I am going to suffer, bad days, sometimes bad weeks and maybe even bad months, but I don’t want it to consume me. I want change.

My community nurse said to me this week you have to do different to feel different and so I’m doing different. Every day I’m fighting tiny fires of fear. For example, I’m frightened of being alone with my kids in case I have a panic attack, but I’m staying alone with them anyway, because I know if I avoid this fear it will only grow.

I was absolutely distraught about Shaun returning to work after paternity leave, but I knew if he delayed that process I would be as scared, if not more so, when he eventually did.

I’ve been avoiding books and television that might be triggering or that contain storylines of anyone with mental illness, but very slowly I’m reintroducing those things into my life.

I’ve been too afraid to walk or drive anywhere on my own because of how much pain I’m in. What if I get stuck with the kids? And then what if whilst I’m stuck, I panic?

I’ve been too scared to enjoy days out for fear of repercussions on my body, or to go places more than half an hour away from my house in case I panic and need to flee, but slowly I am doing both.

I’m making this sound easy, and yet it’s been the hardest most hellish experience ever, doing things I’m so desperate to avoid goes against the grain. But I’m using these examples to measure my progress, because it’s so easy to feel as though I’m making absolutely no progress at all when anxiety strikes.

I want change. I want my life back. And I have to do different to feel different. I have to be open to the idea there are positive outcomes in life, because if I don’t open myself up to this possibility, I will forever be living half a life.

33 weeks of growing you

17 weeks of not being able to walk, using a makeshift commode for the many wee stops I need in between the kitchen and the lounge, but not being able to make it up the stairs. Weeks in bed, watching the room spin and change only with the fall of day and night, has been rough. I have felt tremendous guilt, panic, resentment and fear for so many months. I have spoken up, and I’ve clammed up. I’ve felt supported and let down equally, by both the system and people closer to me.

But, Master Cullen – this week I bring better vibes. Hallelujah, praise the fucking lord, mama is finding a way to move through the quagmire of the last eight months. And all it took, was a complaint, and someone to listen.

I am forever grateful to our NHS, I sympathise greatly with the challenges they face. However, after proactively trying to access support to stay on top of my mental and physical health during this pregnancy, I have felt let down.

I asked to be under the mental health team to ensure I didn’t spiral like I did with your sister, the idea of this meant I would be allocated a midwife that specialised in mental health and could manage the links between physical and mental health throughout this pregnancy. As promised, I was, and in the eight months I’ve been pregnant, I’ve seen that midwife twice and sent several dozen texts to her that have been completely ignored. I don’t mean answered late, I mean, completely ignored. Thankfully I am not in mental health crisis, but I’ve felt well on my way as my physical health has depleted so rapidly.

I didn’t want to complain, because despite feeling unheard, the maternity team are all lovely. They are just harried and overworked. But it paid, because as soon as I voiced my concerns I was listened to, and am now, finally, being given the support I’ve been lacking.

There have been so many worse case scenarios running through my head about you throughout these months, and on top of those, the impact of being immobile and in crippling pain has had my mood plummeting to the lows I’d been desperately trying to avoid. I felt like I had nowhere to turn, many, many times.

The positives throughout this pregnancy have been overshadowed by the many negatives, but finally I can see the end nearing with a clearer and less restricted view. Soon, you will be with us, and life will look different again, we’ll face new challenges but I aim to face them with hope and a positive mindset. I cannot promise you this mood will last, I cannot promise you my positive resolve won’t waver again. In fact I can probably guarantee you that it will, but I can promise you that I will do my best, for you and your sister, for our family, our future and our new life with you in it.

I promise you that I will try harder to practise gratitude and to speak up loudly again when things get rough, and they will.

The nature of my health means there will be days, sometimes weeks, during your life that I will fail you. Not intentionally, but because my body is failing me. During those times, as you age (obviously not when you’re a baby) you will need to learn empathy and compassion. Your sister is shining a light on that for all of us at the moment, radiating positivity and excitement at your pending arrival, whilst being the kind and compassionate kid that she is. So I know she’ll teach you the ropes. She will also probably force them down your throat, but we are a family of strong girls and you’ll have to get used to that.

As always your Dad is doing his bit and I think he’ll probably need a rest of his own when we’re out the other side. We are lucky, we are thankful and we will be ok, but sometimes when things are hard life seems like a mountain made of quicksand, impossible to climb. I will always try to teach you that nothing is impossible, but it takes time and we’ll need to be patient with each other, you and me.

Love you 💙

Best sister ever