Reasons You Should Track Your Menstrual Cycle

One of the things I get asked occasionally when discussing PMDD and how I manage it, is how I track my menstrual cycle. Now, I know, as a writer, I should probably favour good old fashioned pen and paper, but instead I prefer to use an app. It’s quick and easy, and all the information you need is available at your fingertips. I’ll go into more detail about which app I use and why, shortly, but first a few reasons why you should track your menstrual cycle.

THE WHY IF YOU HAVE A PREMENSTRUAL DISORDER….

There are many reasons why you might wish to start tracking your menstrual cycle, or maybe you haven’t been considering it previously at all. Either way, here’s a few core points as to why you might start. Not all of them are relevant to PMDD, but if you do have PMDD see this as a reminder that in order to gain access to adequate treatment, and or diagnosis, you really need to have tracked your cycle for a minimum of two months (or two previous cycles.)

The reason being, cycles as we know, change, with hormones fluctuating regularly. When living with PMDD specifically I would (personally) recommend cycle tracking to have taken place for a minimum of three to six months. Because, as a consequence of hormone fluctuations, symptoms will too fluctuate and it’s important, for diagnostic purposes, to note the severity in symptoms and whether they occur frequently or ad hoc. It’s also useful for you individually to note how long your PMDD episodes last, their impact on your life, and whether normal every day activities are compromised. PMDD doesn’t only come with psychological symptoms, despite it being a hormone based mood disorder. Many persons with PMDD also experience a range of more prominent physical symptoms than those with PMS. And all of that’s without really delving into the influence they have on our moods and mental health. IAPMD recently published a study showing that an alarming 34% of persons with a menstrual disorder such as PMDD will attempt suicide. If you have been feeling depressed, anxious or dealing with intrusive thoughts, see a health care provider as soon as possible and start cycle tracking. It’s a really useful tool in determining if your symptoms could be related to, or be exacerbated by hormonal changes and your period.

THE WHY IF YOU HAVE A NORMAL CYCLE….

If you’re someone who has never experienced menstrual health issues, you might be wondering why you’d bother to track your menstrual cycle. Surely if your period arrives like clockwork every month with minimal impact on your life, cycle tracking is an unnecessary chore? Well…not necessarily. The purpose of tracking your menstrual cycle is a personal one, but many people still want to get ahead of aunt Flow’s monthly visit, and keeping track is a great way to do it. You may be planning a holiday in advance and having tracked your cycle for the last few months is more likely to give you an accurate prediction of when a future cycle is likely to end and your period start. You may be keen to learn when you’re likely to ovulate. Again, this is more likely to be accurate if you are regularly keeping track of when you bleed. Many people now use cycle tracking as a medicinal birth control alternative, as well as when planning pregnancy. Perhaps your period has always been regular but now isn’t. Could you be pregnant? Is it peri menopause or even menopause itself? You might also be experiencing symptoms that you are completely unaware could be caused or exacerbated by hormonal fluctuations. Did you know common illnesses such as colds and sort throats can also be caused by hormonal changes including being premenstrual? Learn more about ‘period flu’ here. It’s even possible you’ve developed random hives, or your hay-fever is much worse. When you are cycle tracking though, looking back at the calendar you can pinpoint when this is likely to occur in future and potentially prevent the impact. Perhaps your migraine attacks have worsened or increased despite avoiding your usual triggers. Aches and pains have been bothering you, and fatigue is something you’ve been sure is just ‘normal tiredness’ but has become overwhelming recently.

Hormones affect so much of our bodily functioning and have the power to better or worsen how we feel much of the time. Without tracking your cycle it’s simply impossible to know if physical symptoms you could be putting down to everyday problems, are actually linked to hormonal fluctuations, imbalances, sensitivities, and in some cases more serious illnesses such as PMDD, endometriosis or poly-cystic ovarian syndrome and even some cancers.

HOW DO I TRACK MY CYCLE?

There are infinite ways you can cycle track. Of course, as previously mentioned, good old fashioned pen and paper AKA a wall calendar or diary, will suffice. Just be sure to be consistent with diarising your symptoms and how they affect you. Specific menstrual health diaries are available to purchase on Amazon too.

The reasons I personally choose to track using an app are: it’s quicker, you can set reminders to prompt you to log symptoms, and even add medication prompts on some. Ovulation prediction is easier via an app too, it does it for you based on your previous two cycles. The App I use and have always used is simply called Period Tracker and is free via AppStore it has all the above features and also includes a place to diarise what’s going on, or leave yourself notes. Other common favourites seem to be FitBit and using your phone’s built in calendar, adding emojis to describe mood and notes for symptoms. There are so many to choose from though, plenty of options to make finding the one that works best for you easy!Typing in key words such as menstruation or period in your preferred App Store will allow you to see which ones are available on your device. As ever the infinite wealth of resources available via IAPMD is also a fantastic place to start. They have a self screen tool for people who feel their symptoms could be related to PMDD or PME. Diagnostic criteria and advice as well as symptom tracker sheets specifically designed for PMDD. You can access all of their resources via this link

I personally use a cycle tracker to prevent, reflect, prepare and manage my periods and their impact on my life and abilities. It helps me understand why I might be feeling a certain way and is also a useful tool when presenting symptoms to healthcare professionals. Good luck, ‘appy tracking!

Disclaimer: Everything mentioned in this post, including the links and suggestions, are my own personal experiences, opinions and preferences, and are not affiliated in any way with the websites or brands mentioned.

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.

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 #10

Can’t believe it’s been ten weeks since I started these musings. It’s amazing for me to look back and see the peaks and troughs, highs and lows. I’m very aware that I started writing #ConfessionsOfAChronicallyIllMum quite soon into starting intense Dialectal Behavioural Therapy

For me, I can really see how therapy has helped me come to terms with a lot, and also manage life with chronic pain, physical illness, flare ups of all conditions, as well as PMDD. I would be lying if I said that my hormones are no longer upturning my life every few weeks, because the shift into luteal is still very prominent, despite being on birth control that claims to reduce the frequency/stop ovulation, I am definitely still ovulating. The good news though, is that knowledge and coping skills really are power when dealing with any kind of life trauma, even if that trauma occurs repeatedly.

But and it’s a big but…. No matter how many tools are in your arsenal for the bad days, no matter if you have lots of support or none, there will be days that completely derail you. I know, because I’ve had several myself this week. A visit to the hospital to talk through the treatment options and risk factors for my cardio vascular health, the penultimate therapy session for said DBT group, meaning discharge from the perinatal service is imminent, and being a few days post ovulation, these factors sent me into a spiral. I was wracked with anxiety, up all night, ruminating, latching onto intrusive thoughts, and getting angry and paranoid. I know one hundred percent that I am due on. I know this is premenstrual, and on its own it’s bad enough. Having these additional life factors occur during the luteal phase has highlighted to me, that my coping skills are not absolute.

Kaiser is still teething, he’s been teething since the day he was born, I swear! And he still never sleeps at night. I thought Ciara was a needy baby, and she was, in lots of ways, but this kid is next level. He’s also (dunno if I’m allowed to say this) a typical boy! He’s into absolutely everything. Spending all day oscillating around the furniture, then throws himself off of it 4 or 5 times for good measure. You cannot take your eyes off him for a second and it’s hard. I’m exhausted. I’m also always keyed up and on edge trying to keep him safe.

Despite knowing these things are par for the course of being a woman with a Premenstrual disorder and many chronic health problems, and despite knowing this with Kaiser is all part of #mumlife it’s still not remotely easy! Because for me, it’s not just #mumlife it’s #Sickmumlife. Every hour of every day is spent chasing this kid around and I don’t have the energy for it. I also suffer dearly for the privilege of being parent to two beautiful kids. I have to pay for my time with them, in energy depletion and excruciating pain. I am robbed of time with them because of PMDD and the crippling anxiety it brings with it. I lose weekends with them to migraine and fatigue, and I struggle to provide for them because I can’t turn up often enough to do my job! Also… getting any government help for people who need it is like pulling fucking teeth.

Don’t get me wrong, I’m not saying for a second that I have it worse than most, I know that’s not true. I’d also never say that I am unlucky, because that’s also not true. I just want to sometimes be able to say it’s hard and for someone not to try and offer me green tea suppositories, or a commentary on why their life is harder.

I’d like for people to stop dropping in those two little words at least. Eg: At least one of them’s at school. At least you’re not really disabled. I am! For fuck’s sake, I am!!

Having to prove or feeling like I have to prove the status of my health & illnesses is draining. When at the hospital Thursday, as I hobbled in to the consulting room the nurse asked me what I’d done to myself?! I was so fed up by her question that I literally just said ‘I’m disabled’ because it wasn’t enough that I was wearing a sunflower lanyard stating that I have hidden disabilities, whilst walking like John Wayne after four days of bareback. She still felt it appropriate to ask the question. It made me uncomfortable and I didn’t feel up to offering an explanation. This proved to me that we’re still a long, long way off from wholly accepting that if you don’t look a type of way, you must not feel as you profess to either.

Confession this week is this: Despite doing a lot of work on myself and learning to let go of lots that isn’t within the realms of my control, I still sometimes feel bitter. Radical acceptance has helped me a lot, but there are days, like those mentioned above that I’m still so angry at how my health seeps into every single aspect of my life. I confess that I am terrified about returning to work because I don’t know if I am going to be reliable enough to hold down a job, even a part time one. I confess that even though I’m getting better at understanding my limitations I am still sometimes furious about them. 

Ciara had a birthday party yesterday and it took every ounce of energy I possessed to turn up. To greet the other children and their parents and act like I wanted to be there. She had the best day, and I felt a lot of guilt around how I felt towards the party. But, it worked out in the end and we made it! Sometimes it’s having no choice that actually pulls you from the darkness. Sometimes, choice or not, that isn’t attainable. I’m glad I made it happen yesterday.

Confessions of a chronically ill mum #9

Still horizontal. My pelvis has not improved. I still can’t drive and I still can’t get up and move around freely. What I have noticed though is how different my mindset has been this time being so disabled. I feel less…. Devastated. As if by some miracle I’m accepting the things that aren’t within my control and I’m just cracking on, regardless. I mean, let’s not pretend I’m not frustrated or upset at what I’m missing, the stress it causes and the worry being immobile brings, because of course, I am. But I’m not obsessing, ruminating, catastrophising or all of that other shit I’m so prone to doing when I can’t live the way I’d like. Maybe it’s therapy that has taught me to be more accepting, or maybe it’s the state of the world and my gratitude at having the life I do, even whilst it’s hard. Maybe it’s the spring weather. Maybe it’s because I’ve been bleeding for weeks and when I’m bleeding I’m at my best mentally. Maybe it’s just because luteal hasn’t punched me in the brain yet! Who knows, who cares, I’ll take this more ‘normal’ reaction to the situation and just be thankful for it.

What else is going on?

BIG NEWS. I’m fundraising for iapmd in April. The International Association for Premenstrual Disorders. I’ll be running a raffle and an auction and you can find details of both by visiting my Instagram page and tapping on PMDD raffle highlights. I’ve been blown away by the generosity from people donating prizes, especially in the current climate. Thank you from the bottom of my heart!

But I’ll confess, I’ve also felt a bit disheartened that the buzz on my social media pages has dropped significantly since I started posting about the charity. I do understand that awareness posts will not land or resonate with everyone but it can be a bit of a kick in the guts when your friends don’t get on board to back you. The thing with socials is they are unfortunately slave to the algorithm and if people aren’t liking your posts, people aren’t seeing them, either. So remember even if you’re unable to donate, buy tickets or relate to the cause, a simple like or a share can make just as much difference and may reach people that are able to help. I also need to confess that whilst I’m coping better being so immobile I haven’t coped well with the atrocity that is our GP system. In fact I’ve coped so badly with it I lost my shit both with a receptionist and a pharmacist recently. And whilst I do believe both of them were antagonistic I still feel like my rage is sometimes something I have less control over. Firstly the physio I was referred to last October called me to say he’d never sent my referral to the hospital… he was apologetic and I thanked him for taking accountability, but I’ve been left without any physiotherapy for six months so some might argue it’s no wonder my mobility is worsening again. Anyway, then I requested medication and was told I’d have to wait 3 weeks to speak to a doctor to okay the meds. 3 weeks. They are psychiatric meds and I could of been on top of Clifton suspension bridge long before I got them. I’m not suicidal, but if I was in crisis this notion that we must just grin and bear it is, in my opinion not acceptable. The mental health crisis has long been a pandemic and with GP’s refusing to see people face to face the consequences are real for many. I feel both situations could have saved me a lot of stress and pain had I just been able to talk to a doctor there and then. 

Because of my limited mobility, I have been finding staying on track with the healthy eating harder, but I’m determined in whatever way I can to continue this journey of better nutrition. Though there have been days I’ve succumbed to a few treats, overall I’m still managing to reduce my portion intake and include more fruit and veg.

It’s Ciara’s birthday party next weekend and I’m really hoping I’m able to move better for that. However I know whatever happens she will have the best day. With the help of our families and support of all of her friends we’ll make sure it’s a good one. She’s such a beautiful, kind and sensitive soul, my daughter! She asked for a party this year INSTEAD of presents. What kind of amazing little kid offers to forfeit presents to spend the day with her friends. I mean it’s a good job she did because the party has cost an absolute fortune but we’ve still got her some gifts to open on the big day! She also lost another tooth, her third one, whilst her brother is just cutting his third. Speaking of Kaiser he now knows and responds to his name, nose, and Raa Raa (the noisy little lion) or Thomas (The tank engine) He still never sleeps though.

I guess for now that’s about all that’s new. I’m busy trying to manage my health before I’m due to go back to work in May, and I’m also soon to be discharged from the perinatal service so I just need to get my head around that. Bear with, and watch this space!

Love. Xxx

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

PMDD and pregnancy

April is PMDD Awareness Month and it’s something I’ve not talked about much since becoming pregnant again. PMDD directly corresponds with your menstrual cycle so in theory you should gain relief during pregnancy. However, and this is not fact, merely my personal experience, since PMDD causes an abnormal reaction to normal hormonal changes, whilst you may receive some relief during pregnancy it’s possible you still have a sensitivity to hormone fluctuations. As has been the case for me. Some symptoms are worse than ever before, particularly migraine and feelings of hopelessness.

The first trimester is often the worst for lots of pregnant women even in the absence of PMDD, the severity in hormonal changes tend to happen early in pregnancy and level out as your body becomes accustomed. It’s also thought women who suffer perinatal/postnatal depression may be at further risk for developing PMDD, and I can concur that the dip in hormones post pregnancy deeply affected me the first time around. With PMDD age has been another factor which effects the severity in symptoms for me personally. The older I get the worse my symptoms become. Often it has been the case for me where hormonal therapy such as contraception will provide short term relief only to later stop working with no rhyme or reason. Antidepressant medication can also help manage symptoms but again, long term they often need changing and finding the right type and dosage is a lot of trial and error.

After menarche, my PMDD was prominent, but back then at the age of just eleven nobody took my severe mood fluctuations seriously. At thirteen after attempting suicide I was prescribed antidepressants. It was only later when I started diarising my depression and severe mood swings that often included rage and toxic outbursts that I made the connection between them and my periods. Growing up, soon after enrolling in infants school and before menstruation, I was diagnosed with the hormone imbalance premature adrenarche. Though there is no scientific connection between PA and PMDD I feel this was all part of the same affliction, sensitivity to hormone changes affect me in a major way.

PMDD shouldn’t impact pregnancy in the sense that it alone won’t impact your ability to conceive. However trying for a baby whilst managing PMDD can be difficult, especially if you’re taking contraceptives to manage your symptoms, and or antidepressants. Fluoxetine or Prozac as it’s also known, is one of the more favourable SSRI’s for PMDD treatment. However it’s not recommended for pregnant women and therefore you may be asked to switch to a safer antidepressant or come off of them all together. This in itself can be a life altering (and in some cases life threatening) change that could impact your mental health during pregnancy too.

If your PMDD is severe and not responsive to treatment you may have considered sterilisation, which of course can put added pressure on you if you want to conceive. You might feel like you’re running out of time or you might feel forced to make the decision not to have children at all in order to manage your condition.

Though classified as a mental illness PMDD has many physical symptoms including joint paint, migraine and profound fatigue, that can often be mistaken or overlap with other illnesses, in my case my fibromyalgia is much worse when PMDD strikes and I know many other sufferers often get diagnosed with secondary conditions as a result of living with PMDD too.

Looking after your mental health must alway be a priority including during pregnancy, but it’s scary when you’re offered conflicting information and promises of symptom relief aren’t helpful either. ‘At least you get a break from PMDD’ is one of the most useless reassurances I’ve ever heard. Surely we know by now that even those of us with the same diagnoses will experience symptoms differently and bodily changes will impact us all in different ways. Pregnancy is one of the most obvious examples of this. Some women barely know they’re pregnant at all and others (like myself) find the process insufferable.

What’s important when considering all factors is finding a healthcare practitioner that is aware of your diagnoses and if they aren’t up to speed on what it means, they need to be willing to learn. When I found out I was pregnant this time, I specifically asked to be cared for by the perinatal mental health team, this has included regular discussions with a mental health consultant that specialises in reproductive health. It’s been invaluable for me to know that I have people on my healthcare team that understand and are knowledgeable in helping me look after myself during pregnancy. My most recent appointment with the consultant included discussions around further specialist referral for PMDD post pregnancy, and also the need for me to be prescribed antidepressants again post natal. Even if I don’t feel I need them I have a prescription ready and a doctor who is helping me monitor the impact.

Pregnancy is hard on our bodies, buts it’s equally as hard on our minds, and when you are prone to mental health problems or live with a mental illness already, specifically ones prone to intensify with hormone fluctuation, the need to receive the right healthcare is critical.

https://iapmd.org/ the international association for premenstrual disorders have a directory that can help you find doctors in your area that specialise in PMDD so do check them out.

To the husband who’s wife has PMDD

To the husband whose wife has PMDD.

I know it’s not your fault. I know you didn’t mean to bring home the wrong milk. I know you didn’t climb inside my fallopian tubes and set my ovaries on fire.

I know you’ve had a long day at work and the last thing you want to do is come home to me, your wife, in tears again.

This time because I’ve ran out of chocolate or because the TV show I wanted to watch didn’t record.

It’s true I’ve cried over the wrong sandwich filling before.

I’m making it sound funnier than it is.

It isn’t funny. Not at all.

There’s nothing funny about my hormones making me want to kill myself at least once every month.

There’s nothing funny about me threatening to leave you every time I’m ovulating because I can’t cope with the depression the change in hormones bring. There’s nothing funny about the pain I feel when my uterus is about to start shedding and the agony that follows it’s onslaught.

It’s not easy for you, to live with this unpredictability. It’s not easy for me either, I don’t recognise myself some weeks. I can’t sleep yet sleep is all I want to do.

I know it must be completely mind boggling for you, when one minute I am Psycho Sasha (the name I’ve given to the me that PMDD releases) and one minute I am just me, your wife, again.

One minute I want to rip your clothes off, or cuddle up close and the next, I quite literally want to punch your face in. Your touch makes me recoil.

I know it’s not your fault when I beg you to turn the Rugby down on the tv because the noise is giving me sensory overload.

I know it’s not your fault that the bubble bath you ran me has to be emptied because the bubbles you added are causing my skin to come out in hives.

You didn’t know, because it didn’t do that last month.

I know it must be hard to keep up, I know it must feel like you can’t do anything right. But please know this, you are doing something right. You are sticking with me. You are amazing to put up with me.

You are a hero for supporting me.

If it’s possible to ask anymore of you, I ask you this… please read about my conditions, please familiarise yourself to better understand the signs. Please educate yourself. That is how you can help me, and in turn I will try everything available to me to help me control it.

It’s not easy, and because of my other conditions some medications are counter productive.

Because of how I feel mentally, counselling can be triggering, but together we can ride this storm better.

Thank you.