HRT to treat PMDD – Week 3

If I could sum up the last three weeks in three words they’d be INSOMNIA, ANXIETY, and HOPE.

Insomnia

So let’s start by telling you about the insomnia. I’m not going to sugar coat it, it’s been horrific. It began almost as soon as I started using Oestrogel and unfortunately it remains. If you’re reading this, you’re probably a HRT user yourself, menopausal, someone who thinks they may have PMDD or a PMDD sufferer. Or maybe you’re none of the above and have no previous insight into hormone replacement therapy at all… I know it can be confusing when deciding whether or not to try a new treatment, especially with how the media portray HRT as either a wonder drug (and for many it is) or a carcinogenic. But like with anything we put into our bodies, there are side effects to consider. For me, insomnia has been one of the most problematic. As a mother and someone whom lives with chronic fatigue and on occasion hypersomnia, I have found this particular symptom difficult to navigate. Mainly because, if you’ve ever lived with insomnia you’ll be aware of how it can feed into anxiety. Just how dark the depths of the night can become when sleep is evading you.

Anxiety

Since beginning HRT I’ve had loads more energy – which to some would be deemed a positive side effect. However, for me it’s not been so good, because the energy I seem to now have in surplus, is creating a quagmire of anxiety and ‘nervous tension.’ In short – I can’t relax. I’m feeling often keyed up and on edge.

A few other notable side effects have been:

  • Hot flashes
  • Nausea
  • Breakthrough bleeding – though this could be attributed to the recent mirena coil I now have in situ.

Hope

But I’m still hopeful…. Mainly because what else have we got if there’s no hope? And also because it’s very early days and adding in additional hormones was always likely to cause some symptoms particularly when you’re adding them to treat a hormone sensitivity and not necessarily a depletion as you would in menopause.

I’ve also just finished reading I BLAME THE HORMONES by Caroline Suzi Church and that gave me hope. It’s something I want to review on its own blog post, because the similarities between mine and Caroline’s PMDD trajectory are so similar, it’s more than I can possibly squeeze into a paragraph on this blog, but if you have PMDD you absolutely need to read it! Not only is it scarily accurate, a whole half of it is dedicated to treatment and self help. It really is a wonder of a book with so much insight into reproductive mental illness.

Positive changes

Finally, I need to finish by saying there have been some positive side effects, though fewer, it’s important for me to be transparent. Many people have great results using HRT and as mentioned above I am still really hopeful that I too, will get to experience more of these going forward. One positive change I’ve noticed is a reduction in the severity of my overall joint pain. Which is pretty huge considering I’m in pain almost all of the time. I’m not pain free now by any means, but my joints are beginning to allow more range of movement and I can only attribute this change to coinciding with my use of HRT. Another thing that’s improved is the horrific intrusive thoughts I was having. They are not gone altogether, but when it comes to feeling out of my mind I’ll take every single win (however small) I can get and this is one that suggests HRT could be the right direction for me.

Disability Pride

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

Some people may see the month as a time to celebrate their individual success and accomplishments, whereas others may celebrate the feeling of pride about being disabled.

https://www.inclusiveemployers.co.uk

Have you heard about Disability Pride? Honestly, it wasn’t until a few years into my diagnosis that I first heard of it myself. Though I think that’s because I wasn’t referring to myself as disabled back then, despite spending weeks at a time in bed, wracked with pain and requiring months and months off from work. Unable to function without help, everyday activities became once in a blue moon activities. There have been many times over the last six or so years that I’ve been too unwell to dress myself or shower. Not as a one off, but consistently for long periods of time. At times I’ve been too disabled to work and to walk. My own disability pride has arrived, but only after battling years of internalised ableism.

I was once a person that believed disabilities were -for the majority at least- visible. I believed you had to have a permanent wheelchair or an aid, a prosthetic or an obvious disfigurement to be considered disabled.

I believed if you were depressed you had to look depressed (whatever that looks like) Despite myself suffering from mental ill health since childhood, I still had this idea that mental illness meant being obviously and outwardly ‘crazy.’ (I use this term to poke fun at my own misconceptions and it is not intended to cause offence.)

I’m here today to say, I was wrong. Not only was this way of thinking disrespectful to minority groups including those with disabilities, it was wholly inaccurate, and it was disrespectful to myself. I spent a lifetime playing down my own experiences, symptoms and health issues, because there was no way I was possibly suffering as much as someone else. But there’s an issue with the notion that other people have it worse and therefore we must ‘suck it up’ and the issue is that it’s harmful. It’s harmful because it attempts to invalidate a person’s suffering. Someone will always have it worse, we know this without a doubt, but to apply that to a person’s suffering (including your own) leaves us open to discrimination, feelings of shame and guilty whilst also furthering to escalate mental health issues.

Disability pride means celebrating all disabled persons regardless of the severity of their disability or it’s visibility. Not everyone who becomes disabled will remain so forever, though many people with chronic and ongoing illnesses will be impacted enough by their conditions to be considered disabled.

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

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

My battle with internalised ableism is an ongoing one. Despite feeling more comfortable, open and able to discuss my health and it’s effects on my life, I still feel some guilt around doing so. I feel as if I am seen to be attention seeking if I tell the truth about how my illnesses affect me. There’s a real crossover between being positive and not focusing on all of the things you can’t do, and downplaying symptoms to appear more positive to the outside world.

In 2020 around 20% of the working population reported disabilities. This number, though higher than previous years, is still disproportionately low, considering more than 1 in 5 of us are affected by disabilities in the UK. It is unfortunately more likely that disabled people don’t feel able or comfortable disclosing their disability to their employers. Disability pride is a great way to celebrate disabled people for whom we are. As well as raise awareness, and shine a spotlight on discriminations such as the disability pay gap and lack of world wide accessibility in the work place.

The purpose of DP is to highlight that a disability can have a significant impact on a person’s life, whatever the cause and regardless of its visibility. It also encourages more people to be proud of their disabilities. Perhaps you’re like me, and find it hard to pride yourself on things that have felt traumatic, debilitating and painful. Or perhaps you are proud of how far you’ve come, in spite of, or alongside your disabilities. Perhaps, you’re just proud you’ve managed to stay alive. And that’s ok too.

Disabled people are almost twice as likely to be unemployed as non-disabled people, and 3 times as likely to be economically inactive

https://www.scope.org.uk/media/disability-facts-figures/
Disability Pride Flag
The charcoal background – to represent those in the community who have been subjected to ableist violence, as well as representing protest in the community.
The “band/road” shape – represents how disabled people face barriers and have to navigate their life according to them. The different colours in the shape represent the creativity in navigating life, and how the community is breaking free from stigmatisation.
The colours – represent the various experiences and needs (mental illness, developmental disability, invisible disabilities, physical disabilities and sensory disabilities) in the disabled community.

There are many ways you can still get involved in disability pride month. Sharing on social media, writing your story, and talking to your employer about supporting disability pride, are all great places to start.

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 #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! 😜

A novel for the migraineur

As someone who identifies as disabled, living with several debilitating chronic illnesses, I am forever searching my beloved books for representation of such characters. Until now I’ve been yet to find a protagonist whom is presented as disabled and humble. A character doing things along side of their disability, as opposed to in spite of. So many portrayals of disability can come across as though everyone living with one should be more productive, and offering accurate representation of invisible yet life limiting chronic illness, is paramount for awareness. Fiction writers are getting better at being more inclusive, particularly with mental health in narratives, but many are still falling short on the disability front. It’s a hard balance to strike when wanting to write exciting plot twists, but including a realistic representation of disabled or mentally unwell characters. What tends to happen is, a disabled character may get a side part in an able bodied person’s story. Or a mentally unwell character might end up being the villain in an attempt to emphasise the extremity of an illness, but I’m pleased to say, not in this book.

Seven Days In June by Tia Williams is a tale, written with grit and heart. Honestly, I devoured it, what a marvel! A book that really inspires the likes of me, a chronically sick, wannabe author.

Eva Mercy is a single mother and bestselling erotica writer who is feeling pressed from all sides. Shane Hall is a reclusive, enigmatic, award-winning novelist, who, to everyone's surprise, shows up unexpectedly in New York.

When Shane and Eva meet at a literary event, sparks fly, raising not only their buried traumas, but also the eyebrows of the Black literati. What no one knows is that fifteen years earlier, teenage Eva and Shane spent one crazy, torrid week madly in love. While they may be pretending not to know each other, they can't deny their chemistry - or the fact that they've been secretly writing to each other in their books through the years.

Over the next seven days, amidst a steamy Brooklyn summer, Eva and Shane reconnect - but Eva's wary of the man who broke her heart, and wants him out of the city so her life can return to normal. Before Shane disappears though, she needs a few questions answered . . .

What the blurb doesn’t tell you, is:

Protagonist Eva Mercy lives with the (often invisible) disability, migraine. The pages dedicated to her illness are raw, heart wrenching and honest, despite their fictional nature. Eva is a complex character and Williams is a perfect story teller. Offering up a window into the life of a young disabled mother. Not only is Eva a disabled person but a talented author, mother and sexual human being, too! Real life with migraine is often painkillers and dark rooms and this book captures that, even down to triggering smells and ‘face melting’ pain. It also tells the full story, the story of a woman with complex emotions, sexual desires, ambition and drive, that is often hindered by migraine attacks. As is her ability to parent and participate in loving relationships. It links trauma which is so often the catalyst to a life of chronic pain. But includes subtext, relating to mental health and teenage mistakes, drug abuse and even parental neglect.

A Reese Witherspoon Book Club pick

If I had to rate this book in stars I’d give it a full house simply based on the mention of migraine, and the debilitating nature of their attacks. However, I’m giving it a 4.5, and the reason I hold back the full five, is that the plot itself, whilst raunchy, does teeter over the edge into contemporary romance. If happy endings aren’t your bag, this book may not be for you. What I will say, is the road to happiness is portrayed with honesty, stubbornness and heart. Bonus, it’s a relatively short read that isn’t clunky to digest.

Praise for Tia Williams. You have a new fan!

Buy Online at Amazon now

Confessions of a chronically ill mum #14

It’s Tuesday and yesterday wasn’t a great day. I’ve been doing lots lately, socialising and catching up with friends, rearranging things that were supposed to happen around my birthday in April, but couldn’t go ahead because of sickness. Along with my mum’s sixtieth earlier this month. I’ve been out and about a lot. What should be, and is, a treat to most of us, costs me a lot physically and emotionally. That became paramount yesterday when I suffered my first panic attack in months upon waking. My thoughts were whizzing through my brain so fast I was getting snippets of memories that I couldn’t latch on to and feeling like I had zoned out. I told Shaun I was too afraid to be home with the kids on my own and that he would need to stay home too. After a short while that felt like a looooong while, I regained some composure. I acknowledged what I was feeling and thought about all of the discussions I’d had previously with the mental health team about how to rationalise my thoughts. I used distraction techniques learned in DBT too.

After that short while, I felt well enough to engage with the children and told Shaun I would be ok and for him to go to work. Then I did what I always do when I’m feeling anxious, I checked my period tracker. Now, the period tracker is doing half a job at the moment, because I’m no longer having a period in the blood shedding sense, but I am very much still suffering cyclically with PMDD. I’ve had random bleeds recently that have upset the original equilibrium of follicular and luteal. To be honest I dunno whether I’m coming or going! I blame the hormones.

But, and it’s a relevant but, I also did something brave. I reached out to The Pmdd Collective. The collective is a group of health and well-being practitioners that are PMDD informed and provide both psychotherapy and peer support to the PMDD community. Please do check out their website and Instagram page to stay up to date with all the amazing work they are doing, including offering reduced priced therapy sessions, PMDD focused poetry groups and much more.

After writing a message to Emily, a founding member of the collective via instagram, I realised in fact, the panic attack probably didn’t come out of nowhere. My discharge from the mental health team has been a heavy weight, mainly because of not being able to get any support whatsoever from my GP, despite my complaints and self advocacy. So I have felt a little lost and out on a limb. My hormones, of course are there, fluctuating and torturing me whilst they’re at it. My kids, are exhausting, and my body cannot often keep up with the physical demands required, to chase around a prewalker hellbent on making himself a Jason Statham stunt double. My pelvis has been agony lately, making even sitting excruciatingly painful and that’s more of an issue now that I’m back to work. It’s been a minute, and settling back in to routine whilst managing symptoms 24/7 and children and life, hasn’t been easy. Despite my employers being really supportive and attempting to make the transition smooth for me. My social life has turned up a notch and I’ve had to suffer the pain and fatigue, migraine and mouth ulcer, repercussions of having a social life as chronically hormonal and chronically sick person.

Lastly, the most notable reason for my panic yesterday was, I had a hospital appointment at 10am. A heart scan that will determine the function of my heart and either diagnose or debunk the original theory that I may have heart disease.

So I guess you could say, maybe it’s not that surprising or out of nowhere to have suffered a panic attack yesterday morning.

As always with these musings though, I like to try and think about the positives. I believe this counts as my confession, because I’m finally confessing to the belief that positivity can and does exist alongside all of the other shit! Here’s a little list of yesterdays positives for clarification.

  • I got through the panic attack. Without taking medication. I used skills I’ve learned and listened to voices I’ve heard before (in my head) teach me how to sit with these feelings for a while.
  • I got another perspective from Emily. It wasn’t about reassurance seeking, but rather a different viewpoint.
  • Writing it down, helped.
  • I danced (upper body only obvs) with the kids in the kitchen to The Specials, as a distraction technique and to boost endorphins.
  • I went into my hospital appointment strong. I have no control over the results so much like the breast clinic appointments I was having recently, I reminded myself not to panic about things that are out of my control.
  • I didn’t go crazy because of a panic attack.
  • My wise mind kicked in and I was able to calm myself down, something I haven’t been able to do on my own in 11 months.
  • The kids are both, alive, happy and loved. I’m doing a good job.

I know I’ve crammed a lot in, and much of it sounds negative, but it’s not all bad. I’m really grateful that I’ve been able to see my friends again more often recently, it’s been a wholesome experience. I just need to pace the social aspects of my life better. I’m grateful that I still have friends that want to spend time with me and invite me places. I’m grateful to have been able to go for walks with my mum and the kids, and I’m grateful to have spent some time as a family with Shaun and the kids. I’m also grateful to be shipping them (the kids) off to their other Nanny’s house on Thursday for the night because, Jesus, looking after Kaiser is like raising an unruly hyena cub, or at least what I imagine that to be like.

Life isn’t bad. Rough somedays, yes. But not bad. Ciara and I have talked a lot recently about extracting the good from the days. We’ve spent some time working through emotions and of course I have a husband who has his shit together and shares the load. Here’s where I say, probably not often enough, that I am grateful for him, too.

My Family

Confessions of a chronically ill mum 13 – I’m back

COACIM had a bit of a hiatus. This was unintentional but life has been both busy and really quite difficult in recent weeks. I’ve not been as active on socials as I usually would. My youngest child Kaiser, has been quite poorly. This has coincided with both my return to work and my discharge from perinatal mental health services. You can probably imagine what I am likely to say next… Yes, I’ve had a flare up. An exacerbation of my symptoms is common with life’s stresses and I’ve been feeling pretty rubbish in general. Mentally, I am still coping. My discharge from PNMH definitely rocked the foundations I’ve built though, and it’s been a weird and destabilising week.

Migraine attacks have plagued me, I had been back to work just days when I had to leave early to collect Kaiser from childcare because he was so unwell. It was also my mum’s 60th birthday. We’d had a weekend away planned that my sister and I had bought her as a present, I wasn’t sure Kaiser was well enough for me to leave at home, and I wasn’t sure I’d be well enough to attend myself. As it turns out, I did manage to spend a few days away with my mum.

It was lovely, not just to chill out with my mum but because one of my great friends came up from Devon and stayed with us also. I don’t get to see her very often and always miss her dearly, so to spend a few days in her company, alongside celebrating my lovely mum’s coming of age, was amazing. Amazing doesn’t mean perfect though, unfortunately after a walk Saturday I spent all day Sunday in bed unable to get up and move my body freely without crying out in pain. Several times my mum had to come into my room and help my up out of bed and onto the toilet. My life’s reality is hard to accept always, but particularly when I’m supposed to be celebrating and bringing the fun with me. I didn’t drink any alcohol so there was no trigger warning, just a body that doesn’t function well at times, and those times are usually times I am trying to live. Somedays I thrive but most days I just survive.

Kaiser is recovering well but the four top teeth that all cut at once in his tiny little chops, are still giving us hell, as is his endless cough!

I’ll confess, I felt a whole heap of ‘mum guilt’ about leaving him with my husband. When my babies’ are unwell I want to be with them, comforting them. I also wanted to be there for my mum to celebrate her sixtieth. I don’t know why I feel the need to explain this, but I did ensure Kaiser’s symptoms were well managed before leaving him to recover with his dad and without mummy cuddles.  

What’s also been really arduous has been talking myself down when feeling anxious, without the support of the community perinatal team helping to keep me in check. My discharge with them was emotional. I have been supported by them for a year and that’s a long time when you’re spending it living day by day, often hour by hour, sometimes minute by minute. I’ve had a few wobbles already and I was only discharged Wednesday, when thinking about moving forward and how I navigate this brave new world on my own I often overthink and find myself panicking. I made great connections with my key-workers’ and whilst there were always clear professional boundaries, it’s not easy letting go of relationships that have served you so well. I felt really truly supported for the first time in my life by professionals, and I’m worried I’ll have to go back to fighting for basic support and healthcare. I write this knowing it could be worse, but always wishing the system was better.

An Instagram post I wrote just a couple of days before discharge

For now I need to get back into the habit of better self care. In recent weeks I’ve resorted back to eating crap, the fact I’m not able to move much again doesn’t help, but it stops now. I’m restarting getting my diabetes coursework back out, along with my DBT handbook and I’m taking action before things spiral again.

I know what I need to do I just need to learn to maintain healthy habits and ditch the many unhealthy ones I seem to find so easy to stick to!

In other news – you may have seen on my ‘News’ page that I’ve been nominated for two awards in the Mental Health Bloggers Awards this year, and I’d really appreciate it if you’d take a few minutes out of your day to give me a vote. Your support continues to mean so much to me. Vote 🗳

Dear Steph – My daughter was assaulted.

Can you advise how to communicate with my 15 year old daughter after sexual assault as we’re trying everything and failing, suicide attempts, self harm….She’s missing so much school she’s withdrawn but still wants to go out all the time with friends. We’ve got counselling through the police and school. Trying to just be there for her and show love and understanding but it’s affecting the whole family her younger sibling is self harming as she sees her doing it and thinks that’s how you handle things. I should have protected her but I’ve let her down.

Dad – East Anglia Uk

Dear Dad,

First and foremost I’d like to express my sincere apologies for what you and your family are going through right now. I can only imagine how traumatic this must be for each and every one of you. I’m really pleased to read your daughter has been referred for counselling, as someone specialist in this field will be paramount to her healing. With regards to her still wanting to go out with friends, I imagine it might come from a place of craving normality. Her friends will likely be carrying on as normal to some degree, where as you as her parents are understandably concerned and unable to ignore the enormity of what she’s been through. Many victims of sexual assault will feel misplaced shame in relation to the attack, and this can have an impact on familial relationships. I am not a mother of teens but I have been a female teenager who suffered with her mental health, during a time when sexually inappropriate behaviour was common place. My advice is purely based on me empathising with your daughter and not from experience or professionalism. I personally wouldn’t advise forcing her to talk, it may be simply that she isn’t ready yet, or hasn’t fully processed what happened to her. I do recommend that when she is ready, having frank and honest conversations about the assault. Acknowledging that it happened and was extremely traumatic for her, may be an important part of her healing. It sounds as though she is unsurprisingly experiencing extreme emotions around the incident. There is a particular type of therapy I have found really useful for emotional regulation. It’s called Dialectal Behavioural Therapy and is focused on coping with uncomfortable emotions and better managing the effects of them. It really helped me with intrusive thoughts and extreme anxiety and panic attacks. It could be worth asking your GP to refer your daughter or looking to see if there is anywhere that offers sessions in your area. I would also suggest that if you are ever concerned about your daughter taking her own life or attempting to, calling 999 or taking her to A&E. Many GP’s are proving, in my opinion, quite useless recently, so if you’re ever concerned for her mental health and aren’t getting support from them, hospital is the next place to try. I understand that might not be what any of you want, but my experience of being in hospital for my mental health actually turned out to be a really positive one. I believe it saved my life. Your daughter may need trauma counselling alongside DBT so still accept the offers from the police and school. Additionally I want to address what you’ve mentioned about feeling as though you’ve let her down and didn’t protect her. I have heard this being a really common thought process for loved ones of victims, but I need to stress that you are not responsible. You are clearly a loving and concerned father and everything you are feeling right now is valid. But you cannot take the blame for someone else’s actions. You didn’t cause this, you didn’t allow it to happen, and you are not in any way shape or form to blame. I think every parent on the planet wants to protect their children at all times but unfortunately it’s not possible for us to do so. Please if you take nothing else from this response, know this is NOT your fault. I hope that the police are providing you ALL with support, but if not please ask your doctor for help or talk to someone you trust. Lastly in relation to your younger child, I would recommend trying to access counselling for them too and having a chat with their school to see if they can offer some support. I’ve listed below support services that may be able to help you further. You may already be aware of some of them.

Young Victims provide support for both victims and families.

Young Minds could be well placed to support your younger child to process what’s going on in the family.

Give us a shout offer free and completely confidential text support to anyone struggling to cope. This may be useful for yourself and your daughter.

Rape Crisis England and Wales these guys have some useful resources for supporting a loved one.

Finally, I’d like to wish you and your family healing and hope. Please know you are not alone, you are not to blame and you are doing everything you possibly can to help your daughter. Being strong for our children isn’t easy and in these circumstances I can’t begin to imagine how difficult it must be for you. I hope that with the right support your daughter and your family will be able to heal.

Take good care of yourself.

Steph x

Send your questions or confessions to divamumsteph@hotmail.com and include ‘Dear Steph’ in the subject line. Can be 100% anonymous if requested. Otherwise first name and region will be shared.  

Maternal Mental Health Awareness Week.

MMHAW runs from 2nd-8th May 2022. It’s purpose is to raise awareness for mental illness and mood and anxiety disorders that occur during the perinatal space. The perinatal space is considered to be from pregnancy right up until your child is a year old, but in my personal experience this fluctuates for everyone. Last year during MMHAW, I was pregnant, and in a very dark place. I opted not to get involved in much awareness raising, though it was a decision that I found difficult, because spreading awareness of topics such as this, is so important to me. However, whilst these weeks/days/months are so important, they don’t come without triggers. So I want to let you know, if you’re in the perinatal space, just out of it, or five years postpartum, if spending too much time online is proving triggering for you right now, please take a break. Not feeling able to spread awareness is ok. Joining in for one day is ok. Wanting to get involved in the whole shebang is ok. Having good intentions and then changing your mind? Also ok.

Last year just before MMHAW and Maternal Mental Health Awareness Week Blog

Maternal mental health/illness is complex and the effects are different for everyone. We’re often warned of postnatal depression but maternal mental health is so much bigger than depression alone and definitely doesn’t just occur postnatally. I’ve had two babies and suffered with my mental health with both, throughout pregnancy and during the perinatal space. But the effects of each illness were very different. For example with my daughter I suffered low mood (depression) as more of a prominent symptom. I would want to be away from her a lot and I struggled with bonding and finding my identity as a mother. With my son, anxiety and intrusive thoughts were the overriding emotional responses to pregnancy and for a long time postpartum. I couldn’t be alone with the children for weeks after his birth, I felt as if something bad was going to happen whilst they were in my care. I had many intrusive thoughts and my main fear was of developing psychosis. Funny really, because the fear of this very nearly tipped me onto the scale of being psychotic.

Have you ever considered the language used in relation to maternal mental illness?

The reason I ask this, is because I have realised as a sufferer and survivor that we are still relatively behind in how we refer to maternal mental illness. Many people still only resonate with the term postnatal depression except we know that postnatal is just one period within the perinatal space. We know that depression is just one of the many perinatal mental illnesses that affect women during this time period.

Other types of maternal mental illness include

  • Maternal Anxiety
  • Maternal OCD
  • Peri and postpartum psychosis
  • Maternal suicide
  • Exacerbation of existing mental health conditions such as bipolar disorder and obsessive compulsive disorder
  • Development of menstrual disorders postnatally

Organisations such as PANDAS often now refer to mental illness that occurs during the perinatal space PMADS which stands for Perinatal Mood and Anxiety Disorders. Others refer to postnatal depression as PND or PPD and some like myself who suffered both depression and anxiety refer to it as PNDA. Perinatal depression and Anxiety. The terminology might not seem overly important, but what is important is the level of understanding and knowledge, that maternal mental illness is not just one symptom, it can often include all of the above at the same time.

I’ve just finished ten months of medical and therapeutic intervention since giving birth to my son in July 2021. I am also medicated for both anxiety and PMDD. Having my children crippled me physically, it shattered my mental health and any equilibrium in my life disappeared. I love my kids, that’s not in question. Though I found growing, birthing, and caring for both of them during the perinatal period, traumatic in the extreme.

What really saddens me when I look back now is that I cried out for help, particularly in my second pregnancy. From just seven weeks pregnant I asked for mental health support. I was told I wasn’t anxious or depressed enough at that time. There was no preventative intervention, nobody to guide me. Particularly as I carried my son during the height of the 2020 pandemic. By the time I was admitted to hospital on the verge of psychosis, the damage had been done. Not only did I need to recover from the trauma of a debilitating pregnancy, I had to do so whilst mentally very unwell and with two children to look after. I still believe that if I had been referred to the perinatal mental health service earlier in my pregnancy my experience would have been very different. You can read more about my experience during my second pregnancy here. Pregnant and chronically ill.

I haven’t shared Kaiser’s birth story, because still to this day, ten months on, after much therapy and support, I find it a harrowing and destabilising time to reflect on. I can talk about it in conversations but I struggle when recalling the details and writing it all down. It causes me pain. And whilst I’ve worked through a whole heap of trauma and accepted my illness, delving into and sharing the true extent of my thoughts is not something I’m completely comfortable with yet.

What I am willing to do is share a quote from the day he was born. A quote that I wrote in the notes on my phone during our first night with Kaiser.

I feel scared of my baby, scared of what the responsibility of being his mum means. I’m missing my other baby, I can’t cope with this one too. Am I a bad mum? I don’t want to be here, in this room with the yellow light and the sound of feet moving and trollies rolling outside of its door. I don’t want to go home either. I just don’t want to be HERE at all.

12.10am 02.07.21

There is a lot of work being done by charitable organisations such as PANDAS as well as The Perinatal Mental Health Partnership to find out what’s causing huge hold ups for people waiting for mental health care during the perinatal period. NHS England are also working on extending the time you can be supported when suffering perinatal mental illness. It’s currently until your child is a year old, however many women find symptoms of mental illness might occur later in the perinatal period and need further or ongoing support.

If you are struggling with your mental health at all please reach out to your GP or one of the organisations listed below. You’re not alone. If you feel like you’re not getting anywhere with your GP ask to see someone else. If you or someone you know is suicidal please visit your nearest A&E department or call your maternity unit immediately. Mental health care is for women during the perinatal period is as essential as physical healthcare.

News

I’m delighted to announce I have been nominated for two categories in this years’ Mental Heath Blog Awards.

MHBA are a way to showcase patients and advocates in the mental health community and it’s an honour to have been nominated.

See full list of nominees and their categories here. Voting is open and it would mean the world to have your support. 💚

Please click here to vote. 🗳 🗳 🗳

It’s time…..

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 #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