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

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

Premenstrual Dysphoric Disorder is a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone. It’s suspected this reaction arises from a cellular disorder in the brain. Symptoms can worsen over time and or around reproductive events such as menarche (the first menstrual cycle), pregnancy, birth, miscarriage, and perimenopause. Three weeks ago I chose to turn off my ovaries. A subcutaneous implant of GNRH Analogue was placed under the skin of my abdomen to shut down ovarian function. This process is called Chemical Menopause or medically induced menopause. It should (if it works) put my body into a reversible menopausal state. If this works well and symptoms subside I’ll hopefully be added to the waiting list to have my ovaries removed. This isn’t a first line treatment, nor is it an easy one to endure but for the sake of my health specifically my mental health I felt I had no choice but to utilise this option.

So why the fundraising and what’s this about Teal Tuesdays?

April is PMD awareness month. A whole month dedicated to raising awareness for those of us living with a premenstrual disorder. And this year IAPMD the charity that facilitate awareness month are making Teal Tuesdays their big fundraiser.

How do I get involved? That’s the easy part. Below is a simple step by step guide to taking part.

Why do you need donations? Donations help IAPMD continue to provide vital spaces and educational resources for patients, healthcare providers, and researchers. A donation of just US $25 can fund a 1:1 peer support session for those in need. Funds raised also help IAPMD to further research Premenstrual Disorders and support their mission to create a world where those with a PMD can not only survive – but thrive!

Can I host an event or do my own sponsored thing? Yes absolutely. IAPMD have curated a list of ideas to make it easy and fun to participate.

Image used with permission

Why Teal? The official ribbon colours for PMDD are teal into black and like many charities have a colour that represents them, IAPMD wanted theirs to be a signature colour for those who fundraise for them. Plus, it’s a great colour and IAPMD can’t wait to see what you do with it!

Can I buy something to wear? Yes! Bristol based designer and fellow PMDD patient, my mate, Amy Steel of One Tuff Muvva has donated some super fun designs that you can purchase on T-shirts and a variety of other items. Find them here.

Note from me: PMDD is a debilitating chronic illness that is widely misrepresented and dismissed. It takes a person on average 12 years to get an accurate diagnosis and many women are misdiagnosed with Bipolar Disorder. This charity has not only helped me understand my condition better with their comprehensive resources, their groups have answered many of my questions. Though international IAPMD have a small team and each one of them work tirelessly to make Premenstrual Disorders visible. Their mission is to create a world where those with a PMD can not only survive; but thrive. If you are someone who was assigned female at birth, a woman, wife, mother, daughter, sister – I urge you consider making IAPMD a cause you get behind. PMDD & PME can and does ruin the lives of those living with it. Without information and awareness sufferers will continue to be misdiagnosed and incorrectly treated. It can occur at any age and worsen over time. IAPMD is the only charity of its kind providing international support to PMD sufferers worldwide.

If you’re able, please help!

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.

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.

104 days postpartum

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

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

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

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

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

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

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

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

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

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

Acute Anxiety.

I can’t tell you why I’ve been feeling anxious lately, not really. I could guess a few contributing factors but I don’t know why it feels so bad, or why when I’m led in bed at night things I did 15 years ago pop into my head and I can’t get them out. Or the fact that I can be stood in the post office queue and have to walk out leaving my parcels on the counter because my mind is in flight mode. Or why I wake up at 4am crying. Why I feel like I can’t breathe.

I can tell you that intrusive thoughts (like those in the above pic) are fucking awful I can be there one minute planning my next holiday or working on the laptop and the next – bam ‘why did you do____ (insert all and any life mistakes here.)’

Hormones are also the devil when it comes to anxiety. People often underestimate their power to make you feel off kilter seemingly for no reason. Anxiety can manifest into physical symptoms such as stomach upset, fatigue, tension and or cluster headaches, increased flare ups in other conditions eg in my case fibromyalgia.

I’ve spent this week convincing myself why I should keep putting one foot in front of the other. (With a little help from my friends) I’m not exaggerating when I say somedays I can’t see the wood for the trees, and the urge to disappear is overwhelming. I don’t want to feel like this, but it’s exactly the out of control response that is anxiety’s sole purpose.

Fight or flight, our bodies natural response to intensely stressful situations. Some say they also freeze in these situations. When I’m anxious I find it hard to retain even simple information. I can become irritable as the panic overwhelms me and overly sensitive to noise, smells, touch. A literal sensory overload.

Here I’ve included some things that have helped me this week. They are by no means a cure or substitute for medical advice but they have helped me go from ‘I don’t want to be here anymore’ to ‘let’s get through today one step at a time.’

Fresh air is free and highly underrated. My natural response is always to take to my bed when I feel depressed or anxious. To block the world out and keep myself safe in my sanctuary, but this week I’ve fought that urge, it wasn’t without difficulty and I took some convincing from my friends and mum, but I got outside. And the results were almost instantaneous. The blustery air helped calm me in a way that lying in bed shaking just wasn’t doing.

Phone a friend. This one is always really hard for me because I hate talking on the phone and the idea of speaking to people when I feel like this is all consuming. I worry what they will think of me and I know I’ll cry because crying is my autopilot response, but on Monday I dragged myself and my daughter to my friends house and for a few hours I felt completely relieved of the demons in my head. It was a great distraction. Choose friends you know will understand if you need to offload.

Crying is a completely normal reaction to an anxious situation- let the tears come they release oxytocin and the likely hood is you’ll feel a little better afterwards.

Distraction is a great therapy tool and never underestimate its power. Some people say you need to face the problem head on and I’m sure in certain circumstances that’s true but to get through an acute phase of anxiety I find it particularly helpful. I do a lot of reading so choose the kind of things you read based on how you’re feeling. If you’re anxious a chic lit book maybe more suitable than a psychological thriller.

Finally my last and favourite – Swear!! No I’m not joking. Science somewhere proves that swearing aloud can’t reduce stress levels. So chuck it in the fuck it bucket and call it a prick for good luck. You can read this blog over on House21 also!

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.

Women trouble

I’ve had a hormone imbalance my entire life. From having pubes at eight and boobs at ten, to heavy periods at eleven. It’s not easy! In fact it can be downright damaging. Often in my pre parenting years my periods would be so heavy and painful I would faint, this happened to me once during a routine visit to the hairdressers and the stylist had to drive me home, thankfully before she’d started chopping my mop. It also happened in McDonald’s!

When I was 9 I went to a kids club where they vilified me for having hairy armpits – kids can be so cruel.

I had to stop taking the combined pill at 20 because I’d started getting migraines. Aside from the physical symptoms of these all consuming body changes I also turned into a sociopathic, hysterical mess for 2 weeks out of every month. In fact sometimes I still do, despite being on a progesterone only contraceptive and not often experiencing the monthly bleeding that comes with periods anymore.

I’ve had days off of work because I’ve been physically sick the day my period arrived, or I’ve had a migraine, cramps so bad I’d feel like I needed to push to expel them. Inflated and excruciatingly painful boobs, have kept me awake for hundreds of nights over the years and my mental health has suffered immensely. I get night sweats too, when I first met Shaun he thought I’d pissed the bed when we woke up to sopping wet sheets during our first holiday together.

There is absolutely nothing glamorous about our cyclical visitor. The chronic fatigue I experience when I’m due on can sometimes leave me in bed for days, never quite managing to sleep enough to shake it off. Then there’s the palpitations and anxiety that will often overwhelm me completely out of the blue, until I check my calendar and realise it might be the time of the month that these little bastard hormones rear their ugly heads. When I got diagnosed with Fibromyalgia the link to hormones was glaringly obvious for me, but my doctor seemed uninterested as they seem every time I mention that my hormones sometimes make me feel like I want to walk in front of a train or punch a stranger in the face.

Let’s not even go there with pregnancy and post partum hormones. Most of you mums will understand how mentally crippling they can be – times that by the fact mine are already tipping the scales and we’re in deep water. I hated mostly everything about carrying my daughter and hormones were to blame for that. Even the SPD I suffered was caused by a hormone.

But I’m not alone. Most of us are so used to accepting that we have shit periods and also that there’s nothing, or very little we can do about it. It’s part and parcel of being the fairer sex. It’s natures way. Suck it up princess, all women get them. That maybe true but not all women get bad ones. I used to find myself secretly hating women who had easy periods. And let’s not forget how men use it as a quip every time they piss us off ‘time of the month is it?’ Jokes that are infuriatingly unfunny. I seem to be no further forward twenty years in, and what are my options? Hysterectomy apparently, but not only is that extreme it comes with its own set of problems.

Whilst writing this and feeling sorry for myself because it’s that time right now, I got to thinking about women in third world countries who really do have it so much worse. They don’t even have the most nominal pain relief. Nor are they saved the embarrassment by Always Ultra when their period starts running down their legs. Not forgetting they don’t even have contraceptives in most of these poverty stricken places. It really is a problem despite the world telling us to get over it.

I’m all for learning alternatives to alleviating hormone imbalances and period problems. I just wish I could provide you with some winning tips, as it’s seems I’m all out of positivity when it comes to uterine shedding. But if you have any of your own tips and tricks for managing your monthly visitor get in touch! I’d be more than happy to test them out!

www.ourremedy.co.uk