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

Confessions of a chronically ill mum #7

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

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

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

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

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

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

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

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Confessions of a chronically ill mum #5

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

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

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

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

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

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

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

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

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

Subtle break-throughs

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

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

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

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

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

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

Worrying about tomorrow, steals today’s joy.

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

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

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

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

How did I get here?

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

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

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

104 days postpartum

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

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

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

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

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

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

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

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

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

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

54 Days postpartum

23.08.21

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

PMDD and pregnancy

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

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

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

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

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

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

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

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

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

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

Here we go again, sertraline.

When I recorded last months #PMDD diary I mentioned I’d started taking antidepressants again, but only during the luteal phase of my cycle. Unfortunately my symptoms have not improved greatly in the months since I decided I didn’t want to be here anymore (again).

When I say not improved, what I mean is not enough for me to do this on my own. So here I am again, where I’ve been for almost 20 years, trying to get a grip on my mental health with the help of antidepressants full time.

I am still here, so I’d be lying if I discredited their power in helping me get through dark days, but when you live on a cocktail of drugs for survival, it can make you feel like you’re never really moving forward, just treading water.

Antidepressants for breakfast, painkillers for lunch, more antidepressants for nerve pain at tea time, a side of beta blockers, followed by occasional benzos for supper.

I often feel like I’m failing by being so dependent on medication, but I weigh it up with my need to be able to function.

I’ve made many positive changes over the years for my mental health.

I very rarely drink alcohol anymore and have drank only 3 times in all of 2020. Though I feel no better for it really, I’ve not missed hangovers, and truthfully, I’m scared of it now.

I’m scared of doing ANYTHING that might trigger a migraine, a flare up, PEM. I’m scared of walking too far, or dancing too hard, or staying still too long. I’m scared of things I used to enjoy, and not enjoying, is depressing. I know I feel better if I don’t over plan, if I have a day in between activities and I know I feel better if I get enough sleep, but trying to implement that into a modern world where we have to work, and parent and show up for shit, is hard.

When I think about how hard it is I also try to think about how lucky I am.

Because if I don’t think about the good things I will be forced to believe there are no good things, and that is simply not true.

So how do I remind myself of everything that’s great when all I can see is what’s not? I look at my family. That’s it, I see them and I am reminded of my luck 💗 Though I don’t imagine they feel the same about being stuck with this bitch 🤣 This is your Tuesday night reminder, to TAKE YOUR MEDS💊

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