Confessions of a chronically ill mum #19

Hi. It’s been longer than my usual long while since I posted COACIM. In fact, I haven’t been writing anything much and definitely nothing so personal. I’ve had neither the inclination or the ability, and I’ve barely been keeping up with my medication not least my mothering responsibilities. It’s all felt like such a lot lately.

Not sure if I mentioned here before, but back in March I saw a consultant about my cholesterol. It was ridiculously high, putting me at serious risk for heart and cardiovascular diseases. I resisted starting medication because I’d not long commenced HRT. I’m already quite heavily medicated for my anxiety, fibromyalgia and migraine, and statins have a bit of a bad rep for side effects. Anyway, last month the consultant called me and said I had no good cholesterol in my body and without medication ‘it’s not a case of if you’ll have a heart attack or stroke it’s a case of when’ adding firmly at the end ‘you’re a ticking time bomb.

This conversation took its toll on me mentally, as you might imagine it would. Especially because since the appointment in March I’d been working really hard on looking after my health and essentially this consultant was telling me it wasn’t good enough. I felt at this point as though I had little choice, so I ignored my reservations and started the statins.

Long story short, so far the side effects are indeed awful and I have been really unwell. The worst flare up in my fibromyalgia symptoms I’ve seen for some time. I have been wading through treacle each day, or at least that’s how it’s felt with the level of fatigue I’m suffering. Brain fog and my memory, which had worsened significantly since starting HRT anyway, is now shot to bits. I’ve always prided myself on having a good memory and taking in information but for the last two weeks I have barely remembered what day it is, and that’s not an exaggeration. I’ve led in bed on days I’m supposed to work and been confused at why my alarm is going off and Kaiser’s dressed for the childminder. I’ve not been able to write because I can’t remember what it is I’m trying to say. It sucks, and this post itself has taken me a week to finish.

As you may know fibromyalgia causes widespread pain and profound fatigue. Since starting statins this has worsened and I have severe muscle pain, while also feeling as though I have the flu, all the time. I’m napping during the day when Kaiser naps and having to throw water on my face to stay awake during a work meeting. I can’t lift my son because my body feels too weak.

Parenting is kicking my proverbial. Day and night, night and day. Even after having a break last weekend to sleep and recharge whilst the kids were with my mother in law – it doesn’t feel like enough. I need a break after 10 hours. Shaun and I are drifting with no real idea where the fuck we’re going because we’re too exhausted to hold a conversation. He is knackered from picking up all the slack and it’s pretty shit because I don’t know what my alternatives to these tablets are. The consultant made it sound as though their wasn’t one. Kaiser has started walking and yes…he’s a total babe, but he’s also hands down the most exhausting human I’ve ever come across. I find being his mum a privilege and sometimes, like now when I’m not feeling my best and being brutally honest… a chore.

I have a feeling Ciara might be going through some developmental changes, because her emotions are all over the place and it can be hard work trying to prize out of her what’s going on. She is a tiny perfectionist whom hates doing badly at anything and it’s become more pronounced this term. I don’t know why or how this has become such a big deal to her because we rarely ever tell her off and absolutely never for getting something wrong or making a mistake. It’s gut wrenching to see your child grapple with their emotions. She also has the hearing of an elephant and questions everything you say, remembers it, then recites it back to you… so there’s no hiding in this house and sometimes let’s be honest, mums want to hide (well I do anyway)

Finally, I wanted to add that I’ve been feeling quite sentimental and at times, extremely lonely. Your world can become horribly small when you’re unwell and people do drift. I’m not blaming those people because I know it’s nobodies fault – when someone (me) is constantly cancelling plans and letting people down, often last minute, you lose your place as first on the list as an invitee…. I just think Covid and everything else that’s going on in the world right now has highlighted to me how insular I’ve become. It’s a bit of a dichotomy for me to be honest, because part of me loves being in a familial bubble and not having to explain myself to people or show up for small talk, but the other part of me is in need of genuine social and human connection. What I do know is I don’t really have a lot to say about much other than my health and the kids, and I’d like that to change soon, adding a bit of me back into the bargain.

Overall, and in spite of what you’ve just read, I’m happy. I’m trying and sometimes even succeeding to not letting myself be sucked down into my usual negative cycle of mum guilt and self loathing. And I feel immense gratitude to be embarking on new journeys and to have had some really amazing and exciting opportunities come up for me recently. I will elaborate at some point but ultimately what I’m trying to say is, I don’t want this post to be all doom and gloom, because my life isn’t all bad in fact it’s mostly good but it’s still hard to live with poor health when parenting small and impressionable children.

I do also have a HRT update for you but for now I can’t even begin to concentrate enough to fill you in on that, too. It’ll come soon if I can manage it! 💙

Confessions Of A Chronically Ill Mum #18

It’s been a while since I’ve written an insert of COACIM. I’ve been busy, trying to keep PMDD under control alongside parenting a riot of a toddler, a somewhat sulky six year old…. Summer holidays and work. So I guess you could say I’ve been ‘doing life.’ For the most part doing life has been good, the summer has been busy and full of adventure. The downside being, I’m still not (and never will be) able to do everything I want to do because of my health, both physical and mental. The limitations it has on my overall well-being might have lessened somewhat but is still profound. However, I’m so grateful, now more than ever for all of the things I can do!!

Since starting HRT I’ve noticed an increase in energy and my ability to move more freely. My joint functionality and all over flare up time is less than it was before commencing hormone replacement. PMDD episodes are shorter too (though not necessarily less intense) I won’t go into too much detail about that now, because there’ll be a separate HRT update shortly. For now, there’s so much else I want to say.

Emotionally, I’m riding the waves while trying to savour every moment we get to enjoy as a family.

My confession this week, is that I’ve realised, in recent months since adding in a few evening plans, just how much I miss dancing. I’ve had two occasions where I’ve been out and there’s been music. The first one was with Shaun, we went to Cardiff to watch The Libertines. They are one of our mutual music loves and it was a long anticipated gig. Thankfully the venue sorted us out with accessible seating and this was in an area with enough room to dance if you wanted to. Though I soon realised, I can’t. I can no longer move freely without pain. Even the ‘dancing’ I can manage, such as waving my arms in the air, causes me pain. While I may be able to walk a little further than I could before (and this is great) I still cannot remain standing for more than a few minutes, and sadly, I definitely can’t dance, at all really! When I realised this I became quite upset. Because let’s be real there’s nothing quite like being able to dance it out. (Fans of Greys anatomy will appreciate the reference) Like I said, I am trying to focus on what I can do as opposed to what I can’t, but it still irks and hurts and leaves an adverse feeling in the pit of my stomach.

The second music shindig I attended was Meatloaf inspired musical Bat Out Of Hell. The show was phenomenal, but again I couldn’t move much. As with standing, I find being seated for long periods really uncomfortable too. Driving is agony and I’m only really comfortable when I’m slowly walking or led down. This can put a real spanner in the social life of a music lover. Yesterday I spent hours nostalgically reminiscent of the bank holiday weekends I’d spend at all day music concerts and outdoor day festivals. Some of this nostalgia was not just mobility related though. I’ve been struggling with the kids in general over the last few days. As the end of my cycle closes in the misophonia creeps out and my tolerance levels reduce to almost zero. I’m snappy and so fatigued I can barely keep my eyes open. Meanwhile, both of my children are charging around like bulls in proverbial china shops, shouting at the top of their small-but-mighty lungs!

Parenting is hard. You don’t need a blog post to tell you that. What I will tell you is that it feels twice as hard when you’re operating on no sleep, struggling to move, and your brain is prisoner to the fluctuations of your own bodily hormones. I don’t want to muddy the waters because we really have had a lush summer. We’ve crammed in a lot and near crippled ourselves financially (and that was on a tight budget) but there are so many memories from this time we’ll keep. No matter how nice it’s been though, I know I’m not the only mum who can’t wait for routine and early nights to resume.

Another confession is that I’ve been feeling uneasy about using my disabled badge and sunflower lanyard. When attending The Libertines gig I had access to the disabled toilets so that I didn’t need to queue in long wait times for the loo. This was necessary because as mentioned - standing for long periods causes me a lot of pain! Despite the necessity I still felt as though I was being judged. Groups of men kept trying to get into the disabled toilets after me and even said the dreaded words ‘There’s nothing wrong with you’ to my face. It’s a confrontation that I just don’t want to be having whilst I’m more than capable of telling them to fuck off and stating my rights as a disabled person, I don’t want to. I instead want to be able to enjoy my night out with ease and not fear the need to defend myself against other people’s ignorance. 

Please remember that not all disabilities are visible. Not everyone whom is disabled will appear to be, and with risk of sounding really glum here, it could be you one day. None of us are immune to ill health and injury. You don’t even have to be kind if it really pains you to do so, you just have to mind your own business.

Ask Me About PMDD

Earlier this week I shared the below image to my Instagram stories and gave you the opportunity to ask me any questions you might have about PMDD.

Image used with permission from IAPMD

Having suffered with this illness for more than 20 years I feel I am equipped to answer questions relating to the condition and as a result of my own experience. However, it’s important to note I am not a medical professional and all answers are my own words, with no association to any organisations that are linked in this article. Relevant links are included so that you are able to corroborate mentioned treatment options and use diagnostic tools.

How did you obtain diagnosis?

This question came up several times, with many of you saying you had tried and failed to have PMDD accurately represented when speaking to GP’s and medical staff. In my experience from discussing PMDD within the online community I have come across similar tales and it’s one that follows a similar trajectory to that of my own experience. I first suffered from mental illness at aged 13, suicidal ideation, attempts and thoughts occurred, followed by bouts of extreme rage, panic attacks and enduring anxiety. It wasn’t until some years later I had made the connection between my feelings and my menstrual cycle. I remember seeing a GP aged around 19 when I said I believed I was suffering from a hormonal imbalance. I didn’t know at this stage that PMDD is a reaction to normal hormone fluctuations, an imbalance was my assumed interpretation. She told me all women suffered ‘some PMS symptoms’ and that there was no diagnostic blood tests that would give insight into my mental health and it’s correlation with my cycle. Since then I have seen the GP and several gynaecologists in excess of 100 times for the same problem. When I finally began to be taken seriously around age 23, my GP still referred to my condition as severe PMS. Last year aged 33, I became so unwell during pregnancy and after the birth of my son that I was hospitalised and it was only then, under psychiatric care that a psychiatrist referred to my illness as Premenstrual Dysphoric Disorder. More recently this year when seeking further intervention privately, the Gynaecologist (whom is also head of his department in an NHS hospital) again confirmed a PMDD diagnosis.

Diagnosis is a huge relief, it allows us to stop gaslighting ourselves into believing we are raging hypochondriacs. BUT clinical diagnosis is not necessary for treatment of the condition. Your GP can advise, and treat PMDD symptoms even whilst still referring to it as PMS. If these early treatments such as lifestyle changes, hormonal birth control and SSRI’s work for you, you may never need a formal PMDD diagnosis. That’s not to say you won’t want one for your own clarity. If this is important to you, I suggest keeping on at your GP for specialist referral. If you are struggling to get a diagnosis and believe you have PMDD please head over to IAPMD for help and information on diagnostic criteria and talking to your doctor. They have an array of tools to help you cycle track and a glossary of terms that will help you explain exactly how your condition affects you see: Iapmd toolkit.

You also have fibromyalgia, do symptoms of both conditions overlap?

In short, yes. In detail, a higher percentage of fibromyalgia sufferers are women. A symptom of the condition in women can include painful and heavy periods dysmenorrhea. It’s also known that many persons living with fibromyalgia will suffer mental health problems, so it’s my opinion and personal experience that it’s fair to say symptoms overlap. PMDD can trigger a flare up in fibromyalgia pain, more prominent and prolonged fatigue, as well as sensory overload, brain fog and migraine attacks. The key difference between the two is that PMDD only occurs during the luteal phase of the menstrual cycle, which occurs between ovulation and menstruation. Instead, fibromyalgia symptoms can and do occur at any time during the menstrual cycle. I am often alerted to the arrival of PMDD by waves of crippling anxiety and intrusive thoughts that disappear when my period arrives. However some physical symptoms that might be triggered by PMDD end up lasting long after it’s end and will alert me to a Fibro flare up. Also with my experience of fibromyalgia, pain doesn’t ever disappear entirely. I always have some form of baseline pain. Many people also report joint pain with PMDD along with migraine attacks, these are present premenstrually as a result of PMDD and can occur and worsen at any time with fibromyalgia.

Can PMDD come on at any time in life?

Yes, it absolutely can. Some people find their PMDD starts or worsens with a reproductive event, such as menarche (which is when mine started) after pregnancy/birth or miscarriage (when mine worsened) or with the onset of perimenopause. For some it will seemingly come from nowhere. It is believed that PMDD can also be linked to genetics, childhood trauma and depression.

Is PMDD a disability?

Here in the UK, you are covered under the Equalities Act and therefore thought to have a disability if you have an impairment that is either, physical or mental and the impairment has a substantial, adverse and long term effect on your normal daily activities. Depending on the severity of your symptoms you could be covered under the act with a PMDD diagnosis. When explaining PMDD to my employer I advised how it affects me, for example: I suffer menstrual migraine attacks that leave me bed bound for days, along side extreme fatigue and joint pain. As well as this I also suffering debilitating anxiety, intrusive and suicidal thoughts and panic attacks, which make carrying out daily activities impossible. Cognitive impairment such as brain fog and an exacerbation of any underlying symptoms are also worsened with the onset of PMDD. The fact these symptoms occur every month, and last for 2 weeks makes this a long term condition with substantial impact on my life and ability to function.

Why do doctors prescribe SSRI’s for PMDD if it’s hormonal?

After diet and lifestyle changes SSRI’s are a treatment option to help manage the mood and anxiety symptoms that are present with PMDD. Whilst you may feel you aren’t depressed, some women (myself included) have found benefit in taking SSRI’s, both month round and only or double dosing during the luteal phase of your menstrual cycle.

Are palpitations a symptom of PMDD?

PMDD has many, varying symptoms. They range from severe mood alterations, to debilitating physical symptoms. I personally do experience palpitations during both ovulation and the luteal phase. I’m also extra sensitive to stimulants such as alcohol, sugar and caffeine during this time. All of which make palpitations worse and more noticeable. If palpitations are persistent it’s always best to get them checked out to rule out other possible causes, though I know many people experience them alongside profound anxiety, so if this is one of your PMDD symptoms it could also be exacerbating your palpitations.

Summary

  • PMDD is a chronic and debilitating condition with a range of symptoms that vary in severity.
  • There are a range of treatments used to treat PMDD and their effectiveness is very individual.
  • PMDD can and does exacerbate underlying conditions, this is sometimes referred to as PME (premenstrual exacerbation)
  • PMDD can occur at any time during a person’s menstruating life.

I hope this information is helpful. For more detailed and expert advice head to IAPMD where you’ll find everything you need to learn more about PMDD.

HRT to treat PMDD – Week 5

This week if I had to use 3 words to sum up my HRT experience I’d use: BLOODY, ENTHUSIASTIC and BRAVE.

Bloody

I’m still bleeding two weeks after the last time I told you I was bleeding. Which isn’t ideal. It’s not spotting either, it’s a couple of pad changes a day. The main cause for concern here is I can’t really tell what is or was my menstrual period and so I don’t know my cycle as I normally would and therefore struggle to determine how my symptoms relate to which phase. However, for now, I’ll take the blood. I don’t want to put up with it forever, of course that would become troublesome, but so far the blood I’m losing is a minor problem and is being outweighed by positive changes and more calm.

I’m also unsure whether this bleeding is related to the oestrogen gel, or the progesterone in the mirena coil as both report similar effects. It still needs noting though, because it is a troublesome symptom if it continues long term, and I don’t want to have to add an additional progestin treat it.

Enthusiastic

I chose this word because for the most part it’s how I’ve felt in the last two weeks. Potentially this suggests it’s when I’d usually be in the follicular phase, or that HRT is doing the job it was prescribed for. The trouble with me is, I am a pessimist, after decades of cyclical hell I’m almost programmed to think it can’t be working. However if I’m being honest, with both you, and myself, I have felt better, less anxious and more able to cope. It’s summer holidays -I mean if there was ever a time that was going to tip me over the edge this would be it! But I’ve managed to get out with both kids, I’ve caught up with friends (just having the energy and enthusiasm for this, is hugely positive) In the last few days I’ve suffered migraine attacks and felt fatigue and muscle pain (which I think is related more to Fibro than PMDD) and still my mood hasn’t plummeted. Moreover I’ve not been plagued with those awful intrusive thoughts. All of this, for me, is quite something!

Brave

I chose this word because I have done things I’d usually panic doing, like driving places I don’t know, on my own, and trying to get my steps up, increasing my movement. I’ve still had anxiety around doing these things, it doesn’t just disappear, but it’s anxiety in relation to normal life stuff as opposed to being crippling, as is normal during PMDD.

Gynae Appointment

I saw the gynaecologist to discuss my treatment plan and review my use of HRT. He got full marks as soon as I entered, when he thanked me for my email. I was relieved to hear that he had taken the time to read it, it was long! I explained all of my symptoms to him over the past two decades. He asked me how I cope during PMDD and I explained to him that for the most part, I don’t. Some would argue this, but I am forever calling on my mum and husband to come and help with the kids or indeed in a panic that they then have to talk me out of. I told him I’ve been in crisis so many times premenstrually that I almost feel it’s normal. That I swing from feeling like ‘I’m going mad’ to being able to cope. He fully supports a PMDD diagnosis. To be honest just hearing those words as opposed to the ‘severe PMS’ my GP always uses was such a relief that I ended up leaving in tears.

What was even more positive for me was the options he presented me with. Just finally feeling as though I have some was effectual in calming my racing mind! I’ve always known the treatment pathway, I’ve just never been able to get a doctor to consider me for the next stage before now!

We concluded that I will remain on the HRT for another few months unless I do not see any continuity with the improvement, or I experience a relapse. The next phase is chemical menopause which is induced by injection of GNRH analogues. As it’s an open referral to a private hospital, it’s left open so I can call him any time and book the next available appointment for the GNRHA shot. If I go down this route I will leave the mirena in situ and continue to use Oestrogel. I would then trial the medication for 6 months before deciding whether or not to have surgery to remove both of my ovaries and Fallopian tubes (Bilateral Salpingo Oophrectomy)

No major surprises at this appointment I knew what was to come next, I just thought I’d have to fight harder for it. Relieved to say I didn’t. The consultant explained that to obtain the injections for chemical menopause, I would need to have the first one in secondary care (Private treatment centre) and then I could be referred back to primary care to receive the injections on the NHS. This was really reassuring considering my mum paid for my appointment and I have £14 in my current account, so there’s no way I can afford private healthcare in the longterm. That said it was still worth every penny to us as a family, to enable me to have these discussions with a knowledgeable doctor whom is experienced in Premenstrual Disorders. I feel like there’s hope, and options and both of these were in short supply before my appointment.

I plan to write another blog really soon to answer questions relating to PMDD, but please remember IAPMD are the oracle when it comes to premenstrual disorders, so head on over there if you need advice, questions answered, or resources to support you.

HRT to treat PMDD – Week 3

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

Insomnia

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

Anxiety

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

A few other notable side effects have been:

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

Hope

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

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

Positive changes

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

Confessions of a chronically ill mum #17

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

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

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

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

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

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

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

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

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

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

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 #15

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

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

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

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

Platty Joobs Stuff

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

PLATTY JOOBS
WOODLAND WARRIORS

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

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 #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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