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 13 – I’m back

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

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

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

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

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

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

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

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

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

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

Maternal Mental Health Awareness Week.

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

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

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

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

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

Other types of maternal mental illness include

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

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

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

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

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

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

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

12.10am 02.07.21

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

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

News

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

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

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

Please click here to vote. 🗳 🗳 🗳

It’s time…..

Confessions of a chronically ill mum #10

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

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

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

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

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

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

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

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

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

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

Confessions of a chronically ill mum. #4

It’s all been going on! Since last week’s news about my health, I’ve been determined to go full steam ahead with the diet change. For us, living on takeaways we can’t afford and binging on food instead of our pre kid vices like booze and fags, has been the norm for so, so long. Shaun set us a goal of no takeaways in February and I know we’re only 2 weeks in but for a couple who ate pizza and mail order brownies several times a week, we’re smashing it. I’ve signed up to do a diabetes prevention course which I’m keen, but also stressed about getting started on. Keen because I want to make the best changes possible, but stressed because it’s another thing to try and squeeze in to my ever full appointments calendar.

Kids

Kaiser has started crawling! At seven months old, Ciara was crawling at six months plus two weeks, so this didn’t come as a huge surprise. But how annoying are kids that move so soon?

Confession - This week Kaiser had to see a paediatrician. I won’t go into detail here but, we need to get a urine sample from him. Note I say need and not needed because after two hours of trying to catch his piss in a plastic tub, inside a waiting room on the children’s ward, I gave up. I also, and shoot me for being a terrible mother, wished they would just do a bastard heel prick blood test and let him scream! After failing in my attempts and wrestling him into a position that wasn’t comfortable for either of us, I left the appointment sweating profusely in unbearable pain and doing a lot of cussing. Nobody wants to see their baby in pain, but dear god I would of preferred the blood spot over that pantomime. Worse still I am going to have to endure the debacle all over again in my second attempt. Have googled whether it’s ok to wring out a nappy, but have been sadly informed it is not! Fucking Kids!! To top that, Ciara had an appointment at Bristol Eye Hospital and fainted! My second confession is that I was glad it was Shaun that was with her and not me. I know that sounds awful but I also know I would have panicked so badly I wouldn’t of been able to cope. Or maybe I would, maybe I’d have dealt with it on autopilot. Right now though, I’m just glad she’s safe and seems to be otherwise fine. She’s so desperate to go to school tomorrow for her non uniform day in aid of Childrens Mental Health Week that I’m letting her sleep with me tonight so I can monitor how she’s doing. 

Hormones

I’ve been struggling immensely with TMD and went to the dentist on Monday only for them to shave off half of one of my wisdom teeth and then tell me that probably won’t work. PSA, it didn’t! Unfortunately, hormones (those bastards) really flare up all of my pain and it’s not unusual for me to experience horrific TMD during ovulation and through luteal.

Speaking of hormones, I’ve been taking progesterone for around 4 months now, and whilst I am seeing some relief from the mental health symptoms, physically things are no better. In fact I may even go as far as to say they are a little worse. It’s hard because I have to weigh up what is worse, and realistically I know it’s the crippling anxiety and thoughts of suicide, along with inexplicable rage. But knowing this still doesn’t make the physical symptoms any easier to manage.

Breakthroughs

What I will say though, is that I am managing the mental symptoms I am experiencing, much, much better. And I think I have therapy to thank for that. It’s a slow burn, therapy! It makes you feel vulnerable with each session, but the more vulnerable you can allow yourself to be, the less that vulnerability is able to take hold. Then suddenly, seven months later, you realise you are doing better! You don’t always feel it, but you know it’s true. The feeling of drowning in quicksand every time you have a bad day gets less, and it starts to feel more as though you’ve just been inconveniently splashed by a car driving through a muddy puddle.

I’m not saying I’m cured, or that I will never have episodes of dread and impending doom again. But I feel right now, that if I do experience that again, I have more tools in my arsenal to help me fight it. I’ve another eight weeks of group therapy to get through before I can be discharged from the perinatal service. Discharge looms, like a black cloud really, because I’ve been helped in so many amazing ways by the team that I’d like to be able to talk to them about my trauma forever. At some point in the not so distant future, I’m going to have to hold my own hand.

Confessions of a chronically ill mum.

I stood on my mum’s drive yesterday morning, trying to make plans to go for a walk together like we had earlier in the week. As I walked away from her with a ‘provisional’ plan for the following week, I felt sadness, embarrassment and shame. My mum is my best friend. I needn’t feel any of these things in her presence, but the truth is, I feel it in everyone’s presence. Since the beginning of December my physical health has been increasingly hard to manage. I have spent days in bed. My husband has had to take days off from work, and my daughter has said the words ‘when you feel better, mummy’ on repeat. I missed a visit to Santa with her, and I didn’t get to spend Boxing Day with family as was planned. Then on top of that, we all, everyone in our house, caught covid.

I’ve cried in pain holding my son and I’ve listened to his cries when I’ve been physically unable to hold him any longer.

I’ve also had good days. I had friends round and we toasted marshmallows in the garden. I sat through a pantomime with my son on my lap and my daughter by my side. I spent a night in a hotel with my husband. Following those days though, I suffered immensely for the privilege. That’s when life can be really sucky, when your body (and mind) punishes you, just for living. In the last two years I’ve abstained from alcohol. I’ve had one night out since August 2020. I’ve tried to eat better and I’ve tried to get enough sleep (not an easy feat with a baby.)

And I can say with honesty and confidence that I have done my best to partake in activities with my family. I have done my best to limit my symptoms. I’ve done an incredible amount of work on my mental health and I’ve worked through a lot of what was previously, unresolved trauma. I’ve fucking tried. But the thing with your health is, you can do everything right and still be unwell. You can do everything in your power to manage your illnesses and still suffer flare ups. You can get eight hours sleep and still be bone weary fatigued as though someone has poured cement into your bones.

I’m writing this because it’s true. Not for sympathy, though I’ll be honest, more empathy is always welcome. I don’t gain anything from sharing my illness and it’s trials. It doesn’t serve me personally, but occasionally I’m told it helps other people. I’ve said before, but sympathy is in short supply when people realise your condition is long term but not life threatening. Not life threatening no, but it IS life limiting in some way, every single day.

I feel often as if managing my health is a full time job. Being a parent is a full time job. I have no time for my actual job, and no energy left for anything fun. For six months I have had medical appointments every week, often twice a week. I’ve been unable to walk, and then I’ve been able to walk, followed by days unable again.

I often write about holding onto the good days and I stand by that, but it does get tiresome when you feel like you’re always being punished for them. I’m not even talking always good days, sometimes it’s good hours followed by a migraine, or a surge of otherworldly fatigue so achingly exhausting that there’s nothing left to do but take to your bed. The trouble with taking to your bed when you have kids is, you rarely get the opportunity to do such a thing, and secondly, but probably more notably, you miss things.

My confession is, sometimes I find the responsibility of my illness on top of the responsibility of my kids so overwhelming I pray for oblivion. Sometimes I find time with my kids assaulting to my senses. And sometimes I feel so guilty for their plight having me as their mother that I wonder if they are better off without me. 

Thankfully, and going back to all of the ‘work’ I’ve done on my mental health this past year, I know this isn’t true. I know they love me including my flaws, health problems and weaknesses, not in spite of.

I guess the narrative for this blog was to get these feelings off my chest, and also remind myself that (and I’m sure I’ve used this quote before) but….

Bad days do not equal a bad life

It’s hard being a mum regardless of health, wealth or any of the other things that make life easier. Perinatal depression and anxiety do not discriminate, chronic illness, illnesses of any kind actually, do not discriminate. The world is a tough place to parent, and knowing this doesn’t make it easier, but it does remind me I’m not alone.

Sending love to anyone else feeling like they’re on their knees. Know this, better days are always coming.

All I want for Christmas, is you.

What a year. I can’t believe that just six months ago I felt as though my world had imploded without any real warning. I woke up one day and didn’t feel like me anymore. I was afraid for my sanity, for my mobility, for my family and our future.
I couldn’t see past six hours without having a panic attack let alone six months.
I led in my bed, day in day out for 7 months, unable to walk.
As my son’s due date approached my mental health declined.
I felt consumed by all consuming, claustrophobic, fear. Wracked with perinatal anxiety.
I was broken.
I guess that’s why they call it a breakdown.
But here we are now, a family of four, surviving interminable routine and carnage, poor health and therapy, work and parenthood simultaneously.
Loving each other through it all.
It’s not been easy, it’s been hard getting here, ridiculously fucking hard in fact, but it has paid dividends to keep going.

I’ve got everything I need this Christmas. Genuinely. I feel so content with my family. When I say this I mean content as in they are enough, not content as in getting loads of sleep or life being perfect, unfortunately! Ha! I know how blessed I am, I’ve always known it, but I really feel it this year. After everything we’ve been through I have a desire to keep them close and let them know how much I love them. The only thing I want for the big day is more of that contentment (as well as good health & freedom for all, world peace too, but I’ll refrain from getting too ambitious.)

I am not the same old me I was last Christmas. Granted, I’m still a stressy, messy, bitch with a foul mouth who is always exhausted…. but I am also different. I’m softer round the edges. More vulnerable I guess, if that’s possible, but stronger too. I believe that what doesn’t kill us can leave us with a lot of unhealthy coping mechanisms, and I by no means, have ditched all mine. I haven’t turned into a preacher or someone who promotes their new lifestyle as some big epiphany, desperate for people to follow. But I am interested in change, in finding fun and contentment in new places. That makes me further away from those unhealthy coping mechanisms than I once was and I’m proud of that. I suppose what I’m trying to say is, I’m more open to learning better ways to survive and enjoy the mundane in the everyday.

I’m less inclined to sweat the small stuff whilst simultaneously being more interested in the big stuff.
My tolerance for a lot of things is greater, but less for small talk. I’ve always struggled with chatting aimlessly about the weather and the like, I’m too nosy, too inquisitive, I want to meet people and know them, not skirt around edges with hollow pleasantries. Similarly I’d rather be quizzed on my life than have it glossed over, skipped or ignored. I’m over hanging on to dead end relationships and chasing things that don’t bring me joy. Whether that be friendships that are more effort than fulfilment, or doing things I don’t enjoy anymore, for example forcing myself to be somewhere I don’t want to be. This year I have no desire for big boozy nights feigning Christmas cheer. I mean obviously the pandemic has some impact on those kinda outings, but I honestly think even without the plague, I’d still just want to be snuggled up close with my nearest and dearest.

Transitioning from one child to two has been a lot. I’m already anxious about how I’m going to cope with a baby that hates sleep whilst I’m trying to eat my turkey dinner. However, I’m ok with those kind of anxieties, they’re normal, they make me feel normal, whatever ‘normal’ is.
The biggest change of all for us this year is of course the fact we have an extra person round the tree to love. And love him we do. ❤️🎄

Intrusive thoughts during the perinatal period

Some people when they hear the words intrusive thoughts automatically assume that the person experiencing said thoughts is hearing voices. Some people think OCD and others believe intrusive thoughts to be a sign that a person is bad, and will act on their thoughts.

With the exception of possible OCD, none of the above tend to be true.

So what are intrusive thoughts?

Intrusive thoughts are unwanted and or distressing thoughts that are often reoccurring. They are likely to leave the thinker very upset, distressed, disgusted, confused and ashamed.

It is thought that 1 in 5 women and mothers will suffer perinatal mood and anxiety disorders, and 57% of those will have experienced intrusive thoughts. Mental health professionals are not entirely sure why more women in the perinatal period experience intrusive thoughts, but it’s believed to be related to a variety of hormonal, environmental, and emotional factors. That said it’s a common symptom of PMADS. Typically, the thoughts that occur in the PP (perinatal period) are fears that surround our children, ‘What if I harm the baby?’ But the thoughts don’t always stop at physical harm and can relate to sexual fears too.

To be clear before you read on, suffering from intrusive thoughts is NOT a reflection on a person’s character, desires or beliefs. The thoughts themselves go against all of our beliefs and natural instincts as mothers and do not align with our values, hence the very word for them being ‘intrusive.’ We don’t want these thoughts, we can’t bear them and it’s the very reason we are left feeling as though they are ruining our life.

During pregnancy with my second child I became overwhelmed with intrusive thoughts, some of them too weird and harrowing for me to share —though in some ways I wish I felt I could share them all, then maybe they wouldn’t consume my brain— It got so bad that at just shy of 38 weeks I was hospitalised, under psychiatric care, my labour was induced and I was medicated for my mental health.

After my son was born and I was again assessed by a psychiatrist, she told me thoughts that are harmful or as mentioned sexual in nature, are the most common type of intrusive thoughts during the perinatal period. I asked her why this was, and she gave me a fantastic analogy.

You have this tiny human to care for. It’s your most important job, above any other. The thoughts that you are having are in direct conflict with your own anxieties about what could happen to your child. The thoughts are the very things you want less than anything in the world to happen.

But how do you know I’m not just a psychopath? I asked.

‘Because psychopaths don’t phone me up hysterical about upsetting thoughts, Steph. That’s how I know you pose absolutely no risk to your children.’

At this stage I felt so out of my mind I didn’t know if I posed a risk to my children. I felt like I couldn’t think straight. But Dr Pysch was adamant about this, and though it didn’t ease the thoughts initially it helped me to understand I wasn’t alone and other women and new mothers went through this too. She then went on to say (I feel like this is a big one…) the only person you pose a risk to, is yourself with your judgement about the thoughts.

I found that particular line about judgement really interesting because I realised quite quickly that it WAS the judgement that was keeping me in a cycle of constant fight or flight.

I was overthinking every single thought and if I dared speak out about my thoughts, rather than feel better, I’d worry about other people’s judgement instead. That was until I met the most wonderful community psychiatric nurse. For the purpose of this blog I’m going to refer to him as Neo (He will appreciate the reference.) Neo has changed the way I think about intrusive thoughts, but more importantly the way I feel toward opening up about them.

Maternal OCD is a mental illness that affects women in the perinatal period and includes intrusive and obsessive thoughts followed by compulsions completed in order to relieve some of the discomfort from the thought.

Ironically for me, my most intrusive thoughts were about convincing myself I had, or was going to develop severe mental illness (the irony isn’t lost on me) I first believed I was developing psychosis, I was sure I would start to hear voices telling me to kill or harm my children. This made me feel disassociated often. Despite not actually hearing voices I was convinced they were coming and I would be sat in my bedroom listening for them. I later googled intrusive thoughts which convinced me I was suffering from severe OCD, despite not having any compulsions. Another common thought for me was passive suicidality, such as thinking I could just walk out in front of a lorry. Or consume all of the insulin in my possession.

When I discussed this with Neo my fear of OCD he went through a protocol of having me fill out an OCD assessment, and we discovered that yes I have obsessive and at times disturbing thoughts, but I don’t have the compulsions in the same way a person with Obsessive Compulsive Disorder might. So why did I feel as though talking about my fears meant I was constantly reassurance seeking?

The truth was there may have been an element to seeking reassurance, but for the most part I was doing what I needed to do, engaging in therapy and discussing my fears.

Once I finally opened up and said aloud that one of my biggest fears was I didn’t want to be alone with my baby because I was terrified I would have a psychotic break and murder him whilst he slept, I was not only able to then unpack this thought and see it with clarity for what it was, just a thought. But I also learned that I’m not alone, not even a little bit.

The mind plays tricks on all of us occasionally and thoughts are the perfect segue into us believing we are not good people and therefore convincing us we’re unworthy of the love we so desperately NEED to give ourselves particularly in the early stages postpartum.

If we all talked about our deepest darkest thoughts we might be less bothered by them, but there is so much assumption and stigma attached to thoughts. People believe that if you think something you must feel it. With intrusive thoughts it’s the exact opposite.

The vulnerability of a woman who has just been through childbirth is like no other time in her life, the fear that we feel is immense. I know I personally believed if I told the truth about my thoughts immediately postpartum that my children would be taken away and I would have been sectioned.

You don’t have to open up about every thought in order to dismantle their hold on you though, you can put in to practise strategies and use them for all thoughts that cause you distress.

Neo recommended a book for me to read during the early stages of recovery and it’s called The Happiness Trap and is written by Australian doctor, Russ Harris.

In the pages of the happiness trap Harris provides tools to defuse yourself from negative thoughts and the book itself centres very much on acceptance. It took me a while to come round to the idea that I would ever accept distressing thoughts, but the idea is not to engage with them, just to accept them for what they are, random mental events and words. I won’t say I’m cured, because that would be a lie, but I’m working towards how to better manage intrusive thoughts and not allow them to take over my life.

Dr Russ Harris The Happiness Trap

If you’re suffering from intrusive thoughts in the perinatal period I would urge you to talk to your doctor. I know it’s hard, you may be feeling judged and terrified, but I promise you the road to recovery starts when you learn that you are not alone with these thoughts.

Other organisations that can provide help during the perinatal period are:

Included at the bottom of this page is a link to ‘Buy Me A Coffee’ (or book, in my case) please don’t be put off by this! 
Currently, Divamum makes no money, and whilst I love writing, in order to keep growing I have decided to accept donations.
Just to clarify you are in no way obligated to make a donation and at no point will this become mandatory, it’s just there as an optional extra for anyone who would like to and all information is available via the link.

https://www.buymeacoffee.com/Divamumsteph

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.

Please look but do not touch

Please look but do not touch…. Little me thanks you very much.

Late 2016 when my first born baby was not yet six months old, I had an altercation in Tesco with an older lady who, whilst my back was turned for a millisecond, approached my baby and started holding her hand. Pumping her little arm up and down, the lady in question was deeply offended when I asked her not to touch my baby.

Yes you read that right, she was offended.

She looked at me as though I had grown a second head, and shook her own in disbelief.

So why didn’t I want a stranger in the supermarket making hands at my vulnerable little girl? Well, in case it’s unclear the answer is in the question; babies are vulnerable. Our daughter was in NICU for ten days following her birth. She spent some of that time fighting to breathe on her own, this made her even more vulnerable than the average healthy baby, but the truth is ALL babies are vulnerable. Their immune systems are too immature to cope with exposure to certain viruses and germs. Germs that are passed onto them via other humans.

Fast forward 5 years and I’m having the same altercation, except this time, I’m sat having a meal with my family in a country pub. We are all engrossed in conversation, chewing mouthfuls in-between chatter, my son tucked up, snoozing in his carry cot next to the table. A snooze shade lazily thrown over the hood, covering part of his face, when along comes another lady, this time of unidentifiable age, she comes over and lifts the shade on his buggy. Instantly, I pull the pram back.

‘Oh what a beautiful baby’ she says, smiling as if approaching a stranger’s baby and rearranging their sleep space is completely normal.

I should note I’m early in my recovery from acute perinatal panic disorder and invasion of my personal space is indeed a trigger for me. However, that’s not the reason I snatched the buggy away and scowled at the strange woman infiltrating my child’s safe place. The reason, is because it’s unnecessary. It’s intrusive and honestly, I feel strongly about the fact it’s just inappropriate. This one looked at me as if I hadn’t just pulled my child away from her, and proceeded to ask me (whilst I’m in the middle of chewing a mouthful of calamari) ‘Is it, a boy or girl?’ At this point I asked her to step back, offering an explanation that since covid we preferred for strangers not to get too close. The truth is though, it has nothing to do with covid, well maybe a little, but definitely not entirely. The truth is, I don’t want to have to offer an explanation at all as to why I don’t want strangers touching my child. I don’t want the discomfort of having to worry I’m offending someone who’s all up in my kid’s grill. With the new guidelines that masks are no longer mandatory, this woman was freely breathing all over my child and I was trying to enjoy my quickly cooling food.

After realising my distaste for this kind of behaviour with our daughter, our son even has a tag on his pram – the words in bold white lettering

‘Please look, but do not touch, little me thanks you very much.’

Kaiser’s face when someone invades his personal space

I must say that I adore these tags, I love that they are a polite but clear message and usually they are enough of a deterrent, people have a little peek and move on, respecting the tag and it’s meaning. Unfortunately, it doesn’t deter the people that don’t bother to read them.

I love showing off my children, they are after all my biggest and proudest achievement. That said, maybe it’s because I’m not naturally drawn to other people’s kids myself that I find this particular act of feigning adoration and ogling, so…obtuse! I can honestly say I’ve never felt a need to sidle up to a pushchair and stick my face in to have a good gander at it’s occupant. Nor do I feel so inclined to question the parent on the baby’s gender, it amazes me that people still do this. There’s a lot more pressing things going on in the world I’m sure, but germ spreading, I think we can all agree, is a very real concern nowadays and a little more reservation and brushing up on your spatial awareness can go a long way with a baby’s parent.

Sure, comment how beautiful their baby is, everyone wants to hear that (though don’t interrupt their dinner to tell them) but be mindful that some of us are struggling mentally, some of us are struggling with our own physical health and at risk for infection, some of our babies are particularly vulnerable to germs, and all of us and our children, deserve courtesy and respect. If you wouldn’t go up to a beautiful adult and grab their hand (without asking) and tell them how cute they look, if you wouldn’t do this without feeling as if you’re imposing on their dinner, or invading their space – don’t assume it’s any different for their babies. Please.

Tags available to purchase at JillyTotsUk

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.

Perinatal anxiety and me

I’ve written a lot about this in the past, in my first pregnancy it became crippling and really took over my everyday. This time round I’ve had so many physical complications that although this doesn’t help anxiety, it’s actually been a distraction in lots of ways from worrying about all the other stuff that flits into my head when it feels like it. Sounds confusing, I know.

But whilst I’ve had so much to think about, different appointments every week and new ‘diagnoses’ popping up all over the shop I’ve not been left thinking about what will happen when the baby comes too much. Mainly because I’ve been too focused on getting him here in one piece just getting through the weeks. Now that’s coming to an imminent end, doubts are creeping in.

Can I really do this again?

What if I don’t enjoy it, what if I don’t bond with him?

We have no money and have accrued some debt trying to manage my disability this pregnancy. How will I afford a new baby?

What if all of the challenges I’ve been facing hit me after birth and I struggle with my mental health?

What if I have a break down?

What if my body doesn’t recover and I can’t physically care for these children?

What if I mess them up, and I’m just not good enough?

I shared my experience of severe SPD recently on another platform – not even going to link it because the article has been republished with false information and generally isn’t very accurate. That wasn’t the worst of it though, the comments section. WOW. Those things should be banned. One woman commented that I ‘couldn’t value my mobility or my children very much seeing as I chose to have another one even though I’d suffered in my first pregnancy and knew what was coming.’ Another said I ‘should have adopted.’ Another said my ‘husband looks depressed.’

Brutal, but senseless comments from people that know nothing about my life or what led to us having a second baby and the choices we had to make or the mental turmoil we deliberated over. But words once spoken or written can’t be undone. It hurts and it is something I’ve thought about myself often, questioned myself and agonised over in detail, even more so in recent weeks. Some of you may argue if you share online you automatically allow yourself to be subject to negativity and public scrutiny by default, but I counter that with – this is my personal journey we don’t get to question or invalidate people’s own experiences, their trauma, or their choices.

I’m not sleeping – I would say I’m not sleeping well, but I’m barely sleeping at all, having piled on an obscene amount of weight from being so immobile I seem to have developed sleep apnea and that in itself is anxiety provoking so I’m awake at night torturing myself with what ifs and worse case scenarios.

When the baby is born we have to stay in hospital for a minimum of a week, and the thought of being parted from Ciara for that long makes me emotional. The idea that my little girl won’t get to meet and hold her brother straight away, won’t get to cuddle her mum whilst she goes through the biggest change of her life, saddens me. I know and understand the reasoning, though I don’t agree that she isn’t allowed to visit. I get that it’s just a week in the grand scheme of things but I’m still sad about it. I still feel sad about lots of things. I feel sad because I haven’t enjoyed a minute of this pregnancy and at every opportunity I’ve wished it away, and now it’s coming to an end and I didn’t get to even like it.

After last week and me sharing good news that we’d hit a milestone – this week we had some conflicting information and not so great news again. My health hasn’t improved or stayed the same as we’d hope and is now deteriorating again at the final hurdle. It feels like one step forward and ten back as it has throughout this whole journey. Constantly. It’s draining. Some days I feel empowered to stay positive and I do try, but most I just feel physically and emotionally done.

I really wanted to like it this time.

I know with anxiety the whole concept is a bit ridiculous, (I don’t mean that in a critical way) what I mean is it’s a lot of worrying about things we can’t change, things we aren’t in control of, and things that haven’t even happened yet. But it’s also very real. It’s the thief of so much joy and it takes a lot of strength to overcome. Sometimes the battle is long, and other times we are better at controlling it. With parenting comes more anxiety, and it really is a never ending worry, hitting us all differently but equally at times.

I promise to always share the good and bad, and I do fear that maybe I share too much bad sometimes, but I’m just trying to keep it real during a time when I feel so up and down.

It’s like that; my life. It’s a rollercoaster of juggling my health, looking after my babies and trying to get some semblance of living a good life, enjoying it. And sometimes it really is a case of ‘well you were fine yesterday’ I know, crazy right? And today I’m losing my shit and that’s just me.

Anxiety is something that presents in strange ways. I find it really hard to communicate how anxiety effects me to people, even those who know me well. Most of them probably just think I’m a stressy, moaning old bitch (not wrong) but the reality is very different inside my head. For me, anxiety is often restlessness, sometimes accompanied by rage and anger, sometimes tears and fear. My natural instinct used to always be attack first, now it’s always defend, so I’m defensive when I feel attacked. I don’t even mean attacked by people, I also mean when I’m in a place or a situation that overwhelms me. This is another reason I’m worried about being in hospital, staying over night on a ward full of other people and noise, when these are real triggers for me. I don’t like being forced into situations, I like being solitary and if I want to have a cry or a scream I like do it in private. Being surrounded by other mums who’s babies need similar care post partum may be reassuring for many, but for me, it’s my idea of hell. I want to birth my baby, bring him home, lock all the doors and collapse into a heap so that I can process all the overriding emotions I’ve felt whilst carrying him.

Obviously hormones are factoring into my anxiety at the moment but even in general and pre pregnancy – when I feel anxious it can present in any of the three ‘fight, flight or freeze’ responses. It’s not linear. It’s not something that ever really leaves me, and there are times in my life when I’m really good at managing it, and other times when I just don’t feel like I can regain that control.

Luckily for me, I guess, is I’m good at recognising its onset so I am able to at least minimise its effects by surrounding myself with things that comfort me.

It’s all very well being under the mental health team, it’s all well and good reaching out to our GP’s but as far as I’ve found the last 9 months not a single one has listened to anything I’ve said. And whilst I hugely advocate for speaking out when you are struggling, sometimes you just don’t have the energy to force people to hear you, and sometimes you just don’t want to. So getting through in whichever way works is so important.

34 weeks of growing you

Well what can I say, the change in me has been so good this week. Though it’s not remained plain sailing on the medical front. Last week I was called several times by the consultant and I felt reassured re the likelihood of a cesarian. Because of my fibromyalgia I don’t recover well from, well anything, and the idea of having major surgery, needing more rest and recovery time without the opportunity to get into rehab for my pelvis, really scares me. The reason being is, at the moment I cannot walk without crutches, and how the hell do I care for you on crutches after major surgery? However these concerns were countered by the consultant who reminded me it was after I had your sister via vaginal IOL that I was diagnosed with fibromyalgia, so recovery for either isn’t likely to be great. Whilst this sounds ominous, it’s reassured me that neither is likely to be worse than the other, for me anyway. I will chat to them again on Wednesday to discuss where we go from here.

The reason I’ve been somewhat pissed off with them again this week, is after complaining about the lack of contact from my midwife I spoke to someone else who was really helpful and arranged a new referral to a physiotherapist- only for my original midwife to phone me on Friday to tell me I couldn’t have physio at the hospital because I’m an out of area patient, they’ve known this since the minute I found out I was pregnant, and I’ve been begging for physio since 16 weeks and was told over and over that I couldn’t be seen face to face because of the pandemic. I was given a glimmer of hope at being seen face to face finally at 34 weeks, only to now be told no, again! It’s frustrating, and I feel like the system in place doesn’t work for pregnant women in physical pain.

Irrespective of the setbacks I do feel more positive in general. As seems to be standard recently, your sister is boosting my mood every single day, making life feel more manageable. I’m still in pain, I’m still without my independence, but I’m not without my family and they, you, are all that matters. Your dad, your sister and I, all went away the weekend and it was amazing. The weather was abysmal, and we spent much of it in the caravan but the change in scenery, the togetherness, was so uplifting it was worth all the exhaustion that is now befalling me upon return. Despite the aftermath I’m so glad that I made the effort. Your sister rode a donkey for the first time, talked about you lots, and before we left for our trip on Friday she even drew on my bump writing baby Cullen I love you xxx

I feel stronger and less weighted by what everyone else might be thinking. Less embarrassed to admit what I need. Less guilty about how I’ve been feeling, more accepting of myself, my limitations and prognosis. We know our journey is tough, we also know some people have it a lot tougher. We know it’s worth it and we know we’ll face whatever challenges come our way together. It’s a startling shift that has taken so long to come I wonder why and how I’ve not been able to pull myself out of the fog sooner – but who cares? I’m here now and I’m thinking more clearly. I’m trusting myself and my ability to get through this, and I’m doing it for you, for us, all of us.

You will be here, before we know it, so soon and we are excited to meet you. Apprehension still resides, and there’s still uncertainty, but I’m trying to focus on the things within my control. Soon we’ll be taking trips as a family of four and we’ll be together, for those days, I cannot wait.

33 weeks of growing you

17 weeks of not being able to walk, using a makeshift commode for the many wee stops I need in between the kitchen and the lounge, but not being able to make it up the stairs. Weeks in bed, watching the room spin and change only with the fall of day and night, has been rough. I have felt tremendous guilt, panic, resentment and fear for so many months. I have spoken up, and I’ve clammed up. I’ve felt supported and let down equally, by both the system and people closer to me.

But, Master Cullen – this week I bring better vibes. Hallelujah, praise the fucking lord, mama is finding a way to move through the quagmire of the last eight months. And all it took, was a complaint, and someone to listen.

I am forever grateful to our NHS, I sympathise greatly with the challenges they face. However, after proactively trying to access support to stay on top of my mental and physical health during this pregnancy, I have felt let down.

I asked to be under the mental health team to ensure I didn’t spiral like I did with your sister, the idea of this meant I would be allocated a midwife that specialised in mental health and could manage the links between physical and mental health throughout this pregnancy. As promised, I was, and in the eight months I’ve been pregnant, I’ve seen that midwife twice and sent several dozen texts to her that have been completely ignored. I don’t mean answered late, I mean, completely ignored. Thankfully I am not in mental health crisis, but I’ve felt well on my way as my physical health has depleted so rapidly.

I didn’t want to complain, because despite feeling unheard, the maternity team are all lovely. They are just harried and overworked. But it paid, because as soon as I voiced my concerns I was listened to, and am now, finally, being given the support I’ve been lacking.

There have been so many worse case scenarios running through my head about you throughout these months, and on top of those, the impact of being immobile and in crippling pain has had my mood plummeting to the lows I’d been desperately trying to avoid. I felt like I had nowhere to turn, many, many times.

The positives throughout this pregnancy have been overshadowed by the many negatives, but finally I can see the end nearing with a clearer and less restricted view. Soon, you will be with us, and life will look different again, we’ll face new challenges but I aim to face them with hope and a positive mindset. I cannot promise you this mood will last, I cannot promise you my positive resolve won’t waver again. In fact I can probably guarantee you that it will, but I can promise you that I will do my best, for you and your sister, for our family, our future and our new life with you in it.

I promise you that I will try harder to practise gratitude and to speak up loudly again when things get rough, and they will.

The nature of my health means there will be days, sometimes weeks, during your life that I will fail you. Not intentionally, but because my body is failing me. During those times, as you age (obviously not when you’re a baby) you will need to learn empathy and compassion. Your sister is shining a light on that for all of us at the moment, radiating positivity and excitement at your pending arrival, whilst being the kind and compassionate kid that she is. So I know she’ll teach you the ropes. She will also probably force them down your throat, but we are a family of strong girls and you’ll have to get used to that.

As always your Dad is doing his bit and I think he’ll probably need a rest of his own when we’re out the other side. We are lucky, we are thankful and we will be ok, but sometimes when things are hard life seems like a mountain made of quicksand, impossible to climb. I will always try to teach you that nothing is impossible, but it takes time and we’ll need to be patient with each other, you and me.

Love you 💙

Best sister ever