parenting

Confessions of a chronically ill mum.

January 14, 2022 — Leave a comment

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.

Another new year

December 31, 2021 — Leave a comment

Last year I wrote a post titled Unhappy New Year and in short it was about what a shit show 2020 had been for us all. At the end of the blog I gave myself some small resolutions, to be less judgemental and apply less blame, find the positives etc. It wasn’t until I read back over the post that I realised I have achieved most of them. I think my mindset is definitely different these days. Whilst I won’t pretend I’m Lady Optimistic I am more optimistic than the me of previous years. I’m also, so much more self aware. Aware in general. I have therapy to thank for most of these changes.

The first half of 2021 was awful for us. Worse than 2020, tenfold. With me being in a wheelchair, trying to homeschool and work from home, a baby on the way that I wasn’t managing to care for as I’d hoped, gestational diabetes along with other complications made me so unwell. It all felt as though I was on a rapid decline. As Kaiser’s due date neared, my mental health worsened. Most of you know what happened next, but in case you don’t, I was hospitalised and my labour induced after psychiatric evaluation. It was decided that for the sake of my mental health and the health of our baby, he needed to be born.

I’m six months postpartum now and on my road to recovery of perinatal mental illness. I’m working hard to regain my mobility, manage my chronic illnesses, care for a newborn, and five year old, keep house and balance my hormones, oh and avoid covid, there have been many, many, bumps.

However, I believe despite the awful ordeals we have faced, the fact everyone in the house contracted covid over Christmas resulting in a real scare with Kaiser (currently all still positive and feeling really quite bad) as well as living with perpetual lack of sleep, we’ve smashed 2021. As a family we have worked harder than ever, there are broken pieces where we were once whole, and there have been rivers cried too. Our marriage has taken a hit, and parenting two children instead of one has been a huge change for us. But, having weekly therapy, finding a decent medication combination, owning my shit, being brave, digging deep, along with all that mindful bollocks previously discarded as useless information I’ll never need has been put to great, life changing use.

I don’t believe I made it through 2021 on luck or a wing and a prayer. No, I made it through this year with sheer determination, love, and hard mental graft.

Two days ago I was back in the hospital I birthed Kaiser in. I’ve been there only once since I had him, and that was recently to find out I had a tumour (benign) in my left breast. During that appointment I had my mum holding my hand. The second time was two nights ago, alone, with a baby who’d just tested positive for covid along with a husband at home who’d also tested positive so couldn’t be there to support me and our son.

I sat in the hospital room and cried alone, whilst the nurse told me my baby would need oxygen. I cried again when his levels were back up and we were told we could go home.

I’m still suffering anxiety six months postnatal, but most of the time it’s in response to ‘normal’ anxiety provoking situations, like hospitals and poor health. The rest of the time I’m using the tools it’s taken me six months to master, to manage it. I’m trying to show myself compassion and I’m working really fucking hard on gratitude too.

As I write this late at night after finally getting my kids to sleep, oscillating between shivering and sweating buckets with a fever. I decided to think about whether I have any resolutions for 2022, and the truth is I do, but my main and most important one is, I plan to continue to heal. For myself, and for my family. My kids deserve a mum who isn’t falling apart at the seams, and I deserve the love and care I so readily give to others.

If I could give my readers any advice for the new year, it would be that you treat yourself with more kindness.

Ok so I’ll throw in a few more for good measure… here goes

  • Love the people who treat you well
  • Have empathy for the ones that don’t (unless they’re just c*nts, then fuck them) but try the empathy first. It might surprise you.
  • Stay in your own lane. Comparison is the thief of joy.
  • Tell people you love them, tell them often.
  • Stay in the present, if it’s not happening right now, it’s not happening.
  • Get more fresh air.
  • You don’t need permission to rest.
  • Don’t look back, unless it’s to see how far you’ve come. 
HAPPY NEW YEAR FROM ME AND MINE TO YOU AND YOURS XOXO

Intrusive thoughts during the perinatal period

November 13, 2021 — 1 Comment

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 and my labour was induced, whilst 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 all I did was 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 and felt disassociated often, then I believed I was suffering from severe OCD despite not having any compulsions.

When I discussed this with Neo 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

Mothership Writers Workshop Review

November 2, 2021 — Leave a comment

I first heard about Mothership Writers when my daughter was around three years old. I’d been writing my blog for some time and was looking for inspiration as well as guidance in the form of a writing workshop. Mothership (unfortunately for me back then) caters to new mums with babies two and under, so I had initially missed the boat. However, I kept in touch with Emylia Hall, founder and novelist via Instagram and when I found out I was pregnant with my second baby I immediately sent her an email asking to be on the list for updates on the next available course. I joined Mothership Writers when my son was ten weeks old and I’ve just recently completed the eighth and final workshop.

What is Mothership Writers?

Essentially, it’s a creative writing course that walks the attendee through various writing styles, but in reality it’s so much more than that. Mothership caters to women in the early stages of motherhood creating a sense of solidarity and openness you can’t find in your standard baby group, or indeed creative writing course.

Emylia’s teaching style is encouraging and heartfelt, she creates a safe space for mums to pour over their experiences with words, evoking powerful emotions and allowing the attendee to experience a full and wholesome sense of catharsis. The course is made up of eight hour long sessions and a whole host of information you can’t get from simply Googling ‘how to be a good writer’…. Emylia instils a sense of pride and ownership in us mums during each workshop and it’s obvious from the very first session she’s fully invested in our individual stories and writing success.

During lockdown 2020 Emylia curated the book Born In Lockdown a fantastic collaboration of fragments from over 250 authors, all of which are women who experienced pregnancy or became new mothers during the onset of the coronavirus pandemic. The book is free to download with donations accepted for SANDS the leading stillborn and neonatal death charity.

All graphics and illustrations by Esther Curtis

Course layout

The hour long weekly workshops take place over zoom and are always initiated with a head emptying exercise AKA brain dump. An exercise which I have found so useful that I’ve continued to do it outside of the workshops. The session is then broken down into writing exercises and group discussion, always starting and ending with an influential poem. Some of the best poems I’ve ever heard have been introduced to me during a Mothership session!

Though the course is designed for mothers, writing craft is very much in focus during the workshops and Emylia delves into writing styles, including character creation and story structure. The hour always flew by, but I always came away feeling like I’d got loads of writing done and the sense of achievement coupled with inspiration after a session is great soul food.

The really great thing, (or rather one of them) about Mothership Writers is, you don’t need to have ever written before to benefit from the course. It’s designed for all writing abilities and I feel that anyone, with or without writing experience will benefit from the course and Emylia’s kindness and knowledge.

The level of insight Emylia gives regarding the various ways in which there are to write both creatively and expressively, is a true testament to her own writing success.

Emylia Hall, founder of Mothership Writers and Author of The Richard & Judy Bestseller, The Book Of Summers.

My Personal Experience

After being admitted to hospital at the end of my second pregnancy because of a rapid and terrifying decline in my mental well-being, I had zero desire to write. I’m a person that usually writes in order to ‘hear myself think’ and writing has many a time been a form of therapy for me, during pregnancy I often documented my honest, but not always positive, experiences. Once my son was born though, the intrusive thoughts I was experiencing felt too raw and too heinous to get on the page and I just didn’t have it in me to write, about anything. Mothership Writers gave me both inspiration and clarity over my thoughts. Listening to other mums express in their own words their personal experiences helped me to open up, it also gave me inspiration to write about the positives. It helped me articulate and put into words the tiny nuggets of joy that occur daily in motherhood. The joys that are so often overshadowed by our darkest times in the early stages of parenting. I am so humbled and grateful I was able to attend a Mothership Writers course during my recovery from perinatal mental illness, because I genuinely believe the course itself to have been a powerful recovery aid for me. I loved it so much, I’m deeply sad that it’s over, but I know I’ll stay in touch with Emylia and the Mothership crew via social media.

Verdict – Cannot recommend the course enough, for all mothers keen to explore their creativity through writing!

Image of my dog Frank and Son Kaiser during a Mothership session!
  • For more information on Emylia and her latest writing projects follow her author page Emylia Hall IG

104 days postpartum

October 12, 2021 — Leave a comment

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

September 26, 2021 — Leave a comment

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

Life after secondary Symphis Pubis Dysfunction.

July 31, 2021 — Leave a comment

For those of you that follow my blog you’ll know that for the last 7 months I’ve been using crutches and a mobility scooter because for the second time in my lifetime I developed Symphis Pubis Dysfunction during pregnancy, rendering me unable to walk unaided.

Symphysis pubis dysfunction (SPD) is a condition that causes excessive movement of the pubic symphysis, either anterior or lateral, as well as associated pain in the legs, hips lower back and groin area, possibly because of a misalignment of the pelvis. Most commonly associated with pregnancy and childbirth, it is diagnosed in approximately 1 in 300 pregnancies, although some estimates of incidence are as high as 1 in 50.

After the birth of my first child my mobility returned almost instantly requiring no further treatment and little associated pain. Professionals tend to believe SPD worsens with each pregnancy and the likelihood of developing it in subsequent pregnancies is extremely high. Many women experience pelvic pain in pregnancy and the severity of SPD varies from person to person, loss of mobility and need for walking aids is generally rare. It’s onset usually occurs in the latter part of pregnancy in the second and third trimesters. For me, I had developed symptoms during both pregnancies, at the end of the first trimester and required crutches by sixteen weeks. In my first pregnancy I needed to use a wheelchair at around 25 weeks and in my second this was sooner, at around 20 weeks. Highlighting to me the very real and tragic reality that society isn’t accessible.

Since giving birth four weeks ago the question on everybody’s lips is ‘can you walk again now?’ And the answer is yes, I am able to walk unaided now, but my symptoms have NOT disappeared, far from it.

I’ve lost a lot of weight in a short space of time and I believe this to have provided significant relief on the pelvic joint, thus I am able to walk a thousand(ish) steps at present, but it’s not without pain. I’m currently unable to walk around holding my son and rocking him and swaying in a standing position is agonising. Same goes for carrying anything, including the car seat, along with bending and sitting for prolonged periods. I spent almost 4 of those 7 months pretty much horizontal in my bed and so getting used to different positions causes increased aches and pains.

I’m so relieved to have some mobility back at all though, as it was suggested I may need crutches postpartum and that would have made life with a newborn and an older child even more challenging. After the first two weeks following birth I started trying to go for walks everyday with my mum or husband. Short walks that lasted around thirty ish minutes, however this seems to have aggravated pain and I’ve had to reduce the amount of exercise again and pace myself. I’m still trying hard to keep moving I just need to be mindful not to overdo it. Some of you will know I also have fibromyalgia and so pacing is important for me anyway.

During pregnancy I was unable to see a physio, constantly being fobbed off with covid being a reason for not treating in person my very real and very debilitating pain. However I do plan to chase them again as soon as I’ve had my postnatal check.

It’s definitely not easy having a newborn and limited mobility, but I’m humble in that I’m able to move around at all after so long without any freedom. I feel positive that with the right strengthening exercises I can increase the time and distance I’m able to walk but whether I’ll ever be able to move like my prenatal self is still an enigma. I’m desperate to get back to the woods and explore with my daughter, but I know uneven ground is a no no at the moment. I’m also not able to carry my son in a sling. The great thing about buggies is they provide a stand in crutch, giving added support, but it’s really important to remember to do simple things like bend your knees when lifting and stretch often etc.

I’m used to being in pain everyday and whilst it’s not fair or fun I do feel extremely grateful. Losing my mobility to the extent I did in my second pregnancy has really made me value my abilities so much more than I ever did before. It’s also opened my eyes to how other disabled people manage (or not) in a world that isn’t designed for us, even things like high stools in restaurants and benches without backs can cause excruciating pain!! Crutches were a constant trigger for flare ups of fibro symptoms, causing fatigue from too much effort lugging about a baby bump on your arms, being unable to participate in days out with my family was soul crushing, and whilst I’m a long way from climbing round soft play or going for a run I’m closer than I was just weeks ago.

My advice to pregnant women experiencing pelvic pain is to act fast, don’t ignore it, keep moving but don’t do anything that hurts and if that means walking, try to exercise seated or led down. Learn to pace and rest often. Take the weight off of the pelvic joint whenever possible. Goes without saying but don’t do any heavy lifting either. DEMAND to speak to a women’s health physio and look up your own safe exercises for pelvic pain in pregnancy. Weightless exercises like swimming are recommended but be careful of over doing it with the legs.

Something I didn’t do but would also recommend, is try and keep within a healthy weight, it’s nearly impossible when you can’t move around but the extra weight causes more strain on those joints.

Life after SPD isn’t the same as life before but it’s better than life in the peak of it. The world needs more awareness about the impact pregnancy can have on our health and information about how to lessen that impact going forward.

Perinatal anxiety and me

June 17, 2021 — 2 Comments

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.

36 weeks of growing you.

June 7, 2021 — Leave a comment

This might be my last ‘growing you post’ because in a day or two we will know (hopefully) when you’ll arrive and how. I am excited, terrified, anxious, and desperate for you to be here with us, healthy and safe in my arms.

We made it this far and we fought back hard, and when people told us about risks we questioned them. When people ignored us, we spoke louder. When people dismissed our struggle we learned to challenge them or leave them behind. We made it this far because we were determined to get you here safely. You and I, endured this god awful journey together – you floating around in amniotic fluid, thumping and rolling inside me, a space that feels cramped now. We have endured it with the help of our friends and family, cheering us on, telling us we can. Convincing me I am strong, and despite having possibly never felt worse or physically weaker, in my life. I know I am strong, and now we’re finally here, just weeks away from your arrival.

On Saturday night I did the dreaded trip to maternity again after not feeling you move for hours. When I got there, alone in the dark dragging myself across the forecourt on crutches with your notes in a backpack, I was really scared. Scared because you never stop moving now, and scared because when she hooked me up to the NST your heart rate was high and we didn’t know why. Scared and whispering silent prayers. We are so close that nothing, nothing else must go wrong now.

On Sunday my friend Amy and your Nanny Sandra, organised me a little baby shower. It was intimate, because of coronavirus we couldn’t have loads of people anyway, and I was grateful for the intimacy. It was cosy, and relaxed and full of swearing, laughter and love. There were people we would of liked to invite but sadly couldn’t, and I always feel a bit awkward in these situations. However I’m feeling very lucky and ‘blessed’ (for want of a less cringeworthy word) to have such wonderful friends. I know I’ve talked a lot about friendships when writing to you, and that’s because I still, as an adult find them so hard to navigate and the more reclusive I’ve become the harder they seem to keep up with, so I am eternally grateful for those forever friends whom make it effortless.

I also got some amazing gifts and Becky, your sister’s godmother who will 100% be yours too, made me the Guinness cake of dreams as she always does.

We had afternoon tea, and played games whilst your dad took your sister to the fair. Your wonderful dad who has walked every step I couldn’t, washed every dish, cooked some of the worst meals I’ve ever tasted, but ate with gratitude anyway. Your daddy whom your sister loves ferociously and whom I couldn’t live a day without.

When I got home I told her all about the shower and she beamed for you, and said ‘Is that for our baby?’ Smiling her infectiously brilliant smile.

She’s started abbreviating your name and coming up with many versions, which is hilarious and yet she’s still managed to keep it a surprise, nobody has guessed it since one friend did.

I just want you here now. ‘They’ say nothing else matters and whilst I’ve found that hard to get on board with during a difficult pregnancy, I know ‘they’ are right. I am petrified, because I know how responsibility can lay heavy on a parent’s shoulders, but I also know it’s my favourite job.

Us four, your dad, sister, you and I, as long as we have each other we will be ok. We will get through the challenges and try our best like we always do, and when we have those blissful good days, we’ll try our best make them gloriously great.

35 weeks of growing you

June 2, 2021 — 1 Comment

It was going much better until your dad and I went out the weekend and it threw me into a flare up. Again. We were only out for 2 hours.

So whilst Saturday was a good day Sunday was not.

You know that sleep is evading me, I know you know, because you’re awake with me – it’s not unusual for that to happen this late in pregnancy, some might even argue it’s par for the course and being tired now is some kind of subconscious way of prepping me for your arrival. Maybe, except it’s now making me really unwell again. I’m getting about 2 hours broken sleep a night. I’m having flare ups of fibromyalgia symptoms that I can’t treat. I’ve started getting the skin crawling sensation again, from head to foot – it lasts hours, sometimes days. I have been desperate for cold showers at 4am and I’m scratching so much my skin is bleeding and marked.
I’m also feeling rage viscerally, like I could actually start caving your dad’s head in if his foot touches mine in the middle of the night, because the slightest touch sets my whole body off with paresthesia.
Itching, numbness and tingling are common symptoms of fibromyalgia, except that usually they would be treated with heavy duty drugs. They’re also not uncommon symptoms of pregnancy, but you can’t take heavy duty anything, when you’re up the duff.
I phoned maternity Sunday who wanted to see me urgently to rule out intrehapatic cholestasis…. so we did the 80 minute round trip to the hospital again to wait and see if you have to come out even earlier than your planned early delivery.
The sun is not a helpful addition for me at the moment. It’s making my symptoms worse. It’s nice for my mood, but as much as I’d like that to be enough, as much as someone might tell me it’s enough, feeling better mentally doesn’t provide a cure for a physical problem.

Next week we find out hopefully how you’ll be making your entrance. I’m excited and plagued with anxiety at the same time. We know we have to stay in hospital for a couple of days minimum, and that’s bothering me because now we have your sister, your dad won’t be able to be with me every second. I don’t feel confident about doing any of this alone. I’m frightened now that things have taken another turn and that’s how quickly it happens. One minute we’re loving life and trying to move forward with positivity and the next it all comes crashing down in an instant. I have hope that if it can change this quickly, the positives can also come as quick and we can be pleasantly surprised too.

I’ve been solely focused on you and the few people that have been present on this hellish journey with us. Whilst trying hard to give less thought to the people who haven’t shown an interest. I don’t blame people for not wanting to jump into our hell, I know they have their own. But recently, I really have needed to remind myself that everyone has their own shit going on and I shouldn’t take it personally. I am mindful of this and I am giving people the benefit of the doubt, and accepting my journey isn’t someone else’s to bear, but sometimes I find that it still stings and I get hung on up on thinking about it. It’s still hurtful that people I consider close friends, people who I’ve involved in all big life events like your sister’s christening and our wedding have just stopped bothering. I know as a 33 year old woman, mother and person who can be totally overwhelmed with her own life, how hard it is to sometimes connect with people, so I am conscious of this, and the older I get the better I am at empathising with other people’s struggles. Occasionally though, I still, rightly or wrongly, feel their absence like rejection. I’m human at the end of the day, and maybe too honest about this stuff. When you grow up, you’ll go through all sorts of life trials and hurdles, but you never really stop needing people in your corner. Luckily for me I have my mum and your dad always. And luckily for you, you’ll have all of us.

Things are easier now restrictions have eased and people are helping us keep your sister busy again. She is happiest when she is busy and that has taken some of the pressure off your dad, which makes me feel less like a burden on him. I worry sometimes if one day he will wake up and feel like we’re a full time job, but he’s a good man, I hope you’ll end up just like him.

I’m not ready for your arrival if I’m being honest. People keep asking me if I’m ready but I’m not really, because it still feels like there’s so much we don’t know. Is anyone ever really ready though? I do know it will all fall into place when you’re here as life often has a way of working out.

Can’t wait to finally announce your name either! See you soon little chief. 💚