Confessions of a chronically ill mum – 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.

Brett Salako Photography ~ Review

On 3rd April we hired Brett to take some photographs at our daughter’s sixth birthday party. During my time blogging I’ve met some great photographers and all of them offer a different and individual vision. We hadn’t used Brett before. We’d never hired a professional to photograph a kid’s party before either. It’s safe to say though, we were more than a little thrilled with the final pics.

Those of you that have been reading my blogs for a while will know, I don’t often review products or services. But I felt it important to write a full review of Brett’s services and tell you why I think you should hire him for your next event.

  • Brett arrived early, managing to capture some fantastic, intimate, family photos before the carnage of 30 six year olds ensued.
  • Brett’s presence was non invasive. You can imagine lots of kids don’t want to be lined up for a hundred photographs when they could be partying, and Brett made sure that wasn’t necessary, whilst still managing to capture some perfect shots.
  • He has a very arty flair when it comes to captures, and he managed to make the otherwise plain background of the hall fit perfectly into each photograph.
  • He listened to what we asked for and delivered.
  • His efficacy of getting the finished edit to us was stellar.
Banksy style capture

Brett is Wiltshire based but also covers surrounding areas, he is available for family shoots, weddings, landscapes and a variety of other photography services.

Brett’s instagram showcases his versatility.

What I really liked about having Brett at our daughter’s party, was his patience. When you’re surrounded by children moving at speeds, for hours, it can be hard to capture the perfect shot, but that wasn’t an issue for Brett. He was dedicated to the cause and managed to capture our daughter, and us as a family, beautifully.

Action Shot
Family

So why would you hire Salako Photography for your event? Well, if you’re after a patient, punctual and interested photographer, who listens to your ideas and is speedy with his edits. I can’t see any reason why you wouldn’t want to hire Brett. His prices are competitive, he really cares about your vision and will work with you to achieve it whilst adding his own artistic flair. We now have a whole album of our daughter’s special day that we’ll be able to cherish forever. Her first birthday as a big sister, and her first surrounded by friends post covid-19.

I highly recommend Brett, he’s not just a great photographer, but a genuine and friendly guy, too!

Confessions of a chronically ill mum #7

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

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

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

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

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

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

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

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Currently, Divamum makes no money, and whilst I love writing, in order to keep growing I have decided to accept donations.
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Confessions of a chronically ill mum #5

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

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

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

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

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

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

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

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

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

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 #2

This week in our house everyone seems to be fully over the ‘Rona, except me, of course not me. My symptoms are lingering and have worsened whilst I’ve been in the luteal phase of my cycle. This isn’t unusual, I often get flare ups in all symptoms around this time of the month, and particularly symptoms stemming from viruses that weaken your immune system. I’ve had recurring shingles for a few years now and every single month without fail, despite being on antivirals indefinitely, I get a flare up in nerve pain at the outbreak site.

Having said that, this past week I’ve been busy! So busy, that I’ve had to be organised. I notice this organisation has had a positive impact on my mood despite being in luteal. It’s classic distraction I guess. Also my husband and I have a weekend away booked as it was our wedding anniversary this week and just knowing that I have three nights of child free sleep to look forward to, is undeniably liberating.

A few more things happened and one of them was, I saw a new GP. A big deal for me. I’ve had the same GP since before my Fibro diagnosis six years ago, and she’s been amazing. The idea of seeing a new one whilst she is on maternity leave has filled me with dread for months. But today I did it. It was ok. I went in with a list and ticked off all of this in 10 minutes….

  • ECG Booked
  • Fasting bloods booked
  • Referral to rapid cardiac clinic
  • Breast clinic follow up appointment booked
  • Chased up Lipid clinic referral
  • Discussed further gynae/endocrinology input re PMDD
  • Post covid obs done
  • Face to face appointment for Kaiser booked for post covid obs.

Why am I telling you all of this in a blog post?

Well there is a reason, and it’s this weeks confession. I have always been a person that actively advocates for myself and my health. After all if I don’t, who else is going to do it for me? I research everything, I connect dots and I track my symptoms. But for months now, I have been slacking. It took me two months to drum up the courage to get a referral to the breast clinic, even though I had a very visible lump in my left breast. I just couldn’t do it. I couldn’t be bothered to argue the toss with the drs receptionist about why I needed a face to face appointment, and every time I spoke to a healthcare professional that wasn’t part of my mental health team, I cried. 

When you have chronic and mental illness you get used to being dismissed by doctors.

Can’t breathe, crushing chest pain? Probably just a Fibro flare up, I’m sure that’s a symptom! Or actually maybe it’s anxiety, have you been stressed lately?

Skull smashed open and brain hanging out? Sounds like a panic attack.

Gone blind? Sounds like a migraine.

And so on. I know I’m being glib, and I’m sorry if this exaggeration offends anyone, but seriously, sometimes visiting the doctor is like pulling fucking teeth. The issue with that is, the doctor’s the only person who can help you get the treatment you need, for the answers you had to figure out yourself.

And when you have kids it’s not even a case of whether or not you can cope with your symptoms. You don’t get a choice. I know it’s easy for me to say, and many people reading this may well think, well if it was that bad you wouldn’t be able to just cope. The truth is though, parents with their own health issues do just cope. Even the ones diagnosed with life threatening cancers still do the school run between scans and treatments. I personally have friends who have had to do this so I know that it’s true for some.

Big thing number 2.

Group therapy. I started it today. I want to write a whole blog post on the pros and cons once I’ve had a few more sessions so for now I’ll keep it brief. The session was two hours long. Two hours spent with a group in person might have felt quite nice, a chance to learn some new mindfulness skills and have a chat with others in a similar boat to myself, but two hours online was painstakingly long. Kaiser napped for just 15 minutes of it and trying to listen to other women speak over the top of crying baby heads felt strained. There were a few rules too, like we had to keep our camera on at all times so I couldn’t roll my eyes or go for a wee without having to let everyone know my reasons. I want to benefit from the group and I’m sure in time I’ll get used to it and maybe even bring some of my own value to it, but today I found it just made a stressful day with a baby, more stressful. The whole idea of this group is to be able to learn to regulate my emotions better, to deal with stress in a more productive way, and to feel more in control. So I’m going to stick it out, even if the first session did feel like it was an intrusion on my time. Therapy, I’ve learned is not supposed to be comfortable and it requires commitment so I feel I owe to myself to see this through.

Full time job

It has felt lately as though looking after my health and trying to juggle appointments and treatment is a full time job. Having a baby is also a full time job, both without annual leave or pay. I’m due back to work soon and no idea what I’m going to do about childcare or how to manage two full time jobs on top of a part time paid job. I want to be well in order to participate in my children’s lives, but I also need to earn money to be able to give them a decent life. The system is still fucked. It still penalises mothers who work or have partners. Childcare is still extortion, and I know I’m not alone in this plight. I just wish it was one of the ones I didn’t have to think about right now, but I know I do, as with the cost of living rising and wages becoming stagnant, it’s a very real threat to our livelihood and I guess lifestyle too.

Finally

Finally I’ve become more aware this week just how much I’ve let myself go, and I’ve set myself tiny goals of putting my makeup on more often and making sure I’m grooming myself! So far it’s going ok, but they do say it takes at least 3 weeks to form a habit so I’ll catch you up then.

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 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

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

Reasons not to have a second kid….

Huffing spectacularly in a bid for attention, my five year old turns up the volume on whichever device she’s glued to, whilst readjusting her headphones. Meanwhile the baby, who has just turned two months old, screams as though someone is pouring boiling water on his fluffy brown head (I can confirm this was definitely not the scene.) So shrill are his screams, I can still hear them even when he eventually falls silent, an eternal imprint in my echoic memory.

It’s funny really, because I remember so vividly his sister making the same sounds. The torturous cries of an inconsolable infant, a sure fire way to make you feel as though you are royally failing in the parenting game.

When my husband waltzes in from his 9-5 with a smile on his face ready to greet the family, I am already in tears. A red faced baby thrusts violently in my arms and the five year old looks as though she’s about to pack her shit and leave home. He takes the baby from me whilst the other one needs her tea cooking. Another drawback of levelling the numbers, is you get one kid each to look after. When you only have one to pass between you, the minutes in which the other parent takes over feel like a luxury spa treatment.

Your attention will constantly feel as though it’s paying mind to the wrong child at the wrong time. Because how can you know who needs you more when they both need you for differing reasons at the same time? One needs a hand because she got her head stuck in between the sofa and the wall, and the other has been waiting 30 seconds for their milk and their wails let you know…. It’s 30 seconds too long.

What’s that saying ‘If my first baby behaved like this, I’d never have another one’ I clearly didn’t get that memo. There’s also a saying which promises you never get two children the same, I cough when I hear this one now, but whilst pregnant with my second I prayed to god it was true. Turns out, the joke is on me.

Even the most stoic of mothers (that’s not me by the way) struggle at some point, but if your little gremlin has some digestive issues, colic & reflux mama’s I know you feel my pain. Not even touching on if you yourself are struggling, my chronic illness & relentless anxiety make this mountain a hard slog, that sometimes feels so overwhelming you wonder if you’re actually losing your mind.

So if you’ve read this far, you’ve probably been wondering who the hell writes this stuff and what kind of message am I sending? Where’s my positive outlook? My gratitude, for two healthy children? And you’ll be pleased to know it’s right here:

It’s true your kids will pull you in every direction, make you feel like you just can’t give enough of yourself, they’ll unintentionally make you feel guilty as hell – but they will also make you feel needed, whole, and complete.

They will push every button, overload your senses and make you wish they were born with built in pause and volume control. But, it’s that sensory invasion that will have you laughing until you cry, your heart swelling with pride, and have you sluicing tears of joy when you wave them off for their first day at school! Yay – someone else’s problem for the next ten years. (That was a joke, don’t @me)

The jealously you might notice from your older child will on occasion be replaced with an adorably primal sibling bond. Watching them teach their younger sibling, watching them do everything imaginable to make them smile for the first time -including cannon balls off the sofa- is priceless. Maybe they’ll grow up to hate each other, but maybe they’ll grow up to be the very best of friends, either way you’ll have fun watching them grow.

Your anxiety, will occasionally be replaced with minor worries, like have you got any bread for their packed lunch or the fact you forgot to pick up nappies on your weekly shop. It will of course also be redirected to your kids if they’re not the source already. I can’t promise you a reprieve because I know only too well, mental health doesn’t work like that…. But I can promise you a reason to live, or in the case of this blog, two reasons.

If you’re a chronic pain sufferer like me, you won’t get any relief, but what you will get is distraction. They will keep you so busy some days you’ll unknowingly forget about the pain for a while.

It won’t be easy, it won’t even always be fun, and some days you might wonder what the fuck you have done….. but you’ll never regret it. No matter how hard. For me, these kids have given meaning to a life that lacked direction. They’ve given hope to a pessimist. They’ve brought joy in my darkest moments and they’re my reasons for staying alive.

One last saying: The days are long but the years are short.

In other words – you’ll soon be sipping cocktails and eating tapas in Benidorm whilst your teenage kids are trashing the house in your absence and sleeping till noon.

36 weeks of growing you.

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

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. 💚

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.