Pregnancy Timeline

I use writing tools a lot to make sense of feelings, I always find it gives me clarity and as I’ve had very little actual support for my mental health this pregnancy, despite being under the perinatal mental health team, covid restrictions have played a huge part and the fact I can’t attend groups because of lack of mobility. That said, I’m pretty good at managing these phases if I let myself feel them. So I decided pulling out some old tools might help, and here started the pregnancy timeline.

I’ll explain at the end why this was such an important process for me.

4 weeks – Found out I was pregnant had to reduce and abstain from medications that had been keeping me well. Very anxious, unsure and not feeling excited.

5 weeks – withdrawal symptoms, migraine, nausea and vomiting, unable to get routine appointment with GP. Lots of tears.

6 weeks – Hormonal migraines started coming every 3-4 days and increased in severity and duration. Unable to reduce Migraine meds. Mental health sketchy, had to fight to be booked in with the perinatal mental health team.

7 weeks – High temperature, still sick, time off work, negative covid test, later confirmed UTI at emergency GP appt and course of antibiotics

8 weeks – Booking appointment with midwife. high BP and protien still present in urine. More antibiotics. Discussed medication benefit vs risks.

9 weeks- low mood, tearful and anxious. Migraines still severe. Several trips to maternity in the same week to check blood pressure.

10 weeks- pelvic pain present. ? SPD. Fibro flare up. More time off work.

12 Weeks – First scan. No physical abnormalities present with baby. Heart beat strong. Consultant advised go back up migraine medication. Blood thinners prescribed

14 weeks – Pelvic pain increased referred to physio, no appointments because of covid, sent exercises in the post.

16 weeks – Pelvic pain so severe can’t bear any weight, SPD confirmed, back on crutches again. Heard heartbeat at routine appointment.

17 weeks – Unable to drive, can’t do school runs, more time off work. Mood swings, hormonal allergies and itching.

18 weeks – Felt baby move for the first time.

19 weeks – Reactivation of shingles virus causing more pain & long fibro flare up, prescribed antivirals. Permanent exhaustion.

20 weeks – Start using Avulux glasses, migraines decrease and can reduce migraine medication further. praise be. Twenty week scan delayed.

21 weeks – Gender scan. It’s a boy 💙low lying placenta picked up but not mentioned to us. Warned not everything can be seen on a scan but all good so far with baby growth. 28 week scan booked.

22 weeks – crutches becoming unmanageable with fibro – mobility scooter purchased, gaining weight fast.

23 weeks – Spotting after sex. Reduced fetal movement monitoring. Feeling ashamed and embarrassed of my immobility, weight gain rapid.

24 weeks – mobility worsening, mental health struggling as a result. Feel like a shit mum. Social services agreed for adaptations made in the home, grab rails shower seat etc

26 weeks – Glucose tolerance test – came back negative. Praise be

27 weeks – Almost every day spent in bed, midwife doesn’t reply to message for 10 days. phoned doctor in agony and tears begging for pain relief – Shaun having to lift me from bed every morning before he goes to work.

28 weeks – Growth scan confirmed placenta previa – talks of early cesarian birth. Talks of baby needing to stay in hospital post birth. Talks of NICU and breathing difficulties. Must abstain from sex. 36 week scan booked. Consultant okayed using tens machine for pain.

30 weeks – shingles flared up again, back on antivirals, sitting on ice packs, barely moving from bed. Tens machine doesn’t reach nerve pain.

31 weeks – Not long now but still feeling uncertain – not much advice about mobility after birth specifically if needing cesarian birth. Midwife appointment moved for the 3rd time no support re reducing medication further for delivery to avoid withdrawal in the baby.

In 7 months I’ve had approximately 10 good days. That’s not an exaggeration. It’s the truth. I’ve been unable to work, drive, leave the house on my own, cook a meal, take my daughter to the park, walk our dog. In 31 weeks I’ve been told by people who have absolutely nothing to do with my medical care that I’m just depressed, I’ve been told ‘at least the baby is ok’ and I’ve been told to ‘wait and see.’ And to ‘stay positive’

I’ve been hit with statistics, risks, percentages and ‘can cause’ (‘s) at every appointment.

In 31 weeks my husband has gone from being my lover to my carer. My daughter has gone from having a mum who actively participates in her life, to one who just watches. She has spent more time with her Dad and Nanny than anyone else. She has been going to school for 10 hour days because I can’t do the school runs and I can’t care for her alone in my house when her dad isn’t home. I can’t care for myself alone in my house.

I have gained weight like a duck pending foi gras.

I’ve been told not to wish pregnancy away. To enjoy it. I’ve been told that I’ll forget all of my pain once he’s here.

Despite all of this, every single day all I do is think of the baby. All I do is wait and see. All I do is think of my family. I have lived the last 31 weeks in agony and begged for the pain of labour over how I feel daily – at least then I could have some decent pain relief without worrying it’s going to cause my baby long term developmental damage.

So the reason this timeline was helpful is because, actually, despite all of the shit I have dealt with in the last 7 months, I have kept going. I have made decisions for the sake of the baby and my family that have negatively impacted me but have been important in supporting them. I have survived. I have tried, and I have kept going. I have found ways to push on.

My friend told me about a quote the other day that says

Everyone wants to hold the baby, but who holds the mum’

And I have needing holding. I have needed reminding, though even when I have been reminded, I have failed to remind myself.

I have sacrificed a lot in hope, in knowing it’s worth it, in putting other people before myself. I’ve been in agonising pain, I’ve cried and screamed and complained but every single day I’ve still got through it. I’ve had a great support in my close family and friends and I’ve been lucky that people have taken the time to remind me how well I’m doing despite the challenges – but I wrote this to remind myself. It might seem like as long as the baby is ok everything is fine, but that’s so far from the truth when it comes to pregnancy and health. A healthy baby might be the most important thing. But it’s definitely not the only important thing.

And while I’ve been thanking everyone for their help, I’ve been condemning myself for needing help in the first place. I’ve been drilling myself every single day about how useless I am. When actually I’m not useless. I’m not redundant in this journey, I am the journey. And when we come out the other side whatever the outcome looks like, I plan to celebrate the fact that I made it.

31 Weeks of growing you.

I’m tired. Tired of explaining why things are so hard. Tired of feeling stuck on a loop. Tired of the unknown. Tired of my body failing us. Tired of pain. I’m just so fucking tired.

I’m irritable, I’m fed up of people saying stupid shit to me, shit they don’t of course even know, is stupid – because how can anyone be expected to know what the right thing to say is, when I don’t even know? I’m just tired of all of it. I’m tired of feeling like I have to fight to have questions answered. I’m tired of having my situation dismissed or compared to that of so many others. I’m tired of feeling like I’m broken.

I have maintained the pretence that I’m not depressed throughout this pregnancy, because I don’t want to take more medication, it’s the first thing anyone says when I complain of low mood. Do you need to go back on your antidepressants? – and I feel like saying, please fuck off.

Because I know what depression feels like, and whilst I do feel very low many days, I also have a list of reasons as long as my arm as to why that is and a pill, unless it’s one that reignites my ability to walk, or makes me promises of a healthy baby isn’t going to change that at the moment.

So far I still feel like I have some grip on my mood and reality. However low I feel, I don’t feel like I’m fully depressed yet, but maybe I am and I’m in denial, who knows. I have gotten this far though and I can see it through until you’re born. We will then reassess my mental capacity, once we have a better understanding of my physical abilities.

I also feel like I’m becoming a social outcast – I can maintain a level of strength and resilience as long as I don’t have to talk to anyone. When I speak to people I feel like I either have to explain all the whys and what ifs or I have to appear strong and excited, whilst really feeling neither.

Feeling like I can’t hide myself wincing in pain, like I can’t hide the fact that I am in uncontrollable pain, every single day. Even before you existed I had to navigate a social life around pain and bad days, now I’m starting to feel as though I am incapable of a social life at all, where are the good days? Good hours pass by too quickly only to be met by flare ups of more uncontrollable pain. Most of my friends are amazing, they want to help and include me, they care, they check in, but I still feel like I am bringing the vibe down at every conversation. Like I’m just that person that people would rather avoid. I know I’m probably overthinking it, as you’ll learn, I do this a lot. It’s a work in progress.

We haven’t got long left – so it is exciting in lots of ways, but fear overrides. I don’t know what to expect this time despite having done this before. When I was pregnant with your sister the excitement was more pronounced because the outcome was completely unknown. This time the worry overtakes the excitement because we know how bad it can get. A pessimistic view I know, but in my head it’s also a realistic one. It’s a self preservation tactic, if I expect the worst I’ll be happy when better happens.

I’ve learned some things about you recently that do make me smile. Things like you hate me lying on my right side even though it’s the one I find most comfortable. You kick and kick and kick until I turn back. You don’t like loud noises. Your sister dropped a dumbbell the other day and you jumped with such force I thought you would jump right out of my body. You’re not bothered about baths even though everyone says babies go crazy in the water, neither you or your sister did. You protest after I indulge in too much sugar and you push back now when any one of us prod my bump.

I nearly didn’t write this, this week. It’s maternal mental health awareness week and my feeds are full of recovery stories, whilst I don’t feel like we are any closer to recovery. I know I will recover mentally, because I’ve been in much darker places than this before, but will I ever recover physically? Trauma, whether to the body or the mind comes with very real physical implications that filter into the everyday.

Mourning your old life is a daily battle when it comes to chronic illness and it’s why I find words of optimism so hollow, however well intended.

Still we move through the days, bringing us closer to you, and we hope that one day in the not so distant future these down days will be memories easily forgotten and better ones will replace them.

You could be here in a matter of weeks and I know I have to be strong for you, so I’ll keep fighting.

Baby Cullen number 2. Can’t wait to meet you. ❤️

Maternal Mental Health Awareness Week

A topic so close to my heart and one that I always feel needs highlighting, but also one that I myself am finding particularly triggering at the moment – if you’ve been following my second pregnancy journey you’ll understand why. If you haven’t I’ll explain in short, that I am finding this pregnancy, similar to the first, in that it’s detrimental to my mental health.

Whilst this time round I don’t feel utter desperation and despair, I do feel hopeless and flat. My physical pain has hugely contributed to my mental health during pregnancy. I am so pleased to see maternal mental health reach such heights with awareness, but I feel it’s important to understand how intrinsically linked our physical and mental well-being is. Something that I feel is often overlooked for women who are pregnant and managing illness and physical challenges as well as poor mental health and low mood.

This will be my only post on maternal mental health this week, and the reason for that is stated above – I’m finding it all a bit triggering. I feel so lucky to have come so far on my journey of regaining my strength and mental stability after the birth of my daughter, but equally I feel a strong pull back to that dark time, right now.

There are a few messages that I often shout about in my need to highlight, and want to again here:

You can dislike pregnancy and still want your baby. You can resent the process and it’s toll on you and your body and still feel a deep connection to the life you’re creating.

You can feel sadness and loss at your sense of self in motherhood and still love your children.

Maternal mental health isn’t just present postnatally. It doesn’t just occur during the process of pregnancy or immediately after. It can strike at any time. It can be dark and all consuming, during phases of exhaustion and sleep deprivation, but it can also be triggered during the quagmire of everyday life. When you feel like the old you has gone missing for a while and the responsibility of caring for others takes it’s toll on you emotionally. It can occur with setbacks and regressions in your child’s life, and sometimes it will pop up at any given time it likes.

Postnatal depression isn’t always intrusive thoughts and hiding from the world. Sometimes it’s high functioning anxiety that actually powers you through the days only to hit you like a tonne of bricks when things seem to be going ok.

Depression and anxiety are not always prompted by birth trauma, or tragedy. It can manifest in many ways, sometimes presenting as irritable or snappy, other times as rage, bouts of tearfulness and friction at home. And sometimes it can creep up on you with a dull flatness, you may not even realise you feel depressed at all until the things you used to look forward to in life start to lose their appeal. The things that used to excite you suddenly don’t anymore and everything just feels a bit grey.

When I was pregnant with my daughter six years ago there was no such thing in my area as a perinatal mental health team. It shows great progress that such teams are now in place across the UK helping women come to terms with difficult emotions during and after pregnancy. It has definitely provided me with some reassurance when going through the process again. The only thing I will say that I feel to still be somewhat lacking and this doesn’t just refer to perinatal mental health but mental health in general, is there still isn’t enough preventative measures in place to support people who have a history of depression but aren’t currently depressed.

When I found out I was pregnant this time my anxiety was in full force but when referred to talking therapies I was deemed to score low on the mood charts and therefore not particularly high risk or in need of additional support. Unfortunately this is all too common when seeking support for mental health. I believe I know myself best and after having come through many bouts of poor mental health I feel I’m the best judge of character to preempt spirals. It’s frustrating when you know you could go either way but the support is only in great supply when you are close to crisis.

I’ve found great support this time in grassroots organisations such as Bluebell Care probably even more so than I have in my midwifery team.

Maternal mental health has been highlighted even more in the last year because of the pandemic and if anything good was to come from that it would be that we’re shining a light on mother’s struggling.

There’s a long way left to go and it’s not easy to be candid on such topics – but one thing I do know is that however you’re feeling, you’re not alone. It takes a great strength to open up about parenting struggles because societal judgement is still placed so heavily on a mother. Speaking up is the first step, becoming aware is the next one.

For more information on maternal mental health support please visit Maternal Mental Health Alliance

30 weeks of growing you

With each week my mobility decreases, yours increases. You are kicking those feet like your life depends on it whilst my vagina feels (and looks) like a punched lasagne. (I hope you grow up with a sense of humour because if I stop making jokes I will die)

Thirty weeks of uncertainty and stormy waters.

Thirty weeks of tests and tears.

Of what ifs, of percentages. Of comparisons. Of risks.

Thirty weeks of unanswered questions, of time spent in survival mode, counting down and hope.

You are so precious. So physical. So big, so heavy. The excitement I’ve been holding back, too scared to make room for, is pushing it’s way through my fear. I won’t lie and say I’m not scared, because I want you to know it’s okay to be scared. I won’t lie and say it’s not been horrifically hard, because I won’t lie to you, ever. With the exception of Santa Claus and the Easter Bunny, maybe also that the ice cream van is out of stock, oh and superheroes are totally real too, your dad is mine.

What I will say is, it’s worth it, I know this every time I look at your sister. She is so worth it and her start was hard too. Carrying her felt hard too. It’s harder with you because we have already had a taste of what it feels like when nightmares happen, but we also know how it feels to pull through them.

I wonder sometimes how people manage to love all of their children equally when they love the first so much. With such visceral intensity. However, I know with certainty that I will love you as much. I might love you differently, but it won’t be less. I will love you as hard, and you will probably be as much of a pain in my ass as she was (occasionally still is) but none of that really matters. Nothing diminishes a mother’s love. It is unconditional. I didn’t really understand it before I became a mum. I love my own mum unconditionally, with forgiveness and without limits, but it’s different when you become the mum. I can’t explain it. I can’t make sense of it, I just know you’ll be loved as fiercely with the same primal instinct that is ever present in my love for your sister.

You’re not an accident, you’re not a mistake, you’re not unwanted. Just because I haven’t enjoyed carrying you, I haven’t loved the process, I just don’t love it. I don’t even like it, but I still know how much I will love you, because I already do.

I’m not a maternal person, I don’t brood over babies, I don’t love being surrounded by other people’s children and chaos. But I love my own children more than I have ever loved anything. With such ferocity, that it scares me sometimes.

Being a mum is scary generally, it’s always guessing what to do for the best with nobody able to give you a definitive answer. It’s always wondering if you could of done something differently. I wonder that about the last thirty weeks. I wonder if I had done anything differently would I feel differently, would I feel more able, less disabled? Sometimes I think I could of tried harder to fight through pain, fed you better foods, looked after myself better. I’ve done my best though, the best I know how with what I have.

I’ve tried, and if I’ve learned anything it’s that my best is all I’ve got, and it’s enough. I hope when and if you ever read these, you will know that despite hopelessness and despair, fear and pain, the goal never changed. The goal has always been to add you to our family someday, even before we knew about it. To love you, to bring you into this world. A world full of uncertainty, but one in which you will be loved with certainty.

The doctor has told us now that you might come early, they’ve told us you might have a hard start, they’ve told us a lot of things that we didn’t want to hear, lots of things that impact both you and I, but we can’t predict what will happen. So I’m holding out for the might nots, because with risk comes worse case scenarios, and we aren’t in control of those, but with hope comes dreams, and we have big dreams for you.

Thanks for sticking with me for these 30 long weeks. Reminding me that every sacrifice, every ailment, every ‘bump’ in the road, brings me closer to you.

To my friends (and family) who don’t have fibromyalgia.

Hey,

Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it ‘gets old’ boring even, to hear me talk about it ALL. THE. TIME. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is…. I’ll always have this condition now.

A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathising, I’m learning to be ok with that. I have to be. Yes it hurts my feelings, even when I don’t tell you it does, and when I do.

It hurts my feelings when you ignore the honesty of my illness related posts, and only engage in the cute pictures of my kid. It hurts my feelings when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything.

You see, this illness makes me irritable, I get angry with my body, often. On some days, better days I might seem totally ‘normal’ I might even resemble ‘the old me’ but please know, that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today, might affect me tomorrow or days later, for days, sometimes weeks after the event.

I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you, I’m not doing though, is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterwards. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, that you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me.

I am not broken, not entirely, I’m just bent, learning to live again (almost a quote from a P!nk song there) Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you I’ll always be able to fulfil them. Just know, when I make them, it’s always with the best intentions. I’m trying, all the time, new ways to manage this condition. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am.

I wish I could go back in time and do more things with you before I got sick, but sadly time travelling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain.

If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before.

If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one. Like life itself – It’s a work in progress. And I’m forever trying to be better than I was yesterday.

Love, me X

29 Weeks of growing you

Every time I change position now I am reminded that I cannot move. Every time I am left alone with your sister I am frightened, because I don’t feel like I can care for her properly anymore. It’s scary, it’s upsetting and I wonder how I will ever care for you. The loss of power in my limbs makes me feel vulnerable. Insecure. I feel like if there was an accident or a fire how would I escape?

When we found out I might need a cesarian I cried more tears. I got frustrated with your dad and anyone else who shrugs off this very real concern of mine with a ‘everyone has them’ attitude. I am not everyone. A cesarian is just one thing on a list as long as my arm to worry about. When I was pregnant with your sister I begged for a section, I didn’t think my pelvis would withstand a vaginal birth, but it did, and I recovered, after a horrendous infection that was so gross the hospital room I was in, stank of blood. Still this goes no way to reassuring me this time, because I am so much sicker now. So much weaker. So little fight is left in my swollen body.

Then I remember that all of my concerns are irrelevant in comparison to keeping you safe and I know I will do whatever it takes. I know I will suffer the trauma on my body like I have for the past 29 weeks and I know I’ll do it, not without complaint, but with conviction.

I have been vague in my conversations with people because I am irritated at their optimism when I feel stuck in one place, with tunnel vision. Their kindness is both needed and hard to process at the same time. Nobody can say the right thing. I am snappy. I am blinkered and blinded by my own problems. I’m being unreasonable, I’m not making sense, I’m emotional. It’s not intentional, but I can’t control it. I feel angry. Angry that this is happening to me and my plans for an amazing second pregnancy that I would cherish have been snatched from me. I am also eternally grateful. Grateful that despite all of this you are still with me. Still showing up, still kicking and your heart still beating. Still waving for scan pics and defying the odds.

I don’t know what I will do if this all works out ok. I feel like I’m in survival mode and if I do survive, and I hope I will. Maybe then I’ll breathe a sigh of relief. Maybe then I’ll tell people thank you, I’ll share their optimism and have more faith. So many months of uncertainty have left me in fight mode. But fight mode isn’t a health place to be.

I’ve been avoiding people, then desperately seeking comfort in company. The weekend we had friends over and it was so lush even though I absolutely hated the idea of people seeing me as I am now, unable to move, fat (I know I’m pregnant but I’m still fat) your sister played all afternoon, laughed and reminded me, that I have to be strong. For her, as well as you. I have to fake it till I make it, somedays are easier than others but everyday I have to show up.

This morning another friend came and brought lots of baby clothes for you, we’ve ordered some new furniture and your grandad has promised to do some work for us before you arrive. We’re going to start nesting soon, so far your dad has done all of the housework (still a shit hole) but he is so busy and I feel so useless and lazy. I feel so stripped of my personality somedays that I don’t even know who I am, other than a sick person who also happens to be pregnant.

Now I’m at the end of this blog, I feel lighter, I feel as though I’ve offloaded and maybe tomorrow will start with the similar optimism of today, and maybe it’ll be better, maybe I’ll laugh a bit more.

Your sister is holding me up at the moment, she doesn’t know it, but her excitement and joy at your pending arrival is a tonic. Her asks for cuddles and little whispers into my bump are sacred. She loves you already, we all do. So let’s do this, don’t quit on us now – we’ve got this.

Third trimester

You made it.

You’re on the homestretch now.

Is the baby ok…..?

When I was pregnant with my daughter I had chronic migraine from the minute I found out I was expecting. I was diagnosed with SPD at 16 weeks unable to walk and that was extremely painful. I soon became very depressed and ridden with anxiety and intrusive thoughts. By the third trimester I was bedridden and had developed preeclampsia. We were induced later, she was born in withdrawal from antidepressant medication. Her first year was defined by trauma and towards the end when she was recovering, I was being diagnosed with fibromyalgia. As she grows, and continues to thrive I feel like with each flare up I die a little inside.

You’re so strong.

Lot’s of people go through complications and come out of it okay.

Stay positive.

It’s a myth (I believe) that people come away from pregnancy and birth trauma ‘ok’ we all move through trauma very differently, but what your mind is able to process your body fights against and you don’t always fully recover. Trauma and stress have a lasting impact on the physical health of a person.

This week I turned 28 weeks pregnant. Last week I found out I didn’t have gestational diabetes and I cried tears of joy, because I didn’t think I would cope with more complications. But every glimmer of hope is followed by a plummet, a sense of doom. Here we are today and my diagnosis and risk catalogue, continue to grow and the list of complications multiply again. I’ve again suffered migraine from conception, got diagnosed with SPD at 16 weeks, again. My blood pressure has been high. I’ve had a reoccurring shingles infection that isn’t responding well to treatment. My whole body is in a constant flare, I’m in agony, not just occasionally now, all of the time, surviving on the very minimum of pain relief. Some days I can’t move my body at all. This week I turned up for a growth scan only to be told I have a low lying placenta (placenta praevia) they’ll book another scan for 36 weeks but and I quote, ‘if you make it to 36 weeks.’

Don’t have sex – I can’t even move my legs hun let alone spread them.

Don’t do…. (insert anything) here.

You might need a cesarian.

No big deal right? Women have c-sections all of the time. Except it is a big deal for me because my body is already broken and major surgery only hinders it’s recovery further.

But the baby is ok, right?

My baby, the one I’ve been fighting for. My second baby, is currently safely cocooned inside me. But We don’t know if he’s ok, not really. I find it odd that this is the first question people ask when so many babies suffer complications late in pregnancy and post delivery. I also feel like it unintentionally goes towards invalidating my struggle. The baby’s fine so therefore you’re fine, stop moaning. We know he has a 1 in 3 chance of suffering the withdrawal similar to his sister, albeit to different medication. We know he’s at risk of infection because my body isn’t fighting them off well. We know that he is at risk of being born prematurely. We hope that he will come out of this unscathed. I am doing everything I can to ensure that happens, but I am not in control of this situation. So I can’t answer the question with anymore certainty than my doctor can answer me.

As a family we are doing our very best to survive, and surpass the finish line, in one piece. We are trying to stay focused on the outcome of a healthy baby, but we are definitely not okay.

My daughter who can’t wait to meet her brother has no understanding of why her mum is ruining all her fun by not participating in anything. My husband is now my carer, and he’s not getting paid, not even in kind.

I am thirty three years old and I feel like my world has been tipped on its head for the 100th time in my life, except this time I have no control, no way to turn it around. I don’t feel brave or strong. I feel petrified. I feel weak. I feel out of control and I feel bone weary, exhausted! As though cement has been poured into my body by mistake and set overnight.

I don’t like the idea that we must keep calm and carry on, because I don’t feel calm. I’m carrying on regardless, because I have no choice. Not because I’m not broken. Or because I’m coping better than I make out. It’s because carrying on is the only option. There’s a saying that goes, you don’t know how strong you are until strong is your only option.

I hope once our baby arrives we will look back on this time like we look back on that time with his sister and we will be okay. We will have all survived, together. We will be happy, and we will have reasons to laugh. I hope that I will regain some control over my health and days will look brighter again. Hope is my coping mechanism. I hope, because to give that up isn’t an option. You might be wondering why I continue to share all of this information, why I’m not holding out to share better news, and the answer isn’t a simple one either. I write to hear myself think. I write to process my thoughts, and to unburden myself of the doors negative thoughts lock when trapped inside my head.

I’m not a person who believes her suffering trumps someone else’s. I know other people have it worse. I know I may come away from this beating the odds and better, but I don’t share for your attention or your sympathy. I share for my own peace of mind. I share so that when we come out the other side, we can look back and know we survived.

28 Weeks of growing you

After your sisters birthday it was my own. An event that used to have such a big place in my life but that has dwindled in importance over the years and many are now spent in recovery after the buzz of your sister’s celebrations.

We have been out a few days, me on my scooter and had some fun with it too. There’s no denying that it takes it out of me so significantly now, just popping out for a few hours leaves me feeling like I’ve ran a marathon. The SPD is worsening as you grow, and for the last few days I have been completely unable to get myself up in the mornings. Your dad is having to lift me from bed and before I’ve even got my feet on the ground I am crying in pain and it’s hard. It’s not in my nature to be this dependent on another person it’s also scary and feels like another string in my bow of can’ts at the moment.

On the plus side, and there have been pluses, mentally I feel a little less erratic and panicked and more prepared for the worst in terms of my health and mobility. We have had some changes made to the house which is enabling my independence whilst you’re inside me, and will hopefully continue once you are here. Grab rails are appearing everywhere and though cosmetically unsightly, they are providing me with much needed independence.

We will see you again this week, on a scan and talk to the consultant about your arrival. I hope we’ll be able to avoid going overdue with a planned induction rather than a cesarian, just because my recovery is already a worry, but what will be will be. Now things are opening up again and restrictions continue to ease, I hope extended family will make more effort to be involved and help with your sister if only to take the onus off of your dad. He returns to work this week after a week off, being without him will impact me again. He has been so hands on and it’s fair to say I don’t know what I would do without him how I would of gotten through these months without his undivided support. Your sister is going into holiday club for a few days this week to take the edge off and we’re lucky that she is a sociable little darling who’s happy to make new friends.

She went quiet for a while asking about you but her interest has piqued again and we are getting back to our daily chats and cuddles, though your kicks don’t seem as exciting to her at the moment, your pending arrival definitely still is. Onwards we move through the quagmire of a loose routine and no real structure, getting by on a wing and a prayer, but getting by we are with a lot of love and a little help from our friends. 💙

Call for NICE to play nice with chronic pain sufferers!

For full transparency here is the article NICE published in relation to using alternative methods to treat chronic primary pain that has no known cause. NICE recommends

For the most part this starts well, offering people a range of alternative treatments in place of a prescription doesn’t sound so bad does it?

The issues here though, are plenty if you do in fact live with chronic pain. Many sufferers will have a) already tried alternative treatment options. Or b) Are still awaiting a diagnosis in the first place.

We know the opioid crisis is real, we know there’s a risk of addiction and dependency, most of us would give anything for adequate relief found elsewhere, but opiates aren’t the only treatment option available that’s in dispute here. Standard analgesics such as paracetamol and Non Steroidal Anti Inflammatory Drugs are also being branded ineffectual. What is particularly damaging is the statement from Dr Crisp that suggests pain relief doesn’t work to treat chronic pain, and antidepressants do.

“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them”

I’ve come to know many chronic pain sufferers that are indeed already prescribed antidepressants as an addition to pain relief for chronic pain. I’m yet to know any that find these effective in place of further treatment. I also know many people who benefit from holistic therapies and exercise and diet for pain management. The problem here is the assumption that everyone or nobody benefits from one type of treatment. NICE make some very encouraging points in the idea that collaborative discussion with patients will play a role in deciding treatment, sadly what it then does is states pain relief won’t be offered initially, leaving many people awaiting a diagnosis in agony.

If you’ve suffered chronic pain ongoing and for a long period it’s likely you will be hoping for a diagnosis. NICE addresses here that the prognosis isn’t always simple and a true diagnosis other than pain itself can be hard to find on occasion. Another of my issues with this statement is, people who are seeking diagnosis will be further fobbed off and advised their pain has no known cause without a full and thorough investigation being carried out. It also indicates that addiction to painkillers is commonplace, as opposed to people taking them in order to function and live a more fulfilling life.

Furthermore suggesting antidepressants come without similar risk or harm is also damaging. I have taken antidepressants and opiate pain medication on and off for twenty years, I’ve experienced withdrawal for both and I personally found antidepressant withdrawal a much more hellish experience, that said I don’t speak for everyone and I’m fully in support of medication being commonplace to treat mental health issues. What I’d also like is to not be branded or implied an addict for taking medication to treat pain.

I don’t dispute that alternative options to medication should be commonplace. My fear is the removal of treatment or the lack of prescribing in the first instance will lead to untold suffering and the search for pain relief elsewhere. Potentially from illegal drugs and under researched off label medications. You only have to look at Twitter to see the outrage from people in the chronically ill community to understand that this will impact us significantly.

As a mother and an expectant one it would be idealistic to not have a need for medication at all, but I like many other sufferers have tried countless attempts at reduction and abstinence. It doesn’t work, because my pain is physical and it’s real. To suggest psychological therapies in place of a prescription is another way of suggesting our pain is psychosomatic and not physical. Yet upon first analysis you couldn’t possibly know that to be the case. I don’t disagree that better information needs to be given as standard, that alternative medicine should be available on the NHS as standard and that exercise and diet are all impacting factors. I do however, disagree with the statement suggesting pain relief doesn’t work for chronic pain. Granted it won’t work for everyone, and granted NICE have advised individual plans will be made, but how many of us already feel judged on how we manage our health? I know I do, and I know hundreds of other people that do too. What would have been really nice is for NICE to include alternative therapies as standard without pillshaming people already taking medication or those seeking adequate investigations and subsequent pain relief.

Yes I have launched a petition and yes I have indeed read the guidance offered and I still feel strongly for the need for this advice to be overhauled and at the very least reworded in a more sensitive and less ableist fashion.

Not everyone can exercise. Not everyone can access alternative health care and not everyone will become an addict when treating their pain with painkillers even long term.

The petition is currently in review and will be shared when and if it goes live. I’ve also emailed NICE directly for clarification and I hope they are able to address the concerns of those of us that have voiced them.

I also feel the need to state: I am not suggesting everyone take pain medication for the rest of their lives to treat chronic and ongoing pain, I’m simply asking that we don’t have the option taken away from us.

PMDD and pregnancy

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

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

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

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

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

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

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

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

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

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