54 Days postpartum

23.08.21

My daughter was on her way to bed last night when out of nowhere panic hit me full force. My son, lying in the crook of my arm, suddenly started to spit milk out from the sides of his slow flow teat, and I realised, the hand that was holding his bottle was shaking. I felt hot, from the feet up, like a flush, my brain scrambling for grounding thoughts that just couldn’t make their way to the forefront of my mind. It’s coming I thought, knowingly.

My husband comes when I call, and holds me tight. Our son, bewildered at why he’s suddenly had his bottle snatched from his mouth, our daughter, obliviously cleaning her teeth in the bathroom above our heads. Breathe Shaun tells me. Why am I like this???? I sob, trying to catch my breath. You’re not like anything, Steph. It’s a panic attack and it will pass. He reassures me, never letting me go.

It’s been 54 days since I gave birth. Our son will be 8 weeks old on Thursday 26th August.

This isn’t a birth story, because my birth story is too long, the trauma that surrounds my pregnancy will not shrink into an Instagram caption or a rushed blog post. This is a progress report.

When my son Kaiser was born, and during the days preceding, I was in a constant state of panic. I would have moments of calm, but they were fleeting and hard to grab onto. I’ve plateaued at a panic attack approximately once a week now. I know that a large part of their occurrence is directly linked to hormone sensitivity, yet that gives me no control or reassurance regarding their assault on my life.

I’m currently under the care of the most amazing perinatal mental health team, they are some of the best medical professionals I have ever come across in my entire life and I’ve met a few. Sadly this support was massively lacking during my pregnancy – but that is a story I’ve semi already told and one that would take up the duration of the rest of this blog. The point, is that I have some amazing people in my life at the moment helping me heal from acute anxiety, intrusive thoughts and various states of panic. I genuinely don’t believe without their consistent support during the postpartum period, that I would have gotten these bastard attacks down to once a week on my own.

The trouble is, I’m still very much in a state of fight or flight. During the periods of calm, I am logical. In fact I am probably calmer than I’ve ever been in my life and generally laid back (a term probably not often used to describe me as a person) but I can’t stay there, because as quick as I’m calm, a storm cloud opens up the heavens on my head and I am ready to flee the country as though I’m being chased by a hungry tiger.

However, during those moments of calm I have reflected. I have corrected, and I have made changes to my mindset. Living with chronic illnesses as I do, migraine, fibromyalgia, PMDD etc it’s easy to become all consumed by pain and suffering. The shift in my mindset has been that I don’t want to be consumed by this suffering anymore. I know I am going to suffer, bad days, sometimes bad weeks and maybe even bad months, but I don’t want it to consume me. I want change.

My community nurse said to me this week you have to do different to feel different and so I’m doing different. Every day I’m fighting tiny fires of fear. For example, I’m frightened of being alone with my kids in case I have a panic attack, but I’m staying alone with them anyway, because I know if I avoid this fear it will only grow.

I was absolutely distraught about Shaun returning to work after paternity leave, but I knew if he delayed that process I would be as scared, if not more so, when he eventually did.

I’ve been avoiding books and television that might be triggering or that contain storylines of anyone with mental illness, but very slowly I’m reintroducing those things into my life.

I’ve been too afraid to walk or drive anywhere on my own because of how much pain I’m in. What if I get stuck with the kids? And then what if whilst I’m stuck, I panic?

I’ve been too scared to enjoy days out for fear of repercussions on my body, or to go places more than half an hour away from my house in case I panic and need to flee, but slowly I am doing both.

I’m making this sound easy, and yet it’s been the hardest most hellish experience ever, doing things I’m so desperate to avoid goes against the grain. But I’m using these examples to measure my progress, because it’s so easy to feel as though I’m making absolutely no progress at all when anxiety strikes.

I want change. I want my life back. And I have to do different to feel different. I have to be open to the idea there are positive outcomes in life, because if I don’t open myself up to this possibility, I will forever be living half a life.

Perinatal anxiety and me

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

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

Can I really do this again?

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

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

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

What if I have a break down?

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

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

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

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

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

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

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

I really wanted to like it this time.

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

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

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

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

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

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

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

32 weeks of growing you

TW: Perinatal anxiety & depressive thoughts.

Too many tears. Too many days in bed. I’m done now. I have nothing left. Except I’m not allowed to be done, because there is more time left, there is more to do, there are more weeks you must stay inside of me to keep you safe, and despite feeling like I am losing my fucking mind and having no control over my body, my goal is still to keep you safe. You’re still the most important thing.

It has been over four months now that I’ve not been able to walk, drive, leave the house alone, spend one on one alone time with your sister. Four months of being told over and over again ‘it’ll all be worth it’ and that ‘it’s not long now’ it is long, it feels like fucking forever. Every single day feels like ten years. My skin feels like it’s crawling with insects. I cannot move without feeling like I’m rolling around in glass. I have put on so much weight, because I can’t move. My anxiety is through the roof, I am getting no sleep, and I cry all the time. What will I do when you come? How will I cope?

Nobody will tell me what happens next, I still don’t know if I will regain mobility and if I do, how long it will take. I’m just waiting, and wading through treacle, with limbs that don’t work. I feel like I can’t plan anything, look forward to anything. I feel physical pain so acutely, but I’m mentally numb.

People message to ask me how I am and when I tell them, they don’t reply, because they don’t know what to say. I think it’d be easier if they stopped asking, because it’s worse to open up and be vulnerable, only to then get ignored.

Everywhere I turn I keep seeing messages of hope, speak out, don’t suffer in silence, etc etc…. it’s everywhere, but it doesn’t feel real, because when you do speak out, when you do open up, people judge you. People think you should be doing better, feeling a certain way, being more grateful. People give you their opinion on how you should treat your mood. They tell you what they think, they try and fix you, they tell you that someone else has it worse, and they aren’t really listening.

It’s the honest, ugly, truth that nobody wants to hear. Not really. They say they do, but they find it uncomfortable. People tell you how well you’ve done when you’re out the other side of something. When you’re in it, they don’t know what to say, and I do get it. I really do, I understand, because it’s hard to support someone whose in a negative place. But sometimes you don’t have to say anything, you definitely don’t have to ask questions or have answers, sometimes you just have to be available to listen.

I don’t want to feel like this. I don’t want to be ungrateful or feel like a burden. It’s not a choice, it’s a lot of self doubt, and it’s a reaction to a difficult situation.

With all this in mind, I’ve been working really hard to try and change my mindset today. I know it’s only me that can do it. I know I can’t expect to be rescued. After days in bed over the weekend, today I got up. I had a bath and washed my hair, it was an exhausting task, but I know it helps. I put on clean clothes, I had soup for lunch instead of binging on crisps and junk. I took painkillers, because I needed them and tried not to feel any guilt. I watched a comforting film that felt like a hug and downloaded a feel good book to read. I’ve drank plenty of water, and the cloud is lifting.

I know I can do this, I know I have to do this, I know I’m strong enough to do this, but sometimes I don’t feel like doing any of it.

I’m downstairs now, waiting for your sister to get home from school, with a smile plastered on my face. I will watch another film with her, talk to her about her day and she will give me the hope I need to keep going and do the same tomorrow. I won’t sleep today, because if I nap now, sleep will evade me again tonight, and I need sleep. I need it to allow my brain to switch off. I need it to keep going. I need to enable me to focus on the positives, and they are that we are lucky, we are lucky to have you and I want to feel that. I want to feel joy override all these other emotions. I want to feel better, excited.

The below pics were taken less than 24 hours apart. It’s hard to believe that the extremes can peak and trough so rapidly. But I have to remind myself that it doesn’t matter what other people think, I’m surviving a hard and long journey, and I’m doing it whilst keeping you safe. I’m doing my best. I’m going to be okay, and so are you. ❤️

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.

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.

Acceptance isn’t linear

Entitled with contradictory statement maybe? Surely if you accept something, that’s it? Accepted, done, move on. Well….. I disagree.

The reason being is, take grief for example, you might accept someone is no longer physically on earth for you to love, but find it hard to accept the feelings that come with that knowledge. It’s not over just because you’ve said aloud you accept it. You can acknowledge a situation, tell yourself you accept it, and then change your mind. It’s not back tracking, it’s reality. You may start to accept one thing only to be faced with another, making your acceptance of the first, harder again.

I use grief as a prime example, Miranda Heart comedienne and Myalgic Encephalomyelitis sufferer recently said ‘With chronic illness comes a daily grief’ and nothing has ever rung truer with me.

I accepted my diagnoses a long time ago, because I’ve lived with symptoms for so long that there was no alternative to accepting their presence in my life. True and absolute. However, everyday brings with it it’s own challenge, every new symptom overshadowing my acceptance of the old ones.

With pregnancy too, because I’ve accepted I’m a person that doesn’t enjoy pregnancy, doesn’t cope well and doesn’t feel well throughout, but that acceptance doesn’t stop my grief. It doesn’t stop me wishing things were different or wanting to trade my body. You can accept and acknowledge a situation without enjoying it or thriving within it, and the goal posts can move.

I know during pregnancy my only goal is to get myself and my baby to the end in one piece, but once my son is here, the goal posts will move again and it will be back to getting through the days with chronic illness, because there is no end to them. There’s no one and only goal. Life is interchangeable and acceptance shifts. People tell me right now, that it will be worth it when my baby is here, like I don’t know that already, and they tell me to hang in there like it’s possible to do anything else.

They may or may not know, I have been hanging in there everyday for the last 5 years and more. Of course I get good days, though they seem fewer the older I become, but I don’t all of a sudden become well because I’ve had a good day. I don’t get to walk around with the knowledge that there’s only so long until better days are coming, because my good days can be equivocal to someone else’s worst.

I feel I can hardly shout this from the rooftops on a daily basis because then the few friends who have stuck with me would likely also tire of my complaints, so I have no choice but to accept my situation. Somedays I do it with grace and positivity and sometimes I do it reluctantly and with frustration.

When it comes to health of any kind I don’t think we ever agree to the offer. We look for a cure, we look for sustainable treatments and ways to better our situation. Never fully assenting to the offer of a diagnosis.

It’s true you can’t fully understand someone’s situation until you’ve walked in their shoes, and that also means what is easier to accept for one person may be harder for another. We can’t ever know how we’ll deal with something until it happens to us. We can’t ever fully accept a situation until it’s been lived in, and nobody can be blamed for that. It can’t be expected of any of us to accept everything someone else experiences but we can choose to accept their version. To believe them.

One thing I have learned about acceptance is, it looks different for everyone, including myself, for some occasions it brings peace and others it makes me want to fight back harder.

It’s not linear. It’s not complete and absolute. But it can be a starting point.

Week 22 of pregnancy, carrying you, baby #2

We didn’t know what you’d be. We weren’t sure you’d show up on a scan as healthy. Our twenty week scan was nearly two weeks late and it made us impatient and anxious. We still don’t know what the outcome will be or if you’re truly ok in there. All we know is that you’re wanted.

Now I can no longer walk again it’s difficult to associate pregnancy with positivity. It was the same with your sister, causing me pain so difficult to overcome that I never really know what each day will bring. We’ve been left to our own devices by the health care system. Lots of people told me it happens with second babies. You’re an assumed pro by number two, you don’t need any support. Except I do need support. I do need reassurance. I am not a pro.

You present me, your mum with symptoms similar to the ones your sister did, but it’s different this time. They keep telling us about the risks to you, but don’t really do anything to help us overcome them. Maybe there’s little they can do, or maybe they expect me to know, I don’t. Medication that I need to function, to care for your sibling too, means you might need help when you’re born.

They have offered me mental health support that has been good, but physically I’m in worse shape than ever and I still have to care for your sister, so it’s hard.

We weren’t amongst the chaos of a pandemic when she was on her way. This time our support has lacked and your sister has been home for most of it. Waiting for your arrival with baited breath. With hope, but also with boredom. She longs for a playmate but she doesn’t fully understand the implications of pregnancy and why her mummy has become less fun.

Me, your mum, I have a few health issues already. Ones that were present before you were even a thought in my mind, a seed in my belly. Ones that haven’t gone away, that never really will, but that we’re working hard to escape. We love you already. That much we know, but each and every day that we will you to grow, we are scared that you’ll have a hard start. That your life won’t begin with all of the joys of a hot July summer. We worry that I might not be strong enough to care for you. That the help we need might not be available or accessible. Maybe we should have been more prepared but you showed up with two lines three weeks after my last period and we weren’t prepared, all we knew is that we would keep you.

I’m off work at the moment. Pregnancy isn’t kind to my health or my mind. I was struggling to hold down a job before you came along, but I’m trying. I fall into a category of disabled that isn’t well recognised or even always believed. I don’t get financial help for my disability and your Daddy works very hard but we aren’t wealthy enough that I don’t have to work. We are looking at ways to accommodate my return, and we have to hope that I will be well after your birth. Well enough to care for you. The trouble is I get periods of wellness that don’t really last. They are usually days and not weeks or months. I hope you don’t grow up having to care for me. I hope that I will always be able to give you what you need.

I love you. I love your heartbeat and your tiny feet. I love your kicks and I hope that when you arrive you will know that whatever challenges we face, my love for you will continue to grow.

I hope that you and your sister will always know that Mummy tried. She will never stop trying to give you a good life and will always be there to share it with you.

What’s it like to be half way through a high risk pregnancy?

Lonely. Because everyone experiences pregnancy differently and when you’re more worried than you are excited, people think you’re being negative.

Hopeful. Because hope is all you really have. We can’t change the future or the past but we can hope for better.

To get excited could mean to jinx it. I don’t want to rave about how excited I am when I still can’t fully envisage a happy ending.

Only another 4.5 months to go, I can do this.

Oh shit another 4.5 months left of this, I can’t do it anymore.

What does high risk mean?

Different things for different people, even pregnancies for mums without underlying health issues come with environmental risks. Sometimes the risk will be more prominent for the mother and sometimes for the baby. But risk factors can be present for both.

What does in mean in my case?

For me, it’s meant the risk of long term immobility because my Symphis Pubis is at risk of rupture and I can no longer walk. It means another 4.5 months minimum of immobility to go. If the SP ruptures it could mean further more extreme long term disability, loss of mobility, incontinence and need for surgical intervention.

Preeclampsia. You are more at risk of preeclampsia if you had it during a previous pregnancy, which I did. I have had also high blood pressure throughout this pregnancy along with chronic migraine. Migraine can be an indicator of preeclampsia and I’ve had one every 3-4 days for the last 22 weeks. So you can imagine the worry is ongoing, and the risk of early onset preeclampsia is higher. Survival rates for babies increase significantly if preeclampsia is developed later in the pregnancy.

Withdrawal. 1 in 3 babies exposed to medication in utero are at risk of being born with Neonatal Abstinence Syndrome. Ciara was born with NAS from antidepressant medication. I no longer take antidepressants but I still take medicines that I need to be able function medication that I will be on for the rest of my life in all probability. I take more medicines than I was taking when pregnant with Ciara so our risk is already much higher this time.

Underlying health conditions. Though Fibromyalgia & Migraine don’t directly impact the baby during pregnancy, the reduction in medication along with hormonal changes exacerbate symptoms drastically, and I have spent the last 22 weeks in pain, every second of every day. There are no ‘good days’ we are getting good hours and that is the best we can hope for. We know pregnancy is impacting my health, but we don’t know what it means long term.

When you tell me it’s not forever I am reminded of how long I have left to go being unable to walk, dress myself and cook, and that actually as a functional human being I was already struggling. A positive mindset is very difficult to hang onto when you lose your sense of self through physical disability. Your mind knows what’s going on but your body doesn’t do what you want it to.

When you tell me you’re excited for me I’m reminded of how scared I am. I’m reminded that I too should be excited, instead I’m fearful.

When you ask how’s the baby? I’m reminded that I’m their house and I don’t know really how they’re doing, not really, because until they are here and in my arms I won’t know if all of the above risks have impacted their development. I wish you would ask me how I am instead because that’s a question I can answer. But when you do and I’m honest I feel like it’s the wrong answer and I’m a burden, so again I feel forced to stay optimistic about something that scares me.

It’s been 22 weeks of anxiety, worry and physical disablement for me and though we have hope, hope is still all we have.

Nobody knows what to say so they stop saying anything at all and some might question why I even bothered to get pregnant in the first place if all I am going to do is complain. But my complaints are not born out of a dislike for pregnancy. They aren’t because I don’t want my baby. They are born out of fear and worry and the inability to fix a broken body. They are born from exhaustion, and guilt and trauma.

I do need help, but I won’t ask family and friends for it because it makes me feel like more of a failure and because I know that every single person in the world right now needs something. I know that people are all going through stuff, maybe worse stuff like dying and losing loved ones and everybody’s mental health is in a state of decline, so what makes me special? Nothing.

So why am I speaking up? Why don’t I do my wallowing in private? Because I still want to feel connected. Because I don’t want to be the person who suffers in silence anymore. Because if it was my daughter going through this I would want her to feel able to open up in whatever form that helped her, and incase you’re new here. Writing is what helps me.

Today we found out the gender of our baby, and all I could think was at least they’re alive. Grief does not only come from loss, I am grieving the excitement I want to feel, I’m grieving the process, and I’m grieving past pregnancy and birth trauma that still haunt me vividly whilst I wait for the arrival of my second child and hope that when they get here I will be strong enough to keep them safe. I am grateful that we have gotten this far, and I am hopeful that will can get to the end.

I’m grateful for a little girl who can’t wait to find out if she’s having a brother or sister and who has enough hope and excitement for all of us.

A letter to myself.

I wrote this because I had to make sense of my thoughts as mother and an expectant one, one who is trying to find the strength to be both whilst battling the demons that are chronic illness and mental health.

Reach out they said, so you did, and it didn’t immediately help, and when it didn’t help people stopped reaching in. You are not their responsibility, this is not their fight, and they have their own shit going on. In the middle of a pandemic everyone has their own shit going on, some worse than yours. People can’t take on your shit too. They don’t want to, they shouldn’t have to, so what are you supposed to do now?

You have spoken to your doctor, you’ve got yourself in touch with organisations that can help support your mental health, but your physical health is declining further, your hormones are sending you crazy and you’re in limbo. You’ve requested help, but there’s no magic pill, no imminent cure for your troubles. So what happens next? You’ve written a thousand blogs, almost as many poems, you’ve cried, screamed and forced yourself to calm.

Keeping busy helps, keeping moving, except you can’t do anything because you’re immobile. Stay positive, think happy thoughts, so you try, really hard to do both but your mind is clouded in worry. You wonder sometimes if you have the strength to be the person everyone needs you to be. To get back some of your fire. You’re losing interest in the things that have previously brought you joy, like reading, and writing, you feel blocked. Getting outside is increasingly difficult and because you’re not going anywhere you’re not getting up and ‘ready’ because your whole body is racked with pain you’re not focusing on getting outside, it feels too hard.

You know you need to nourish your body to give your growing baby what it needs but even eating is becoming boring, a chore, you don’t have the ability to stand at a countertop and cook, you can’t be bothered to decide what to have next so takeaway’s are your go to, but they’re distorting the view of what you see in the mirror. Your need for medication increases with your pain and with that comes more guilt because it’s not just about you anymore.

You tried to do ‘yoga’ and got stuck on the floor for an hour with only your four year old home. You tried to shower but you can’t stand so even cleanliness is taking a backseat. You have to depend on your husband to help you in and out of the bath and you feel your self esteem being crushed further, your sense of humour no longer able to gloss over the hard parts with a funny anecdote.

People care, you know that, but they don’t know what to say, so they stop saying anything. You feel like a shit friend because you know your life is consumed by your disability and as much as they can’t take on your burdens you can’t take on theirs either, so thats another stick you can use to beat yourself with. You’re still trying to be everything everyone needs you to be but it’s draining. You feel like your lack of positivity confirms your worst fears – that you can’t be saved.

You feel more connected to strangers you talk to online than anyone you know in real life, because strangers can’t judge you in the same way friends can. They don’t expect you to man up, or try harder because your lack of effort doesn’t impact them.

You spend most days led down trying to find a focus, trying to be better, to do better, to find some joy in anything.

Glimmers of hope come from your loved ones. They carry on loving you despite your struggles and your children carry on depending on you. You know that without them, your life doesn’t mean all that much to you, but to them it’s everything it means everything, you are their everything and so you snatch the glimmers, you pocket them, and you remember that this period in time isn’t forever.

Your life isn’t what it used to be and you grieve it, desperately, sometimes so much that it physically hurts, but you’ve grieved it before and you’re still here, you still have a life. You still have a future. It’s a new version, and not everyone will walk your new journey with you, not because they don’t care (that’s just your brain telling you that) but maybe because they don’t understand and your own acceptance of the things you can’t change takes time.

Learning to live a newer life, a more conscious life, a life that has limitations, isn’t easy. Sometimes the grief will be daily and feel renewed, but someday, in your future you will look back on this time like you’ve looked back on all the other hard times, times you thought you couldn’t live through and you will know that you survived it. You survived it because you put one swollen foot in front of the other, because you held on when you thought there was no hope for you, and you found a way.

You know with certainty, that you have grown. This is a set back, this is not a failure, your health has declined as a result of you trying to do what’s best for your baby.

So Steph, the message is clear, when you really aren’t ok and you feel like you’re alone with your troubles, don’t take it day by day, don’t wait for tomorrow to be better, take it hour by hour, do the things that you feel able, even if that is nothing, because it won’t always be nothing. Each day that you wake up is you doing something. You’re surviving, and when you find a way to survive you can find a way to thrive.

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