What does family mean to me?

It’s no secret that I was abandoned by the man who fathered me, whilst I was still a tiny mass of cells in the womb. When my mum gave birth at 28 weeks with me weighing just 2lb 10oz, she did it alone.

My father has at least 3 other children, two he had with a wife, and another one of me, born out of wedlock and cast aside as a mistake.

I never really respected (I say respected as opposed to understood, because I still don’t understand) the magnitude of what it must be like to be a single mother, until I became a mother myself. I became a mother with a solid partner, I’m becoming a mother of two with a husband. I have no idea what it’s like to parent solo, and hopefully I’ll never have to find out but I have nothing but admiration for my mum and the many other mothers that have no choice but to face the challenges parenting brings on their own as well as the ones who choose to.

We can be a bit of a dysfunctional family to be honest. In a conventional way. For whatever reason I’ve drifted from extended family over the years. I don’t have close relationships with my aunt and uncle, and very few of my cousins. My sister and I couldn’t be more different. There’s ten years between us and she had a different upbringing to that of my own, but we are close and I love her to bits. My mum and I are best friends but we do clash occasionally, when we do it’s a head on collision. That said I don’t know what I would do without her. We communicate with each other very well and have a mutual respect, as well as a deep and unconditional bond.

My husband is quite a quiet man, unless he’s had a drink (which isn’t often) when he becomes a bit of a clown. He doesn’t stress about lack of closeness to family or friends, where as I keep mine really close and feel absence like it’s abandonment. He is reserved with his feelings, but doesn’t worry about what other people think of us ever, where as I worry about everything. Not necessarily perception, but I worry about accuracy, I want people to know the real me, the truth, and I get frustrated when opinions are formed based on inaccuracies. Where as Shaun, my husband, doesn’t care – and it’s a quality in him that I envy.

It’s true that despite not having a large close knit family, I love family life. I love being a mum, I love being a wife, I love having my mum a constant in my life and can’t go a whole day without having texted her.

When I did meet my biological father, it didn’t bring me anything, not closure, not peace, nothing. I believe family are the people you can count on, the people that support you, know you and actively make an effort to be in your life and I don’t believe they have to share your DNA – he did none of those things, my dad, and therefore has no place in my life. I don’t hate him, because I don’t really know him, I just know he’s not the man he was supposed to be for me and I’m ok with that now.

My daughter is the backbone of our family, she brings everyone together and shares all of her personality with everyone she meets. She unites us when we’d sometimes struggle to find reasons to come together. She looks like her Daddy but she has my openness and lack of filter. She has my fire and sensitivity and her Daddy’s kindness, humour and carefree attitude. She is the perfect mix of both of us and I love her with such ferocity it scares me.

She has grandparents and stepgrandparents and she has never asked who my daddy is, (in fact it took me ages to convince her that her nanny is my mummy) but that day may one day arrive, when it does this is what I will tell her:

I will tell her and her brother (who’s not yet born) that families are a beautiful mass of complexity that never look the same, some people have two mummies or two daddy’s and some have only one of either. Some, like hers, have one of each. Some have siblings and some have none. Families are sometimes of different ethnicities and not all mummy’s grew their babies in their tummies.

I want her to know that family doesn’t have to mean inseparable, but it can if you want it to. Family doesn’t have to mean best friends, but it’s great when they are the best friends you’ve chosen.

It’s an ancient idea (IMO) that you must bond with someone who’s a blood relative, but it’s lovely to do so if you’re able. I don’t want her to feel forced to bond with someone just because she’s related to them, but I will encourage the bond if it’s what she wants. Family can be friends you’ve chosen, it can be in-laws, god’ and step parents, and it can look different for everyone.

Family to me simply means, the people you love. The people you want to show up for. The people you can rely on, but also the people you choose to support. Family means a mixed blend of give and take and respect and kindness. Family means traditions and memories. Friends and pets. I don’t like cutting people off, ever, not family or friends, but the older I get, the more I notice lack of effort. I don’t mean forgetting to wish someone a happy birthday, I mean not attempting to connect, and when I feel it, the less likely I am to put effort in in return. I’ve always been a person that organises people, I arrange gatherings, I’ve always hosted and I always encourage communication, because I’m a good communicator – but the older I get I realise you can’t force people to be in your life, so if they’re not, it’s likely because they don’t really want to be and as much as it stings sometimes, we have to let it go. Ciara has 8 godparents, approximately four of them interact with her. I have family that have never met her, and maybe never will. It’s not my job to force myself or my kids on people. If they want to be involved they will. If you want contact with someone you’ll request it, irrespective of being asked. Life is busy and time passes quickly even when it feels slow. To me it’s not about grand gestures, it’s just about showing an interest. Family are the people you laugh with, trust, spend time with because you want to, and they are the people that check in to see if you’re ok. They’re also the people you remember to check in on, because you want to know they’re ok. They are the people who fill our hearts with fun and love and are the shoulders we cry on. They are not always or only the people that created us or the people that are related to us.

My family, plus one in utero

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.

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. 💙