chronic illness

Confessions of a chronically ill mum.

January 14, 2022 — Leave a comment

I stood on my mum’s drive yesterday morning, trying to make plans to go for a walk together like we had earlier in the week. As I walked away from her with a ‘provisional’ plan for the following week, I felt sadness, embarrassment and shame. My mum is my best friend. I needn’t feel any of these things in her presence, but the truth is, I feel it in everyone’s presence. Since the beginning of December my physical health has been increasingly hard to manage. I have spent days in bed. My husband has had to take days off from work, and my daughter has said the words ‘when you feel better, mummy’ on repeat. I missed a visit to Santa with her, and I didn’t get to spend Boxing Day with family as was planned. Then on top of that, we all, everyone in our house, caught covid.

I’ve cried in pain holding my son and I’ve listened to his cries when I’ve been physically unable to hold him any longer.

I’ve also had good days. I had friends round and we toasted marshmallows in the garden. I sat through a pantomime with my son on my lap and my daughter by my side. I spent a night in a hotel with my husband. Following those days though, I suffered immensely for the privilege. That’s when life can be really sucky, when your body (and mind) punishes you, just for living. In the last two years I’ve abstained from alcohol. I’ve had one night out since August 2020. I’ve tried to eat better and I’ve tried to get enough sleep (not an easy feat with a baby.)

And I can say with honesty and confidence that I have done my best to partake in activities with my family. I have done my best to limit my symptoms. I’ve done an incredible amount of work on my mental health and I’ve worked through a lot of what was previously, unresolved trauma. I’ve fucking tried. But the thing with your health is, you can do everything right and still be unwell. You can do everything in your power to manage your illnesses and still suffer flare ups. You can get eight hours sleep and still be bone weary fatigued as though someone has poured cement into your bones.

I’m writing this because it’s true. Not for sympathy, though I’ll be honest, more empathy is always welcome. I don’t gain anything from sharing my illness and it’s trials. It doesn’t serve me personally, but occasionally I’m told it helps other people. I’ve said before, but sympathy is in short supply when people realise your condition is long term but not life threatening. Not life threatening no, but it IS life limiting in some way, every single day.

I feel often as if managing my health is a full time job. Being a parent is a full time job. I have no time for my actual job, and no energy left for anything fun. For six months I have had medical appointments every week, often twice a week. I’ve been unable to walk, and then I’ve been able to walk, followed by days unable again.

I often write about holding onto the good days and I stand by that, but it does get tiresome when you feel like you’re always being punished for them. I’m not even talking always good days, sometimes it’s good hours followed by a migraine, or a surge of otherworldly fatigue so achingly exhausting that there’s nothing left to do but take to your bed. The trouble with taking to your bed when you have kids is, you rarely get the opportunity to do such a thing, and secondly, but probably more notably, you miss things. 

My confession is, sometimes I find the responsibility of my illness on top of the responsibility of my kids so overwhelming I pray for oblivion. Sometimes I find time with my kids assaulting to my senses. And sometimes I feel so guilty for their plight having me as their mother that I wonder if they are better off without me.

Thankfully, and going back to all of the ‘work’ I’ve done on my mental health this past year, I know this isn’t true. I know they love me including my flaws, health problems and weaknesses, not in spite of.

I guess the narrative for this blog was to get these feelings off my chest, and also remind myself that (and I’m sure I’ve used this quote before) but….

Bad days do not equal a bad life

It’s hard being a mum regardless of health, wealth or any of the other things that make life easier. Perinatal depression and anxiety do not discriminate, chronic illness, illnesses of any kind actually, do not discriminate. The world is a tough place to parent, and knowing this doesn’t make it easier, but it does remind me I’m not alone.

Sending love to anyone else feeling like they’re on their knees. Know this, better days are always coming.

Another new year

December 31, 2021 — Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

104 days postpartum

October 12, 2021 — Leave a comment

It’s funny how days are marked by our worst memories and our great ones, are often lost in mind with no clearly accessible date and time attached to them.

At 5am on the 11th October I woke up, eyes barely even open before I was thrust deep into a panic attack. My body wracked by the sensations, my mind reeling from the racing thoughts. To say I was devastated is an understatement, this is the first acute anxiety attack I’ve had in just under three weeks. Three weeks isn’t very long to most people, but it felt joyous to be able to think clearly for a while without the feeling of dread hanging over me. Without ruminating and catastrophizing. Without the pain in my teeth from my clenched jaw. Without the fatigue that hits you after yet another night of insomnia. Sleep when the baby sleeps… haha, if only.

What I’ve noticed though, in the fifty something days since I last updated my postpartum progress, is how hard I’ve tried to implement grounding techniques. How dedicated I have been to my recovery. I started a new contraception eight weeks ago to try and eliminate my periods, ergo reducing symptoms of PMDD. I’ve been on similar contraceptives in the past for the same reason. In this instance I have bled non stop for eight weeks. I am so run down I have ulcers in my mouth and reoccurring shingles pain, requiring more medication to combat. Around the same time I started the new contraception, I also switched my migraine medication for a slow release version and this has helped immensely with preventing attacks.

My son is now fifteen weeks old, he can hold a toy in his hand, chatter and laugh. but he rarely sleeps. His charming little face is one of the most beautiful I’ve seen, that is when it’s not screwed up like a tomato that’s past it’s safe to eat stage, wrinkly in places and as red as hell.

In the last one hundred and four days I have felt every emotion to ever exist. My days are now spent trying to wrestle a screaming baby into a car seat I’m unable to lift, and reading books about Biff and Chip with the big kid. I don’t get any opportunity to rest, which is hard when you have an illness that requires it. I’m mortified to admit some weeks it takes me three attempts before I manage a shower, and even then it’s hurried.

I guess what I’m trying to say is, I find it much easier to remember all of the hard bits, the downs, the panic and the tears and I’m very good at choosing to ignore the successes. Deeming them unworthy in their minutiae. Such as; getting the baby down for a nap on the first attempt. Watching his sister cuddle up to him or gently bounce him in his bouncer with her foot, whilst idly watching yet another episode of Bluey. The beauty in the pumpkin patch photoshoot we’d had recently, a windy autumn day surrounded by orange and forest green, the memory of the rain pelting down on our clothes afterwards, and rushing home to drink hot chocolate.

Watching my son grow, though hard, has not been wholly clouded by my poor health. It’s been beautiful in so many ways, and I’ve enjoyed very much time spent with him. I can feel my confidence as a mother returning somewhat. I have my first night out coming up and I’m anxious. When my daughter was a baby I couldn’t wait to get out, feeling more than ever that I needed to let off steam. Now the only steam I’m interested in, is the steam coming from a freshly boiled kettle and the piping hot tea that comes after the boil.

My pelvis hasn’t healed, I am still struggling with walking as with any physical activity. Unfortunately, it does seem this is likely to be yet another long term problem, but we knew that was a possibility.

I use the word progress to explain how far I’ve come and it’s the reason I’m utterly disappointed when I come up against relapses like that earlier panic attack. Im devastated when Im unable to rationalise my intrusive thoughts. Yet in spite of relapses, hard days, long nights and tragically cold cups of PG tips, I’m grateful. Grateful for the support I’ve received from an amazing perinatal mental health team, from my family, and from those few close friends who selflessly and with conviction, care enough to remind me I’m doing ok.

They say it takes a village to raise a child, and there are many people whom have contributed to my progress. Thank you. And here’s hoping for another 100 days of progress to follow.

Reasons not to have a second kid….

September 3, 2021 — Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

54 Days postpartum

August 24, 2021 — Leave a comment
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.

32 weeks of growing you

May 10, 2021 — 4 Comments

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

May 6, 2021 — 6 Comments

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.

May 4, 2021 — Leave a comment

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. ❤️

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

April 20, 2021 — 4 Comments

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

April 20, 2021 — Leave a comment

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.