fibromyalgia

It’s Scary dealing with a Flare Up when you have Chronic Illness.

February 7, 2023 — Leave a comment

Flare up definition: A situation in which something such as violence, pain, or anger suddenly begins or becomes much worse

Medical Dictionary

It’s doesn’t matter how long you’ve been living with your illness, or whether or not you’ve experienced something similar with previous flare-ups – The reality is that when symptoms increase or worsen, it’s scary.

Living with chronic health conditions leave you vulnerable. On the days my pain is so intense that I can’t think about anything else, my mouth is full of ulcers and no matter how much rest I get l, I still can’t physically stay awake, on those days I’m not just scared, I’m terrified.

  • I’m scared for a few reasons one of them being, I wonder if this is it, is this the new level of disabled at which I must live the rest of my life.
  • I wonder if it’s something else. I could bet, almost every chronically ill person alive will tell you, it’s common for us to ignore worrying symptoms such as chest pain or numbness. We don’t bother trying to wrestle with the traffic wardens of the NHS, (GP receptionists – I said what I said) having to beg for appointments. We’re used to being in pain. We soldier on, albeit miserably, but that doesn’t mean we’re not scared. Wondering if this time the chest pain really is a heart attack or the migraine is a stroke. We spend our time debilitated simmering on if maybe our pain is being caused by something even more malign.
  • I’m scared because I know it’ll always be this way. Sure there may be periods when I feel better on a sliding scale, ultimately though, I know this is my life. The cycle of up and down and baseline to unbearable will continue for the rest of it. That’s some scary shit to have to live with.
  • I’m afraid my people will eventually give up on me. My husband, my friends. The cancelling plans and feeling constantly burdensome to those you love, is tragic. The feelings are always there in the back of my mind. I spend hours ruminating on if this time they’ll reach their limit of how much support they can offer me. It’s not easy being a sick person and it’s not easy on my loved ones either. It’s not my fault, but it doesn’t make it any less worrying.
  • I’m scared my medication will stop working. When you are living on pharmaceuticals to try and reclaim some semblance of a quality of life, there’s a constant nagging, and valid fear that they will become ineffective or be taken away. It’s a dependency that I never asked for.
  • I’m afraid people will think I’m faking – I often struggle to articulate how awful I feel when my symptoms are exacerbated, because ‘I’m exhausted’ sounds a lot like I’m tired and ‘my whole body aches’ sounds like maybe I just did a work out or played sports – and because of that I fear the judgement of others. Fatigue isn’t the same as being tired and being in chronic and relentlessly agonising pain isn’t the same as post workout aches, but to be able to articulate the level of shit you’re feeling, really isn’t as easy as some might assume.
  • I’m scared my kids will resent having a poorly mum. I spent five days this week in bed at my mums. I’m thirty-five with two kids and there were five days this week I couldn’t care for them. Not only could I not lift my eighteen month old son, I couldn’t drive my daughter to school or stay awake long enough to read books with her. That scares me. It scares me that they’ll grow up feeling I was absent.

It’s hard. It’s harder when you’re met with judgement, ableism and misrepresentation – eg: Sounds like a horrible virus….. no, this is just my life. Or, you were fine last week…. Yep and things change. What do you think caused it?….. Perhaps something, perhaps nothing. I have a lifelong health condition I get sick often.

I wrote this post to try and articulate my thoughts and fears around the latest of flare ups I’ve experienced. I know better days will come again and those are the ones I live for, but in case you’ve ever wondered if being chronically ill is something you just get used to – it isn’t.

It’s a small world. A short story.

November 17, 2022 — 1 Comment

Selin Andrews woke up feeling flat. It wasn’t the first time this week, or even this month she’d felt drained of all her energy. Her mouth felt like sandpaper and her head as though it was filled with cotton wool. As she brushed the length of her long auburn hair in the mirror of her childhood bedroom, she stared at the dark circles that had become a permanent fixture around her hazel eyes, wondering if she could call in sick at work again, preferably without her mum noticing. Unlikely, considering her mum was a lady of leisure these days. Michelle Andrews spent an age dawdling around the house in the mornings, getting ready for lunches at the Ivy or another equally fancy restaurant, with one of her equally fancy friends. It wasn’t that Selin begrudged her mum this social acclaim, Michelle was a lovely mum whom was making the most of every second of her long awaited retirement, and Selin was happy for her, but she was also jealous. It pained her that her own life once so full of vivacity and social engagements, now revolved around whether or not she could summon the energy and the mental courage needed to climb out of bed and inhabit the shower of a morning.

You need to help yourself, Michelle would say, with kindness, though barely managing to disguise her evident frustration. What Michelle didn’t understand, is that Selin was trying to help herself, and she herself was also extremely frustrated. The days she managed to turn up to work despite being wracked with pain was such an achievement, she really felt as though she deserved a medal. Unfortunately nobody was giving out medals for turning up to work. Even when that turning up would cost Selin a whole weekend in bed trying to recoup some of the energy she’d lost doing so. She knew she’d been off sick lots. She knew her colleagues questioned the authenticity of her illness. She knew this, because she too had once been a colleague who rolled her eyes when the serial “sick note” called in yet again. That was until life had struck her with a debilitating illness that nobody could see. Sometimes as she sat here in her childhood bedroom staring at the garish pink wallpaper her mum hadn’t bothered to replace, she wished she’d lost her leg in a car crash. She knew these thoughts were irrational, insane even, but Selin felt with such an injury a modicum of sympathy might have been thrown her way. These days all she got was noncommittal murmurs and the odd poorly concealed eye roll.

Selin grabbed her phone from its charging port on her bedside table. As she tapped it the screen flashed up with a photograph of the family dog. Drew was an eight year old Red Setter that had the greying eyebrows of an old man, he was also her best friend. The knowledge that at twenty-five years of age she had a best friend of the non human variety depressed her greatly. Her phone told her it was six fifty am and that, as expected, she had no new messages. She tapped into Instagram where her life lit up again. People all over the country and some even in other parts of the world, passed by her profile to double tap on a picture or comment on one of the many inspirational quotes she liked to share. She had friends and family following her instalife too, but either rarely bothered to take the half a second it took to double tap her latest upload, and even fewer left comments or slid into her DM’s. But when Selin’s body forbid her from being able to leave the house, it was this virtual world that was helping her stay connected. When her friends had stopped checking in and her world had become small, this online space had opened up to fill a void. It allowed her to connect with people who understood her situation. People whom were going through similar themselves.

It had been four years since Selin had been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome, though the reality was she’d been living with it and many comorbid conditions, for much longer. Her life had once been vibrant and full. Days and nights out with friends scribbled on a calendar which had hung loosely to the kitchen wall in her flat. Her flat. The one she had shared with her ex, James. James had been a good boyfriend for the most part of their relationship, he’d stayed in a lot of nights with her when she wasn’t physically able to drag herself out to socialise. He’d been with her that day in rheumatology when she’d been diagnosed. He’d even seemed positive at first, with a real desire to help her manage this complex condition. Then when she’d been off sick for weeks at a time and he came home to her unable to move from the sofa to their bedroom without his help, he’d started looking at her differently. It had happened gradually, the transition, his blue eyes that had once belied a lust and deep love had started to look at her with pity. Instead of staying in with her on the weekends or planning around her illness, he’d began going out more often with his friends. Coming home later and later, until one night he didn’t come home at all. Selin had been out of her mind. Already prone to anxiety, she’d called all of his friends to find out where he was and when they weren’t forthcoming she’d phoned his family, and the local hospitals.

As she sat now scrolling her newsfeed, double tapping on posts she’d missed from people she followed, she decided that today would be one of those days she fought her body and took it to work. Or at least, she’d give it her best shot. ***

Lacey Rowe had been following Selin’s ChronicallyBored instagram page for some time. She liked seeing the quotes Selin created herself and shared with her audience. Lacey also had fibromyalgia and it had become so bad over the past two years she’d had no choice but to give up her job at a publishing house. Lacey now stayed home day in day out, doing her best to manage her health. She was relentless with routine and tried hard to go to bed at roughly the same time every night, eat consistently healthy foods and had given up her beloved wine in search of cures. A belief that cutting out vices would ease her pain. Lacey no longer worked, but she had responsibilities Selin didn’t have. Lacey had a son. His name was Rafe and he was just about to turn three. Rafe was a well behaved three year old. His cherub face was always smiling and his speech was great for his age, he also never, ever, forgot his manners. In some ways Lacey took all the credit for his upbringing, she knew she’d done a great job and he was teacher’s pet at his preschool too. But she also felt immense guilt. Every time she looked into her son’s chocolate brown eyes and sniffed the sent of his chestnut hair, she felt a stab so acute she wondered if a person could die from such feeling. Lacey’s guilt stemmed from not being able to do all the fun things Rafe’s friends’ parents did. Like host parties in their gardens and offer to help out for stay and play in his preschool class. For starters, living on benefits meant they had very little money left over after necessities were paid for, and secondly, Lacey simply didn’t have the energy or confidence to offer to volunteer her time. She knew the other mums at preschool thought she was odd, possibly even rude. She was neither of those things, but she was unwell. Making small talk was hard for her as brainfog rained over her thoughts and left her forgetting her words. She would constantly stutter and trip over them whenever she attempted conversation with a stranger. That’s why she loved following account’s like Selin’s. They made her feel seen. She knew Selin didn’t have children, but in age there was not much between them and she was pleased to learn they even lived reasonably close to each other. Selin was always tagging Bath as the location in which her photos were taken and Lacey lived about twenty minutes away by train, in a suburb just outside of Bristol.

***

Selin’s workplace was situated in central Bath. What was once a Georgian townhouse was now several small office spaces where she worked selling advertising for a local newspaper. The building itself was ornate, complete with sash windows and a boardroom- which had likely once been the lounge of a wealthy bank manager- overlooked the heritage city. Her office was quiet. The desk she manned was one of four, the others inhabited by Janet, a vibrant lady of indeterminable age, Sasha, also twenty-five and already married to a successful entrepreneur and Juliet, Selin’s very stern, and very straight, boss. Selin’s role was mainly administrative, fairly low grade and uncomplicated work for most people. Though Selin wasn’t most people. The moment she’d entered the building earlier that morning, she’d known it had been a mistake. The air was stuffy and emitting a damp smell which played havoc with her senses. The monitor she was working on too bright and the chair she sat on no longer adjusted to support her back. The pain had accosted her body just ten minutes after the start of her shift. As she forced her eyes to focus she felt her phone vibrate in her pocket. Realising it was now almost lunchtime, she decided to wait until then to read the notification, which she doubted was anything other than one of her many shopping apps alerting her to their latest sale. When she finally did walk out onto the cobbled street and pull her phone from her bag she saw instead that is was a direct message from Lacey. Selin had interacted with Lacey tons of times since the launch of her instagram profile and they’d had such a good rapport she felt as though she really knew her, despite the two of them having never met in person. Lacey’s message was about to change that, it read: Time to stop talking about it and plan in a date to meet up. Rafe is at his dad’s this weekend why don’t you come here and we can drink tea and lounge about on the sofa?

Her anxiety addled brain told Selin no way. She couldn’t possibly travel to Bristol on her own. She would have a panic attack or get stuck trying to get off the train. She’d be in so much pain when she arrived that she’d surely need a lie down immediately, and what fun would she be to Lacey then? Lacey had anticipated this would be her reaction and before Selin had even begun typing a reply her phone chimed with a second message: I know you’ll be tired when you get here so I’ll collect you from the station and drop you back whenever you feel like you’ve had enough. No pressure. X

She needed a friend, more than she had ever needed anything in her life. Somebody to complain about the day with and make inappropriate jokes about life with chronic illness. The kind of jokes that healthy people didn’t understand or find funny. She decided that instant that she would go. She still didn’t know if she’d manage the train though and planned to ask her mum to give her a lift instead. Hurriedly, whilst trying to stuff half a tuna baguette into her mouth at the same time, she sent a message back accepting Lacey’s invitation.

***

When Michelle pulled up outside Lacey’s new build with its overgrown hedge, she noticed the children’s toys stacked neatly to the side of the blue front door. It was weird to her that Selin would have a friend with a child. She was still Michelle’s baby, and her life had been so halted since she became ill that Michelle often wondered if Selin would ever make her a grandmother. Nevertheless she was glad her daughter was making friends, and hoped that the shared experiences would mean Lacey wouldn’t drop her daughter like a hot cake when the going got tough. Because it did, get tough and she’d seen the devastation Selin felt when friendships had inevitably failed. She’d felt the grief of her daughter’s health just as profoundly as Selin herself had. Smiling, she waved her daughter goodbye and drove the thirty minute journey back to Bath with a good feeling deep in her solar plexus.

When Lacey opened the door Selin knew instantly that she’d made the right choice. The petite woman with her dark hair and elfin features drew Selin into a deep hug and told her the kettle was on. Lacey’s house smelt of cinnamon and though a little untidy in places, it wore the coziness of a much older, and well lived in space. Sinking into the soft leather of Lacey’s sofa whilst waiting for the tea to brew the pair struck up a diatribe of conversation that was so easy it felt as though they’d been friends ten years, not ten minutes.

The two women spent the afternoon laughing. They drank copious amounts of tea that had Selin running to Lacey’s downstairs loo every half hour, sitting on the pan with the door ajar so she could continue conversation. They had so much in common it felt bizarre. Lacey opened up about the breakdown of her relationship with Rafe’s father, telling Selin how he’d left her when she was a few months postpartum and suffering severe postnatal depression. Selin told Lacey how James had become more like a carer than a lover. They each took comfort in the other’s life experience and neither felt they were being pitied. In fact their respective health, though relevant to the conversation wasn’t the focal point. They both loved eighties music and neon, fancied the new bloke in Eastenders though neither could remember his name.

When it was time for Selin to leave, Lacey hugged her new friend tightly. A solidarity had formed between the pair and when they agreed to meet again in a fortnight and venture out for lunch, each knew, without discomfort or simmering insecurity, that they’d be there. Being sick had made each woman’s world undoubtedly smaller, but together they were about to take future steps towards growing them. Each were as certain of the friendship’s likelihood for longevity as they were that daffodils would bloom the following spring.

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.

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.

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

Third trimester

April 15, 2021 — 2 Comments

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.

I think I’m failing but my kid still thinks I’m a superhero 🦸🏽‍♀️

March 4, 2021 — Leave a comment

It’s no secret that during pregnancy your hormones are all over the shop, one minute you’re chomping on cheese on toast and the next your crying into your cottage pie that your friend drove 25 miles to deliver. It’s a funny old game this growing a human malarkey.

Because my health has been on a steady decline since my daughter was born, this pregnancy though a lot like hers, has been overshadowed with worry and feeling unwell constantly. When I say constantly I mean it. It’s either not being able to walk, migraines, sickness, feeling faint, high blood pressure and the rest, it’s been bad, and not fun. Also those people who said you never get two the same, you were wrong.

That said the guilt of ‘wasting’ days in bed in an attempt to make the next one better and unable to do all of the things I want with my family has had a negative impact on my emotions. Team this with hormones and you have me, an unstable, anxious, dribbling mess.

This week said emotions have been on overdrive and I’ve spent countless hours in tears, I’m surprised there were any left after the first ten or so. My husband has looked at me with puppy dog eyes and a need to fix my broken spirit and my daughter has looked at me with longing and frustration. I haven’t been able to meet their demands, particularly those of the little person. She doesn’t get why mummy is always in bed and at one point I was worried she was going off the idea of having a brother because he’s been making her mum so poorly. It all hit a crescendo on Tuesday when Ciara wanted 5 things at once and I couldn’t even give her the simplest one, which was turn the volume up on the TV. I couldn’t do it because the bastard NowTV remote is a dodgy little fucker and it just would not work. Off she stomped whilst moaning at the dog and calling for her dad to come and fix the problem that mummy was incapable of rectifying.

Once I heard her footsteps on the stairs I burst into a fit of hysterics, threw the remote which bounced off the bed and smashed a photo on the bedroom wall. It wasn’t my finest moment because I couldn’t even roll myself off to pick up the glass before Shaun bursts in asking me WTF I was doing!?

Picture it, 5 month pregnant woman whose legs don’t work, rolling around on the bed with no bra on and crying inconsolably. It’s not a pretty image is it?

I don’t want to do this anymore I wailed, like an actual whale. To his credit, Shaun turns the tv off and shouts down to Ciara that they’re going to watch tele downstairs instead. I didn’t see them again that evening because I cried myself to sleep and woke up at 10pm and waddled into her room to give her a kiss goodnight, something I abhor to miss.

The next day I’m feeling full of shame and still in pain wondering how I’m going to get through the days for the next 4 months. But I needn’t of worried about the rest of the family because like clockwork they traipse in from school and work with smiles and cuddles for me and chat shit about their days as if the previous ones have been erased.

Ciara was pleased that I had finished colouring in her tiger costume with a sharpie for world book day and asked if she could come and snuggle in my bed.

This morning I got up at 7 after being awake from 2am with possibly the worst nerve pain ever. I say this because I can’t treat flare ups in the same way I would when I’m not pregnant ie with heavy drugs. The pain relief I’m taking at the moment just isn’t working to the same effect. Anyway up I get and by ‘up’ I mean sit up in my bed and paint my beautiful daughter’s face and send her off to school with a smile.

It doesn’t matter that I collapsed back in bed after and slept until lunchtime, because she was happy. When she got home she found me asleep in the bath because it’s the only place I don’t feel like my body is on fire and she poked me to tell me about her day. Including poo gate by another kid in class which we all found highly amusing.

I do feel like I’m failing life on the reg at the moment and somedays I can’t get on top of those crazy emotions and pretend I’m bossing it, because I’m not. But what I do know, with absolute clarity is that when it comes to my kids my best is good enough, and the need to be moving all the time and trying harder is born out of my own insecurities, not those of my five year old. She loves me on all of the days, even the really shitty ones. She loves me for all of the things I can do, not all of the things I can’t.

A letter to myself.

February 21, 2021 — Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

X

Pregnant and chronically ill.

January 11, 2021 — 6 Comments

Some of you might know my story already. I married my husband in January 2020, we did it just the two of us and it was amazing, but since our wedding, lockdown and covid-19 have presented challenges, as it has for everyone, I’m not naïve enough to believe I’m alone with that and I know there are people everywhere that have it a lot worse than I do.

For me though, my health deteriorated again and baby making was not on the cards for us during lockdown…. or so we thought.

We had a baby in 2016, and she’s a healthy, sassy four year old, but her start in life was hard, on her and on me.

My pregnancy was not an enjoyable experience, I didn’t feel well for a single day of it. I was debilitated by hormonal migraines and nausea throughout, and by 16 weeks I was on crutches diagnosed with Symphis Pubis Dysfunction- a condition that causes your pelvic ligaments to become stretchy and relaxed, making walking painful, the same condition had me in a wheelchair by 25 weeks completely disabled. Later I had preeclampsia, I was admitted to hospital and after several attempts a doctor finally managed to break my waters, my contractions were then hormonally induced. I often refer to labour as the easy part after 9 months of what felt like torture, but honestly, none of it was easy for me.

I was taking antidepressants throughout my pregnancy to manage my mental health, and as a result my daughter was born with Neo Natal Abstinence Syndrome.

A condition where babies are born withdrawing from drugs they’re exposed to in utero. I wasn’t warned about this, I was told the medication I was taking was safe for my baby. Withdrawal was something I assumed only illicit drug using mothers experienced, I was wrong.

She was in NICU for 10 days and then she screamed for 15 hours a day for almost 10 months. I’ve since spoken to people who were on similar medicines and they’ve had different experiences so it’s important to note, I’m not trying to scaremonger here. I believe in looking after your mental health, but there is no dressing up that it was a very traumatic time for us. I think the consensus is not to force mums to stop medication that keeps them well, and of course this makes a lot of sense, I just wish I had been armed with facts sooner. I was peri and postnatally depressed, suicidal at times, and it hurt. It massively effected my pregnancy and birth experience, my early bond with my daughter, and I don’t consider it a positive time to reminisce about.

Given the story so far you’ll have probably read/heard me freak the fuck out at the thought of baby no 2. Yet here we are, we got bored in lockdown. We ran out of things to do, we also ran out of condoms. (That was a joke btw don’t @me) Shaun always wanted baby number two, and for the last year Ciara has asked for a sibling, but the truth is I never wanted to be pregnant again.

But I am, kind of by accident, almost certainly by fate.

In truth, I’m petrified. I haven’t acted happy about it, because I’m not about being pregnant, not really. I know how ungrateful that must sound, and let me be clear, I want the baby, I love being a mother, it’s my life’s biggest achievement. What I don’t love are the effects pregnancy has on my health and well-being.

I battle with guilt daily about my dislike for pregnancy, because I know I’m lucky to be able to birth children.

In an ideal world I would have weaned off all of my medication before conception this time, but I have a chronic illness, one that takes over much of my life. I am constantly met with new symptoms, making it impossible to imagine a life without medical intervention. You know when people say ‘you’re pregnant not ill‘ – Well in my case I’m both. Most of the time giving things up in pregnancy is par for the course but what about when you’re giving up drugs that have kept you well for years.

So, I’m withdrawing from several different types of medication at the moment, but I’m still not medication free and I might not ever be. It’s hard on me mentally, to know I could go through the same thing twice with NAS and having a baby in NICU.

In my dreams this pregnancy would be totally different, I’d be fitter and healthier, mentally stronger.

Unfortunately it hasn’t worked out that way. I’m not going to miraculously become well whilst living with a chronic illness, (chronic = ongoing) if anything it worsens as the years progress. I haven’t gotten better, and I feel as awful as I did in my first pregnancy if not worse, because there’s more to worry about – a lot more.

Midwives have classed my pregnancy as ‘high risk’ for preeclampsia and SPD again (I’m already struggling with this just 14 weeks in), and for diabetes, and that’s without accounting for my illnesses and the cretin that is Coronavirus robbing us all of joy.

I feel like somedays, even before pregnancy, I was barely hanging on to my ability to cope as a functional human being, do the fundamentals like washing and cooking meals, and yet I’m putting my body through this again and it already feels hard.

So what happens if I can’t look after a new baby?

What if they cry for 15 hours a day again and I have a breakdown?

What if Shaun leaves me for our skinny neighbour with muscular thighs and perky tits?

What if, what if, what if…..

It’s a redundant question, because what if I got ran over by a bus tomorrow?

I could cite an endless lists of what ifs, but to get hung up on them means I also need to think of the flip side, that being, what if things work out ok?

A pandemic is a big deal to the most hardened of us. So being pregnant with several illnesses and a penchant for going fucking mental at the first sign of a hormone shift feels ominous, but we’re doing it.

Baby 2.0 is coming!!

Aside from being terrified, feeling even more like shit than usual and eating everything in site, I’m optimistic, because despite ALL of that, this time I really do know it’s all worth it in the end.

I’m being seen by the maternal mental health team this time, an option I wasn’t (but definitely should have been) offered in my first pregnancy. And I have a plan for my physical health issues and medicines, it’s not a great plan, but it’s a plan that involves a lot of listening to my body.

On top of that, I have a family who have my back. We’re a team and we’ll get through it because we have each other and because we are lucky, and this, however hard it feels, is a blessing.

I wanted to write this, because there still feels much stigma around not loving every second of pregnancy and motherhood.

There is never a time when I feel unlucky in motherhood. But sometimes I feel unlucky in health, and pregnancy is hard on my health, it’s hard in general, as is parenting, at times, for all of us. And it’s ok to say that out loud.

Our journeys are different and we are forever a divided world on how to parent, because there’s no rule book and we all have our own unique way.

I wish I could flip a switch and love every tender second of motherhood, but my truth is, I don’t love pregnancy and my experience of newborns brings with it traumatic memories.

That doesn’t mean I don’t love being a mother, it just means it’s not straightforward. I didn’t want to announce my pregnancy without having explained how I feel because I’m sure there are other expectant mothers who feel similar to me that don’t have the confidence to say so aloud.

There’s so much pressure to say over and over again how much you love your kids, how blessed you are, and if god forbid you forget to mention that, obviously you don’t deserve to have them.

What I actually think is, all you can do in these times is YOUR best. There will always be people that are struggling for different reasons in every aspect of life.

When it comes to your baby though, I really feel, like your best is good enough and what works for you, what keeps you well and healthy is as important as protecting that newborn head.

We will delight in the birth of our second child as we did our first and we will get through the tough times because this time, we know they really don’t last forever and the long nights whiz by with painfully short years.

Motherhood is hands down the hardest, most rewarding job and my only goal is to be good at it (and to get to the end of this pregnancy with both of us in one piece)

NB: If you’re struggling with maternal mental health please visit Maternal Mental Health Alliance for support.

For fibromyalgia resources it’s FMAUK

And for migraines it’s Migraine Trust

Here we go again, sertraline.

October 27, 2020 — Leave a comment

When I recorded last months #PMDD diary I mentioned I’d started taking antidepressants again, but only during the luteal phase of my cycle. Unfortunately my symptoms have not improved greatly in the months since I decided I didn’t want to be here anymore (again).

When I say not improved, what I mean is not enough for me to do this on my own. So here I am again, where I’ve been for almost 20 years, trying to get a grip on my mental health with the help of antidepressants full time.

I am still here, so I’d be lying if I discredited their power in helping me get through dark days, but when you live on a cocktail of drugs for survival, it can make you feel like you’re never really moving forward, just treading water.

Antidepressants for breakfast, painkillers for lunch, more antidepressants for nerve pain at tea time, a side of beta blockers, followed by occasional benzos for supper.

I often feel like I’m failing by being so dependent on medication, but I weigh it up with my need to be able to function.

I’ve made many positive changes over the years for my mental health.

I very rarely drink alcohol anymore and have drank only 3 times in all of 2020. Though I feel no better for it really, I’ve not missed hangovers, and truthfully, I’m scared of it now.

I’m scared of doing ANYTHING that might trigger a migraine, a flare up, PEM. I’m scared of walking too far, or dancing too hard, or staying still too long. I’m scared of things I used to enjoy, and not enjoying, is depressing. I know I feel better if I don’t over plan, if I have a day in between activities and I know I feel better if I get enough sleep, but trying to implement that into a modern world where we have to work, and parent and show up for shit, is hard.

When I think about how hard it is I also try to think about how lucky I am.

Because if I don’t think about the good things I will be forced to believe there are no good things, and that is simply not true.

So how do I remind myself of everything that’s great when all I can see is what’s not? I look at my family. That’s it, I see them and I am reminded of my luck 💗 Though I don’t imagine they feel the same about being stuck with this bitch 🤣 This is your Tuesday night reminder, to TAKE YOUR MEDS💊

Three things

July 23, 2020 — Leave a comment

I was having a little rest from socials wasn’t I? But the truth is I often feel so much relief when I express how I feel here, insta or on my blog, that it’s become a compulsion to just get it out of my head. This is me. Straight up. No bullshit. Being my true self.
I know I will never win any prizes for flying under the radar, but what of it?
My latest battle is a cycle of Mum guilt ergo
Wifey guilt. Guilt about work. Guilt about shit I did 15 plus years ago and since. Guilt about guilt. Guilt on guilt.
Currently I have this desperate need for a break from our diva child. It’s like a certified panic button that only she can force me to press, followed by an overwhelming sense of ‘This is her last summer before school take in every second. Finish that scrapbook. Build a fucking tree house and what not.’
I feel like I’m depriving her of valuable time and offering up instead stale days in front of a screen wearing 2 day old pjs.
We fucked off last week, down the coast for a bit of R&R. Our honeymoon holiday in the costa brava with a hot tub clad chalet got cancelled, and we’re still waiting for that refund so we settled for a caravan substitute. Nice caravan too, but of course I ruined it with an obligatory 2 day migraine. Throwing up battered cod into a 2×2 toilet with zero soundproofing and spending the following day with the curtains closed and crying about my uselessness.
It’s so traditional for me to ruin holidays with my health now, that we don’t even consider planning excursions without a day in between for little ole’ me to catch up.
Such is the Spoonie life. Ciara didn’t care less of course. She had Daddy to herself for a day and as always he dutifully complied with her ever growing demands.
So lucky am I to have him as my husband aren’t I? Queue more guilt about how the poor fucker just signed his life away to a woman only capable of frolics approximately 2 days a month – the rest of the month is spent recovering from that thing we take for granted called life.
Anyway whilst I’ve been torturing myself, and it has very felt much like torture in this chubby little head of mine, I got to thinking. So there’s a list as long as Peter Crouch’s leg that consists of why I’m the worst wife and at best, average parent, but I reckon there’s a few things I’m good at. Surely?
I’ve been using this app for a while called Three Things. (Not an ad! It’s a free app too) Every evening you are prompted to write 3 positive things that happened during the day. Somedays though, I just can’t do it. And somedays I’m so trapped in a negative spin cycle that I just don’t want to. So instead I’m doing something a bit different starting today. I’m going to write 3 things I like about myself, every day. It’s a challenge, but I have to get back on the positivity train soon, before I go off the track to no return.
3 good things might not occur on a day spent in bed with a migraine or crying into my pillow cause I can’t find the T-shirt I wanted to wear and I’m due on BUT…..What if I just decide that I have good hair, which I do (if a little grey under the ‘natural colour’ that I now dye it) or that my toes look cute on my tiny feet. Or that I did a good deed and I like myself more because of it? ✔️✔️ ✔️ 3 things. Everyday. I’m no therapist but even I know the key to my happiness isn’t hanging on someone else’s keyring. Whitney said it didn’t she?…. “learning to love yourself…” sing the rest. 🎵
So I’m starting today. I haven’t thought of the 3 things yet, so I can’t share them, but if you think of 3 things you want to share over here, please do. And even if you can’t, start with 1. Start today. And just keep going. Practice makes perfect. Pick something about yourself that’s a quality you’d want in a friend, or don’t. Maybe this is a bit ‘cheese on toast’ but I’m feeling positive about feeling positive, even if it’s just for today because one day at a time, right? Three things. ✅✅✅💗

A Decade Of Lessons

December 28, 2019 — Leave a comment

The last 10 years

Well, it’s been a testing decade that’s for sure, but it’s also been the most amazing pilgrimage of self discovery I’ve ever been on.

I feel like the last decade is where I really became an adult and anything before was part of my youth.

In 2010 I was glassed in a nightclub in an unprovoked attack whilst out with friends, and it shook me beyond measure and took me to a place I didn’t know existed. I’d been in fights before, been given a slap when I probably deserved it, in my teens, I’d even (believe it or not) been hit with a bottle before, but it hadn’t shattered the first time and this was on another level. This was in response to me just being out having a laugh with friends, and it could have left me blind. Thankfully, physically most of the scars are on my décolletage and not my face (though I do have a dent in my skull) it could have been a lot worse physically.

But despite keeping up appearances, mentally I was scarred beyond recognition. I was scared too just by the weight of the attack, but in being scared I got angry.

I went ‘mad’ for want of a better word. I was wild. Following that night every time I went out I braced myself for a row and alcohol only fuelled that self destruction. I got in more rows and fights than I’d ever had before. I rowed and physically fought with my then partner, and when I ended that relationship I continued down a rabbit hole of hell.

I did some messed up things and 2013 saw the catalyst to that phase of crazy.

I lost my job, almost my house, and I was alone. Friends had given me a wide berth and my nights out were spent with people I didn’t even really like and who only hung out with me for some drama or entertainment.

I’ve always had a need to fill the shoes of the life and soul of the party, but I’ve filled them by acting like a fool. Being the loudest, the craziest and the wildest person in the room.

I met my now partner at the end of that year. I saw the new year in in Ireland with a good friend and it was like something just clicked, an epiphany if you like, and I didn’t want to be that self destructive, unemployed mess, that I had become.

I got a job, a pretty good one, and from there life has progressed at a steady pace. The following year I was shaving my hair off for charity and raising thousands of pounds. I’ve had some backslides, like being diagnosed with Fibromyalgia and it’s affect on my both my physical and mental health. Having a baby wasn’t an easy feat for me, and it can be hard work just being ‘normal’ most days, but I’m surviving it, and thriving too.

Last year my mum nearly died from a freak fall and I can say with certainty, I’ve never been as scared as I was then. It puts what’s important into perspective.

Nowadays I don’t feel like I’m falling from Beachy Head every time I wake up. I don’t want to hide for a week after a night out anymore, and I don’t wish I was dead. Even on the bad days, I’m glad to be alive.

I still feel like some days I fight stigmas and a bad reputation, but it took me a long time to make it, so I guess it’s only normal that it will take me a long while to break it, too.

That being said, my future is bright and I’m lucky. All the people in my life are in it because they want to be and contribute in some way to helping me be and feel better. So I’d say, despite all of that drama, this past decade has been pretty spectacular and I’m looking forward to the next one. Taking nothing for granted is my only resolution.

Happy new year 🥳

Just another chronic illness blog

December 21, 2019 — 2 Comments

When I got diagnosed with a chronic illness I didn’t get the same quota that you get when you’re told you have pneumonia or you break your leg. I didn’t get ‘get well soon’ cards or flowers – which I guess is a good thing as get well soon doesn’t really exist in the chronically ill community. But we still appreciate the sentiments.

I don’t get much love for my illness, I get eye rolls and people annoyed at me talking about it again, but I don’t get much love.

I get people accusing me of using it as an excuse and comparing me to people with the same problems. But not love.

I get disbelieving shakes of the head and funny looks when pulling into a disabled parking space, but not love.

I get people telling me to be positive and exercise more but I don’t get presents or hugs.

Imagine waking up one day and not being able to get out of bed, yesterday you could of ran for the bus, but today you can’t move. Now imagine feeling too ashamed to talk about it for fear of being dismissed, accused of faking, or mocked. Because that’s what living with chronic illness is. That’s what happens when people can’t see your pain. They assume it doesn’t exist or that you’re making it out to be much worse than it is.

Even your friends think you’re exaggerating, and even your family get fed up when it encroaches on plans with them yet again. When I tell people I have to pace myself or I’m not feeling too good, I literally brace myself for their reaction. Nobody ever says, it must be so hard, I admire your strength.

That’s why I write it down, and that’s why I share it on the internet with people whom I’ve never met. Because some of those people get it and they aren’t (at least not visibly) rolling their eyes at yet another post. People are happy to offer you their support for the occasional bout of misfortune, but when it‘s ongoing nobody wants to get dragged down with it. I get it! I really do, I’m a realist, I know it’s hard for people to understand, and it can be miserable to hear about, but imagine living with it.

Imagine just for a minute that it’s you who’s sick all the time. Then imagine feeling like nobody cares. Feeling like you’re burdening people whenever you talk about it, feeling guilty for being sick, imagine how lonely that gets.

Everyone has their own battles and some people have it much worse than you or I, that’s a fact. Some people have the same illness on a different level and some people have diseases that are killing them.

What living with a chronic illness has taught me is not to make assumptions on people’s lives, to believe people when they tell you they’re suffering, and to remember to check in on your friends. Pain changes people, in different ways, sometimes it’s empowering and when you’re on top of it you feel like you’re winning, other times it’s dark and makes you wonder what’s the point of living at all if this is how you’re destined to feel everyday. It’s overwhelming and hard to explain – but by sharing my experiences with it I’m remaining sane. I’m not hiding and so that is the reason behind yet another chronic illness post. If you know, you know. 💜

View this post published on The Mighty here.

https://themighty.com/2020/01/when-people-cant-see-your-chronic-illness/?utm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

When losers win.

December 8, 2019 — Leave a comment

I have always been the girl, who never does anything extraordinary. Never got nominated for anything in school. Never got a part in the school play even though drama is my forte, because I didn’t put myself forward. I didn’t raise my hand to answer questions even though I knew the answer. I didn’t stay for after school clubs in my favourite subjects because I was more interested in smoking weed and playing spin the bottle (that’s a euphemism for whatever the fuck I liked) When I didn’t know the answers I didn’t seek to learn them. I didn’t like rules and I didn’t get the right kind of attention, any attention I did get was for the wrong reasons. My attitude took a long time to change and I’m still learning from the bad decisions I’ve made, and I’ve made plenty.

When my first stint at secondary school didn’t work out and I moved on to the next one I didn’t get praise for good work, I got chastised for bad work.

When I got my one and only A in GSCE I didn’t get told well done. I got told I could of done better in other subjects, if I’d have only worked harder.

When I went to work and had time off sick because my mental health can’t always be relied upon to remain ‘normal’ enough for me to function at full capacity all of the time, I got told I would never excel in my career if I couldn’t show up. I got told to suck it up and do better.

When I got diagnosed with a physical condition I had to take a lesser paid and much lesser privileged job, because I wasn’t deemed reliable enough to do important work. Suffice to say I left that job.

So when I won this award today, it wasn’t a victory because I was awarded winner status. It wasn’t a cash prize or a holiday to the Maldives. It was just a certificate, but it was a certificate rewarding my effort.

It was a victory because I won it doing what I love (writing) and it’s a potential doorway to another realm, one where hope exists and efforts are recognised. One where I’m good enough. It was a small award for a reasonably well read blog, but one day it might be a big award for a bestselling book (never say never) and even if it’s not, it doesn’t matter, because it’s given me the confidence boost needed to pursue a passion. It was a reminder that you can do whatever you want, we have the power to change our futures if we’re willing to give things a try.

Take a chance on yourself, it might not pay off, but it’s a lovely way to learn more about where your strengths are. We can’t all be good at everything but it helps if we like what we are good at.

So my apologies for milking this day to high heaven, but for the first time in my life I feel like a winner. 🥳

Living my best life with fibromyalgia.

March 10, 2019 — Leave a comment

Cough, I know you’re thinking Jesus, Steph has finally decided to get out of her funk and help herself.

Not really, I don’t know, maybe I’ve just been lucky. Since I left my job my health has improved tenfold. I believe this to be because I have more time to rest when I need to, but it could be due to a lot of factors, or it could just be good old coincidence.

Mentally, I am stronger than I have been for some time. I’m off of antidepressants for the first time in years, and I’m not feeling constant impending doom. This is a really big deal for me, and I’m feeling positive about the next chapter.

But it’s not all cupcakes and rainbows (yes that was a Trolls quote) Pain has got a lot to do with mood, low mood can exacerbate pain. Especially when suffering with a condition that effects your central nervous system, as that’s when it’s on high alert. Psychological pain can bring on physiological symptoms. I’m not a doctor, but I have spent a lot of time researching my condition. I’m not going to sit here and spout that positivity cures illnesses as that’s untrue and offensive, but when you feel happy it makes pain more manageable. That much I do know.

Today I woke up earlier than usual due to Ciara’s new found love for 6am. I felt terrible, my body was heavy and I can feel pain deep inside each joint. This is not imaginary, this is real pain, and I’ve had to take some heavy duty painkillers to combat it today. Despite being in very real pain today, I feel good. Good, because I’ve had a decent run of late, without this kind of debilitating pain. I’ve had pain, but the kind of pain I’m in today, is what reminds me I have a disability. In short, it sucks.

However moving on to the positive bits again. I’ve been doing little things that make me feel better. Small things like, having a tidy living space, getting enough sleep (when I can and Shaun’s snoring allows) but generally doing things that make me feel good. Avoiding toxic people, not analysing every little thing, not comparing myself to everyone, and trying to accept my pain without beating myself up. All these little things help. They aren’t a cure but they do make a difference. I went through such a battle with myself to accept this illness without it breaking me. To allow myself time since my formal diagnosis to grieve for the old me. I’ve spent two years grieving, and I still suffer! I won’t play it down, but I’m in a place now where I can accept it without it breaking me. I can move forward and still live a good life. I can have bad days but they aren’t all bad. Some of them are fucking brilliant!! You too can have good days again. It’s not going to be easy, but even without an illness or disability life isn’t easy.

But I have all my faith in you. You can do this, you can live your best life too. 💕