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

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.

(Not) 2022 In Review

In keeping with a recent blog I wrote that had a very clear yet totally metaphoric ‘food’ theme. I wanted to continue the metaphor and write another blog in similar fashion, about my year.

I’ll start by saying, it’d be easy for me to write a tick box of the things I’ve achieved professionally in 2022.

Quit a job where the hours didn’t support the limitations of my disability ☑️

Published my first newspaper article and my first short story ☑️

Got nominated for a Mental Health Blogger award ☑️

Found a job that fuels my passions and hours I can work around my sick days☑️

But this isn’t LinkedIn and whilst these are great achievements, they’re the icing on the cake – not the cake itself. For me, the actual cake is all about the ingredients. The ingredients which I collected, gathered, thoughtfully and responsibly sourced and lovingly cooked up, once I realised what kind of cake my life had been lacking for, well…. ever!

Ok, let’s drop the metaphors for a moment. I think what I’m trying to to say is, for a long, long time, I was basing my value and happiness on the things I could do that weren’t limited by my health, both physical and mental. For example, I can’t run because of limited mobility, but telling people I was walking my way back to health just didn’t feel good enough. Spending a lot of time resting to avoid things that trigger my poor mental (and physical) health, well, it just doesn’t sound very productive. I always feel lacking in some way. I didn’t want to, and couldn’t, drink alcohol for most of 2022 because of medication, but saying I went for a really great breakfast date with my friend just felt lame amidst conversations of wild nights out and instaworthy excursions. I’ve seen friends so scarcely over the past year while watching everybody else, including my own mum, have a social life that would trump that of Kate Moss in her halcyon days.

I didn’t stick to regular baby groups or devote my time to the school’s PTA. I spent half of 2022 unable to even do the school run at all, because I couldn’t lift my son, and definitely not his pushchair out of the car on my own. Not least do both while holding my daughter’s hand. Instead of these things, I spent months trialling hormone replacements and cholesterol lowering medications, to lower my risk of both suicide and heart attack. And when the most exciting thing you did all year was stay overnight in a Mollies Diner with your six year old…. Well, it just doesn’t have the same ring to it as ‘I partied with my girlfriends on a hen do in Ibiza’ or ‘I took the family to Lapland for Christmas’ (Though Lapland is 100% on my bucket list)

That said, the ingredients I ended up finding and mixing for my own special 2022 cake, are worth sharing. They’re worth sharing because they’ve kept me alive, but not only that, they’ve actually made me pretty happy.

So here’s a list of that extra special ‘cake’ recipe I discovered during 2022.

Therapy is something I talk about a lot so won’t dwell on too much here… but it was previously something I had determinedly avoided really seeing through – that is until this year. I’ll say, one last time that I recommend everybody have a course of good quality therapy at least once in their lifetime. It really is life changing.

Liking myself was a close second in non negotiable ingredients for the perfect slice of life cake. Once I’d completed therapy and the shock of reliving past trauma had passed, I got serious about cutting myself some slack. All of the things I mentioned above that had me feeling lacking, were more a result of me just not really being okay with who I was and how my life had turned out. I didn’t do anything special to help like myself better, I just tried (and continue to try) to make sure that everything I do, I do with integrity. I’ve stopped doing things that leave me feeling bitter and agreeing to things I know I don’t really want to do. I could list many changes but the bottom line is self compassion.

Acceptance is the hardest one. It’s an ingredient I thought I would never be able to find and keep. I’ve spent a life time pretending I don’t care about situations I’ve been in, pretending to have accepted something unchangeable, but then remaining tightly wound and seething inside. Learning to really accept things for exactly as they are – is not easy, but once you master it – or in the case of the metaphorical cake – add a dash of it – it tastes great!

Quality time with the people I love. Real, meaningful, wholesome time. Conversations I’ll remember forever because I was present and listening. Being a reciprocating participant instead of being someone who shows up at surface level.

When I look back at this list of ‘ingredients’ I know that by following the ‘cooking guidelines’ consistently, that happiness can be found in a big ol’ slice of this cake.

🥳 Happy New Year 🥳

HRT to treat PMDD week 19

Can’t believe it’s been 9 weeks since I last wrote an update on my HRT journey. A journey is exactly one of the words I’d use to describe it. There’s so much in the media at the moment about the use of hormone replacement therapy, and often strong opinions both for and against. I’d say for me, I’m still pretty on the fence.

So what are the three words I’d use to describe this most recent cycle? Improved, unusual, and you guessed it (a) journey.

Improved. Because, for the first time since commencing treatment I felt a really significant improvement in psychiatric PMDD symptoms last month. The level of anxiety was what I consider bearable (no anxiety is nice, but when you’ve felt close to the edge every month for decades, bearable is considered good!)

Unusual. This one is a weird one. I can’t work out why my symptoms were reduced. I’ve been using ovulation strips when I think I’m ovulating to confirm that I’m still cycling, and unfortunately- I am. So it’s not as if there was some kind of ovarian wipe out that can be thanked for the minimal mental turmoil. But we celebrate small wins here. And it’s nice to report feeling less tormented, for once.

The Journey is ongoing. In fact, I’m certain it always will be. Whether that be post op – or continuing with my reproductive system ‘in tact.’ I know this, because trauma and our experiences of it never really leave, so even in the absence of horrific PMDD my mind is still naturally searching for worse case scenarios. It can pluck them so easily from seemingly thin air!

Observations

I feel I need less oestrogen around ovulation and more straight after it. A steady dose of high supplementation is not always the missing jigsaw piece. I am not medical in any way, but I know my body, probably better than I know anything. If I have too much on the lead up to ovulation, I become anxious in follicular. This is less than ideal because this should be my ‘good’ week. So I am going to talk to my gynaecologist about tweaking dose and admission around this time, and see if it results in a positive change.

I’ve started planning my life around PMDD again. I used to do this around my period specifically, but now I focus solely on my moods and when they’re likely to turn. It’s not ideal, but it is necessary to get the best out of my days.

I’m about to ovulate again any day now and my usual body aches, shingles pain and mouth ulcers are creeping back in, as they do every month around this time. So it’ll be after next week that I’ll tell if I had a one off better cycle last month, or if HRT can indeed finally be thanked for the decrease in negative mood fluctuations. It’s a rollercoaster that’s for sure, but anything, any scrap of positivity is better than PMDD itself. So like with most minor improvements in my life, I cling to them with fervour and hope for the best.

Because in the end, despite science and medical intervention, hope is what keeps me going. ❤️

It’s a small world. A short story.

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.

Confessions Of A Chronically Ill Mum #21

Yesterday was a bit of a pity party – sometimes we’re allowed to have those. As long as you don’t outstay your welcome at the party, you know, make sure you leave before the sun comes up. It’s totally justified to indulge in self pity once in a while, when life feels too much and you’re overwhelmed, and everything’s going wrong or you’re unwell. The idea of being positive all the time really can feel quite toxic. I’ve been feeling lonely, as though my circle has shrunk to such a minutiae and I’m struggling to find anyone to reach out to that I haven’t bored to tears with my problems a million times already.

I love a bandwagon – Spirit Costume

In the space between my last update and now, so much has happened. Too much. I will never have the short hand speed or memory to recite it all. Today though, I ‘dusted myself off’ it’s been a week in the making, because for the last 5 days I have slobbed about half naked, nursing a sick baby and struggling to get on top of my own ailments.

I guess the most notable thing to happen and served to also be most terrifying, is my son’s recent contraction of Hand Foot and Mouth Disease. A ‘mild’ childhood illness that’s extremely contagious and turned out not to be very mild at all. Don’t get me wrong, he’s recovering well, but the symptoms were savage. He had a high fever for days, constant vomiting and was writhing in agony from the blistering rash that covered most of his body not just his hands, feet and mouth. It was awful to watch. It took us two days to be seen by a doctor and over a week for his symptoms to dissipate.

Secondly, and more life changing…. I handed in my notice at work. For years now I have been trying to hold down a job that requires me to be present during the core hours of 9-5. As a sick person who is also a parent, I have found this almost impossible. Since having Kaiser and the landslide both my mental and physical health took, it became really impossible. Because, not only am I shit out of luck with childcare, I’m always ill. Meaning, somedays I’m not able to function prior to 11am and other days it’s 8pm before my brain has travelled through and out the other side of its’ fog.

It wasn’t a decision I made lightly. I mean who in their right mind would quit their job during an economic crisis, right? But I really did feel I had no choice in the end. Despite my employer really trying to support me, my own sickness absence, on top of dependants leave to compensate nursery closures and childhood illnesses, remained high. Since starting HRT my memory has been awful, my mental health is fragile at best, and physically I still cannot sit or stand for any duration without being in real pain. I didn’t want to leave my job, but something had to give and I’m not well. I haven’t been well for years. I’ve pushed through until now, for the bare minimum and it has had a detrimental effect on my whole life.

Silly really, but I sat with my hand hovering over the keyboard for ages before taking the plunge to post this. There are so many parts of me that feel as though I’ve failed. As a wife, and as a mother. Some moments I think the guilt will swallow me whole. I’ve agonised over what people will think and indeed whether or not I’ll be able to feed my children without a stable income.

That said, I made this decision with the help of my family because we believe it is the right one for us. I’ve realised it’s not that I can’t work at all, it’s that I need to be able to work around my health and my parental responsibilities. Unfortunately life doesn’t offer many opportunities for disabled parents to be able to do that. However, I’ve recently put my heart and soul into the charity work I’ve been doing for PMDD and I plan to continue to do this, while also trying, once again, to make my writing work for me. So if you’re after some copy, a CV, or are interested in having me write an article for you, please get in touch!

Confessions Of A Chronically ill Mum #20

It’s 2am on Saturday morning, or Friday night- whatever….and I’m wide awake. I have been to sleep but I’m having awful trouble staying there. I had a significant psychological wobble earlier this evening.
After the hype around my debut newspaper article earlier in the week, followed by genuine relief at another good day in the bag for my son (who is really struggling with separation anxiety currently) at
the childminders. This wobble knocked me for six. It shouldn’t have really, because I’m at the end of my cycle, and I know what that means….

For those of you that know about my health already, I won’t need to say much – other than PMDD got it’s claws stuck into my psyche.

I’m a paranoid, angry (fuming actually – but don’t ask me why) tearful, mess of a woman, whom also told the car insurance telephone handler earlier in the day to get a new job because he had the intelligence of a
gnat. Who even am I?

I have felt physically terrified for no
reason. I wanted to lash out at other parents for breathing next to me at the harvest festival. The sound of my kids’ talking and playing made my skin hurt. Don’t even get me started on what Kaiser’s screaming is doing to my blood pressure. I have a mouth full of ulcers, limbs made of lead, period pain that feels like labour, and can’t stop itching – oh and eating!!! And all of that is ‘just’ menstrual – not to mention sitting or standing for more than 5 minutes at a time leaves me in agony, getting in and out of the car and lifting my son makes me want to cry. To add insult to injury, everything I do to relax fails, every book I attempt to read feels like
the words are sliding off the pages and flying the fuck away from me. I just can’t process life at all!

“Stop the waltzers! I prefer the certainty of a prize that comes with hook a duck”

There are so many points I want to make with this blog post. The main one is, these things, this trauma and constant carousel of feelings that come with chronic illness, don’t ever really go away. No matter how long you’ve lived with something, no matter how great the good days are, there’s a lingering trepidation of when the lights might go out again and how long it will take until, or even whether or not they’ll eventually come back on. Of course the evidence suggests they will [the lights] come back on, but it’s hard to believe when you’re run down and in pain.

It’s Saturday lunchtime now and I’m waiting patiently to be seen in rheumatology again. The combination of the constant diarising of appointments, childcare and HRT, is making me forgetful. I’m struggling to keep up with my physical therapy exercises, which I know is only going to exacerbate my pain in the long run, but that’s really the point I’m trying to make in response to all the ableist propaganda circulating at the moment – having a chronic illness is a full time job and when all of your time isn’t being taken up trying to feel better, you’re planning damage limitation for the next time you might feel shit. All of this of course on top of parenting, being a wife, friend, working part time in a regular job and so on. It’s not easy, it’s definitely not fun.

It’s Monday and Kaiser has had another awful day at the childminder’s house resulting in me in tears the same time as he was, with less than a mile in distance between. Shaun had to leave work to collect him in the end. It’s unfortunate that this coincides with the week I’d usually be on my period – which means the rage and anxiety and general feelings of overwhelm are taking hold. I’m again anticipating what the fuck I’m going to do if I have to seek alternative care for a baby that is already so anxious in the face of change. Or god forbid I have to leave my job to care for him full time when I’m barely surviving caring for myself.

Bedtime now and yet nobody sleeps. Shaun tiptoes around the house on his size tens and Ciara is up and down like a yo-yo with various complaints of insomnia. Kaiser will be awake in a minute, desperate for a cuddle.

I love being a mum but I struggle with it so much. Every month I wonder how I’ll survive and what the future looks like if and when I eventually lose my shit all together. Somehow we make it though, we adapt and make allowances and exceptions.

People say I don’t know how you do it and my reply is always I don’t have a choice. But that’s not the only suitable response: another appropriate one would be I don’t do it, we do it. Together! Because without them, there’d be no me. Forever grateful to be lucky enough to have created this wonderful family even with all of our flaws, challenges and trials combined.

Confessions of a chronically ill mum #19

Hi. It’s been longer than my usual long while since I posted COACIM. In fact, I haven’t been writing anything much and definitely nothing so personal. I’ve had neither the inclination or the ability, and I’ve barely been keeping up with my medication not least my mothering responsibilities. It’s all felt like such a lot lately.

Not sure if I mentioned here before, but back in March I saw a consultant about my cholesterol. It was ridiculously high, putting me at serious risk for heart and cardiovascular diseases. I resisted starting medication because I’d not long commenced HRT. I’m already quite heavily medicated for my anxiety, fibromyalgia and migraine, and statins have a bit of a bad rep for side effects. Anyway, last month the consultant called me and said I had no good cholesterol in my body and without medication ‘it’s not a case of if you’ll have a heart attack or stroke it’s a case of when’ adding firmly at the end ‘you’re a ticking time bomb.

This conversation took its toll on me mentally, as you might imagine it would. Especially because since the appointment in March I’d been working really hard on looking after my health and essentially this consultant was telling me it wasn’t good enough. I felt at this point as though I had little choice, so I ignored my reservations and started the statins.

Long story short, so far the side effects are indeed awful and I have been really unwell. The worst flare up in my fibromyalgia symptoms I’ve seen for some time. I have been wading through treacle each day, or at least that’s how it’s felt with the level of fatigue I’m suffering. Brain fog and my memory, which had worsened significantly since starting HRT anyway, is now shot to bits. I’ve always prided myself on having a good memory and taking in information but for the last two weeks I have barely remembered what day it is, and that’s not an exaggeration. I’ve led in bed on days I’m supposed to work and been confused at why my alarm is going off and Kaiser’s dressed for the childminder. I’ve not been able to write because I can’t remember what it is I’m trying to say. It sucks, and this post itself has taken me a week to finish.

As you may know fibromyalgia causes widespread pain and profound fatigue. Since starting statins this has worsened and I have severe muscle pain, while also feeling as though I have the flu, all the time. I’m napping during the day when Kaiser naps and having to throw water on my face to stay awake during a work meeting. I can’t lift my son because my body feels too weak.

Parenting is kicking my proverbial. Day and night, night and day. Even after having a break last weekend to sleep and recharge whilst the kids were with my mother in law – it doesn’t feel like enough. I need a break after 10 hours. Shaun and I are drifting with no real idea where the fuck we’re going because we’re too exhausted to hold a conversation. He is knackered from picking up all the slack and it’s pretty shit because I don’t know what my alternatives to these tablets are. The consultant made it sound as though their wasn’t one. Kaiser has started walking and yes…he’s a total babe, but he’s also hands down the most exhausting human I’ve ever come across. I find being his mum a privilege and sometimes, like now when I’m not feeling my best and being brutally honest… a chore.

I have a feeling Ciara might be going through some developmental changes, because her emotions are all over the place and it can be hard work trying to prize out of her what’s going on. She is a tiny perfectionist whom hates doing badly at anything and it’s become more pronounced this term. I don’t know why or how this has become such a big deal to her because we rarely ever tell her off and absolutely never for getting something wrong or making a mistake. It’s gut wrenching to see your child grapple with their emotions. She also has the hearing of an elephant and questions everything you say, remembers it, then recites it back to you… so there’s no hiding in this house and sometimes let’s be honest, mums want to hide (well I do anyway)

Finally, I wanted to add that I’ve been feeling quite sentimental and at times, extremely lonely. Your world can become horribly small when you’re unwell and people do drift. I’m not blaming those people because I know it’s nobodies fault – when someone (me) is constantly cancelling plans and letting people down, often last minute, you lose your place as first on the list as an invitee…. I just think Covid and everything else that’s going on in the world right now has highlighted to me how insular I’ve become. It’s a bit of a dichotomy for me to be honest, because part of me loves being in a familial bubble and not having to explain myself to people or show up for small talk, but the other part of me is in need of genuine social and human connection. What I do know is I don’t really have a lot to say about much other than my health and the kids, and I’d like that to change soon, adding a bit of me back into the bargain.

Overall, and in spite of what you’ve just read, I’m happy. I’m trying and sometimes even succeeding to not letting myself be sucked down into my usual negative cycle of mum guilt and self loathing. And I feel immense gratitude to be embarking on new journeys and to have had some really amazing and exciting opportunities come up for me recently. I will elaborate at some point but ultimately what I’m trying to say is, I don’t want this post to be all doom and gloom, because my life isn’t all bad in fact it’s mostly good but it’s still hard to live with poor health when parenting small and impressionable children.

I do also have a HRT update for you but for now I can’t even begin to concentrate enough to fill you in on that, too. It’ll come soon if I can manage it! 💙

Confessions Of A Chronically Ill Mum #18

It’s been a while since I’ve written an insert of COACIM. I’ve been busy, trying to keep PMDD under control alongside parenting a riot of a toddler, a somewhat sulky six year old…. Summer holidays and work. So I guess you could say I’ve been ‘doing life.’ For the most part doing life has been good, the summer has been busy and full of adventure. The downside being, I’m still not (and never will be) able to do everything I want to do because of my health, both physical and mental. The limitations it has on my overall well-being might have lessened somewhat but is still profound. However, I’m so grateful, now more than ever for all of the things I can do!!

Since starting HRT I’ve noticed an increase in energy and my ability to move more freely. My joint functionality and all over flare up time is less than it was before commencing hormone replacement. PMDD episodes are shorter too (though not necessarily less intense) I won’t go into too much detail about that now, because there’ll be a separate HRT update shortly. For now, there’s so much else I want to say.

Emotionally, I’m riding the waves while trying to savour every moment we get to enjoy as a family.

My confession this week, is that I’ve realised, in recent months since adding in a few evening plans, just how much I miss dancing. I’ve had two occasions where I’ve been out and there’s been music. The first one was with Shaun, we went to Cardiff to watch The Libertines. They are one of our mutual music loves and it was a long anticipated gig. Thankfully the venue sorted us out with accessible seating and this was in an area with enough room to dance if you wanted to. Though I soon realised, I can’t. I can no longer move freely without pain. Even the ‘dancing’ I can manage, such as waving my arms in the air, causes me pain. While I may be able to walk a little further than I could before (and this is great) I still cannot remain standing for more than a few minutes, and sadly, I definitely can’t dance, at all really! When I realised this I became quite upset. Because let’s be real there’s nothing quite like being able to dance it out. (Fans of Greys anatomy will appreciate the reference) Like I said, I am trying to focus on what I can do as opposed to what I can’t, but it still irks and hurts and leaves an adverse feeling in the pit of my stomach.

The second music shindig I attended was Meatloaf inspired musical Bat Out Of Hell. The show was phenomenal, but again I couldn’t move much. As with standing, I find being seated for long periods really uncomfortable too. Driving is agony and I’m only really comfortable when I’m slowly walking or led down. This can put a real spanner in the social life of a music lover. Yesterday I spent hours nostalgically reminiscent of the bank holiday weekends I’d spend at all day music concerts and outdoor day festivals. Some of this nostalgia was not just mobility related though. I’ve been struggling with the kids in general over the last few days. As the end of my cycle closes in the misophonia creeps out and my tolerance levels reduce to almost zero. I’m snappy and so fatigued I can barely keep my eyes open. Meanwhile, both of my children are charging around like bulls in proverbial china shops, shouting at the top of their small-but-mighty lungs!

Parenting is hard. You don’t need a blog post to tell you that. What I will tell you is that it feels twice as hard when you’re operating on no sleep, struggling to move, and your brain is prisoner to the fluctuations of your own bodily hormones. I don’t want to muddy the waters because we really have had a lush summer. We’ve crammed in a lot and near crippled ourselves financially (and that was on a tight budget) but there are so many memories from this time we’ll keep. No matter how nice it’s been though, I know I’m not the only mum who can’t wait for routine and early nights to resume.

Another confession is that I’ve been feeling uneasy about using my disabled badge and sunflower lanyard. When attending The Libertines gig I had access to the disabled toilets so that I didn’t need to queue in long wait times for the loo. This was necessary because as mentioned - standing for long periods causes me a lot of pain! Despite the necessity I still felt as though I was being judged. Groups of men kept trying to get into the disabled toilets after me and even said the dreaded words ‘There’s nothing wrong with you’ to my face. It’s a confrontation that I just don’t want to be having whilst I’m more than capable of telling them to fuck off and stating my rights as a disabled person, I don’t want to. I instead want to be able to enjoy my night out with ease and not fear the need to defend myself against other people’s ignorance. 

Please remember that not all disabilities are visible. Not everyone whom is disabled will appear to be, and with risk of sounding really glum here, it could be you one day. None of us are immune to ill health and injury. You don’t even have to be kind if it really pains you to do so, you just have to mind your own business.

Ask Me About PMDD

Earlier this week I shared the below image to my Instagram stories and gave you the opportunity to ask me any questions you might have about PMDD.

Image used with permission from IAPMD

Having suffered with this illness for more than 20 years I feel I am equipped to answer questions relating to the condition and as a result of my own experience. However, it’s important to note I am not a medical professional and all answers are my own words, with no association to any organisations that are linked in this article. Relevant links are included so that you are able to corroborate mentioned treatment options and use diagnostic tools.

How did you obtain diagnosis?

This question came up several times, with many of you saying you had tried and failed to have PMDD accurately represented when speaking to GP’s and medical staff. In my experience from discussing PMDD within the online community I have come across similar tales and it’s one that follows a similar trajectory to that of my own experience. I first suffered from mental illness at aged 13, suicidal ideation, attempts and thoughts occurred, followed by bouts of extreme rage, panic attacks and enduring anxiety. It wasn’t until some years later I had made the connection between my feelings and my menstrual cycle. I remember seeing a GP aged around 19 when I said I believed I was suffering from a hormonal imbalance. I didn’t know at this stage that PMDD is a reaction to normal hormone fluctuations, an imbalance was my assumed interpretation. She told me all women suffered ‘some PMS symptoms’ and that there was no diagnostic blood tests that would give insight into my mental health and it’s correlation with my cycle. Since then I have seen the GP and several gynaecologists in excess of 100 times for the same problem. When I finally began to be taken seriously around age 23, my GP still referred to my condition as severe PMS. Last year aged 33, I became so unwell during pregnancy and after the birth of my son that I was hospitalised and it was only then, under psychiatric care that a psychiatrist referred to my illness as Premenstrual Dysphoric Disorder. More recently this year when seeking further intervention privately, the Gynaecologist (whom is also head of his department in an NHS hospital) again confirmed a PMDD diagnosis.

Diagnosis is a huge relief, it allows us to stop gaslighting ourselves into believing we are raging hypochondriacs. BUT clinical diagnosis is not necessary for treatment of the condition. Your GP can advise, and treat PMDD symptoms even whilst still referring to it as PMS. If these early treatments such as lifestyle changes, hormonal birth control and SSRI’s work for you, you may never need a formal PMDD diagnosis. That’s not to say you won’t want one for your own clarity. If this is important to you, I suggest keeping on at your GP for specialist referral. If you are struggling to get a diagnosis and believe you have PMDD please head over to IAPMD for help and information on diagnostic criteria and talking to your doctor. They have an array of tools to help you cycle track and a glossary of terms that will help you explain exactly how your condition affects you see: Iapmd toolkit.

You also have fibromyalgia, do symptoms of both conditions overlap?

In short, yes. In detail, a higher percentage of fibromyalgia sufferers are women. A symptom of the condition in women can include painful and heavy periods dysmenorrhea. It’s also known that many persons living with fibromyalgia will suffer mental health problems, so it’s my opinion and personal experience that it’s fair to say symptoms overlap. PMDD can trigger a flare up in fibromyalgia pain, more prominent and prolonged fatigue, as well as sensory overload, brain fog and migraine attacks. The key difference between the two is that PMDD only occurs during the luteal phase of the menstrual cycle, which occurs between ovulation and menstruation. Instead, fibromyalgia symptoms can and do occur at any time during the menstrual cycle. I am often alerted to the arrival of PMDD by waves of crippling anxiety and intrusive thoughts that disappear when my period arrives. However some physical symptoms that might be triggered by PMDD end up lasting long after it’s end and will alert me to a Fibro flare up. Also with my experience of fibromyalgia, pain doesn’t ever disappear entirely. I always have some form of baseline pain. Many people also report joint pain with PMDD along with migraine attacks, these are present premenstrually as a result of PMDD and can occur and worsen at any time with fibromyalgia.

Can PMDD come on at any time in life?

Yes, it absolutely can. Some people find their PMDD starts or worsens with a reproductive event, such as menarche (which is when mine started) after pregnancy/birth or miscarriage (when mine worsened) or with the onset of perimenopause. For some it will seemingly come from nowhere. It is believed that PMDD can also be linked to genetics, childhood trauma and depression.

Is PMDD a disability?

Here in the UK, you are covered under the Equalities Act and therefore thought to have a disability if you have an impairment that is either, physical or mental and the impairment has a substantial, adverse and long term effect on your normal daily activities. Depending on the severity of your symptoms you could be covered under the act with a PMDD diagnosis. When explaining PMDD to my employer I advised how it affects me, for example: I suffer menstrual migraine attacks that leave me bed bound for days, along side extreme fatigue and joint pain. As well as this I also suffering debilitating anxiety, intrusive and suicidal thoughts and panic attacks, which make carrying out daily activities impossible. Cognitive impairment such as brain fog and an exacerbation of any underlying symptoms are also worsened with the onset of PMDD. The fact these symptoms occur every month, and last for 2 weeks makes this a long term condition with substantial impact on my life and ability to function.

Why do doctors prescribe SSRI’s for PMDD if it’s hormonal?

After diet and lifestyle changes SSRI’s are a treatment option to help manage the mood and anxiety symptoms that are present with PMDD. Whilst you may feel you aren’t depressed, some women (myself included) have found benefit in taking SSRI’s, both month round and only or double dosing during the luteal phase of your menstrual cycle.

Are palpitations a symptom of PMDD?

PMDD has many, varying symptoms. They range from severe mood alterations, to debilitating physical symptoms. I personally do experience palpitations during both ovulation and the luteal phase. I’m also extra sensitive to stimulants such as alcohol, sugar and caffeine during this time. All of which make palpitations worse and more noticeable. If palpitations are persistent it’s always best to get them checked out to rule out other possible causes, though I know many people experience them alongside profound anxiety, so if this is one of your PMDD symptoms it could also be exacerbating your palpitations.

Summary

  • PMDD is a chronic and debilitating condition with a range of symptoms that vary in severity.
  • There are a range of treatments used to treat PMDD and their effectiveness is very individual.
  • PMDD can and does exacerbate underlying conditions, this is sometimes referred to as PME (premenstrual exacerbation)
  • PMDD can occur at any time during a person’s menstruating life.

I hope this information is helpful. For more detailed and expert advice head to IAPMD where you’ll find everything you need to learn more about PMDD.

HRT to treat PMDD – Week 5

This week if I had to use 3 words to sum up my HRT experience I’d use: BLOODY, ENTHUSIASTIC and BRAVE.

Bloody

I’m still bleeding two weeks after the last time I told you I was bleeding. Which isn’t ideal. It’s not spotting either, it’s a couple of pad changes a day. The main cause for concern here is I can’t really tell what is or was my menstrual period and so I don’t know my cycle as I normally would and therefore struggle to determine how my symptoms relate to which phase. However, for now, I’ll take the blood. I don’t want to put up with it forever, of course that would become troublesome, but so far the blood I’m losing is a minor problem and is being outweighed by positive changes and more calm.

I’m also unsure whether this bleeding is related to the oestrogen gel, or the progesterone in the mirena coil as both report similar effects. It still needs noting though, because it is a troublesome symptom if it continues long term, and I don’t want to have to add an additional progestin treat it.

Enthusiastic

I chose this word because for the most part it’s how I’ve felt in the last two weeks. Potentially this suggests it’s when I’d usually be in the follicular phase, or that HRT is doing the job it was prescribed for. The trouble with me is, I am a pessimist, after decades of cyclical hell I’m almost programmed to think it can’t be working. However if I’m being honest, with both you, and myself, I have felt better, less anxious and more able to cope. It’s summer holidays -I mean if there was ever a time that was going to tip me over the edge this would be it! But I’ve managed to get out with both kids, I’ve caught up with friends (just having the energy and enthusiasm for this, is hugely positive) In the last few days I’ve suffered migraine attacks and felt fatigue and muscle pain (which I think is related more to Fibro than PMDD) and still my mood hasn’t plummeted. Moreover I’ve not been plagued with those awful intrusive thoughts. All of this, for me, is quite something!

Brave

I chose this word because I have done things I’d usually panic doing, like driving places I don’t know, on my own, and trying to get my steps up, increasing my movement. I’ve still had anxiety around doing these things, it doesn’t just disappear, but it’s anxiety in relation to normal life stuff as opposed to being crippling, as is normal during PMDD.

Gynae Appointment

I saw the gynaecologist to discuss my treatment plan and review my use of HRT. He got full marks as soon as I entered, when he thanked me for my email. I was relieved to hear that he had taken the time to read it, it was long! I explained all of my symptoms to him over the past two decades. He asked me how I cope during PMDD and I explained to him that for the most part, I don’t. Some would argue this, but I am forever calling on my mum and husband to come and help with the kids or indeed in a panic that they then have to talk me out of. I told him I’ve been in crisis so many times premenstrually that I almost feel it’s normal. That I swing from feeling like ‘I’m going mad’ to being able to cope. He fully supports a PMDD diagnosis. To be honest just hearing those words as opposed to the ‘severe PMS’ my GP always uses was such a relief that I ended up leaving in tears.

What was even more positive for me was the options he presented me with. Just finally feeling as though I have some was effectual in calming my racing mind! I’ve always known the treatment pathway, I’ve just never been able to get a doctor to consider me for the next stage before now!

We concluded that I will remain on the HRT for another few months unless I do not see any continuity with the improvement, or I experience a relapse. The next phase is chemical menopause which is induced by injection of GNRH analogues. As it’s an open referral to a private hospital, it’s left open so I can call him any time and book the next available appointment for the GNRHA shot. If I go down this route I will leave the mirena in situ and continue to use Oestrogel. I would then trial the medication for 6 months before deciding whether or not to have surgery to remove both of my ovaries and Fallopian tubes (Bilateral Salpingo Oophrectomy)

No major surprises at this appointment I knew what was to come next, I just thought I’d have to fight harder for it. Relieved to say I didn’t. The consultant explained that to obtain the injections for chemical menopause, I would need to have the first one in secondary care (Private treatment centre) and then I could be referred back to primary care to receive the injections on the NHS. This was really reassuring considering my mum paid for my appointment and I have £14 in my current account, so there’s no way I can afford private healthcare in the longterm. That said it was still worth every penny to us as a family, to enable me to have these discussions with a knowledgeable doctor whom is experienced in Premenstrual Disorders. I feel like there’s hope, and options and both of these were in short supply before my appointment.

I plan to write another blog really soon to answer questions relating to PMDD, but please remember IAPMD are the oracle when it comes to premenstrual disorders, so head on over there if you need advice, questions answered, or resources to support you.

HRT to treat PMDD – Week 3

If I could sum up the last three weeks in three words they’d be INSOMNIA, ANXIETY, and HOPE.

Insomnia

So let’s start by telling you about the insomnia. I’m not going to sugar coat it, it’s been horrific. It began almost as soon as I started using Oestrogel and unfortunately it remains. If you’re reading this, you’re probably a HRT user yourself, menopausal, someone who thinks they may have PMDD or a PMDD sufferer. Or maybe you’re none of the above and have no previous insight into hormone replacement therapy at all… I know it can be confusing when deciding whether or not to try a new treatment, especially with how the media portray HRT as either a wonder drug (and for many it is) or a carcinogenic. But like with anything we put into our bodies, there are side effects to consider. For me, insomnia has been one of the most problematic. As a mother and someone whom lives with chronic fatigue and on occasion hypersomnia, I have found this particular symptom difficult to navigate. Mainly because, if you’ve ever lived with insomnia you’ll be aware of how it can feed into anxiety. Just how dark the depths of the night can become when sleep is evading you.

Anxiety

Since beginning HRT I’ve had loads more energy – which to some would be deemed a positive side effect. However, for me it’s not been so good, because the energy I seem to now have in surplus, is creating a quagmire of anxiety and ‘nervous tension.’ In short – I can’t relax. I’m feeling often keyed up and on edge.

A few other notable side effects have been:

  • Hot flashes
  • Nausea
  • Breakthrough bleeding – though this could be attributed to the recent mirena coil I now have in situ.

Hope

But I’m still hopeful…. Mainly because what else have we got if there’s no hope? And also because it’s very early days and adding in additional hormones was always likely to cause some symptoms particularly when you’re adding them to treat a hormone sensitivity and not necessarily a depletion as you would in menopause.

I’ve also just finished reading I BLAME THE HORMONES by Caroline Suzi Church and that gave me hope. It’s something I want to review on its own blog post, because the similarities between mine and Caroline’s PMDD trajectory are so similar, it’s more than I can possibly squeeze into a paragraph on this blog, but if you have PMDD you absolutely need to read it! Not only is it scarily accurate, a whole half of it is dedicated to treatment and self help. It really is a wonder of a book with so much insight into reproductive mental illness.

Positive changes

Finally, I need to finish by saying there have been some positive side effects, though fewer, it’s important for me to be transparent. Many people have great results using HRT and as mentioned above I am still really hopeful that I too, will get to experience more of these going forward. One positive change I’ve noticed is a reduction in the severity of my overall joint pain. Which is pretty huge considering I’m in pain almost all of the time. I’m not pain free now by any means, but my joints are beginning to allow more range of movement and I can only attribute this change to coinciding with my use of HRT. Another thing that’s improved is the horrific intrusive thoughts I was having. They are not gone altogether, but when it comes to feeling out of my mind I’ll take every single win (however small) I can get and this is one that suggests HRT could be the right direction for me.

Disability Pride

Disability Pride Month can mean various things to each individual in the disabled community.

Some people may see the month as a time to celebrate their individual success and accomplishments, whereas others may celebrate the feeling of pride about being disabled.

https://www.inclusiveemployers.co.uk

Have you heard about Disability Pride? Honestly, it wasn’t until a few years into my diagnosis that I first heard of it myself. Though I think that’s because I wasn’t referring to myself as disabled back then, despite spending weeks at a time in bed, wracked with pain and requiring months and months off from work. Unable to function without help, everyday activities became once in a blue moon activities. There have been many times over the last six or so years that I’ve been too unwell to dress myself or shower. Not as a one off, but consistently for long periods of time. At times I’ve been too disabled to work and to walk. My own disability pride has arrived, but only after battling years of internalised ableism.

I was once a person that believed disabilities were -for the majority at least- visible. I believed you had to have a permanent wheelchair or an aid, a prosthetic or an obvious disfigurement to be considered disabled.

I believed if you were depressed you had to look depressed (whatever that looks like) Despite myself suffering from mental ill health since childhood, I still had this idea that mental illness meant being obviously and outwardly ‘crazy.’ (I use this term to poke fun at my own misconceptions and it is not intended to cause offence.)

I’m here today to say, I was wrong. Not only was this way of thinking disrespectful to minority groups including those with disabilities, it was wholly inaccurate, and it was disrespectful to myself. I spent a lifetime playing down my own experiences, symptoms and health issues, because there was no way I was possibly suffering as much as someone else. But there’s an issue with the notion that other people have it worse and therefore we must ‘suck it up’ and the issue is that it’s harmful. It’s harmful because it attempts to invalidate a person’s suffering. Someone will always have it worse, we know this without a doubt, but to apply that to a person’s suffering (including your own) leaves us open to discrimination, feelings of shame and guilty whilst also furthering to escalate mental health issues.

Disability pride means celebrating all disabled persons regardless of the severity of their disability or it’s visibility. Not everyone who becomes disabled will remain so forever, though many people with chronic and ongoing illnesses will be impacted enough by their conditions to be considered disabled.

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

https://www.gov.uk/definition-of-disability-under-equality-act-2010

My battle with internalised ableism is an ongoing one. Despite feeling more comfortable, open and able to discuss my health and it’s effects on my life, I still feel some guilt around doing so. I feel as if I am seen to be attention seeking if I tell the truth about how my illnesses affect me. There’s a real crossover between being positive and not focusing on all of the things you can’t do, and downplaying symptoms to appear more positive to the outside world.

In 2020 around 20% of the working population reported disabilities. This number, though higher than previous years, is still disproportionately low, considering more than 1 in 5 of us are affected by disabilities in the UK. It is unfortunately more likely that disabled people don’t feel able or comfortable disclosing their disability to their employers. Disability pride is a great way to celebrate disabled people for whom we are. As well as raise awareness, and shine a spotlight on discriminations such as the disability pay gap and lack of world wide accessibility in the work place.

The purpose of DP is to highlight that a disability can have a significant impact on a person’s life, whatever the cause and regardless of its visibility. It also encourages more people to be proud of their disabilities. Perhaps you’re like me, and find it hard to pride yourself on things that have felt traumatic, debilitating and painful. Or perhaps you are proud of how far you’ve come, in spite of, or alongside your disabilities. Perhaps, you’re just proud you’ve managed to stay alive. And that’s ok too.

Disabled people are almost twice as likely to be unemployed as non-disabled people, and 3 times as likely to be economically inactive

https://www.scope.org.uk/media/disability-facts-figures/
Disability Pride Flag
The charcoal background – to represent those in the community who have been subjected to ableist violence, as well as representing protest in the community.
The “band/road” shape – represents how disabled people face barriers and have to navigate their life according to them. The different colours in the shape represent the creativity in navigating life, and how the community is breaking free from stigmatisation.
The colours – represent the various experiences and needs (mental illness, developmental disability, invisible disabilities, physical disabilities and sensory disabilities) in the disabled community.

There are many ways you can still get involved in disability pride month. Sharing on social media, writing your story, and talking to your employer about supporting disability pride, are all great places to start.

Confessions of a chronically ill mum #17

It feels as though the last week has been littered with extremes. I have felt full all the emotions. Health has been quite poor, a migraine attack the weekend saw me in bed for three days. The longest I have been out of action for a while. To make matters worse I was due to be out with mum and friends yesterday and had to cancel. I’ll never get over the sinking feeling of firstly, having to let people down, and secondly, serious fomo at having your life made smaller because of illness.

I’m waiting for a call from the doctor regarding my referral for a more detailed treatment plan for PMDD. At the moment despite taking medication and birth control I seem to have fallen back into a fortnightly switch. Meaning, I get two goodish weeks, and two that set me on fire with the flames of hell. (Not an exaggeration) My anxiety has been so palpable the last two weeks, coming at me in waves, and I’ll confess, there’s been a few incidences where I’ve felt really terrified, again. Terrified that all it’s going to take is that one hormonal cycle that tips me over the edge and into madness. For those of you that think I’m already over that edge… Hun, you have no idea!

A few things have been niggling at me for a while – like Kaiser’s birthday and feeling some panic around what I remember from hospital and his birth. Those feelings of insanity and desperation- and PMDD seems to bring those niggles into the spotlight. I’ve tried again to write Kaiser’s birth story but it just too painful and triggering for me to go back there, it’s also too long! So much happened in those ten days I was in hospital, every-time I think I’ve told the story, I remember more, and it’s mostly hell.

Another thing PMDD does, is make my physical health so much harder to manage. This week I’ve had hives, migraine attacks, nausea, all over body pain in the extreme, and profound fatigue like someone has pulled the plug on my body and it cannot function until it’s recharged, which isn’t as easy as just getting some rest, when you’re a mum!

I think I mentioned quite recently that I’ve been working really hard on trying to be more consistent with my blog. I’ve also had a couple of other writing projects in the pipeline. I’ve had a few rejections too, which have been quite hard for me to move past. Not because I think I’m better than I am, but because it takes so much energy to be creative that when it doesn’t pay off as you hoped it would, it can be disappointing in a much more personal way. As I said, hormones don’t help my mood and undeniably influence how I perceive rejection whilst in luteal. It’s funny though, I’m writing this today after a hellish migraine, and there’s some pattern to me feeling a need to write after an attack. I have no idea if there’s any scientific evidence to suggest the brain becomes more focused after migraine, but for me, it seems fitting.

It’s been mentioned to me that I seem fixated with my hormones lately. And looking back at my last few COACIM it would appear to be true, I am fixated. However, I don’t think it’s just lately. I’ve always been obsessed with them, because of their insurmountable affect on my life. But I will confess again, that since having Kaiser they have felt magnified and I am both distraught and fascinated at how the fluctuations of hormones affect me (and one in twenty other women, too.) It’s hugely important for me to raise awareness of hormones and their effects on health, mental health in particular. So this is one fixation that’s here to stay. So much so, my next blog post is going to be about why you should track your menstrual cycle.

Also this week, I spoke to Enable magazine about living with Fibromyalgia and the impact of the condition. The lack of support during covid, for people in chronic pain, along with the changes to NICE guidelines and the prescribing of pain relief. The publication hasn’t gone live yet, so I don’t know how accurately I’ve been quoted, but when it does I’ll definitely share.

Finally, the kids…. Kaiser has been having tummy troubles since transitioning to cows milk and this has further affected his already crap sleep. And Ciara, well, she’s been her own kind of emotional. She is such a good kid, but communicating with her can be difficult at times. I notice she isn’t like me in my directness, she can hold back and that can make me panic, thinking there could be something going on she isn’t telling me about. However I also know, I need to learn not to push her too hard, together we are navigating this new stage and trying to respect each other’s feelings. It’s a whole new world, and finally I’m about to say something I never normally do…. She’s growing up too fast!

All in all, I’d say this has been a below par seven days. Life has felt harder, but in keeping with trying to retain some positivity, I am confident it will improve again soon. For now though I’ll leave you with some pics of the kids, because they may be enough to cheer someone who may have also had a shit week, up!

Almost one, not a fan of the sun 🌞
We chose to visit a man made beach on the coldest day of the week

Confessions of a chronically ill mum #16

So much can change in a week. Such as estrogen dissolving as fast as an effervescent pill. Or progesterone over egging the pudding and ballsing up those chemical reactions, more catastrophically than Walter White on his first cook. I’m speaking in metaphors because I’m bored of saying the same thing about how I feel being attributed to hormones. My boredom doesn’t make it any less true though.

This week I’ve felt my patience being stretched and my rage reaction time quickening. My body has shown signs of a flare up in similarly dramatic fashion.

Aside from that though, there have been good things happening too, and as is the new and improved version of myself; I want to concentrate on those. Not because I’m feeling overly positive, but because I am trying to extract the positive from days when there feels like there hasn’t been any.

On Saturday I wrote a caption on Instagram that saw me confessing to finding parenting both of my children, whilst alone and with physical limitations, really fucking hard.

The reason for the post wasn’t even so much about the kids, but more in relation to how I feel about myself and my disabilities. I know they are there, I know how much they impact me, and you all know, because I write about it. However, in my everyday life I find myself playing down how bad things get sometimes, because I’m worried about what other people might think. Or even sometimes because I do go as far as gaslighting myself and telling myself that I’m the problem, rather than the fact that my being unwell, is the problem. I compare myself to other mothers, as many of us do, but I compare myself to healthier more able mothers, and that is not a fair comparison. Being kinder to myself and remembering that I have limitations is an important part of healing. Even if that healing must occur every luteal phase, every flare up in chronic pain, with every migraine attack, I must remember it’s not my fault.

After I posted the above to Insta I packed up a picnic for Ciara and I, leaving the boys at home and we went out to meet up with our friends. A girly afternoon in the woods was exactly what was needed to distract myself from overthinking, to calm down and get some reprieve from the noise and the chaos of being home alone with both children earlier that morning. It did wonders for my mood in lots of ways and was great bonding time for Ciara & I. We made a den in the woods and ate chocolate cakes and cold pizza slices from tinfoil. Ciara climbed trees and used her imagination whilst I got to sit and have a moan to a friend. It was therapy, and simultaneously a reminder that these are things I need when I’m not feeling great. When I’m overwhelmed and unable to fight through the mental and emotional fog of everyday life. I need to take a break, get outside, force myself out the door and just enjoy being away from my phone pinging a comparison inducing notification every 75 seconds.

That little outing also reminded me, it’s ok to not love every second of motherhood. Reiterating to me that my not loving every second of motherhood, has no bearing on my love of being a mother. Which is an insurmountable amount of love. I just needed the quiet time to be able to reflect on that.

Outdoorsy but make it chill
Unless you’re six, then make it fun.

This coming week I have a lot going on in general ‘life stuff’ terms, and I need to remind myself of the things that soothe me when my mental health, hormones, or physical ailments are drip feeding their steady dose of hell into my body.

Do you have a go to self soothe aid? During therapy last year, one of the first things the psychologist advised me to do was to create a self soothe kit. I plan to write about this in more detail in a new blog, but until then, do share your personal self soothe favourites – but keep it clean! 😜

A novel for the migraineur

As someone who identifies as disabled, living with several debilitating chronic illnesses, I am forever searching my beloved books for representation of such characters. Until now I’ve been yet to find a protagonist whom is presented as disabled and humble. A character doing things along side of their disability, as opposed to in spite of. So many portrayals of disability can come across as though everyone living with one should be more productive, and offering accurate representation of invisible yet life limiting chronic illness, is paramount for awareness. Fiction writers are getting better at being more inclusive, particularly with mental health in narratives, but many are still falling short on the disability front. It’s a hard balance to strike when wanting to write exciting plot twists, but including a realistic representation of disabled or mentally unwell characters. What tends to happen is, a disabled character may get a side part in an able bodied person’s story. Or a mentally unwell character might end up being the villain in an attempt to emphasise the extremity of an illness, but I’m pleased to say, not in this book.

Seven Days In June by Tia Williams is a tale, written with grit and heart. Honestly, I devoured it, what a marvel! A book that really inspires the likes of me, a chronically sick, wannabe author.

Eva Mercy is a single mother and bestselling erotica writer who is feeling pressed from all sides. Shane Hall is a reclusive, enigmatic, award-winning novelist, who, to everyone's surprise, shows up unexpectedly in New York.

When Shane and Eva meet at a literary event, sparks fly, raising not only their buried traumas, but also the eyebrows of the Black literati. What no one knows is that fifteen years earlier, teenage Eva and Shane spent one crazy, torrid week madly in love. While they may be pretending not to know each other, they can't deny their chemistry - or the fact that they've been secretly writing to each other in their books through the years.

Over the next seven days, amidst a steamy Brooklyn summer, Eva and Shane reconnect - but Eva's wary of the man who broke her heart, and wants him out of the city so her life can return to normal. Before Shane disappears though, she needs a few questions answered . . .

What the blurb doesn’t tell you, is:

Protagonist Eva Mercy lives with the (often invisible) disability, migraine. The pages dedicated to her illness are raw, heart wrenching and honest, despite their fictional nature. Eva is a complex character and Williams is a perfect story teller. Offering up a window into the life of a young disabled mother. Not only is Eva a disabled person but a talented author, mother and sexual human being, too! Real life with migraine is often painkillers and dark rooms and this book captures that, even down to triggering smells and ‘face melting’ pain. It also tells the full story, the story of a woman with complex emotions, sexual desires, ambition and drive, that is often hindered by migraine attacks. As is her ability to parent and participate in loving relationships. It links trauma which is so often the catalyst to a life of chronic pain. But includes subtext, relating to mental health and teenage mistakes, drug abuse and even parental neglect.

A Reese Witherspoon Book Club pick

If I had to rate this book in stars I’d give it a full house simply based on the mention of migraine, and the debilitating nature of their attacks. However, I’m giving it a 4.5, and the reason I hold back the full five, is that the plot itself, whilst raunchy, does teeter over the edge into contemporary romance. If happy endings aren’t your bag, this book may not be for you. What I will say, is the road to happiness is portrayed with honesty, stubbornness and heart. Bonus, it’s a relatively short read that isn’t clunky to digest.

Praise for Tia Williams. You have a new fan!

Buy Online at Amazon now