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.

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 #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.

Confessions of a chronically ill mum #15

Hey! If you’re reading this, thank you. I’ve been really trying to up my blogging game of late, and it’s hard to keep up the momentum to post regularly sometimes, so I appreciate and value your time as readers, immensely.

I posted to Instagram yesterday confessing that I’m feeling really quite triggered by my son Kaiser’s fast approaching first birthday. I don’t remember feeling like this on Ciara’s first birthday, despite the memories of her in NICU I just felt proud and glad to have made it twelve whole months, and whilst I still feel proud and glad to have made it twelve whole months with Kaiser, the memories are stirring up emotion, too!

In other news, I’ve had my first physio appointment 18 months after the onset of pelvic dysfunction. It’s a long road to regaining strength, but I know I need to focus and do the exercises provided to get the best results.

Another confession from me this week, I’ve been eating really badly. I have zero motivation, hormones are wreaking their usual havoc and I can’t focus on eating well. I’m craving all the wrong foods and it’s doing me absolutely no good whatsoever. I need to do better. I know that diet affects how I feel and even though I know this I still find it so bloody hard to get it right. Our Gousto box usually turns up on a Monday and at least takes one problem (deciding on what to eat) out of the equation. Except, this Monday it didn’t turn up and that means I have to go shopping with no idea what to buy and even less idea of what to cook. If you’re a food blog, help a girl out, give me your best ideas.

Platty Joobs Stuff

I had a bloody lush little rendezvous with friends over ‘Platty Joobs’ last week, it was proper soul food. If you’re wondering if I’ve suffered because of it, then the answer is not as much as I thought I would. I really did enjoy myself despite not really drinking much alcohol. I laughed a lot and just felt really safe and able to be myself, which is something I value in my adult friendships. Following the rendezvous, Shaun and I spent all day Friday in bed, eating, chilling, binging Power Force and just being our pre kid selves, which was a delight. On Saturday I was starting to feel hormonal and my mood plummeted a bit, I’ve been feeling Fibro flarey for weeks and this was more prominent on Saturday too, but we got outside with the kids and it perked us all up for a few hours. Following that, Kaiser was sick everywhere and has slept like shit since. Oh and Ciara has another cough. The joys, eh! You know what though? We’re ok. We’re not great, we still struggle, the battle is ongoing, but in between, during mundane moments and fresh air, and sofa snuggles, we’re ok.

PLATTY JOOBS
WOODLAND WARRIORS

Final note, please remember I’m still looking for content for Dear Steph you can email in your dilemmas to divamumsteph@hotmail.com

Confessions of a chronically ill mum 13 – I’m back

COACIM had a bit of a hiatus. This was unintentional but life has been both busy and really quite difficult in recent weeks. I’ve not been as active on socials as I usually would. My youngest child Kaiser, has been quite poorly. This has coincided with both my return to work and my discharge from perinatal mental health services. You can probably imagine what I am likely to say next… Yes, I’ve had a flare up. An exacerbation of my symptoms is common with life’s stresses and I’ve been feeling pretty rubbish in general. Mentally, I am still coping. My discharge from PNMH definitely rocked the foundations I’ve built though, and it’s been a weird and destabilising week.

Migraine attacks have plagued me, I had been back to work just days when I had to leave early to collect Kaiser from childcare because he was so unwell. It was also my mum’s 60th birthday. We’d had a weekend away planned that my sister and I had bought her as a present, I wasn’t sure Kaiser was well enough for me to leave at home, and I wasn’t sure I’d be well enough to attend myself. As it turns out, I did manage to spend a few days away with my mum.

It was lovely, not just to chill out with my mum but because one of my great friends came up from Devon and stayed with us also. I don’t get to see her very often and always miss her dearly, so to spend a few days in her company, alongside celebrating my lovely mum’s coming of age, was amazing. Amazing doesn’t mean perfect though, unfortunately after a walk Saturday I spent all day Sunday in bed unable to get up and move my body freely without crying out in pain. Several times my mum had to come into my room and help my up out of bed and onto the toilet. My life’s reality is hard to accept always, but particularly when I’m supposed to be celebrating and bringing the fun with me. I didn’t drink any alcohol so there was no trigger warning, just a body that doesn’t function well at times, and those times are usually times I am trying to live. Somedays I thrive but most days I just survive.

Kaiser is recovering well but the four top teeth that all cut at once in his tiny little chops, are still giving us hell, as is his endless cough!

I’ll confess, I felt a whole heap of ‘mum guilt’ about leaving him with my husband. When my babies’ are unwell I want to be with them, comforting them. I also wanted to be there for my mum to celebrate her sixtieth. I don’t know why I feel the need to explain this, but I did ensure Kaiser’s symptoms were well managed before leaving him to recover with his dad and without mummy cuddles.  

What’s also been really arduous has been talking myself down when feeling anxious, without the support of the community perinatal team helping to keep me in check. My discharge with them was emotional. I have been supported by them for a year and that’s a long time when you’re spending it living day by day, often hour by hour, sometimes minute by minute. I’ve had a few wobbles already and I was only discharged Wednesday, when thinking about moving forward and how I navigate this brave new world on my own I often overthink and find myself panicking. I made great connections with my key-workers’ and whilst there were always clear professional boundaries, it’s not easy letting go of relationships that have served you so well. I felt really truly supported for the first time in my life by professionals, and I’m worried I’ll have to go back to fighting for basic support and healthcare. I write this knowing it could be worse, but always wishing the system was better.

An Instagram post I wrote just a couple of days before discharge

For now I need to get back into the habit of better self care. In recent weeks I’ve resorted back to eating crap, the fact I’m not able to move much again doesn’t help, but it stops now. I’m restarting getting my diabetes coursework back out, along with my DBT handbook and I’m taking action before things spiral again.

I know what I need to do I just need to learn to maintain healthy habits and ditch the many unhealthy ones I seem to find so easy to stick to!

In other news – you may have seen on my ‘News’ page that I’ve been nominated for two awards in the Mental Health Bloggers Awards this year, and I’d really appreciate it if you’d take a few minutes out of your day to give me a vote. Your support continues to mean so much to me. Vote 🗳

Confessions of a chronically ill mum #10

Can’t believe it’s been ten weeks since I started these musings. It’s amazing for me to look back and see the peaks and troughs, highs and lows. I’m very aware that I started writing #ConfessionsOfAChronicallyIllMum quite soon into starting intense Dialectal Behavioural Therapy

For me, I can really see how therapy has helped me come to terms with a lot, and also manage life with chronic pain, physical illness, flare ups of all conditions, as well as PMDD. I would be lying if I said that my hormones are no longer upturning my life every few weeks, because the shift into luteal is still very prominent, despite being on birth control that claims to reduce the frequency/stop ovulation, I am definitely still ovulating. The good news though, is that knowledge and coping skills really are power when dealing with any kind of life trauma, even if that trauma occurs repeatedly.

But and it’s a big but…. No matter how many tools are in your arsenal for the bad days, no matter if you have lots of support or none, there will be days that completely derail you. I know, because I’ve had several myself this week. A visit to the hospital to talk through the treatment options and risk factors for my cardio vascular health, the penultimate therapy session for said DBT group, meaning discharge from the perinatal service is imminent, and being a few days post ovulation, these factors sent me into a spiral. I was wracked with anxiety, up all night, ruminating, latching onto intrusive thoughts, and getting angry and paranoid. I know one hundred percent that I am due on. I know this is premenstrual, and on its own it’s bad enough. Having these additional life factors occur during the luteal phase has highlighted to me, that my coping skills are not absolute.

Kaiser is still teething, he’s been teething since the day he was born, I swear! And he still never sleeps at night. I thought Ciara was a needy baby, and she was, in lots of ways, but this kid is next level. He’s also (dunno if I’m allowed to say this) a typical boy! He’s into absolutely everything. Spending all day oscillating around the furniture, then throws himself off of it 4 or 5 times for good measure. You cannot take your eyes off him for a second and it’s hard. I’m exhausted. I’m also always keyed up and on edge trying to keep him safe.

Despite knowing these things are par for the course of being a woman with a Premenstrual disorder and many chronic health problems, and despite knowing this with Kaiser is all part of #mumlife it’s still not remotely easy! Because for me, it’s not just #mumlife it’s #Sickmumlife. Every hour of every day is spent chasing this kid around and I don’t have the energy for it. I also suffer dearly for the privilege of being parent to two beautiful kids. I have to pay for my time with them, in energy depletion and excruciating pain. I am robbed of time with them because of PMDD and the crippling anxiety it brings with it. I lose weekends with them to migraine and fatigue, and I struggle to provide for them because I can’t turn up often enough to do my job! Also… getting any government help for people who need it is like pulling fucking teeth.

Don’t get me wrong, I’m not saying for a second that I have it worse than most, I know that’s not true. I’d also never say that I am unlucky, because that’s also not true. I just want to sometimes be able to say it’s hard and for someone not to try and offer me green tea suppositories, or a commentary on why their life is harder.

I’d like for people to stop dropping in those two little words at least. Eg: At least one of them’s at school. At least you’re not really disabled. I am! For fuck’s sake, I am!!

Having to prove or feeling like I have to prove the status of my health & illnesses is draining. When at the hospital Thursday, as I hobbled in to the consulting room the nurse asked me what I’d done to myself?! I was so fed up by her question that I literally just said ‘I’m disabled’ because it wasn’t enough that I was wearing a sunflower lanyard stating that I have hidden disabilities, whilst walking like John Wayne after four days of bareback. She still felt it appropriate to ask the question. It made me uncomfortable and I didn’t feel up to offering an explanation. This proved to me that we’re still a long, long way off from wholly accepting that if you don’t look a type of way, you must not feel as you profess to either.

Confession this week is this: Despite doing a lot of work on myself and learning to let go of lots that isn’t within the realms of my control, I still sometimes feel bitter. Radical acceptance has helped me a lot, but there are days, like those mentioned above that I’m still so angry at how my health seeps into every single aspect of my life. I confess that I am terrified about returning to work because I don’t know if I am going to be reliable enough to hold down a job, even a part time one. I confess that even though I’m getting better at understanding my limitations I am still sometimes furious about them. 

Ciara had a birthday party yesterday and it took every ounce of energy I possessed to turn up. To greet the other children and their parents and act like I wanted to be there. She had the best day, and I felt a lot of guilt around how I felt towards the party. But, it worked out in the end and we made it! Sometimes it’s having no choice that actually pulls you from the darkness. Sometimes, choice or not, that isn’t attainable. I’m glad I made it happen yesterday.

Confessions of a chronically ill mum #8

That chronic illness life is the gift that keeps on giving. Lots of things happening over here at DivamumHQ! Big and small changes being made and as ever, 100’s of appointments.

I started this week proud and feeling relatively ‘good’ I’ll tell you about it….

So you know I said last week that the cardiologist explained I’m showing signs of heart disease? Yeah well that’s still a thing, but I’d also had loads of blood tests taken in Jan and many of them came back abnormal. One of them, was my plasma viscosity or ‘inflammation in the blood’ I found this, like all of the others, stressful to take in. I have fibromyalgia as you know, and usually Fibro doesn’t show elevated inflammatory markers and so I couldn’t really understand what had changed. With the blood glucose also being high and everything else with my heart, it was a worry. The GP I spoke to suggested doing a repeat blood test once I’d got going with my healthy lifestyle changes. Now we all know, I don’t walk very good, and I think I’ve also mentioned I’m overweight. Well, since these findings I’ve been trying really hard to be healthier. Not so much even to lose weight, but put a little effort in to eat right (healthy), reduce portions, try and move more. Anyway I’ve managed to lose 9lbs now, and I had the repeat blood test this week and guess what my plasma viscosity is back within normal range! I’m so so so pleased, I honestly can’t even begin to tell you how rewarding it is to see tangible evidence that the work I’m putting in may well really improve my health. Of course there’s lots that can’t be done and in terms of heart disease, if I have that, it can’t be reversed BUT I can still prevent serious complications by sticking with healthy choices.

I’ve also been attending a group focused on diabetes prevention. It’s a national programme run by the NHS that has an 80% success rate. I’d gotten to a point where doing it on my own was only adding to my stress and stress itself is a factor that can increase your likelihood of developing type 2 diabetes. I’ve only had two course meetings so far but already I’m starting to understand my food intake better and the things that are within my control to be able to change. If you are reading this and considering the course, I would highly recommend it.

So that was all great… yeah? Yeah…. Until…. I went to my mum’s Thursday and when I came home and sat down, I couldn’t get back up. My pelvis has gone again. The trouble with this is, I don’t know why or how, so that means I also don’t know when or if my mobility will return to as it was. I can tell you, being immobile with a crawling baby is frightening & quite dangerous to be honest. It’s upset me because during pregnancy I was told often that my mobility would be limited postnatally, but it did improve and that gave me hope.
So now it’s poor again, it’s scary!
My health is forever fluctuating, I am learning to be more accepting and appreciative of my limitations, but it’s far from easy and acceptance isn’t linear. Some days I’m able to find gratitude in the smaller things, able to accept the things I cannot change, and others, I despair.

Confession: When my pelvis went I questioned if this was it. Is this when my body gives up? Will I walk again. Will I walk with aids again, maybe forever? 

But that aside, I have had a few positive take aways from this week, and I’ve included them below in an Instagram post I wrote this weekend.

I’m only four weeks away from the group therapy I’ve been involved in coming to an end. I really can’t describe in words how educational, enlightening and empowering attending the group has been. I want to do a whole blog post on group therapy, so I’ll save the ins and outs. One of the things we have been working on though, is radical acceptance. If you’ve not heard of this check out the link, as someone who lives with both physical and psychological illnesses that are not curable, this has been a really useful tool in my arsenal.

Confessions of a chronically ill mum #7

We started well. The weekend the kids and I went for a short walk on our own. This was a big deal because I rarely go out alone these days, and it was the first time I’d been out on foot with both children. As my health has worsened so dramatically in recent months, I have developed quite significant, but understandable, health anxiety! I took the win Saturday, rested in the afternoon and woke up Sunday ready to attack the day. But it didn’t quite work out like that. I woke up feeling extremely fatigued to the point where I couldn’t keep my eyes open and had to have a nap mid afternoon. For most of us with fibromyalgia this is normal, particularly following a day in which we’re more active. However, for me, fatigue is also a symptom of the pro-drome phase of migraine.

Being the hormonal mess that I am, I have noticed migraine attacks increasing in frequency again in the last two months. 2am Monday morning I was woken by the head pain, swiftly followed by cold sweats, hectic fever and vomiting. Monday was a write off. I spent all day in bed unable to watch tv or read and silently crying in between naps. I’ve said it before, but migraine is the most debilitating symptom for me, even more so than not being able to walk well, because migraine is a complex neurological disease that affects everything!

Fast forward to today, Thursday and I am feeling better. Not by any means ‘well’ but I was able to get out yesterday and I haven’t needed my husband to stay home from work to care for me. I also managed to get out this afternoon even though I couldn’t think of anything worse at the time I forced myself to do it and I have to say…. I’m converted. All the times people said to me ‘you need to get out’ while I led in my bed riddled with pain and anxiety, I thought those people were prize pricks to be honest, but I can see there’s merit there. I will say it’s not as simple as just getting outside when you live with chronic and or mental illness, and even in motherhood it can be hard to just get up and out. Let’s be real here it takes longer to wrestle a screaming baby into the buggy and pack your nappy bag than it does to do your weekly shop! But if you can get outside, you may benefit to some degree. For me the benefits are:

  • It’s a scenery change from the monotony of mum life.
  • I feel a sense of achievement if I’ve been able to do something, even if it’s as simple as popping to the shops.
  • That sense of achievement rewards me with feel good endorphins.
  • It’s so much easier (for me anyway) to be ‘present’ whilst in nature and not dwell on negative thoughts.
  • It’s free!

During pregnancy when I ate every meal in bed and couldn’t get down the stairs, going out was not only a physical impossibility, but it became mentally terrifying. I avoided leaving the house for so long, doing it now feels alien, but it also feels good. I feel like I’m taking back some control.

I don’t have any major confessions this week, other than I’ve spent a lot of it feeling sorry for myself and on occasion a little bitter about how shit and unpredictable life can be when you’re unwell. I’m worried about how I’m going to do my job in a few months when I’ve already cancelled a Keeping In Touch Day because I was so unwell. However, those feelings were scuppered by guilt as they always are when I look at the bigger picture and remind myself how lucky I am to have the life I do. I’ve also learnt that life is more fun and fulfilling when you’re grateful for the tiny things. Like a hot cup of tea or getting into bed with a good book.  Kaiser, my youngest, is an absolute rogue. I’ve had to take deep breaths a plenty in the last couple of days whilst trying to stop him climbing the stairs and then throwing himself down them. Dunno if this is a boy thing but fuck, it’s hard work. 

It’s easy for me to write this today because today has been such a huge improvement opposed to earlier in the week. That’s not to say I won’t feel the sadness and resentment again in the near future, but it means today I choose happy. We don’t always get a choice, and so on the days that we are gifted one, we have a responsibility to ourselves, to make it a good one.

Included at the bottom of this page is a link to ‘Buy Me A Coffee’ (or book, in my case) please don’t be put off by this!
Currently, Divamum makes no money, and whilst I love writing, in order to keep growing I have decided to accept donations.
Just to clarify you are in no way obligated to make a donation and at no point will this become mandatory, it’s just there as an optional extra for anyone who would like to and all information is available via the link. https://www.buymeacoffee.com/Divamumsteph

Confessions of a chronically ill mum #3

Where to start. Good news or bad? I think I’ll start with the good. The weekend just passed, my husband and I went away for a cheeky, little, couple’s soirée. We travelled about an hour away from where we live in Bristol, to the Mendip hills and stayed in a holiday cottage. It was divine. The most exquisite bedroom complete with a roll top bath and Netflix, we spent most of our time in there catching up on….. you guessed it, sleep!

It also had a wood fired hot tub, we only successfully heated it up once, so the following day we had to cold dip instead! Suffice to say that ‘dip’ was much shorter in duration!

I’ve mentioned in previous blogs that I don’t really drink alcohol anymore. Only on very rare occasions, not because I’m a martyr or anything like that, just because my health doesn’t really allow for it these days. I was worried about how we would entertain ourselves without booze as this is the first time we’ve been away together since our wedding in Jan 2020! I needn’t of worried though, we had such a lovely relaxing time, chilled, acted stupid and just made the most of not having a child hanging off an arm each for three nights! I also managed to get through the weekend without any real flare issues. I did have hormonal cramps on one of the days but given the pain levels I’m used to, it was manageable and I’m so thankful for that.

Fast forward to Tuesday and I received a letter I wasn’t expecting. I’ve had a lot of tests recently because of a decline in my health and new unexplained symptoms. One of the tests was a standard blood glucose test and one of them was a cholesterol test. My cholesterol has been high for some time and I’m now, at aged just 33 being told I’m at serious risk of developing cardiovascular disease in the next five to ten years and will require lifelong medication to prevent the risk of heart attack and stroke. I had gestational diabetes in pregnancy and was prescribed both oral and injectable insulin. It was hell on earth to be honest, I became obsessed with my sugar levels and racked with anxiety and panic. My blood glucose result is high again and I read it and cried, my father has type two diabetes and because of having gestational diabetes I am high risk already. I believed immediately I had type2 and would need insulin again. It turns out after reading the results properly, I’m in pre-diabetes or borderline diabetic. Which means: I need a lifestyle overhaul immediately.

It’s safe to say despite not yet being diabetic I am still devastated by these findings. On top of, Fibromyalgia PMDD Migraine SPD and Post Herpetic Neuralgia (reoccurring shingles pain) and catching covid at Christmas and currently being screened for heart and breast problems, I’m already in a pretty bad way. If we add in the mental health stuff too, Panic disorder and Perinatal Anxiety you might be starting to understand, as to why this has devastated me so much. Or you might be thinking I’m a hypochondriac, I wish I was. But sadly, all of this is very real.

At the moment, I feel shrouded in guilt and shame around having so many health problems at 33 years old.

That might sound crazy, because I didn’t ask for any of this, but I haven’t always followed advice either. I haven’t always done the right thing when it comes to self care & I’m struggling with that, because now I’m having to live with real life consequences.

I’m struggling with it because I have two kids & I feel like they deserve better than what I’ve been able to give them. I can’t even get decent life insurance with a premium that I can afford because my health is in such a poor state.

I feel guilty when I can’t get to Kaiser fast enough because my body isn’t playing ball or when I can’t rock him to sleep or carry him upstairs. When Ciara sees me in bed for the 1000th time on a weekend (the only time I can get a break when my husband is home) and asks me when I’m going to feel better, it makes me feel like shit.

I mentioned last week that I’ve let myself go, particularly in reference to my weight and I know some people reading this will think, just lose weight then! But it IS hard when your body punishes you every time you exercise and your mobility is extremely limited.
It IS hard when you’ve given up lots of the things you used to enjoy, and now your main thing to look forward to is what you’re eating.
It’s hard when your hormones upturn your life every two weeks and your hunger is cloaked in rage and desperation. It’s hard when you have no energy to prepare food, and you can’t open the lid on a jar, or lift a pan without help. It’s embarrassing. I am embarrassed. I’m ashamed to admit these things, they are the things I keep hidden or try to do independently and pay for afterwards. I’m telling you now, because it’s the truth. And because I know I have to take some accountability for the state my health is in.

Confession: These are excuses, but (hear me out) in some cases they’re valid excuses, because they do affect my ability to live a healthy lifestyle. And on top of those excuses I have been making positive changes. I’ve made so many I can’t even tell you, especially in direct relation to my mental health. However, physically it’s not enough, there is no alternative. I have to start somewhere, I have to lose weight, I have to try and build on my fitness somehow, and I have to start now. 

I’m not wallowing in this latest health hit. I refuse to do that. I cannot be overcome with additional anxiety about my health. I cannot change these things overnight, but I may be able to limit some of the risks if I start now.
So here I am, baring it all. Starting where I am and working with what I have, now, today. (Well actually I started yesterday, as soon as I read the letter.) It’s not going to be easy, but I can’t waste anymore time on excuses. I can’t just wait and see. I have to take drastic action.

I have to take action, for my family.

If you or someone you know lives with any of the health conditions mentioned you can access information about where to get support via the hyperlinks. 

Confessions Of A Chronically Ill Mum #2

This week in our house everyone seems to be fully over the ‘Rona, except me, of course not me. My symptoms are lingering and have worsened whilst I’ve been in the luteal phase of my cycle. This isn’t unusual, I often get flare ups in all symptoms around this time of the month, and particularly symptoms stemming from viruses that weaken your immune system. I’ve had recurring shingles for a few years now and every single month without fail, despite being on antivirals indefinitely, I get a flare up in nerve pain at the outbreak site.

Having said that, this past week I’ve been busy! So busy, that I’ve had to be organised. I notice this organisation has had a positive impact on my mood despite being in luteal. It’s classic distraction I guess. Also my husband and I have a weekend away booked as it was our wedding anniversary this week and just knowing that I have three nights of child free sleep to look forward to, is undeniably liberating.

A few more things happened and one of them was, I saw a new GP. A big deal for me. I’ve had the same GP since before my Fibro diagnosis six years ago, and she’s been amazing. The idea of seeing a new one whilst she is on maternity leave has filled me with dread for months. But today I did it. It was ok. I went in with a list and ticked off all of this in 10 minutes….

  • ECG Booked
  • Fasting bloods booked
  • Referral to rapid cardiac clinic
  • Breast clinic follow up appointment booked
  • Chased up Lipid clinic referral
  • Discussed further gynae/endocrinology input re PMDD
  • Post covid obs done
  • Face to face appointment for Kaiser booked for post covid obs.

Why am I telling you all of this in a blog post?

Well there is a reason, and it’s this weeks confession. I have always been a person that actively advocates for myself and my health. After all if I don’t, who else is going to do it for me? I research everything, I connect dots and I track my symptoms. But for months now, I have been slacking. It took me two months to drum up the courage to get a referral to the breast clinic, even though I had a very visible lump in my left breast. I just couldn’t do it. I couldn’t be bothered to argue the toss with the drs receptionist about why I needed a face to face appointment, and every time I spoke to a healthcare professional that wasn’t part of my mental health team, I cried. 

When you have chronic and mental illness you get used to being dismissed by doctors.

Can’t breathe, crushing chest pain? Probably just a Fibro flare up, I’m sure that’s a symptom! Or actually maybe it’s anxiety, have you been stressed lately?

Skull smashed open and brain hanging out? Sounds like a panic attack.

Gone blind? Sounds like a migraine.

And so on. I know I’m being glib, and I’m sorry if this exaggeration offends anyone, but seriously, sometimes visiting the doctor is like pulling fucking teeth. The issue with that is, the doctor’s the only person who can help you get the treatment you need, for the answers you had to figure out yourself.

And when you have kids it’s not even a case of whether or not you can cope with your symptoms. You don’t get a choice. I know it’s easy for me to say, and many people reading this may well think, well if it was that bad you wouldn’t be able to just cope. The truth is though, parents with their own health issues do just cope. Even the ones diagnosed with life threatening cancers still do the school run between scans and treatments. I personally have friends who have had to do this so I know that it’s true for some.

Big thing number 2.

Group therapy. I started it today. I want to write a whole blog post on the pros and cons once I’ve had a few more sessions so for now I’ll keep it brief. The session was two hours long. Two hours spent with a group in person might have felt quite nice, a chance to learn some new mindfulness skills and have a chat with others in a similar boat to myself, but two hours online was painstakingly long. Kaiser napped for just 15 minutes of it and trying to listen to other women speak over the top of crying baby heads felt strained. There were a few rules too, like we had to keep our camera on at all times so I couldn’t roll my eyes or go for a wee without having to let everyone know my reasons. I want to benefit from the group and I’m sure in time I’ll get used to it and maybe even bring some of my own value to it, but today I found it just made a stressful day with a baby, more stressful. The whole idea of this group is to be able to learn to regulate my emotions better, to deal with stress in a more productive way, and to feel more in control. So I’m going to stick it out, even if the first session did feel like it was an intrusion on my time. Therapy, I’ve learned is not supposed to be comfortable and it requires commitment so I feel I owe to myself to see this through.

Full time job

It has felt lately as though looking after my health and trying to juggle appointments and treatment is a full time job. Having a baby is also a full time job, both without annual leave or pay. I’m due back to work soon and no idea what I’m going to do about childcare or how to manage two full time jobs on top of a part time paid job. I want to be well in order to participate in my children’s lives, but I also need to earn money to be able to give them a decent life. The system is still fucked. It still penalises mothers who work or have partners. Childcare is still extortion, and I know I’m not alone in this plight. I just wish it was one of the ones I didn’t have to think about right now, but I know I do, as with the cost of living rising and wages becoming stagnant, it’s a very real threat to our livelihood and I guess lifestyle too.

Finally

Finally I’ve become more aware this week just how much I’ve let myself go, and I’ve set myself tiny goals of putting my makeup on more often and making sure I’m grooming myself! So far it’s going ok, but they do say it takes at least 3 weeks to form a habit so I’ll catch you up then.

Confessions of a chronically ill mum.

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

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

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

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

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

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

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

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

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

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

Bad days do not equal a bad life

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

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

104 days postpartum

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

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.