invisible disability

Disability Pride

July 14, 2022 — Leave a comment

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.

A novel for the migraineur

June 9, 2022 — Leave a comment

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

Menstruation and it’s effect on underlying health conditions.

June 4, 2022 — Leave a comment

You all, or at least those of you that have been following me for a while, know that I am big into learning about how hormones effect mental health. Living with Premenstrual Dysphoric Disorder my whole menstruating life, and an extreme sensitivity to hormonal fluctuations, I have made it a mission of mine to know exactly where I am in my menstrual cycle at all times in order for me to be able to predict how hormonal changes will impact my mood. In doing so I have become increasingly aware how the rest of my health is also impacted by hormonal fluctuations, and in this blog I’ll talk a bit about my personal experience and provide links to evidence based information supporting my theory, that hormones affect everything! Including, mental and physical health.

In 2016 around ten months after my daughter was born, I was diagnosed with Fibromyalgia. I have lived with chronic pain for as long as I can remember, but after pregnancy this seemed to worsen to such a degree that I was becoming less able to function and struggling to participate in every day activities. I also had a range of other symptoms such as cognitive dysfunction, profound fatigue, and an exacerbation in conditions that were already present such as PMDD and Migraine. The same year I was also diagnosed with shingles.

Since then, with every menstrual cycle I have experienced an exacerbation in all of the above symptoms in the extreme.

Society already knows that menstruation comes with its own set of symptoms, like bloating, menstrual cramps and backache. As well as for some women and in some cases, brain fog, nausea, fainting and migraine. But what about for those of us with underlying health conditions? Are you aware, that like me, your period could be exacerbating symptoms of illnesses already in situ? For example, during the luteal phase of my menstrual cycle I will experience excruciating joint pain, severe, frequent and lengthy migraine attacks, reoccurring shingles site pain, profound fatigue, and cognitive dysfunction that interferes with daily living. Alongside common symptoms of poor immune function, such as mouth ulcers, sore throat, wheeziness and more.

Why does this happen? It’s a good question and reliable studies are difficult to come across. So far I have struggled to find any solid UK based studies, that are available to view online. That’s not to suggest there aren’t any, just that we can’t view them. However, as well as studies showing how menstrual health affects mental health, Ncbi have various studies that show how oestrogen, progesterone and testosterone have been known to affect immune and inflammatory markers. Below is a paragraph was taken from two separate studies on immunity and sex hormones:

Exacerbation of common medical and mental health disorders at specific phases of the menstrual cycle is a prevalent phenomenon. Although the precise cause is unclear, studies implicate complex interactions between the immune and neuroendocrine systems. Females and males differ in the energy consumption and nutritional requirements which are based on the interactions between environmental factors and sex hormones (1). The studies in early 1940s ascertained that females have enhanced capability of producing antibodies (2, 3). This enhanced immune reactivity in females helps mount an effective resistance to infection and therefore females are less susceptible to viral infections, but can develop immune-pathogenic effects and predisposition to autoimmunity due to hyper immune responses.

Separate, but few studies have taken place in the US to determine whether conditions such as fibromyalgia may be related to low oestrogen as it’s a condition that preferentially affects women.

Many women/AFABI with chronic health conditions report increased severity in symptoms around menstruation.

We know that oestrogens affect diseases like cancers and can cause significant disruption to the most bizarre of health issues, including things like dental problems during pregnancy and temporomandibular joint dysfunction. We also know that hormones are a key trigger for many women with migraine. Myself included. I cannot take the combined pill as a treatment for PMDD because of the increased risk of stroke associated with oral oestrogen and migraine with aura. We also know that peri and post menopausal women suffer increased symptoms similar to those mentioned, including joint pain, migraine, frequent viral infections and reoccurring oral health issues, and those associated with syndromes such as fibromyalgia.

Unfortunately at this stage and without hard and steadfast reporting it’s not suggested that HRT is a treatment for any of the aforementioned ailments (besides PMDD.) However, if, like me, you’ve noticed a key link between when your body is experiencing hormonal changes and a decline in your physical well-being, it’s worth tracking your symptoms for at least three months. I use an app called Period Tracker which is available on all app stores and is free to download. It’s easy to use and converts to PDF for easy printing. Tracking your cycle is not only imperative to make connections for symptoms of physical health decline, it’s also as mentioned, a useful tool to predict mood changes, ovulation, and to document any treatments you might try to combat symptoms. The period tracker I’ve mentioned (not aff) also has a prompt for medication which I find really useful particularly during the premenstrual period, when brain fog and memory are affected.

For me and many women like me, it’s not just a period. It’s not just menopause. These hormonal changes are having a profound effect on quality of life and more needs to be done in order to find reliable and safe treatment.

Confessions of a chronically ill mum #12

April 26, 2022 — Leave a comment

Three months I’ve been writing these, and they are basically just a way for me to brain dump, to offload and overshare. However, when I look back to number one, I can also see personal growth. Those confessions I wrote in the first few chapters of COACIM were so much bigger than the ones I’m bringing to you now, and that’s because things have changed.

So what’s been happening? A lot actually. But before I get into it, I have to admit that having Shaun off over Easter for a week was undeniably helpful. This week, I am feeling done in. My joints hurt, I have brain fog, migraine symptoms and generally feel under par. It’s only two weeks since I last felt like this which is proper shit as it means this menstrual cycle, PMDD and Fibro symptoms are massively overlapping, and ergo exacerbated. The last week of the Easter hols was just me and the kids, and surviving that after a week away and all of us contracting norovirus, along with my normal and new symptoms, was pretty tough going.

You know what though, I’m proud of me. I’ve been relentless with this PMD Awareness month stuff, now having raised over £500. I’ve had so much support, mostly from strangers online as per, and those IRL proper mates that show up for you whatever shit you’re spouting about on the gram. I also participated in two instagram lives, one with IAPMD and one with The PMDD Collective; you can check them out below.

LIVE with Brett from IAPMD
LIVE with Emily and Ally from
The PMDD Collective

I’ve finally got childcare sorted for going back to work. Kaiser has had his settling in sessions, he did really well, especially as it’s at two different settings. We’ve been together for such a long while now that I imagined him to be clingier, turns out if you have snacks and give him lots of attention, he’s anyones’

I have a few things going on health wise. Mentally, I’m trying to prepare for being discharged from the perinatal service, and it’ll come as no surprise that one of my confessions is that, I’m terrified. I’m worried of how I will measure up without a team of people supporting me and fighting my corner. Physically I’m still waiting on test results for a second diabetes check, and appointments for my heart issues as well as physio.

I’m due to return to my job in less than a week, so I’ll have to adjust to life back on the 9-5 for those two days. I’ll confess that I’m not looking forward to it. To say that I am would be a lie. In all honesty, it’s nothing to do with work, they’ve been great and supportive. It’s all to do with me! The reality is I don’t know how I’m going to fair as an increasingly disabled person, and mother of two other persons, back in the working world. With our financial situation as it is at the moment though, there is no other viable option and this makes me very stressed indeed. I feel like I am only just coming through my recovery journey of perinatal mental illness and regaining my mobility, whilst still managing an ever increasing list of health problems, and I’d be lying if I said I didn’t think work was going to upset the equilibrium I’ve finally established in my everyday life.

I’ve realised since being involved with IAPMD this month how much I love my advocacy work and I’d really love to be able to keep giving back, writing and making a difference but again, I don’t know how achievable that will be once I’m back doing what I have to, to put food on the table. That said I still really want to expand my blog, upload the fiction I’ve been working on and share that with you all. I also have a new interactive feature coming soon!

Dear Steph is a new agony aunt style feature where I’ll be answering your questions about almost anything! Just for fun. My friend Amy keeps on telling me how wise I am, and during my collaborative work with House21 I was often told I should cameo on their Dear Donna feature! So I thought fuck it, and decided to go for it.

I hope you’ll send in your problems or confessions for me to comment on to divamumsteph@hotmail.com adding Dear Steph in the subject line. It can be 100% anonymous if you so wish. Serious and funny/questions/problems welcome.

There are a few restrictions, mainly because I need to protect myself and make sure I’m offering support to anyone who writes in. (Knowing my luck nobody will -LOL)

Important to note, I’m not a professional so if your topic includes any of the following please seek professional support.

  • Sexual assault
  • Illegal activity
  • Health issues that require a medical opinion or further investigation.

I will happily give my advice, personal opinions and share my experience on mental health and or chronic illness, but if you require specific medical advice please seek support from a qualified practitioner.

I want to hear your most embarrassing moments and comment on them (no judgement here) I want to hear about your relationships, struggles, motherhood woes and workplace dramas. Is your mother in law driving you up the wall? Have you fallen out with your best friend? Maybe your partner is giving you the ick? Or are your kids’ as feral as mine and you need some reassurance that it gets easier? Basically I’m trying to fulfil one of my younger selfs’ dreams of having my own agony aunt column in the back of That’s Life magazine. So do me a solid and send in your woes and faux! Dear Steph will start as soon as your emails come in, and I’ll respond to one a week, once a week, on a Thursday.

All I want for Christmas, is you.

December 21, 2021 — 2 Comments

What a year. I can’t believe that just six months ago I felt as though my world had imploded without any real warning. I woke up one day and didn’t feel like me anymore. I was afraid for my sanity, for my mobility, for my family and our future.
I couldn’t see past six hours without having a panic attack let alone six months.
I led in my bed, day in day out for 7 months, unable to walk.
As my son’s due date approached my mental health declined.
I felt consumed by all consuming, claustrophobic, fear. Wracked with perinatal anxiety.
I was broken.
I guess that’s why they call it a breakdown.
But here we are now, a family of four, surviving interminable routine and carnage, poor health and therapy, work and parenthood simultaneously.
Loving each other through it all.
It’s not been easy, it’s been hard getting here, ridiculously fucking hard in fact, but it has paid dividends to keep going.

I’ve got everything I need this Christmas. Genuinely. I feel so content with my family. When I say this I mean content as in they are enough, not content as in getting loads of sleep or life being perfect, unfortunately! Ha! I know how blessed I am, I’ve always known it, but I really feel it this year. After everything we’ve been through I have a desire to keep them close and let them know how much I love them. The only thing I want for the big day is more of that contentment (as well as good health & freedom for all, world peace too, but I’ll refrain from getting too ambitious.)

I am not the same old me I was last Christmas. Granted, I’m still a stressy, messy, bitch with a foul mouth who is always exhausted…. but I am also different. I’m softer round the edges. More vulnerable I guess, if that’s possible, but stronger too. I believe that what doesn’t kill us can leave us with a lot of unhealthy coping mechanisms, and I by no means, have ditched all mine. I haven’t turned into a preacher or someone who promotes their new lifestyle as some big epiphany, desperate for people to follow. But I am interested in change, in finding fun and contentment in new places. That makes me further away from those unhealthy coping mechanisms than I once was and I’m proud of that. I suppose what I’m trying to say is, I’m more open to learning better ways to survive and enjoy the mundane in the everyday.

I’m less inclined to sweat the small stuff whilst simultaneously being more interested in the big stuff.
My tolerance for a lot of things is greater, but less for small talk. I’ve always struggled with chatting aimlessly about the weather and the like, I’m too nosy, too inquisitive, I want to meet people and know them, not skirt around edges with hollow pleasantries. Similarly I’d rather be quizzed on my life than have it glossed over, skipped or ignored. I’m over hanging on to dead end relationships and chasing things that don’t bring me joy. Whether that be friendships that are more effort than fulfilment, or doing things I don’t enjoy anymore, for example forcing myself to be somewhere I don’t want to be. This year I have no desire for big boozy nights feigning Christmas cheer. I mean obviously the pandemic has some impact on those kinda outings, but I honestly think even without the plague, I’d still just want to be snuggled up close with my nearest and dearest.

Transitioning from one child to two has been a lot. I’m already anxious about how I’m going to cope with a baby that hates sleep whilst I’m trying to eat my turkey dinner. However, I’m ok with those kind of anxieties, they’re normal, they make me feel normal, whatever ‘normal’ is.
The biggest change of all for us this year is of course the fact we have an extra person round the tree to love. And love him we do. ❤️🎄

104 days postpartum

October 12, 2021 — Leave a comment

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

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

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

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

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

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

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

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

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

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

54 Days postpartum

August 24, 2021 — Leave a comment
23.08.21

My daughter was on her way to bed last night when out of nowhere panic hit me full force. My son, lying in the crook of my arm, suddenly started to spit milk out from the sides of his slow flow teat, and I realised, the hand that was holding his bottle was shaking. I felt hot, from the feet up, like a flush, my brain scrambling for grounding thoughts that just couldn’t make their way to the forefront of my mind. It’s coming I thought, knowingly.

My husband comes when I call, and holds me tight. Our son, bewildered at why he’s suddenly had his bottle snatched from his mouth, our daughter, obliviously cleaning her teeth in the bathroom above our heads. Breathe Shaun tells me. Why am I like this???? I sob, trying to catch my breath. You’re not like anything, Steph. It’s a panic attack and it will pass. He reassures me, never letting me go.

It’s been 54 days since I gave birth. Our son will be 8 weeks old on Thursday 26th August.

This isn’t a birth story, because my birth story is too long, the trauma that surrounds my pregnancy will not shrink into an Instagram caption or a rushed blog post. This is a progress report.

When my son Kaiser was born, and during the days preceding, I was in a constant state of panic. I would have moments of calm, but they were fleeting and hard to grab onto. I’ve plateaued at a panic attack approximately once a week now. I know that a large part of their occurrence is directly linked to hormone sensitivity, yet that gives me no control or reassurance regarding their assault on my life.

I’m currently under the care of the most amazing perinatal mental health team, they are some of the best medical professionals I have ever come across in my entire life and I’ve met a few. Sadly this support was massively lacking during my pregnancy – but that is a story I’ve semi already told and one that would take up the duration of the rest of this blog. The point, is that I have some amazing people in my life at the moment helping me heal from acute anxiety, intrusive thoughts and various states of panic. I genuinely don’t believe without their consistent support during the postpartum period, that I would have gotten these bastard attacks down to once a week on my own.

The trouble is, I’m still very much in a state of fight or flight. During the periods of calm, I am logical. In fact I am probably calmer than I’ve ever been in my life and generally laid back (a term probably not often used to describe me as a person) but I can’t stay there, because as quick as I’m calm, a storm cloud opens up the heavens on my head and I am ready to flee the country as though I’m being chased by a hungry tiger.

However, during those moments of calm I have reflected. I have corrected, and I have made changes to my mindset. Living with chronic illnesses as I do, migraine, fibromyalgia, PMDD etc it’s easy to become all consumed by pain and suffering. The shift in my mindset has been that I don’t want to be consumed by this suffering anymore. I know I am going to suffer, bad days, sometimes bad weeks and maybe even bad months, but I don’t want it to consume me. I want change.

My community nurse said to me this week you have to do different to feel different and so I’m doing different. Every day I’m fighting tiny fires of fear. For example, I’m frightened of being alone with my kids in case I have a panic attack, but I’m staying alone with them anyway, because I know if I avoid this fear it will only grow.

I was absolutely distraught about Shaun returning to work after paternity leave, but I knew if he delayed that process I would be as scared, if not more so, when he eventually did.

I’ve been avoiding books and television that might be triggering or that contain storylines of anyone with mental illness, but very slowly I’m reintroducing those things into my life.

I’ve been too afraid to walk or drive anywhere on my own because of how much pain I’m in. What if I get stuck with the kids? And then what if whilst I’m stuck, I panic?

I’ve been too scared to enjoy days out for fear of repercussions on my body, or to go places more than half an hour away from my house in case I panic and need to flee, but slowly I am doing both.

I’m making this sound easy, and yet it’s been the hardest most hellish experience ever, doing things I’m so desperate to avoid goes against the grain. But I’m using these examples to measure my progress, because it’s so easy to feel as though I’m making absolutely no progress at all when anxiety strikes.

I want change. I want my life back. And I have to do different to feel different. I have to be open to the idea there are positive outcomes in life, because if I don’t open myself up to this possibility, I will forever be living half a life.

Life after secondary Symphis Pubis Dysfunction.

July 31, 2021 — Leave a comment

For those of you that follow my blog you’ll know that for the last 7 months I’ve been using crutches and a mobility scooter because for the second time in my lifetime I developed Symphis Pubis Dysfunction during pregnancy, rendering me unable to walk unaided.

Symphysis pubis dysfunction (SPD) is a condition that causes excessive movement of the pubic symphysis, either anterior or lateral, as well as associated pain in the legs, hips lower back and groin area, possibly because of a misalignment of the pelvis. Most commonly associated with pregnancy and childbirth, it is diagnosed in approximately 1 in 300 pregnancies, although some estimates of incidence are as high as 1 in 50.

After the birth of my first child my mobility returned almost instantly requiring no further treatment and little associated pain. Professionals tend to believe SPD worsens with each pregnancy and the likelihood of developing it in subsequent pregnancies is extremely high. Many women experience pelvic pain in pregnancy and the severity of SPD varies from person to person, loss of mobility and need for walking aids is generally rare. It’s onset usually occurs in the latter part of pregnancy in the second and third trimesters. For me, I had developed symptoms during both pregnancies, at the end of the first trimester and required crutches by sixteen weeks. In my first pregnancy I needed to use a wheelchair at around 25 weeks and in my second this was sooner, at around 20 weeks. Highlighting to me the very real and tragic reality that society isn’t accessible.

Since giving birth four weeks ago the question on everybody’s lips is ‘can you walk again now?’ And the answer is yes, I am able to walk unaided now, but my symptoms have NOT disappeared, far from it.

I’ve lost a lot of weight in a short space of time and I believe this to have provided significant relief on the pelvic joint, thus I am able to walk a thousand(ish) steps at present, but it’s not without pain. I’m currently unable to walk around holding my son and rocking him and swaying in a standing position is agonising. Same goes for carrying anything, including the car seat, along with bending and sitting for prolonged periods. I spent almost 4 of those 7 months pretty much horizontal in my bed and so getting used to different positions causes increased aches and pains.

I’m so relieved to have some mobility back at all though, as it was suggested I may need crutches postpartum and that would have made life with a newborn and an older child even more challenging. After the first two weeks following birth I started trying to go for walks everyday with my mum or husband. Short walks that lasted around thirty ish minutes, however this seems to have aggravated pain and I’ve had to reduce the amount of exercise again and pace myself. I’m still trying hard to keep moving I just need to be mindful not to overdo it. Some of you will know I also have fibromyalgia and so pacing is important for me anyway.

During pregnancy I was unable to see a physio, constantly being fobbed off with covid being a reason for not treating in person my very real and very debilitating pain. However I do plan to chase them again as soon as I’ve had my postnatal check.

It’s definitely not easy having a newborn and limited mobility, but I’m humble in that I’m able to move around at all after so long without any freedom. I feel positive that with the right strengthening exercises I can increase the time and distance I’m able to walk but whether I’ll ever be able to move like my prenatal self is still an enigma. I’m desperate to get back to the woods and explore with my daughter, but I know uneven ground is a no no at the moment. I’m also not able to carry my son in a sling. The great thing about buggies is they provide a stand in crutch, giving added support, but it’s really important to remember to do simple things like bend your knees when lifting and stretch often etc.

I’m used to being in pain everyday and whilst it’s not fair or fun I do feel extremely grateful. Losing my mobility to the extent I did in my second pregnancy has really made me value my abilities so much more than I ever did before. It’s also opened my eyes to how other disabled people manage (or not) in a world that isn’t designed for us, even things like high stools in restaurants and benches without backs can cause excruciating pain!! Crutches were a constant trigger for flare ups of fibro symptoms, causing fatigue from too much effort lugging about a baby bump on your arms, being unable to participate in days out with my family was soul crushing, and whilst I’m a long way from climbing round soft play or going for a run I’m closer than I was just weeks ago.

My advice to pregnant women experiencing pelvic pain is to act fast, don’t ignore it, keep moving but don’t do anything that hurts and if that means walking, try to exercise seated or led down. Learn to pace and rest often. Take the weight off of the pelvic joint whenever possible. Goes without saying but don’t do any heavy lifting either. DEMAND to speak to a women’s health physio and look up your own safe exercises for pelvic pain in pregnancy. Weightless exercises like swimming are recommended but be careful of over doing it with the legs.

Something I didn’t do but would also recommend, is try and keep within a healthy weight, it’s nearly impossible when you can’t move around but the extra weight causes more strain on those joints.

Life after SPD isn’t the same as life before but it’s better than life in the peak of it. The world needs more awareness about the impact pregnancy can have on our health and information about how to lessen that impact going forward.

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

April 20, 2021 — 4 Comments

Hey,

Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it ‘gets old’ boring even, to hear me talk about it ALL. THE. TIME. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is…. I’ll always have this condition now.

A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathising, I’m learning to be ok with that. I have to be. Yes it hurts my feelings, even when I don’t tell you it does, and when I do.

It hurts my feelings when you ignore the honesty of my illness related posts, and only engage in the cute pictures of my kid. It hurts my feelings when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything.

You see, this illness makes me irritable, I get angry with my body, often. On some days, better days I might seem totally ‘normal’ I might even resemble ‘the old me’ but please know, that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today, might affect me tomorrow or days later, for days, sometimes weeks after the event.

I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you, I’m not doing though, is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterwards. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, that you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me.

I am not broken, not entirely, I’m just bent, learning to live again (almost a quote from a P!nk song there) Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you I’ll always be able to fulfil them. Just know, when I make them, it’s always with the best intentions. I’m trying, all the time, new ways to manage this condition. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am.

I wish I could go back in time and do more things with you before I got sick, but sadly time travelling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain.

If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before.

If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one. Like life itself – It’s a work in progress. And I’m forever trying to be better than I was yesterday.

Love, me X

Third trimester

April 15, 2021 — 2 Comments

You made it.

You’re on the homestretch now.

Is the baby ok…..?

When I was pregnant with my daughter I had chronic migraine from the minute I found out I was expecting. I was diagnosed with SPD at 16 weeks unable to walk and that was extremely painful. I soon became very depressed and ridden with anxiety and intrusive thoughts. By the third trimester I was bedridden and had developed preeclampsia. We were induced later, she was born in withdrawal from antidepressant medication. Her first year was defined by trauma and towards the end when she was recovering, I was being diagnosed with fibromyalgia. As she grows, and continues to thrive I feel like with each flare up I die a little inside.

You’re so strong.

Lot’s of people go through complications and come out of it okay.

Stay positive.

It’s a myth (I believe) that people come away from pregnancy and birth trauma ‘ok’ we all move through trauma very differently, but what your mind is able to process your body fights against and you don’t always fully recover. Trauma and stress have a lasting impact on the physical health of a person.

This week I turned 28 weeks pregnant. Last week I found out I didn’t have gestational diabetes and I cried tears of joy, because I didn’t think I would cope with more complications. But every glimmer of hope is followed by a plummet, a sense of doom. Here we are today and my diagnosis and risk catalogue, continue to grow and the list of complications multiply again. I’ve again suffered migraine from conception, got diagnosed with SPD at 16 weeks, again. My blood pressure has been high. I’ve had a reoccurring shingles infection that isn’t responding well to treatment. My whole body is in a constant flare, I’m in agony, not just occasionally now, all of the time, surviving on the very minimum of pain relief. Some days I can’t move my body at all. This week I turned up for a growth scan only to be told I have a low lying placenta (placenta praevia) they’ll book another scan for 36 weeks but and I quote, ‘if you make it to 36 weeks.’

Don’t have sex – I can’t even move my legs hun let alone spread them.

Don’t do…. (insert anything) here.

You might need a cesarian.

No big deal right? Women have c-sections all of the time. Except it is a big deal for me because my body is already broken and major surgery only hinders it’s recovery further.

But the baby is ok, right?

My baby, the one I’ve been fighting for. My second baby, is currently safely cocooned inside me. But We don’t know if he’s ok, not really. I find it odd that this is the first question people ask when so many babies suffer complications late in pregnancy and post delivery. I also feel like it unintentionally goes towards invalidating my struggle. The baby’s fine so therefore you’re fine, stop moaning. We know he has a 1 in 3 chance of suffering the withdrawal similar to his sister, albeit to different medication. We know he’s at risk of infection because my body isn’t fighting them off well. We know that he is at risk of being born prematurely. We hope that he will come out of this unscathed. I am doing everything I can to ensure that happens, but I am not in control of this situation. So I can’t answer the question with anymore certainty than my doctor can answer me.

As a family we are doing our very best to survive, and surpass the finish line, in one piece. We are trying to stay focused on the outcome of a healthy baby, but we are definitely not okay.

My daughter who can’t wait to meet her brother has no understanding of why her mum is ruining all her fun by not participating in anything. My husband is now my carer, and he’s not getting paid, not even in kind.

I am thirty three years old and I feel like my world has been tipped on its head for the 100th time in my life, except this time I have no control, no way to turn it around. I don’t feel brave or strong. I feel petrified. I feel weak. I feel out of control and I feel bone weary, exhausted! As though cement has been poured into my body by mistake and set overnight.

I don’t like the idea that we must keep calm and carry on, because I don’t feel calm. I’m carrying on regardless, because I have no choice. Not because I’m not broken. Or because I’m coping better than I make out. It’s because carrying on is the only option. There’s a saying that goes, you don’t know how strong you are until strong is your only option.

I hope once our baby arrives we will look back on this time like we look back on that time with his sister and we will be okay. We will have all survived, together. We will be happy, and we will have reasons to laugh. I hope that I will regain some control over my health and days will look brighter again. Hope is my coping mechanism. I hope, because to give that up isn’t an option. You might be wondering why I continue to share all of this information, why I’m not holding out to share better news, and the answer isn’t a simple one either. I write to hear myself think. I write to process my thoughts, and to unburden myself of the doors negative thoughts lock when trapped inside my head.

I’m not a person who believes her suffering trumps someone else’s. I know other people have it worse. I know I may come away from this beating the odds and better, but I don’t share for your attention or your sympathy. I share for my own peace of mind. I share so that when we come out the other side, we can look back and know we survived.

Call for NICE to play nice with chronic pain sufferers!

April 8, 2021 — 4 Comments

For full transparency here is the article NICE published in relation to using alternative methods to treat chronic primary pain that has no known cause. NICE recommends

For the most part this starts well, offering people a range of alternative treatments in place of a prescription doesn’t sound so bad does it?

The issues here though, are plenty if you do in fact live with chronic pain. Many sufferers will have a) already tried alternative treatment options. Or b) Are still awaiting a diagnosis in the first place.

We know the opioid crisis is real, we know there’s a risk of addiction and dependency, most of us would give anything for adequate relief found elsewhere, but opiates aren’t the only treatment option available that’s in dispute here. Standard analgesics such as paracetamol and Non Steroidal Anti Inflammatory Drugs are also being branded ineffectual. What is particularly damaging is the statement from Dr Crisp that suggests pain relief doesn’t work to treat chronic pain, and antidepressants do.

“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them”

I’ve come to know many chronic pain sufferers that are indeed already prescribed antidepressants as an addition to pain relief for chronic pain. I’m yet to know any that find these effective in place of further treatment. I also know many people who benefit from holistic therapies and exercise and diet for pain management. The problem here is the assumption that everyone or nobody benefits from one type of treatment. NICE make some very encouraging points in the idea that collaborative discussion with patients will play a role in deciding treatment, sadly what it then does is states pain relief won’t be offered initially, leaving many people awaiting a diagnosis in agony.

If you’ve suffered chronic pain ongoing and for a long period it’s likely you will be hoping for a diagnosis. NICE addresses here that the prognosis isn’t always simple and a true diagnosis other than pain itself can be hard to find on occasion. Another of my issues with this statement is, people who are seeking diagnosis will be further fobbed off and advised their pain has no known cause without a full and thorough investigation being carried out. It also indicates that addiction to painkillers is commonplace, as opposed to people taking them in order to function and live a more fulfilling life.

Furthermore suggesting antidepressants come without similar risk or harm is also damaging. I have taken antidepressants and opiate pain medication on and off for twenty years, I’ve experienced withdrawal for both and I personally found antidepressant withdrawal a much more hellish experience, that said I don’t speak for everyone and I’m fully in support of medication being commonplace to treat mental health issues. What I’d also like is to not be branded or implied an addict for taking medication to treat pain.

I don’t dispute that alternative options to medication should be commonplace. My fear is the removal of treatment or the lack of prescribing in the first instance will lead to untold suffering and the search for pain relief elsewhere. Potentially from illegal drugs and under researched off label medications. You only have to look at Twitter to see the outrage from people in the chronically ill community to understand that this will impact us significantly.

As a mother and an expectant one it would be idealistic to not have a need for medication at all, but I like many other sufferers have tried countless attempts at reduction and abstinence. It doesn’t work, because my pain is physical and it’s real. To suggest psychological therapies in place of a prescription is another way of suggesting our pain is psychosomatic and not physical. Yet upon first analysis you couldn’t possibly know that to be the case. I don’t disagree that better information needs to be given as standard, that alternative medicine should be available on the NHS as standard and that exercise and diet are all impacting factors. I do however, disagree with the statement suggesting pain relief doesn’t work for chronic pain. Granted it won’t work for everyone, and granted NICE have advised individual plans will be made, but how many of us already feel judged on how we manage our health? I know I do, and I know hundreds of other people that do too. What would have been really nice is for NICE to include alternative therapies as standard without pillshaming people already taking medication or those seeking adequate investigations and subsequent pain relief.

Yes I have launched a petition and yes I have indeed read the guidance offered and I still feel strongly for the need for this advice to be overhauled and at the very least reworded in a more sensitive and less ableist fashion.

Not everyone can exercise. Not everyone can access alternative health care and not everyone will become an addict when treating their pain with painkillers even long term.

The petition is currently in review and will be shared when and if it goes live. I’ve also emailed NICE directly for clarification and I hope they are able to address the concerns of those of us that have voiced them.

I also feel the need to state: I am not suggesting everyone take pain medication for the rest of their lives to treat chronic and ongoing pain, I’m simply asking that we don’t have the option taken away from us.

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

March 4, 2021 — Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

A letter to myself.

February 21, 2021 — Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

X

A lot of noise

February 3, 2021 — 2 Comments

I make a lot of noise. I do. I talk (or rather write) honestly about my struggles in the hope it helps someone. Not just someone going through the same but maybe also someone trying to better understand a loved one. A lot of the time my honesty is met with kindness and I am grateful for that. Sometimes however it can deemed attention seeking and I wanted to address this a little.

I am seeking attention, but not for praise or pity, for recognition and understanding. Even some of my close friends and family still say things to me like ‘Well what’s wrong with you?’ And if you read my blogs you would probably already be of a better understanding. It takes a lot of energy to express our truest struggles, that’s why some people find therapy so triggering and this is why some people prefer not share because they don’t want to open up for fear of what lies beyond, maybe in the reaction of their peers. However this is also why advocates write and promote health issues. It’s not to say ‘hey look at me I’m thriving despite XYZ’ because most of us aren’t thriving the majority of the time. It’s not to say ‘hey feel sorry for me’ because your pity gains us nothing. It’s to say ‘Hey I have this….. if you haven’t heard of it here is a bit more information. It might help you better support someone who also has it, or it might prove useful to gaining a diagnosis, if you think you have it.’

It’s also to say ‘You’re not weak for feeling this way or thinking these thoughts, you’re not alone, and you’re not attention seeking for sharing.’

We all know their are people worse off than us we don’t want your sympathy to encompass us or your relationships with us. We aren’t asking you to change your behaviours to better suit us. We’re just asking for your support. So if you replaced the ‘attention’ in attention seeking with support you would see that all we’re really doing is support seeking, and trying to find allyship. We’re asking for your acknowledgment of our struggles and your belief.

What we’re also doing, is offering you our support. We’re standing in solidarity with you and saying we believe you when you tell us you are hurting. We’re opening ourselves up in promise to be more understanding of your struggles too.

Everyone can make noise, feel sorry for themselves and wish life was different. Everyone. It doesn’t make you weak to say so and it doesn’t make you an enabler to provide support to someone with a health condition. It makes you an ally. If we didn’t make any noise about our circumstances we would never be telling the full truth because to omit said struggles would be like saying we don’t have them, and we do. We all do! Whether they are similar in nature or totally different, each struggle is valid.

Telling someone who opens up about their struggle that it could be worse is not helpful, because they already know it could be worse, but for them it’s bad enough to mention. Telling someone to be positive is ok, but if they felt able to be positive they probably would be being so already. People don’t choose misery. If they did they wouldn’t be hoping to feel better in the first place they’d accept it and live with it.

So many things go unsaid and I’m tired of living in fear of reproach for how I manage my physical and mental health. There is no right way to manage, there are different ways that work differently for different people. But what works for one may not work for another it’s a lot of trial and error and countless days spent looking for new ways to live better. I’m not saying we should all make noise, but I am saying, if you choose to speak up in order to advocate for yourself or others you should be able to do so without fear of recrimination.

I was chatting to an online friend whilst recording a podcast about being our authentic selves. Feeling able to be honest about how we’re feeling is often part of the reckoning when wanting to live a more honest life. It will probably lose you some people along the way but if it does they aren’t your people. You are allowed to speak up, you are allowed to be honest about your feelings and if it makes other people uncomfortable you should be able to have those conversations without apologising for being honest. You are also perfectly entitled to be private, if being open doesn’t sit well with you, you don’t have to be, but you’re allowed to change your mind.

Being truthful doesn’t equal being negative. Speaking up doesn’t equal attention seeking. Putting your feelings out into the world doesn’t give any person the right to make you feel like shit. Make noise, stay quiet, fight for your rights or don’t, but whatever you decide, do it for you. Because you know yourself best, and you don’t have to suppress yourself in order to make someone else feel comfortable.

Pregnant and chronically ill.

January 11, 2021 — 6 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What if, what if, what if…..

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

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

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

Baby 2.0 is coming!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For fibromyalgia resources it’s FMAUK

And for migraines it’s Migraine Trust