invisible disability

Confessions Of A Chronically Ill Mum #21

November 6, 2022 — Leave a comment

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

I love a bandwagon – Spirit Costume

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

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

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

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

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

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

Confessions Of A Chronically Ill Mum #18

August 29, 2022 — Leave a comment

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.

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.

Confessions of a chronically ill mum #16

June 11, 2022 — Leave a comment

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

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

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

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

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

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

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

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

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

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

A novel for the migraineur

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 13 – I’m back

May 16, 2022 — 1 Comment

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 #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.

Confessions of a chronically ill mum #10

March 31, 2022 — Leave a comment

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 #9

March 27, 2022 — Leave a comment

Still horizontal. My pelvis has not improved. I still can’t drive and I still can’t get up and move around freely. What I have noticed though is how different my mindset has been this time being so disabled. I feel less…. Devastated. As if by some miracle I’m accepting the things that aren’t within my control and I’m just cracking on, regardless. I mean, let’s not pretend I’m not frustrated or upset at what I’m missing, the stress it causes and the worry being immobile brings, because of course, I am. But I’m not obsessing, ruminating, catastrophising or all of that other shit I’m so prone to doing when I can’t live the way I’d like. Maybe it’s therapy that has taught me to be more accepting, or maybe it’s the state of the world and my gratitude at having the life I do, even whilst it’s hard. Maybe it’s the spring weather. Maybe it’s because I’ve been bleeding for weeks and when I’m bleeding I’m at my best mentally. Maybe it’s just because luteal hasn’t punched me in the brain yet! Who knows, who cares, I’ll take this more ‘normal’ reaction to the situation and just be thankful for it.

What else is going on?

BIG NEWS. I’m fundraising for iapmd in April. The International Association for Premenstrual Disorders. I’ll be running a raffle and an auction and you can find details of both by visiting my Instagram page and tapping on PMDD raffle highlights. I’ve been blown away by the generosity from people donating prizes, especially in the current climate. Thank you from the bottom of my heart! 

But I’ll confess, I’ve also felt a bit disheartened that the buzz on my social media pages has dropped significantly since I started posting about the charity. I do understand that awareness posts will not land or resonate with everyone but it can be a bit of a kick in the guts when your friends don’t get on board to back you. The thing with socials is they are unfortunately slave to the algorithm and if people aren’t liking your posts, people aren’t seeing them, either. So remember even if you’re unable to donate, buy tickets or relate to the cause, a simple like or a share can make just as much difference and may reach people that are able to help. I also need to confess that whilst I’m coping better being so immobile I haven’t coped well with the atrocity that is our GP system. In fact I’ve coped so badly with it I lost my shit both with a receptionist and a pharmacist recently. And whilst I do believe both of them were antagonistic I still feel like my rage is sometimes something I have less control over. Firstly the physio I was referred to last October called me to say he’d never sent my referral to the hospital… he was apologetic and I thanked him for taking accountability, but I’ve been left without any physiotherapy for six months so some might argue it’s no wonder my mobility is worsening again. Anyway, then I requested medication and was told I’d have to wait 3 weeks to speak to a doctor to okay the meds. 3 weeks. They are psychiatric meds and I could of been on top of Clifton suspension bridge long before I got them. I’m not suicidal, but if I was in crisis this notion that we must just grin and bear it is, in my opinion not acceptable. The mental health crisis has long been a pandemic and with GP’s refusing to see people face to face the consequences are real for many. I feel both situations could have saved me a lot of stress and pain had I just been able to talk to a doctor there and then.

Because of my limited mobility, I have been finding staying on track with the healthy eating harder, but I’m determined in whatever way I can to continue this journey of better nutrition. Though there have been days I’ve succumbed to a few treats, overall I’m still managing to reduce my portion intake and include more fruit and veg.

It’s Ciara’s birthday party next weekend and I’m really hoping I’m able to move better for that. However I know whatever happens she will have the best day. With the help of our families and support of all of her friends we’ll make sure it’s a good one. She’s such a beautiful, kind and sensitive soul, my daughter! She asked for a party this year INSTEAD of presents. What kind of amazing little kid offers to forfeit presents to spend the day with her friends. I mean it’s a good job she did because the party has cost an absolute fortune but we’ve still got her some gifts to open on the big day! She also lost another tooth, her third one, whilst her brother is just cutting his third. Speaking of Kaiser he now knows and responds to his name, nose, and Raa Raa (the noisy little lion) or Thomas (The tank engine) He still never sleeps though.

I guess for now that’s about all that’s new. I’m busy trying to manage my health before I’m due to go back to work in May, and I’m also soon to be discharged from the perinatal service so I just need to get my head around that. Bear with, and watch this space!

Love. Xxx

Confessions of a chronically ill mum #8

March 20, 2022 — Leave a comment

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 #6

March 1, 2022 — Leave a comment

I cannot write a blog at the moment and not mention the atrocities that are taking place in Ukraine. I feel, as many or all of you do, helpless and extremely overwhelmed. There are things we can do though, many local communities have teamed up to take donations and we can donate financially. We can also all spend a little more time looking after the people that we love.

It’s important to remember when we’re/I’m feeling overwhelmed and powerless, to focus on things within our control. As mentioned with the Ukraine situation, we may not be able to make an immediate impact, but we can make an impact by doing things to help that are within our power. Donate in anyway possible. If you cannot afford to donate financially, donate physical items. You can find more information on how to donate with The Red Cross here

But I’ll confess, that this week I have turned down the news. Not because I don’t care, but because I do. I’ll confess that I am scared. I’ll confess that I feel immense guilt about situations out of my control. I’ll confess that sometimes the world’s problems weigh heavy on my mind, and other times I am consumed by my own. You can be a good person and care and still prioritise your mental health by taking a break from the influx of news occasionally.

The impact of stress on our physical health

When I become overwhelmed my anxiety spikes and if it spikes too high, it topples over into full blown panic. When I am experiencing panic attacks I cannot care for myself or my family. I become plagued by intrusive thoughts and life starts to spiral. I cannot just sit by and allow that to happen again. I have to try and use the skills I’ve learned in recent months to dial down the anxiety. Particularly because I was told this week that I am significantly high risk for heart attack or stroke, not in the future, but now. I’ve mentioned before that these risk factors showed up on recent blood tests. This week I had an appointment with the cardiologist who confirmed said risks. I am very frightened about what this means, of course I am, I am only 33 years old… and I have a family. However I am taking important life changing steps that are within my control, to reduce these risks as much as possible, but that doesn’t mean it’s any less taxing, or terrifying.

Reminders

What I need to remind myself of though, is that risks do not equal certainties. Because again, if I overthink the risks I am likely to spiral and lose my shit entirely. Group therapy is helping me learn lots of coping skills and medication is levelling me out, to a degree. Ultimately though, I have to take back my power and remind myself everyday that my best is good enough. There are many people in the world without my underlying health conditions whose lives still follow a trajectory that ends with ill health. Therefore I have no control over how my body responds to stressors, but I do have some control in eliminating some of those stressors. I am working hard on cutting down on my sugar and lowering my GI intake because of the prediabetes. I have removed fast food from my diet and I am trying to move more.

  • Mentally I am trying to relieve myself of guilt associated with my worsening health.
  • Physically I am trying to move more and be proactive.
  • Emotionally I am setting aside gripes and trying to improve communication with my family. I am trying to be more present, always.
  • Proactively I am following all advice from doctors and taking them up on the offerings of lifestyle support.

Tonight I had my first diabetes group. It’s a nine month program offered to NHS patients to reduce the risk of developing, or experiencing, complications from diabetes. I didn’t want to attend, mainly because I’m hormonal today, experiencing a moderate flare up in fibromyalgia symptoms and profound fatigue. Kaiser turned 8 months old, he still doesn’t sleep, is teething and very, very demanding. You cannot take your eyes off him for a second because he’ll be chewing the dog’s leg or eating the dirt dirt off the bottom of Ciara’s wellies (FML). Ultimately though, I just couldn’t be assed. I debated several times throughout the day not bothering with the course at all, because of course I know how to lose weight and be healthier all on my own. Diabetes isn’t just about being overweight though, in fact it isn’t at all, many slim and even underweight people, have diabetes. It’s about learning what is going to fuel your body and what is likely to hinder it in specific relation to blood glucose.

I’m so glad I attended, because I learned a lot. I’d go as far as to say I’m excited about the course now, because it’s giving me back some of the control I’ve been scrambling around anxiously for.

More than anything I want to make positive but sustainable changes. I know my life will be hindered by illness I’ve lived with chronic symptoms for a long time now and unfortunately there’s no cure for most of them. But there are things I can do to help myself. My whole life I have fallen victim to believing that everything is shit so what is the point, and the point is…. Everything doesn’t have to be shit all of the time.

If you are affected by diabetes you can find support here Diabetes Uk

Finishing quickly on another positive, I lobbed off my hair and went even more Cruella, let me know what you think via my insta. 

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. #4

February 10, 2022 — Leave a comment

It’s all been going on! Since last week’s news about my health, I’ve been determined to go full steam ahead with the diet change. For us, living on takeaways we can’t afford and binging on food instead of our pre kid vices like booze and fags, has been the norm for so, so long. Shaun set us a goal of no takeaways in February and I know we’re only 2 weeks in but for a couple who ate pizza and mail order brownies several times a week, we’re smashing it. I’ve signed up to do a diabetes prevention course which I’m keen, but also stressed about getting started on. Keen because I want to make the best changes possible, but stressed because it’s another thing to try and squeeze in to my ever full appointments calendar.

Kids

Kaiser has started crawling! At seven months old, Ciara was crawling at six months plus two weeks, so this didn’t come as a huge surprise. But how annoying are kids that move so soon?

Confession - This week Kaiser had to see a paediatrician. I won’t go into detail here but, we need to get a urine sample from him. Note I say need and not needed because after two hours of trying to catch his piss in a plastic tub, inside a waiting room on the children’s ward, I gave up. I also, and shoot me for being a terrible mother, wished they would just do a bastard heel prick blood test and let him scream! After failing in my attempts and wrestling him into a position that wasn’t comfortable for either of us, I left the appointment sweating profusely in unbearable pain and doing a lot of cussing. Nobody wants to see their baby in pain, but dear god I would of preferred the blood spot over that pantomime. Worse still I am going to have to endure the debacle all over again in my second attempt. Have googled whether it’s ok to wring out a nappy, but have been sadly informed it is not! Fucking Kids!! To top that, Ciara had an appointment at Bristol Eye Hospital and fainted! My second confession is that I was glad it was Shaun that was with her and not me. I know that sounds awful but I also know I would have panicked so badly I wouldn’t of been able to cope. Or maybe I would, maybe I’d have dealt with it on autopilot. Right now though, I’m just glad she’s safe and seems to be otherwise fine. She’s so desperate to go to school tomorrow for her non uniform day in aid of Childrens Mental Health Week that I’m letting her sleep with me tonight so I can monitor how she’s doing.

Hormones

I’ve been struggling immensely with TMD and went to the dentist on Monday only for them to shave off half of one of my wisdom teeth and then tell me that probably won’t work. PSA, it didn’t! Unfortunately, hormones (those bastards) really flare up all of my pain and it’s not unusual for me to experience horrific TMD during ovulation and through luteal.

Speaking of hormones, I’ve been taking progesterone for around 4 months now, and whilst I am seeing some relief from the mental health symptoms, physically things are no better. In fact I may even go as far as to say they are a little worse. It’s hard because I have to weigh up what is worse, and realistically I know it’s the crippling anxiety and thoughts of suicide, along with inexplicable rage. But knowing this still doesn’t make the physical symptoms any easier to manage.

Breakthroughs

What I will say though, is that I am managing the mental symptoms I am experiencing, much, much better. And I think I have therapy to thank for that. It’s a slow burn, therapy! It makes you feel vulnerable with each session, but the more vulnerable you can allow yourself to be, the less that vulnerability is able to take hold. Then suddenly, seven months later, you realise you are doing better! You don’t always feel it, but you know it’s true. The feeling of drowning in quicksand every time you have a bad day gets less, and it starts to feel more as though you’ve just been inconveniently splashed by a car driving through a muddy puddle.

I’m not saying I’m cured, or that I will never have episodes of dread and impending doom again. But I feel right now, that if I do experience that again, I have more tools in my arsenal to help me fight it. I’ve another eight weeks of group therapy to get through before I can be discharged from the perinatal service. Discharge looms, like a black cloud really, because I’ve been helped in so many amazing ways by the team that I’d like to be able to talk to them about my trauma forever. At some point in the not so distant future, I’m going to have to hold my own hand.

Confessions of a chronically ill mum #3

February 1, 2022 — Leave a comment

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

January 20, 2022 — 1 Comment

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.