disability

What it’s like to Love Someone with PMDD: Two Sides of the Same Coin.

April 10, 2023 — Leave a comment 
Trigger warning ⚠️ contains references to suicidal ideation. Severe mental health health and Premenstrual Dysphoric Disorder.

‘I used to shout at times of frustration, ask him what the fuck he’s playing at, but this new level of suppression required to stop me exploding in front of my kids, often leads to tears instead.’

Me

We’re supposed to be going out. I don’t really feel like it, actually that’s an understatement, I don’t feel at all like it. I’m trying to put on a brave face for them. It’s futile. I’m waiting for him to get our youngest child dressed but it feels slow, as though he’s not doing it fast enough, on purpose, maybe to annoy me. So the tears prick the back of my eyes and before I know it, I’m shaking with sobs. I used to shout at times of frustration, ask him what the fuck he’s playing at, but this new level of suppression required to stop me exploding in front of my kids, often leads to tears instead. Deep down I know this is irrational behaviour. I even say aloud “I’m sorry, I don’t know why I’m like this.” But they’re just words aren’t they? I’m still like it.

It’s not his fault, and it’s certainly not the children’s fault. Some would argue it isn’t even my fault, because Premenstrual Dysphoric Disorder is physiological. It’s not a behavioural choice. I don’t choose to want to run the-fuck-away or open the flood gates to save myself from screaming the house down every-time I feel overwhelmed.

Some would also argue that there lies the choice. But there’s a stigma attached to a woman’s reproductive system that fuels societal norms and tells me I should be able to control this. I wish people didn’t really believe that. Sadly, many do.

I can feel my senses screaming, the hair on my scalp feels sore, the streams of noise I can hear, the kids to-ing and fro-ing around the house, collectively chattering, the sound of toys clattering and zips being pulled on coats, all feels as though it’s taking place inside of my head. The sounds are amplified and terrifying, because it doesn’t feel normal. I wonder if maybe I’ve finally reached a level of mentally ill that is beyond reparation. But even if that was true, what would I do?

I think about suicide and the perfect ideal of disappearing into an anonymous abyss. I think about not blowing up my life on a two week roster. I think about it against my will. I think about not disappointing more of my loved ones. I think about it, but I can’t do anything with the thoughts, because doing so would harm them irreparably too, and then I wouldn’t even be here to say I’m sorry. And I am sorry. I’m so sorry they have to put up with this. With me.

‘I’m frustrated, yes. Who wouldn’t be. I’m frustrated with the situation.’

Him

Of course I’m sick of walking on eggshells. I know she’s going to kick off in a minute and it’ll be my fault. It’s always my fault. The octaves are increasing and I can sense her anguish. I’m frustrated, yes. Who wouldn’t be. I’m frustrated with the situation. It’s definitely gotten worse since the second pregnancy, and the birth of our son. Or maybe I was just more able to tolerate it before we had two kids. Having children makes the situation harder. I’m running around back and forth trying to get the kids ready and make sure she’s ok. I can’t do everything. I know she’s spoiling for a row. I can feel her distress and it’s grating, because it’s really tough not to take it personally. I know she doesn’t mean it. I know she’s hurting. I don’t put up with this shit for the sake of it. I put up with it because I know her, and this isn’t her.

I try to preempt stressful situations and get ahead of them. Sometimes I don’t listen to the nagging, if I’m honest I don’t always listen to how bad she feels. It’s not because I don’t care, I think we all (men) do this to some degree. We’re just trying to keep our head above water too. Trying to fix it. I hate seeing her in pain. I know it’s real, but I don’t know how to help.

‘I know I’m useless. I guess this need to be useless alone makes me feel noble.’

Me

He’s going to leave me soon. I push him away cyclically because I think it’ll be easier, easier for him, not for me. I know I’m useless. I guess this need to be useless alone makes me feel noble. If I am not around to hurt them with my lack of energy, my anger or my tears, surely that’ll make me a better person? I’ll disappear for them.

Who would want to put up with a hormonal, angry, anxious, and constantly unwell, wife? I’m the mother of his kids but I’m not a great one, am I? How could I be when I can barely keep up with our children? I struggle to walk very far, I’m always tired and I dare say, my pelvic floor ain’t what it used to be. I’m overweight because I’m pumped full of hormones, and I crave sugar in the middle of the night. I’m not the woman he fell in love with. I know that much. I was a skinnier, funner, possibly sexier, but still angry, bitch back then.

I often wonder how we’ll survive this. How we keep coming back from it every month.

Him

I love her. We get through it because the good days keep us going. She is a great mum. I know she doesn’t think she is but I’m proud of her, and I trust her parenting implicitly. Our kids are kind because she’s taught them to be. I know she worries about our daughter picking up on things, but the way I see it is different. I see her doing her best. Our kids are lucky they have what they need, and we have fun. Yes it’s hard, but it’s not just hard. It’s amazing too.

Me

I know everyone fucks their kids up a little bit. With the best intentions our actions impact them. I worry. No, worry isn’t a strong enough word. I am petrified that my kids will remember my dysfunction and forget all the times I tried. Equally, I don’t want them to shoulder the burden of believing I fought only for them. I want to find the strength to do it for me, but it’s hard. I’ve been doing it for too long. I don’t sleep. My brain is a cacophony of clashing thoughts. For two weeks out of every four, I hold on white-knuckle, in an attempt to get to the next phase. It feels like a game of Street Fighter except for the fact that completing a level isn’t victorious. The end is never the end. When the mental torture subsides, I am left with acute physical symptoms. Pain that takes weeks to disappear. Debilitating migraine attacks, chronic and all encumbering fatigue. Dense brain fog, mouth ulcers, and chest pain. Even my face hurts. I might do a small task and need to sleep for the rest of the day. It’s a lot of pressure on him. A lot.

‘Sometimes I say the wrong thing, like “it’s in your head” but I don’t mean it’s not real.’

Him

She says I don’t communicate with her but sometimes it’s easier just to push through. Because there is an end. She sees it as forever, but it’s not all the time. I’m not making excuses for her, but I don’t see it as constant. Maybe I have more hope, but it’s life factors that make life hard, not just her illnesses. Life would be easier if we had more childcare, she got more rest, we had more money. Maybe if I could work less, and so on. Even if we had those things and the gift of hindsight, none of them would cure her health, or eliminate all of our problems, because there’s no such thing as no problems. Families aren’t perfect. Our bests’ might sometimes look different but we’re both doing the very best we can. Everybody I know is dealing with something, and I don’t say that to minimise how she feels, I say it because it’s true. I say it to reassure her, that whatever the problems are, nothing is so bad that I’d give up on her. We’re a family. I don’t dwell on things in the same way she does. I know from living with her that being able to not dwell is a luxury. She doesn’t switch off because she can’t. Sometimes I say the wrong thing, like “it’s in your head” but I don’t mean it’s not real. How she feels. I don’t mean I don’t believe it. I know it’s real. I just want her to know that I don’t worry about us in the same way she does, because I know we’ll be okay.

Blacklisted for Having Kids.

December 23, 2022 — Leave a comment

I read an article this week written for Stylist. and it boiled my blood a little. I’m hormonal (cycle day 26) and so this may have been a slight overreaction on my part…. But let me explain.

The article which first caught my attention via a quote on instagram, was displayed with the words….

“So many times I’ve wanted to say, stop sending me unsolicited pictures of your children. I’m sick of being cancelled on at the last minute.”

@Stylistmagazine

Now we all know media pulls quotes for attention, writers – including myself – do too! The reason this got me going wasn’t because it’s written by someone who doesn’t have children and therefore they cannot comprehend the incessant need as a parent, to snap cute pictures of your kids during all stages, at all times… Instead, it was the ‘I’m sick of being cancelled at the last minute’ comment that got my knickers in a knot. This, because sure, it’s shit being cancelled on, but if the excuse is the kids, then someone whom doesn’t have children (especially small ones) can’t relate to the magnitude of their needs, and the ever present fear as a mother, that you might indeed need to cancel plans at the very last minute because your child has yet another temperature that’s just a modicum too high for your liking. A snotty nose that needs constant wiping, or God-forbid they randomly vomited up the dinner you cooked them just hours ago, before you dressed to go out.

Secondary to the above, I saw a tweet referencing parents which read….

‘Remote working = even more excuses for parents to claim ‘sick’ kids for their lack of productivity.’

Misogynistic Corporate Type – Twitter

I mean, WHAT THE ACTUAL?? Last I checked, we were about to enter 2023 but here I found myself trawling the dark ages of Twitter.

Not only does the tweet make little sense, given that remote working has proven parents in particular to have increased levels of productivity, it was written by a man whom also doesn’t have children.

The generalisation that all parents, though let’s be honest – we’re talking predominantly mothers here – use any excuse to a) bail on their friends at the last minute and 2) skive off work all day, is perhaps not surprising but alarming nonetheless. It suggests that we (mothers) are literally at the bottom of everybody’s reliability list. Which is ridiculous if you consider how committed the majority of us are when it comes to parenting our children.

What maybe bothered me the most, is the realisation that I used to be one of these presumptuous, and unashamedly judgemental, people. Eye rolling at every new upload of somebody’s kid eating their first broccoli. NGL I still eye-roll at this on occasion but in my defence, the eye-roll is inward and I’m far less frivolous with my judgement. To think I may have been somebody whom put parents in a specific and wrongly undervalued category, now makes me cringe!!

My best friend had birthed three children before I’d had any and I’m ashamed to admit that I used to be a person who assumed her absence from events was down to fabricated childhood illness. Now, as a mother of two and someone that has more health issues than Katie Hopkins has haters, I’ve had to make peace with becoming the unreliable and often-absent, friend.

However, I’d like to be clear, my excuses for bailing on my mates at the last minute, aren’t in fact excuses at all. They are instead justifiable reasons. As would be one of my child-free friends cancelling because their cat was on its’ last paws. If anything, rather than giving me an endless list of get-out-of-jail-free excuses, it was actually motherhood that opened my eyes to all possible eventualities. And it was both that and disability which provided me with the eye-opening, and painfully stark dose of reality, that life can and does change at the drop of the proverbial hat.

It would seem our unreliability as parents, through no fault of our own, has black-listed us to our own unique and increasingly lonely, club.

If your friends are sending you ‘unsolicited’ pics of their children, for fuck’s sake, have a conversation with them. I know myself, as a mother and a friend, I would hate for my pals to be in receipt of pictures from me which they felt strongly enough to complain about. Whether those pictures are of unfunny memes, plates of food I have no desire to recreate, or even cute (or not cute) kids doing boring shit. If my friend was constantly filling my WhatsApp feed with photos that left me feeling drained, or gave me the ick, I can assure you – I’d be ribbing her about it. Thankfully, I can say with confidence that the pictures I get from my mates are usually hilarious, cute or relevant. Even if they’re none of those things though, I can still appreciate the joy such a picture may have brought to the sender and go about my day without feeling personally affronted by it. Unless, for obvious reasons, it’s an unsolicited dick pic from a man… in which case… friend or no friend = B L O C K E D.

To my friends, the parents and the pet parents and the single, and the child-free, you’re good! Keep uploading those pics of your cute kids and your dinner to Instagram. I promise the ones I’m uninterested in I’ll just mind my business and scroll past. And whatever you do, don’t feel guilty for needing to rearrange your working day because one of your kids is sick. Being a working parent is stressful enough without adding in an extra dose of guilt. Your kids may not yet appreciate your sacrifice, but believe once they enter adulthood themselves they’ll be grateful for the days you changed sick bowls and soiled sheets instead of answering phone calls.

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

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

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.

Acceptance isn’t linear

March 19, 2021 — Leave a comment

Entitled with contradictory statement maybe? Surely if you accept something, that’s it? Accepted, done, move on. Well….. I disagree.

The reason being is, take grief for example, you might accept someone is no longer physically on earth for you to love, but find it hard to accept the feelings that come with that knowledge. It’s not over just because you’ve said aloud you accept it. You can acknowledge a situation, tell yourself you accept it, and then change your mind. It’s not back tracking, it’s reality. You may start to accept one thing only to be faced with another, making your acceptance of the first, harder again.

I use grief as a prime example, Miranda Heart comedienne and Myalgic Encephalomyelitis sufferer recently said ‘With chronic illness comes a daily grief’ and nothing has ever rung truer with me.

I accepted my diagnoses a long time ago, because I’ve lived with symptoms for so long that there was no alternative to accepting their presence in my life. True and absolute. However, everyday brings with it it’s own challenge, every new symptom overshadowing my acceptance of the old ones.

With pregnancy too, because I’ve accepted I’m a person that doesn’t enjoy pregnancy, doesn’t cope well and doesn’t feel well throughout, but that acceptance doesn’t stop my grief. It doesn’t stop me wishing things were different or wanting to trade my body. You can accept and acknowledge a situation without enjoying it or thriving within it, and the goal posts can move.

I know during pregnancy my only goal is to get myself and my baby to the end in one piece, but once my son is here, the goal posts will move again and it will be back to getting through the days with chronic illness, because there is no end to them. There’s no one and only goal. Life is interchangeable and acceptance shifts. People tell me right now, that it will be worth it when my baby is here, like I don’t know that already, and they tell me to hang in there like it’s possible to do anything else.

They may or may not know, I have been hanging in there everyday for the last 5 years and more. Of course I get good days, though they seem fewer the older I become, but I don’t all of a sudden become well because I’ve had a good day. I don’t get to walk around with the knowledge that there’s only so long until better days are coming, because my good days can be equivocal to someone else’s worst.

I feel I can hardly shout this from the rooftops on a daily basis because then the few friends who have stuck with me would likely also tire of my complaints, so I have no choice but to accept my situation. Somedays I do it with grace and positivity and sometimes I do it reluctantly and with frustration.

When it comes to health of any kind I don’t think we ever agree to the offer. We look for a cure, we look for sustainable treatments and ways to better our situation. Never fully assenting to the offer of a diagnosis.

It’s true you can’t fully understand someone’s situation until you’ve walked in their shoes, and that also means what is easier to accept for one person may be harder for another. We can’t ever know how we’ll deal with something until it happens to us. We can’t ever fully accept a situation until it’s been lived in, and nobody can be blamed for that. It can’t be expected of any of us to accept everything someone else experiences but we can choose to accept their version. To believe them.

One thing I have learned about acceptance is, it looks different for everyone, including myself, for some occasions it brings peace and others it makes me want to fight back harder.

It’s not linear. It’s not complete and absolute. But it can be a starting point.

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

Migraine – not just a headache

December 28, 2020 — Leave a comment

I have started writing this so many times. It’s a so hard to put into words the debility of a migraine, without it sounding like a bad headache. So I thought long and hard about how I would explain migraines in this blog. I really wanted you to be able to feel what I’m trying to say, so here goes.

It may start off fleeting, a small dot in your peripheral vision, a barely noticeable shadow that casts a darkness over tired eyes. Maybe it’s more aggressive with flashing lights, and in some cases temporary loss of vision. You might feel a sickening in the pit of your stomach, coming from nowhere and catching you unawares, making your mouth water. You may be struck down by overwhelming fatigue that leaves your body feeling laden as though immersed in treacle. Or maybe your jaw starts to hurt from clenching. Maybe you have a pain deep set behind your eye that trails up over your skull and down your neck. Maybe your period is due, maybe it isn’t. Maybe you ate cheese, forgetting it’s a possible trigger, or maybe you didn’t.

You take yourself off to bed with the view to recover within hours. Painkillers line your bedside table and you take each one in turn at the first sign of the migraine. You lie down, dizzy and unable to sleep from the pain which has now gotten so bad that all light and noise must be eradicated immediately. An ice pack lies across your forehead not quite reaching the parts that are pained. A few hours pass and you wake up, rush to the loo to be sick, or sit up and be so dizzy you need to lay back down. You’re shaking, you feel like you’re hungover from 10 JD & Cokes accept even a hangover from 10 JD and cokes would be preferable to this shit show of pain you’re feeling. You are unable to distract yourself. The only thing to do is lie there some more, phone in sick, cancel any plans you made by forcing yourself to pick up your phone even though it hurts your eyes as much as looking at direct sunlight. Rattle off a text of apologies for having to cancel again, only to get one back saying ‘you wouldn’t be on your phone if you had a real migraine, it must just be a bad headache.’

The day passes in a blur, you cannot eat, you cannot sleep, you cannot watch TV or read, and you genuinely wonder how much more of this you can take. What if it never ends? What if today is the day you don’t recover from this pain and have to live with it indefinitely? You feel shaky, your skin is greasy, and your heart rate has sped up to a rapid crescendo. Anxiety causing the pain in your head to worsen again. That hangover feeling leaves you exhausted, thirsty and drained, so drained. Your stomach feels as though you’re sea sick and the thought of leaving the house is too much effort.

Your doctor advised preventative migraine treatment, so you take 4 pills every night of your life in hope that it will prevent the migraine occurring at all. You get a piercing that promises a quick fix and for a month or so your migraines reduce, but they are not gone. Oh no, they are never gone. When you’re tired, when your period is due, when you drink too much caffeine and also when you don’t drink enough. If you miss a dose of those sacred pills. Just about anything can be a trigger to be honest and you wish fleetingly that someone else would feel this pain so they could understand it. It’s impact. The catalogue of symptoms that are so disabling, so soul crushing, so unpredictable, and so much more, than just a headache.

You can also read this blog here on The Mighty Site

A Decade Of Lessons

December 28, 2019 — Leave a comment

The last 10 years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy new year 🥳

Just another chronic illness blog

December 21, 2019 — 2 Comments

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

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

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

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

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

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

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

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

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

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

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

View this post published on The Mighty here.

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

Living my best life with fibromyalgia.

March 10, 2019 — Leave a comment

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

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

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

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

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

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

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