The Fear…

I planned a really lovely weekend. I was going to visit a friend I haven’t seen since pre pandemic. She lives by sea and always makes me giggle like a maniac. I was so looking forward to it, but my body had other ideas.

ly is in a hospital bed wearing a face mask and hospital gown. She has leads attached to her chest

On Friday evening my chest pain got really bad. Then I had a fainting spell. As soon as I managed to get on my feet I would faint again. Sitting on my hall floor with my head spinning and heart pounding I felt scared.

I wasn’t scared of one particular thing; the fear was in the uncertainty. Not knowing how bad this is. Not even knowing what exactly this is or if it will ever go away. I have felt so fragile and vulnerable in these last few months. I haven’t been able to trust my body at all.

I have gotten used to my body failing me, but this has been on a whole new level. Every time I stand up my head spins and my whole body tingles. I can’t catch my breath, I don’t know if I will be able to stay on my feet. I have always prized my self sufficiency and it feels as though it has been slipping away.

My weekend in hospital hasn’t changed anything. Drs gathered some more information, but they couldn’t solve the problem. I await appointments with specialist consultants. Hopefully they can get to root of my long covid complications. The truth is I don’t even want to consider living like this permanently. It’s just too terrifying to think about.

For the moment I am happy to be home with my furry little nurse. I’m trying to rest and not stress about all the things that I am not getting done.

Black cat snuggling on blankets being petted

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Don’t leave me this way…

Since we seem to be heading full steam into SUCK IT territory for the disabled & chronically ill I wanted to talk about my experience of covid. There has been an overarching theme of those with existing health conditions being dispensable from the start, but now it’s pretty much being explicitly stated by our leaders. I want everyone to know how frightening this is for those of us that so many are happy to sacrifice.

As a person with chronic health issues (arthritis, fibromyalgia, stomach disease, anaemia, PCOS) I took covid seriously from the beginning. Lockdown was a complete lockdown for me. I stayed at home. I had no visitors. All my essentials were delivered. The only contact I had with anyone was the occasional driveway visit. My sister or bestie would stand in my drive and I’d sit in my open from door. I didn’t touch another human being or leave my house for months. I had hospital stays without visitors, didn’t celebrate my 40th birthday and spent Xmas 2020 at home on my own. My lockdown stretched on further than the official stay at home orders. Since early 2020 I have spent the majority of my time at home and I have been scared since the beginning. I had no idea what covid might do to me. I’ve experienced catching bugs or viruses that were no biggie for others, but sent me to the hospital. Every time I heard of someone dying being caveated with they had existing health problems, I knew that could be me. This pandemic has always been an emergency situation for me & those like me.

I now regularly see family & one close friend. I wear a mask, sanitise, stay outside as much possible. If I must be inside I go to places that follow all covid precautions and I exercise extreme caution. Doctor appointments aside I leave my home about once a week. I still have everything delivered and avoid contact with those outside my immediate circle. I do home tests before and after I go anywhere. With a couple of exceptions a restricted life has become my normality.

I contracted covid 19 in oct 2020. At that point I was spending 99% of my time alone at home. I was seeing only my sister, mum & nephew and wasn’t visiting anyone indoors. I still managed to catch the virus despite none of the family I was in contact becoming infected. The acute illness was not severe. It lasted about ten days & felt like having a stomach flu. I had more gastric than cold/flu like symptoms. My cough was very mild. I lost my sense of smell & taste. I felt terrible, but I didn’t require any medical attention. In the following weeks I really struggled with breathlessness & racing heart but assumed this would pass. It did not.

15 months later I am still dealing with long covid. My already limited mobility has been massively impacted. I become breathless even moving around my own home. I have to sit even to brush my teeth, make a cup of tea etc. I have overwhelming fatigue, brain fog and widespread pain have markedly intensified since having covid. I experience palpitations and chest pains on the slightest exertion. My heart rate regularly climbs to heights whilst trying to complete the most basic of tasks. I have been hospitalised on 4 occasions because my heart rate would not slow down to an acceptable level. Drs can monitor and treat symptoms, but they know almost nothing about long covid. They can’t tell my why these symptoms persist or if they will ever go away. My chest x rays are clear, my heart is not damaged. The tachycardia & breathlessness are a covid mystery.

A frightening and very real mystery. It is scary to feel as though your heart is going to burst out of your body. Or to be so out of breath that your head spins and chest burns. It’s a million times more terrifying to be told that the experts have no idea why it is happening or how they can make it better. Fear has been common thread. 2021 has been a really hard year for my health. All of my existing symptoms have worsened. The added problems have caused me serious problems and I think I have picked up every cold, stomach bug & infection going. All of which has been alarming. I’m worried that the next illness or flare might be the big one. I’m stressed about all the work I can’t do and the financial repercussions of that. I am chilled at just how little I am now able to do before becoming too exhausted/sore/dizzy/breathless to continue. Most of all I am terrified of what could happen if I get another variant of covid.

I am fully vaccinated (& boosted). I have masks galore, anti bac in every bag & pocket. I still leave parcels & deliveries by the door for an hour before I touch them. I bought a device to sanitise my phone. I’m never in crowds. I rarely go out. I’m acutely aware that I was being even more careful when I caught covid the first time. Every single aspect of my life has been affected by this pandemic. I know I am not alone. Most people have sacrificed. Many are in the same boat as me & others in far more treacherous vessels. I understand that this has been a collective trauma that everyone is eager to put behind them. I just wish more people would understand that this isn’t over yet.

When you justify the need to ‘live with covid’ by saying that most healthy people only experience mild symptoms I am the exception in that sentence. People like me will die or be permanently disabled if we ignore how dangerous covid still is. I understand that you want your life back. You want to stop worrying and missing out. I do too, but if we throw caution to wind now it’s not without consequence. If we pretend that covid is just another part of life we are throwing the sick, disabled, old & vulnerable to the wolves. I believe that those lives are worth as much as any other. Our needs are already ignored in so many ways, please don’t abandon us altogether.

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And just like that, I’m not ok…

I have just finished the first episodes of the much awaited And Just Like That. I was excited for the return of the S&TC girls (I know). I loved the original. I even liked the slightly dodgy films. I was so happy to see them all again. And now, I am not ok.

Poster for and just like that featuring Sarah Jessica Parker , Cynthia Nixon & Kristin Davies

If you’re planning to watch & don’t want me to spoil it, stop reading now. If you’re still here, how are you doing? Did you survive that first episode? I was so unprepared. Not until Lily started playing those foreboding notes did I suspect that Big was in danger. Those sneaky fuckers got me. As soon as the scenes started cutting from big on the bike to Lily on the piano; I knew. I didn’t want to accept it though.

I was really enjoying happily ever after with Carrie & Big. He’s still hot. Still colouring outside the lines. Still an old school romantic. Carrie is still Carrie. The writing is good. The shoes are better. It was all working until they broke my heart. This is not the forever I was looking for. How can Mr Big be dead? Why on earth did the writers think we could cope with this storyline?

Still from and just like that. Carrie cradling Big in her arms

I can’t stop crying! Listen, I always cry at the sad bits. Books, films, tv shows, life. If it’s sad, I cry. However, I think after 2yrs of a pandemic and all it brought maybe everyone’s emotions are a little raw. I find it increasingly difficult to view a whole range of media. The news is obviously a very rough watch. Fiction isn’t really much easier. The stress, fear, anger, grief has been turned up so high in real life that I really struggle not to absorb those emotions from fiction. I start feeling sad about a storyline and before I know it I’m flooded with a million real things to be sad about. Repeat for anger and so on. I’m beginning to think that Covid has left even more of a mark on me than I realised.

I’m wondering if others aren’t feeling the same. We’re all aware of the trauma covid brought. Huge losses & life altering changes. I’m not sure we have properly thought about the long term impact on our collective psyche. Lots of us were lucky enough not to lose a loved one. Many careers have not crashed and homes are maintained. A significant amount of people didn’t even get sick. Nonetheless, everything feels different. Also, the same. Is this chiming with anyone?

I feel like the world should have changed. So much of it hasn’t and that feels incompatible with where we are now. It’s hard to climb out of all those extreme emotions we’ve been swimming in. It’s even harder not to feel the need to revolt against those who still can’t bring themselves to care. I can’t articulate it perfectly, but I feel something has shifted. It could be wishful thinking. I hope not. It’s like the other shoe is just dangling from a single toe now. The people who least expect it might be about to get squashed.

ly wearing tortoiseshell glasses leaning her head on one hand and looking fed up

Well, that was quite the leap. From a 90’s reboot to revolution in less than a 1000 words. I think that might actually prove my point; there’s a lot bubbling right under the surface. Anyway, in brief, whether you’re sad about John James Preston, the damage a global pandemic has wreaked or the craven shower we are governed by, I feel you. It’s hard to keep it in. You’re not the only one. Be gentle with yourself.

Ordinary pain…

I have shared some of my pain management techniques in the past. Recently I’ve been experimenting with some new methods and I thought I would share how I have been getting on.

First is a product I have mentioned before, but have only recently been able to properly try. Lidocaine Patches are hard to come by in the UK. They’re expensive and so can only be prescribed by the NHS for a very limited number of conditions. They’re mainly used inpatient and for short periods. I had been able to try them for an incredibly short period of time a few years ago. I found them helpful, but wasn’t able to get a longer term supply. The surge in my pain levels this year sent me into research overdrive. Time and again I read articles & personal accounts of how amazing lidocaine patches were for arthritis & fibromyalgia. I discussed it with my GP who agreed that they would be a good option for me, but she wasn’t permitted to prescribe them. After much searching I found a way to source the patches and bought them myself. They are not cheap. I had mine sent from Canada, 10 patches were approx £60. For me, they are proving worth it. The patches offer excellent relief for my joints. They don’t eliminate pain altogether, but they do vastly reduce it. Patches can be applied directly to the skin and remain on for 12hrs. They offer pain relief for that entire period (the last few hours you can feel their effect lessening). I have also found the patches ease my more extreme period cramps. My approach is to use the patches on my very worst or most active days. I wish I could afford to apply them everyday, but with head to toe pain, that’s just not possible right now. I’m not happy that NHS treats chronically ill & disabled patients this way. Tying a Dr’s hands & leaving then to prescribe treatment that they know is ineffective is utter bullshit. I am however crazy happy that I can now access the patches. I know that not everyone has the means to buy things like this themselves (I won’t always). There is much to be done in the fight for disability rights. In the meantime I am doing what I can to get by.

I’m late to the simple concept of squared breathing. In all the therapy, meditation, pain management sessions etc I have done it’s strange that I didn’t learn about before. I’ve tried umpteen breathing exercises. All touted as a wonder cure, none ever succeeded in doing anything but annoy me. Imagine my surprise when the simple act of breathing in for four, hold for four, out for four, hold for four and repeat actually worked. Squared breathing doesn’t reduce pain, it reduces the panic I feel when my pain starts climbing out of control. Holding off that panic is game changer. All the tension that comes with freaking out increases pain. The whirring fear severely impacts my ability to make clear decisions. In short, the panic makes a horrible situation worse. Carving myself a little bit of time to think with this exercise actually makes a big difference in those unbearable moments.

Diagram explaining squared breathing

Finally, we have CBD. Not a new or unknown thing. This is another one I tried before, but only recently perfected. In the past I tried cbd gummies & oil. I didn’t have much success with either. I found the huge array of products overwhelming. I couldn’t quite work out what strength & how much I needed to find relief from my symptoms. The gummies had no impact. The oil was a little better, but the taste made me gag (& sometimes throw up). The after taste contaminated my mouth the whole day. Every site I looked at seemed to offer different advice. I became confused and favs up. A couple of months ago I tried some disposable CBD vapes. A very knowledgable member of staff in a local shop helped me. In no time at all I had finally worked out the right strength for me. I have now invested in a refillable vape & stocked up on oil. I’m using 10% organic vision cbd oil with a minty fresh flavour, which is very palatable. It’s helping with headaches, muscle pain & stiffness.

Multi coloured vape pen on wooden background

As always, I want to remind everyone that I am not a medical professional. I am only describing what has worked for me. Please consult your Dr before making changes.

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Another little bit gets lost…

I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.

The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.

Pulse oximeter  with heart rate at 180 & oxygen 95

Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.

There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.

Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.

Ly is wearing sunglasses, face mask &  hospital gown and standing in front of x ray sign

I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.

It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.

All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.

The words I’m not ok on black background

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Watching through my fingers…

I’ve been fairly quiet on the blog front. Clearly we’re all under some pressure, but I’ve also been dealing with some bonus pain. I’ve had episodes of awful symptoms which signal that my pancreas may be acting up again. It’s been a while since I’ve had to deal with pancreatitis and I am scared of a comeback.

The pain triggered some really desperate memories. It also gave me lots of time to ruminate on how PTSD never stops giving me unpleasant surprises. The nature, frequency & severity of my reaction to trauma stimuli is forever changing. In my (also unending) quest to de stigmatise mental illness I thought some recent triggers might be worth sharing.

Waking up in the middle of the night to pee is not a thing that I do except during pregnancy. I’m a hold ‘til morning girl. The frustrating sensation of leaving a comfy bed & stumbling to the toilet in the dark is one I associate with pregnancy. Sitting on the toilet half awake looking at my painted toes I had the trauma version of de javu. My body remembers this. The exact emotion. The precise thoughts. I’m ok, but I know I won’t be getting anymore sleep. I’ll be distracting my head from going back there. Lying still in the dark would be asking to feel things I don’t want to feel.

Sometimes to occupy my mind through those sleepless hours I watch crap tv. Ideally something I don’t have to concentrate on. Mildly entertaining 90’s sitcoms work a treat. That is until the wife in King of Queens is unexpectedly pregnant & then just as they’re getting happy about it, not pregnant anymore. Numb viewing to uncontrollable sobbing in 20mins or less.

A fun park adventure with the rascal is momentarily derailed when someone calls me his Mummy. I smile, correct them & return to my role of bad octopus pirate. I feel the impact, but I look steady. Until much later when the memory of all the babies who’ll never call me Mummy knocks me flat.

I wake up bloody because my period has started in the night. I’m not inconvenienced I’m terrified. Those cramps ripping through my pelvic region signal disaster. It takes a bit of time to centre myself in the now. Repeat, ‘I’m ok’ over and over as I drag myself through a shower. Tampon, comfy clothes, paracetamol. I’m almost calm by the time I return to tackle the bedding. I’m genuinely shocked when the sight of blood on sheets sets me trembling. I was devoting all my attention to not getting sucked into one trauma hole that I forgot about another. I have to sit on the floor but I’m still watching an old iteration of myself. Younger, sicker me is ripping bloody sheets from an entirely different bed. More than the sheets are stained. My body is raw & dripping. I feel as exhausted now, in my healed, safe body as I did then in that recklessly butchered one.

My stupid period tracker with its stupid unwanted alerts. High chance of pregnancy. Such a simple sentence triggers such complex crazy. The stress and hope of trying. The heartbreak of failing. The unwanted reminder of how few of these high chance days may be left. Fleeting recollections of disappointing perfunctory sex and an even more disappointing man. Wearily buying tests. Angrily buying tampons. Wanting the monthly reminder to be over and fearing that end. Wrap it all up in a hollow ache in my middle that never leaves, but echoes as I read those words and you have my condition.

My ridiculous cat managed to injure his paw and now I must try to keep dressings on until it is healed. If you know anything about cats, you’ll know what a challenge this is. I have experimented with various ideas none of which preserved his dressings for long. I started thinking he needs a sock & then remembered I had some baby socks. They must have belonged to one of my nieces or nephews. Baby bits and pieces will end up in your hand bag/pocket after a day of auntying. I seized upon the long lost sock as the solution. I didn’t feel sad or even link the tiny item to anything painful until I started trying to put it on my cat. Then from nowhere I was flooded with too many feelings. I love my boy, he’s wonderful. Still, I couldn’t avoid the fact that he’s the sole recipient of my mothering.

A character in the book I’m reading is trying, with difficulty, to explain why she feels guilty for various past events. I feel as though I have taken a deep breath & inhaled fictional strife. My own twisted guilt is equally hard to comprehend. For me, self reproach is as essential as oxygen. The chord of perplexing guilt could catapult me into a multitude of memories. This time I land flailing in the aftermath of standing up for myself. I can feel the certainty that so recently fizzed go flat. That overwhelming sense of this must somehow be my fault returns. I feel angry about all the shit I put up with, but I still can’t fully convince myself I’m not to blame. Now I’m full of guilt for events long passed. Today is ruined as I attempt to untangle things that never made sense to begin with.

Triggers lurk. Sometimes entirely unexpected things stir up pain. It can be fleeting or set off a chain reaction. I have adapted to a life with booby traps. I often appear untouched, but only because I work so incredibly hard at hiding the mess.

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Red Alert…

The discourse around Sarah Everard’s disappearance has been horribly familiar. The tired victim blaming about where she shouldn’t have walked. The same sinking feeling as the days go by. Duplicate faux shock from men when we recount what life is like for women. The self-same chorus of ‘not all men’. Year after year. Case after case. Victim after victim. It is always the same. None of this is new or surprising. It’s just horribly sad & terribly frightening.

Women aren’t under any illusions about the world we inhabit. We know that we aren’t safe. We’re scared when we walk home alone from the train station. We calculate the threat of each interaction with a man we don’t know. Fashion make shift weapons from handbag contents. The rules are ingrained; no headphones at night, carry your keys, shout fire instead of rape, call me when you’re home! We have been absorbing the message that we are in danger since childhood.

There is no poor decision making. We are simply living our lives. Avoiding all risk isn’t possible. No matter what complex precautions we take, we are exposed. If the journey from my bus stop to my house is along dark, quiet streets then I have no option but to regularly walk alone on dark quiet streets. We don’t have personal escorts, we can’t control who will sit next to us on the train, taking taxis can be cost prohibitive & most cab drivers are men anyway.

Dark,  foggy residential street

We know that ‘not all men’ are dangerous, but we don’t know which ones are. From childhood girls are bombarded with harassment. It never stops. Teachers & drs & bus drivers & our friend’s dad & policemen & strangers on the street & priests & guys in bars & colleagues & friends & lovers. Lots of women aren’t even safe in their own homes. We all have stories of close calls and false alarms. Most is can tell you about the encounters we couldn’t escape too. It is not a revelation that most guys aren’t going to murder us. Knowing that doesn’t change our real fear because often it’s the one you trust who will. The worst case scenario is a reality and we’re reminded of that every single time a man stands too close or lingers too long. We are adding up where this is headed when a creep makes a crude comment or gets aggressive when told no. Here’s the thing that not many men will admit, you know it too. You all know men that you wouldn’t want alone with your sister/daughter/girlfriend. You see those scary men shouting at us on the street and grabbing us in bars. Every time you tell a woman you care about that you’ll see her home or to her car it’s because you are fully cognisant if the threat. The more insidious of you get a kick out knowing you can frighten us without losing plausible deniability. Not all, but definitely enough.

I read a story recently about a guy who got a big cash in hand payment & had to take public transport home with the money. He was on high alert for the whole journey. Everyone looked suspicious. He second guessed his every move. When he relayed how stressful the journey was to his wife, she replied ‘ now you know how I feel everyday’. The solution to this problem isn’t changing female behaviour. Our awareness is at code red. Let’s tackle the predators not prey.

Instead of rushing to shout ‘not me’ men need to listen. They must examine their own complicity & learn what would actually help others feel safer. Challenge your gross friend. Know when your voice is helpful and when it is silencing. Let’s begin to have real conversations about getting more women into key positions. Our criminal justice systems approach to violence against women still needs an overhaul. Perhaps most importantly we all need to think about how we raise our children. The cycle must be broken. Too many women have already been lost.

Stone wall with protect your daughters scored out & educate your sons

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My sign is vital, my hands are cold…

CW: Self Harm

Lately I’ve been having regular checks for the heart rate thing. The nurse who took my blood & vitals last week was really familiar. I had that strange I’ve definitely met you feeling, but also knew I didn’t know her, know her. I couldn’t place her at all until a loud clatter startled her. Her sharp intake of breathe shot me back in time.

She was the nurse I stunned with my self destruction in this same hospital many years ago. She either didn’t recognise me or correctly judged it best not to indicate that she had. She was friendly & kind, but the sound of that inhale shook me. I was back there, covered in blood & guilt.

I can so clearly remember walking into that triage room. Concisely explaining why I was there & seeing the doubt in her eyes. I could tell she thought the large towel on my arm was overkill. I knew she was weighing up how to nicely dismiss me. I was too tired to do anything other than unwrap the makeshift dressing & expose the truth.

Foggy picture of cars outside hospital. Words ambulance only painted on ground

The inner layers were blood soaked & the final one stuck to the wound. When I yanked it off with same the lack of self care that had led me to that room, she gasped. An entirely involuntary expression of what; shock? disgust? fear? I couldn’t discern, but I knew it wasn’t good.

The speed that she whipped through the triage routine was more about her discomfort than mine. I had long lost my objectivity. I sought treatment as a means of calling a halt to that cut. I had given up seeking enough. I knew that enough was a lie. When I looked at my arm I really couldn’t tell anymore if it was any worse than anything else I had done to myself. It was just another failed attempt to carve out some peace.

Peace that I knew was never coming. I already felt stupid & ashamed & so horribly guilty. For all the usual reasons and now also because it was obvious I had ruined this women’s night. She hadn’t bargained for my level of determined self loathing; I’d upset her. I felt selfish for not being more clear. I shouldn’t have allowed anyone to be caught off guard.

I wanted to be better. Do better. I wished I could give this nurse & everyone else the explanation they needed. I yearned to be somewhere else. I didn’t even want to do this anymore. My blades had long since lost efficacy. I could never cut deep enough. Never shed enough blood. The quiet I needed was evermore elusive. I was desperate and so fucking tired. Yet, I still couldn’t stop.

As I waited for her to finish with my blood pressure I was stuck in the past. Mired in the dread. Reliving the experience of having my arm stapled shut whilst already planning the next assault. Knowing I couldn’t escape the nagging voice in my head that insisted I must cut. I must earn any rest. I had to atone for sins I wasn’t able to articulate. I had to release all the fetid emotion with my blood.

When I left I felt blessed. And cursed. Blessed that I was wrong. I did escape. I have hushed that internal need for penance. Cursed because I still haven’t silenced it. There will always be triggers pulling me back. Days when my scars itch to be opened. You can’t play with fire & not get burned. The magic is remembering I know how to make it stop. I just have to wake up every day and choose this new, better life. Easy, right?

Black and white photo oh plus size woman looking at scarred arm

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This is 40…

Fuck. This is it; the big 4-0. I am definitely not ready. Up until now I haven’t worried all that much about the number on my card. This year it all feels rather scary.

Pink birthday cake with sprinkles & 40

Forty is different. It’s just so huge. I have this sense of it being a before & after year. There’s the obvious sinking of youth. I’ve noticed a few changes on my face. In themselves they aren’t a problem, what they signify certainly gives me pause. I’m beginning to wonder how my body will stack up against the ageing process. Are my dodgy joints going to pack in altogether? Will my hair go white? Is menopause on the way?

ly is standing against a sandstone building arms stretched out wearing rainbow fringed top & blue velvet skirt

40 feels like the nail in the coffin of fertility. I know that hope is already all but extinguished. Hitting my fifth decade seems symbolic; a final snuffing. There are so many unattained goals. I expected to be living a different life by now. Time is whizzing by faster than ever. Getting through the ultimate to do list is increasingly daunting.

It’s not all black. I have built a life I’m proud of. I’ve filled it with bloody lovely buggers. All my people have made beautiful babies for me to adore. I’m doing the work I’ve always wanted to do. I feel loved. So, this is 40. Terrifying, but I’ve conquered the fear before. Why stop now?

ly is wearing a t skirt with the slogan ‘thou shalt never fuck a tory’ and blowing out candles on birthday cake

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Nothing is like it was…

This month’s insomnia has been sponsored by infertility. My inability to reproduce occupies far to much space in my head & life. A big problem with healing from pregnancy loss is how taboo the topic remains. Things have improved a little, but on the whole I still feel like most people do not want to hear about it. Some have very valid reasons to shy away from those conversations. Others merely feel uncomfortable. Rightly or wrongly that leads me (& others) to feel we must keep it to ourselves.

Obviously I have attempted to combat the silence both in my writing & my life. I know it helps those who have lost & those around us to be more open. My own attempts to get on with it quietly were incredibly harmful to me. Still, there is so much that I have not shared. There are important people in my life that I’ve never spoken about my miscarriages or infertility with. It’s not a secret, but many things have prevented me from feeling able to discuss how I have felt.

Beyond emotion there are so many details that aren’t revealed. Common place aspects of miscarriage that are only ever referred to in hushed tones by those who have been there. There are various behaviours that I kept to myself because I feared they veered towards crazy. I’ve subsequently discovered they’re common rituals. Humans find comfort where they can, it would have been less frightening to know I was normal.

Most of all, the secrets are weighty. I feel laden with the obligation to keep the unmentionables shrouded. I don’t want to feel this way anymore. I definitely don’t want others strapping on this load. I need to let some of it go.

I say some, because, there are people & realities I cannot change. Crashing against solid stone will bring me no comfort. Thus, I want to reveal the parts that I can with this kind & ultimately faceless audience. Hopefully it can help others who feel burdened by conventional decorum. At the very least I may finally feel lighter.

I fear you’ll judge the box I’ve kept for 20 years. Adding items that others have hinted should not have been saved. Very few know it exists, the suggestion that it shouldn’t have has always hurt. I don’t think the positive tests from each pregnancy are gross. I’ve still felt the needed to hide them. Saving hospital bands & paperwork makes sense to me. I don’t understand why wanting to hold onto something (anything) connected to my children is morbid. I’ve been assured it is.

Positive pregnancy tests
Document requesting blood pregnancy test

I’m embarrassed of the few new born pieces I dared to purchase. So often I’ve seen childless women with tiny socks stashed in a drawer portrayed as lunatics. Dangerous, even. The type who might steal your baby. I hide the pregnancy, early years & baby names book. They’re packed away with the baby grow I saved from my niece’s early days. I thought one day I could frame pictures of them both babies identically clothed. Yes, the frame that would have housed those photos remains box fresh alongside. I have no need for this paraphernalia, I just can’t bear to throw them away. I worry this will be viewed as pathetic. Another crazy lady whose biological clock went bang. They were logical purchases when I made them. I was pregnant. When those pregnancies failed I was certain the next one wouldn’t.

I’ve never shared the pictures I took when my stomach started to change shape during my last pregnancy. I wanted to show off that development, but I didn’t think I was allowed. At the time it would have been tempting fate. Afterwards, there is instant unease if the subject is approached.

ly is wearing a red dress and taking a side on mirror selfie

Then there are the memories that will never leave and are never uttered. Unpleasant shards of the mess no one wants to witness. The exact tone a nurse used when she told me it was for the best because I was so young. Or the ice cold that runs through me everytime I see an examination table with stirrups. The fact that a miscarriage is more than blood and that more must be dealt with. I don’t talk about sitting alone in my bathroom trying to decide what to do with the bloody fragments of the child that will never be. Or the torture of bleeding a little & then having to wait. Clinging to hope through blood tests and scans. Only to be told you’re technically still pregnant, but it’s no longer viable.

Risk of infection, prolonged bleeding, the extent of the pain are all things I only become aware of through experience or via other women in private groups. We’re all so squeamish about the reality of pregnancy loss. I think it’s entwined with the patriarchal disgust of ‘female’ bodily functions. The same whiff of shame hangs over the process. I have felt I must not reveal anything too corporeal. Almost as though declaring the facts of my physical condition is gratuitous. Likewise, I have restrained aspects of emotional responses for the comfort others. It simply isn’t sensible to treat such a traumatic event with polite moderation. The inhibition has damaged me.

The older I get the more I seek clarity. Much of the pressure that society brings to bear obscures my view. I don’t want to submit to it anymore.

Pale white feet standing in Loch with pebbles

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