Ordinary pain…

Pain is a curious beast. Its purpose is to protect us. Our own built in warning system; something that compels us to take our hand out of the fire or call a doctor. The whole point of pain is to give us a message that we don’t ignore. That is until something goes wrong. Then ignoring pain becomes your life mission. 

Chronic pain is impossible to accurately describe. If you haven’t experienced it, you can never understand. All our lives we’re taught to report pain. The expectation being that you find the problem and there will be a solution. You graze your knee, your mum puts germolene on & kisses it better. You break a bone, you get a cast & it heals. Now with vigilance we can even hope to survive life threatening illness. We are a society awash with information; what foods we should eat, how often & how to move our bodies, how much sleep, water, sunlight are optimal. Our collective consciousness is set to believe that if we do the right things we can prevent illness and if something still goes wrong we can fix it. When that doesn’t happen, you’re stuck in a void. Physically, you are ill, but psychologically you must find a way to override it. 

 I am awoken most mornings by pain. I average about 4hrs sleep and rising from my bed is a fainting hazard. Every step I take hurts. My digestive system is best described as erratic and my autonomic processes are haywire. Thus I spend my days dizzy, sore, nauseated, exhausted and unable to regulate my temperature. That combination would bring most people to a standstill. You’d call the Dr, take the day off and you’d be right. But it’s everyday for me and Drs can’t help. I can’t ‘call in sick’ from life. I’m left with the challenge of learning how to turn off my body’s alarm system. 

Unfortunately, you can’t. It isn’t possible to stop the pain. Chronically ill people just have to do it anyway. The only alternative to missing my entire life is to do as much as I can despite the pain. It takes a lot of work to rewire one’s natural responses. Then even more work to decipher how far you can push. A huge amount of planning is involved. There are calculations required for every single thing I want to do. Firstly the practical: 

I always try to schedule my days. I estimate in advance how much impact each activity will have on my body. Then aportion rest days accordingly. Not just big days, but daily essentials like housework or showering. I attempt to judge how much I can handle and how long a recovery period I will require. 

The next step is planning. Before I go anywhere I check various things. Will there be places I can sit down, do they have disabled toilets, can I access water & food I can eat? Then I figure out my condition that particular day. Is my stomach behaving? Will it be safe to eat when I am out or am I likely to vomit. Am I especially dizzy? How safe is the location if I faint? Can I physically manage the walking distances involved?  And so on and so forth. 

The last stage of practicalities is symptom management. Medication selection, will I require more than meds for pain relief, do I need to take food or water. What clothes will keep me most comfortable? Items that won’t increase pain, will be cool enough if I overheat, but easy to carry layers to guard against the cold if necessary. Maybe I need cooling spray or my tens machine. How many of these things can I actually carry? All must be weighed up before I step foot out of the house.

Preparations complete, now comes the really tricky bit. It’s time to manage my mind. This part is entirely in my hands. There are no guaranteed techniques. One can see pain specialists, psychologists and research til the cows come home, but you can only know what works via trial and error. One of my conditions, Fibromyalgia, impacts the way the central nervous system processes pain. Sometimes my nerves send pain signals to my brain that are way out of proportion. I can have pain anywhere or everywhere for no discernible reason. The only way to function is to override that pain. I can’t stop feeling it, but I can attempt to alter how I react to it. 

My first line of defence is what I call ‘mind over matter’. I focus only on the very next thing to be done. Nothing else exists. For example, I must get to the seat up ahead. I don’t think about which parts of me hurt. No lingering on the sensations I am experiencing. I do not consider what comes after the seat. I keep my eyes on my target, keep moving and tell myself I can rest when the task is complete. This theory can be applied to anything. Brush my teeth, finish the paragraph, get to the end of the driveway. The reward of rest awaits me. 

In bouts of extreme pain I opt for deception. When I have tried every pain relief method at my disposal to no avail, I lie to myself. I close my eyes and repeat ‘I’m ok’. It doesn’t lessen the pain, but it can con my body out of panic. Panic makes pain worse. The body tenses & heart races. Calmly telling myself that I am ok repeatedly can override the fear coursing through my body. The pain may be unbearable, but I won’t stop the repetition. I will bear it. 

Distraction can be of use in various forms. Really loud music is a rudimentary diversion. As is cold water/ice or projected light. Basically I bombard my brain with stimuli in the hope of distracting from the pain. It’s a trick, sometimes it offers temporary relief. My other interruption tactic requires the help of others. I need someone to talk to me. A steady stream of words without my participation. Don’t ask me questions or wait for a response, simply give me a voice & a narrative to focus on. I’m not sure why but it has a calming effect. I don’t take in everything that is being said. I merely zone in on the voice and try not to think about anything else. It doesn’t stop the pain, but it somehow helps me manage it. 

My last ditch effort is comparison. I recall a time when my pain was worse. I remind myself that I got through that. The pain did eventually end. If it passed before, it will pass now. I endeavour to remember all the details. Where I was, what I wore, the smells, sounds, what my eyes rested on, the sensations of needles piercing my skin, the names of medical professionals, were they kind or rude, how long I waited, did I lie down and every other particular. Eventually, reaching the point when the agony began to subside. I strive with all my might to recollect that sensation; the incredible relief of pain beginning to melt. I hold tight to the belief that it will come again.

And there you have it, the tools in my box. Of course none of them actually leave me pain free and they’re all exhausting. It takes enormous energy to pre-empt every move and even more to employ these strategies whilst already in pain. At the worst moments they don’t have any impact at all. There are times when my body is excruciating. The pain so all encompassing that there is no escape. On those days I am beaten. I stay still and hope for it to be over. That’s the real truth of chronic pain; there’s no getting away from it.

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Lies and Distractions…

Just when I thought Keir Starmer was the most rage inducing Labour politician, Tony Blair popped his head out of whatever luxury hole he currently resides in. He decided that we all needed to hear his ableist and stigmatising opinions.

This statement is vile in a number of ways. Blair’s wilful ignorance will contribute to rising disability hate. There is no excuse for someone in his position to feed the right wing ‘scrounger’ narrative. I feel compelled to clear some things up.

Self Diagnosis

There is one reason and one reason only that there has been a rise in ‘self diagnosis’. That is inability to access mental health services. NHS waiting lists are long and actually getting a referral in the first place is laborious. Many people are instead directed to online resources and/or NHS helplines. Those who make it onto a waiting list may still have battles ahead. Most patients are offered a short course of CBT*, a modality that is not suitable for everyone and is often counterproductive. Those struggling to deal with mental illness are not researching symptoms and looking for a diagnosis for the hell of it. They do so because they are desperate. They are not adequately supported by professionals and are driven to find their own answers.

Disability Benefits Bill

Let me be clear, no one without an official diagnosis is receiving disability benefits. Successfully applying for these benefits (PIP, DLA, ESA or ADP**) is an incredibly onerous endeavour. The process requires extensive disclosures, evidence and the support of medical professionals. The system already purposely discriminates against those with mental illness. The criteria are designed to exclude symptoms and difficulties experienced by those with common mental illness like depression or anxiety. Many people with a professional diagnosis and treatment input from psychiatric services are denied these benefits. There is zero chance of someone just saying they have a condition and being approved.

Gaming the System

Implying that large numbers of people are illegitimately claiming benefits is dangerous and inaccurate. Fraud rates for disability benefits are very low. In fact, there is a higher percentage of claimants being underpaid. The application process is exhaustive. It is intentionally stressful and intimidating. Assessors frequently over ride expert medical opinion despite being unqualified to evaluate the conditions claimants have. Vast numbers of claims are rejected only to be overturned on appeal. Contrary to the current narrative, disabled people are often denied support they are entitled to.

***

Scapegoats

Disabled people make great scapegoats. We are one of the most vulnerable demographics. Often with little emotional or physical resources to fight the bureaucracy. We have been subject to harsh conditions since the beginning of austerity. Research from the University of York found that the impact of cuts to social & healthcare were linked to over 57,000 more deaths than expected between 2010 – 2014 alone. The perception that disability benefits are easily scammed and so costly as to damage the economy further endangers us. In 2023/2004 multiple regions in the UK recorded their highest number of disability hate crimes. Being scapegoated by those in positions of power is nothing new. The Tories have been using us as a distraction from their disastrous policies and corruption for years. To have Labour join in is a tough blow. I didn’t have high hopes for this government, but this page from the Conservative playbook is still alarming. Yes, I know that Blair is not a member of our government, but he does still hold sway within the party. His comments will absolutely be associated with Labour.

Disabled people are not to blame for the crisis in our health service. The UK has been experiencing a swell in both physical and mental illness for a number of years. This is as a result of deteriorating public services and a drop in quality of life. The pandemic played a part, but the biggest culprits are our political leaders. It disgusting that the trend of pointing the finger at a vulnerable group to distract from the reality of governmental failures is set to continue.

* Cognitive Behaviour Therapy

** Personal Independence Payment. Disability Living Allowance. Employment and Support Allowance. Adult Disability Payment.

*** Department of Works & Pensions

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The world it just keeps spinning…

Things have been rough since I lost Bronan. I keep expecting him to wander into the room. I’m home most of the time, so we were together all the time. My daily habits and routines were centred around my boy. Eveything feels off without him.

I had Bronan cremated & he’s back home now. I also have a little bit of his fur. I haven’t completely decided, but I think I will scatter a little of him in his garden with some forget me not seeds. I will keep the rest of his ashes home with me. The people I worked with were wonderful. Very compassionate & professional. I am grateful that they made our last moments together so peaceful.

I have been seeking solace in my little ones. They are so loving and wonderful. They offer temporary distraction from my sadness. It’s summer holidays, so we’ve had time to have lots of adventures. We’ve been to the park, swimming, the cinema and more.

My adult people have also been wonderful. It’s very comforting to be around people who don’t need me to explain how I’m feeling. I want to say thank you to everyone who has been so kind here & on Instagram etc. I appreciate all of your lovely words.

Reading, listening, watching…

After a hopeful beginning we have been plunged back into bitter winter. I for one am not enjoying the snow. It is freezing and has made quite the dent in my galavanting plans. In the absence of exciting carry on I thought I would share what has been entertaining me through the cold dark nights.

I just finished The Keeper by Graham Norton, which was surprising. I actually bought it and read the first chapter on a bus years ago. I then put it in my handbag, put the handbag in one of my wardrobes and promptly forgot where the book was residing. Last week I stumbled across it whilst looking for something else and dived in. It’s an intriguing tale that kept me gripped. Norton has deft style that is very engaging. The perfect bus/bath read.

In my typically late to the party fashion I have only this month watched Misommer. It’s the kind of film that freaks me out, hence the delay. In the end it was nowhere near as horrifying as I feared. It is bizarre and disturbing, but overall I could handle it. That last scene nearly had me, though.

More amusing, but still disturbing was Ian Hislop & Jon Stewart’s conversation on the latter’s podcast. If you know me at all you are aware that I adore Hislop. As much as enjoy the sparkling wit and insight. It is always unnerving to examine the state of our world through such an expert lens.

I also found a very cool taping of Bernie Sanders and Frankie Boyle discussing the essentials of the moment. It‘s refreshing to hear an American politician talking in leftist terms. It’s available on YouTube(How to Academ) and I think you would enjoy it.

I was on a horror kick this month when I came across Bodies, Bodies, Bodies. Nothing groundbreaking, but a thoroughly enjoyable way to spend 90 minutes. With a hurricane, a bunch of attractive young folk and a big pinch of toxic suspicion you’ve got yourself a movie.

Finally, I have this very morning started on Alan Bennet’s Pandemic Diaries. Alan Bennett is my literary comfort. His words soothe me no matter the topic. He has this incredible talent of tackling any topic with heart without blurring what’s real. This one will be read way more than once.

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Watching the wheels go round & round…

I’m almost a year into lockdown. There were a few fun outings last year, but for the most part I’ve been home. Man alive, I’m fed up! I’ve reached the take comfort wherever you find it stage. Turns out that’s some random locations.

Old crime shows. Not flashy American ones. They’re too full of hero talk & ridiculously good looking people. They offer no comfort. What I like is late 90’s gritty UK stuff. Proper dark crimes with complicated twisted characters and very few happy endings. It probably speaks to my craziness that these are the tales I seek solace in, but hey ho.

Posters for waking the dead, wire in the blood and cracker

Tic Tacs. I’ve no idea why. A pack of cherry cola ones came free with something I ordered and now I am hooked. I’m not usually big sweetie eater, but sucking on these seems to really help my concentration. Is this some kind of regression to infantile soothing? Who knows. They’re damn tasty, so I’ll carry on.

Candles with fresh outdoorsy scents. Perhaps because I never go anywhere & I miss the world. Probably also because my cat won’t stop farting. Either way I’m obsessed with anything with a whiff of the sea or a refreshing mountain breeze.

White roses in a vase, candles, photo frames on decorative table

Lists. If it isn’t on my to do list I will definitely forget all about it. Lockdown has made this habit rather more frenzied. Every minute activity must be noted & crossed off. I think it might be a reaction to living such a restricted life. I suspect breathing will be included very soon.

Fleecy bed sheets. I’m obsessed. Bought one set on a whim and now want nothing else on my bed. They’re so unbelievably soft and warm. I’ve purchased another complete set and loads of fitted sheets. This way I can have some fleecy goodness with ever duvet set. It’s the closet thing I can get to a snuggle mid pandemic.

Grey fleecy bedsheets

John Oliver. The man is a marvel; smart, funny & genuinely decent. I’ve been rewatching old episodes of Last Week Tonight and finding interviews on YouTube. It boosts my sense of well being to know good people exist in the world. If they can make me laugh out loud all the better.

John Oliver laughing

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Ain’t no place like home…

We’re not going anywhere & lots of are finding much of our work has vanished. If like me your anxiety is spiralling distraction is just the ticket. So, here’s a bunch of things I have been enjoying. Hopefully they’ll help you pass some time.

I’ll kick off with excellent things you can stream. I’m new to Amazon Prime & not sure I’ll keep it, but I do recommend that you take advantage of the free trial to watch Hunters. It is all kinds of awesome. Set in the 70’s it follows a group of Nazi hunting crusaders. It has a slight Tarantino seasoning & lots of nods to the current political climate. Well worth a watch.

Hunters poster

Netflix is sheltering a few hidden gems at the moment. Wasteland is a revenge heist set in a distinctly unglamorous council estate. It’s clever & engaging. Hangman is a mostly unnoticed serial killer thriller. It features a decent turn from Al Pacino & enough sentiment to balance the gore. Finally there is Thanks for Sharing, a romantic drama/buddy movie about sex addicts. It’s much more uplifting than it sounds. Give it a bash.

I used another free trial to have a gander at Shudder. I used to find horror films too scary, but for some reason I have come around to them. As streaming apps go, shudder is disappointing, but I did find one cracker. Revenge sees an underestimated young women seek retribution against three gross men. It’s very full on, but has a satisfying ark (TW – Sexual Assault).

Revenge poster

The i player has both series of Shrill, which are definitely binge worthy. Based on the book of the same name by Lindy West it follows a women’s body liberation journey. Amazing watch for those on the Bopo path and brilliant primer for slim folks wanting to understand some of the fat experience. Oh & it is funny, sexy & smart.

Shrill poster

All 4 has a gorgeous new comedy by Mae Martin. It takes a bittersweet look at love & addiction. It’s funny & sweet with some proper touching moments. If you liked This Way Up (still on there if haven’t seen it yet) this is the one for you.

Two women dancing in neon lit room

You’ll have to pay a couple of quid, but The Kitchen on Sky Movies is worth it. It’s a gangster flick with a twist. Strong female leads all turning in tip top performances plus thrills & spills without a depressing end.

If you are all tv’d out it might be time to switch mediums. My new favourite relaxation method is getting in bed & firing up a podcast. I am currently obsessed with three. All Killa No Filla is fueled by the genius of stand ups Kiri Pritchard McClean and Rachel Fairburn, Both are hilarious & their woke take on the true crime genre is even better. If you’re interested in serial killers, but sick of the sensational & often misogynist approach these are your girls. Episodes consist of well researched information and random (unbelievably funny) sidebars. I eagerly await each new offering.

All killa no Filla logo

Myths & Legends does exactly what you would imagine. Each episode takes you through a different myth, folklore or legend filling in all the details you might have previously missed. If you’re interested in the origins of the stories you half know, give this a listen.

My newest discovery is Behind the Bastards. Journalist Robert Evans invites a guest to delve into the lives of histories biggest bastards. Intensely researched & surprisingly entertaining there’s even a some nonsense with machetes. What more could you want?

Instagram stay home logo on black background

Harder than easy…

I understand the appeal of ‘fake it til you make it’. It is definitely a strategy i’ve employed, but I’m beginning to wonder if maybe there’s a dangerous crossover point. Does acting like you’re ok until you can actually be alright lose it’s usefulness when OK ceases to be a realistic goal?

At the moment I’m wavering between distraction at all costs and crying in the dark. I’m filling the days with as many fun or productive things as I can physically manage. I carry on with the wee ones; go rascalling to farms & libraries & soft play. Have lunches & chats & belly laughs with people I love. They temporarily pull my edges together. I’ve been busying myself with tidying the spare room. Organising my wardrobe. Hanging art that’s been waiting in boxes for months. I keep going until my body screams. When I stop I realise the calendar is still set to my due date & there is just no way I can open the curtains today.

Calendar on pile of books

Some days I can almost fool myself that I’m doing ok. I can keep from asking what’s the point. Push the existential thoughts aside & paint on a smile. It never lasts long. I’m still hollow. I don’t know when the forced productivity becomes a lie. Left to my own devices I am pretty sure I would lock the door & perpetually reopen my wounds. Is this manufactured well being what people mean when they say ‘just keep swimming’? I have to be honest I feel like eventually I’ll probably drown.

Person submerged in blue bath water

I’m holding onto the possibility that it might get better. Time heals and so on. I’m not sure I believe that, though. I think most of the time you probably just get used to pain. Intellectually I can work our what’s happening. I’m grieving. Not just the baby I lost, but the idea of any baby. I’m grieving the entire life I wanted. All the babies I never got to hold and all the theoretical ones that might have made that easier bear. I no longer have hope. That’s what is making it so hard.

I’m worried that this is it. My life will always be waiting for the next life raft. Clinging to a few hours of something good before I wade back into nothing. Emotion aside I don’t even have the energy to keep up this level of diversion. The recovery to doing ratio is creeping up. It is getting harder to put on make up & push my arse out the door. I fear my real mood is leaking out.

How long can I keep this up? Congratulating myself on finally emptying the washing basket feels like a shallow victory when I can’t write anything that doesn’t make me weep. I really don’t know if I’m nailing the life goes on thing or just closing my eyes to reality. There are still pre natal vitamins in a cupboard I no longer open and a box of positive pregnancy tests under my bed. The perfume I wore when my own made me nauseous remains on my dresser. I can’t sleep. I’m struggling to imagine a future that feels fulfilling. I can’t help thinking that avoiding these truths won’t change them.

Moonlit sky

I can logic this out, but that doesn’t change the problem. I can’t afford to get crazy again. I also cannot stop wondering if this is all there is. This keep on keeping on farce is wearing me out, but I don’t see a functional alternative.

Hit the spot…

February has been a fairly insular month. It’s very cold outside & I’m not much in the mood for socialising. I’ve hit the Netflix & actually chill a little harder than usual. It’s been the month for distractions & these have been the most effective.

I’ll just dive right in with the Netflix shows that have definitely been diverting if not entirely relaxing. Abducted in Plain Sight is insane. It’s documentary covering the abduction of a girl by a family friend. The behaviour of almost every adult in the entire tale is beyond explanation. If the story was fiction it would be dismissed as ridiculous. Also horrific, but in a completely different way is The Bleeding Edge. Another documentary, this one about medical devices & implants that highlights a terrifyingly lax regulation process. Watching this doc probably did not help my insomnia, but it may save me some future medical catastrophe. Last of my Netflix trilogy is also billed is scary. Since I’d never trust a man I’d only known 6 weeks never mind marry one, this one isn’t keeping me up nights. Dirty John is based on the true story of a lying, cheating nutcase. Whilst it’s doing nothing to raise my opinion of the menfolk it is worth a watch. I have been watching one series that does make me feel warm towards humanity, Catastrophe. Everything about it is exceptional; hilarious, real, romantic, tawdry & I liked. The final episode had me in bits, in a good way.

Netflix viewing

An insomniacs best friend is a good book and I’ve been rattling through them in the last few weeks. I opened the month with The Tattooist of Auschwitz which manages to do the almost impossible by making a story about a death camp hopeful. Having said that it’s not very well written & really doesn’t live up to the hype. Giving a book about the holocaust a tepid review feels harsh, but there are better books on this topic. Oyinkan Braithwaite’s take on the serial killer genre was a better choice. My Sister, the Serial Killer is creepy and yet almost playful. You know exactly where the story is headed, but you still want to get there. I’m currently digging back into the Patrick Melrose novels. I re read the first two in the series last year and then got sidetracked. Some Hope is probably my favourite of the five. If you haven’t read these St Aubyn classics, you should.

Patrick Melrose novels & the tattooist if auschwitz

My cute little record player was an excellent purchase. It offers distraction on two fronts, great sounding bath soundtracks & an excuse to go rooting in second hand shops for cool records. The latest of which is The Jesus and Mary Chain. Psycho Candy gets me with it’s relaxed trippiness. It is extra beloved for being on the Lost in Translation soundtrack & just thinking about that last kiss in the street makes me smile.

Books & records

Bronan really likes it too. Every time I put a record on he sits right beside it & purrs like mad.

Cat listening to record playing

Back on the digital side I have had one song in particular on repeat. No Pressure by Mahalia just speaks to me. It’s one of those songs that I just adore the cadence of. I was alerted to it’s greatness via Meghan Tonjes’ insta stories. Meghan herself has also been featuring on my Spotify most played list. Her collaboration with Daren on Count Me Out is a sentiment I can get behind.

Mahalia, no pressure

When I have ventured out it has been to see my glorious little people (& their creators) all of whom breathe colour into my life. My littlest monkey had his first birthday this month. My big nephew is going through an adorable dinosaur phase. Madison’s curls just keep getting cuter & my not so little goddess is texting now. She just loves to send her old auntie freaky gifs.

Not sleeping also gives me endless hours to paint my nails. I hate to have bare nails. These have been my February favs.

ly h Kerr Nail Art

Mixed media & preening aside it’s been an equal split between baths and sunsets. Both bring me comfort and earn a 5 star rating.

Sunsets and thigh tattoo in the bath