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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You make me sick..

Chronic illness is a shit show. Sometimes literally. Which is thing a that often goes unmentioned. Beyond the pain, being incapacitated & generally hindered in life there is the embarrassment factor. Believe me, that’s no small thing.

Disability brings many embarrassments. Perhaps most notably, for me, is the discarding of a layer of delicacy that I cherished. I am not by nature a person who cares to discuss certain bodily functions. I don’t find toilet humour funny. I don’t need the details of your bathroom trip. I have weird anxieties about toilets/bathrooms that are not my own. I’ll hold a pee for ten hours because the toilets in the bar aren’t spotless or because I saw a hair in your bathroom. A pee used to be the absolute limit of what I would even consider doing in toilet outside my own house. Now, I long for the time when I could reject toilets willy nilly & only go in the privacy of my home. Those were the days.

These days I always need to know where the nearest ladies is. Often I can’t leave the house because I cannot be more than a few feet from my bathroom. If I go out the choice of where & when I deign to use the facilities is no longer mine. My stomach now reigns supreme. It’s not a benevolent ruler. IBD has put paid to any friendly relations between myself & my digestive system. Throw in a hiatal hernia, GERD, anxiety & fibromyalgia and you have the making of all out war. In short, my digestive tract rarely behaves. Whether it’s vomiting, diarrhoea or constipation it’s always up to no good.

Sick emoji

Now, along with cramps & heartburn & nausea & wind & reflux & horrible, horrible pain I get to deal with the crippling embarrassment. I have to worry that the public toilet will be packed when my stomach is in distress. I panic that I won’t get off the bus in time to not ruin everyone’s day with the smell of my vomit. I have to use friend’s bathrooms & worry if I’m taking too long. My boyfriend gets to listen to me throwing my guts up whilst he lies in bed; trust me, it’s not sexy.

I am constantly trying to manage these symptoms in ways that allow me to avoid talking about them. I time eating around when I will be in locations that I can easily to escape to the facilities without drawing too much attention. I’ll avoid eating before car or public transport journeys. Often, I’ll just stay home. At heart I’m still a person who doesn’t want to even allude to any of this stuff. I’ll say I don’t feel great when what I mean is one way or another the contents of my stomach are going explode. I’m embarrassed to talk about it. I’m embarrassed for other people to know much about it. I’m mortified at the thought of it getting worse.

Embarrassed chimpanzee

As hard as I find it I’m now a person who has to do these cringe inducing things ALL THE TIME. I find myself having a near panic attack in a cubicle because maybe people can hear my insides trying to get out. I’m quietly dying whilst Drs question me about my bowels. I am rushing into pubs you usually couldn’t pay me to step into to use toilets worse than the one in trainspotting. It’s awful. I hate every twinge & cramp & wave of nausea; partly because they feel rotten, but mostly because I’m embarrassed.

So, here I am talking about it. I’m hoping if I just put it out there for all to see I can stop freaking out. I know other people experience this stuff & I’d hate to be part of the silence that makes anyone else feel this rubbish. If nothing else perhaps being a bit more open will alleviate some stress, which can only be good for my tum.

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Trigger bang bang…

Anyone who spends any time on social media will have become familiar with the term triggered. Over the last few years it has entered the public lexicon. Unfortunately, it’s meaning has been incorrectly implanted in the public consciousness.

Triggered is actually a psychological term usually related to PTSD. A trigger is an external stimuli that produces a very uncomfortable emotional response; most often panic attacks or flashbacks. However, varied symptoms can result from the triggering of a traumatic memory. It absolutely does not mean offended or hurt. I’m sure most people will have come across the correct explanation of the term. I have certainly witnessed many try to explain why using the term as an insult or a vehicle for mockery is not ok. Yet, the misuse continues. It occurred to me that perhaps what is needed is an accurate representation of what happens when a person with PTSD is triggered. Maybe if people understood the reality they wouldn’t throw the word around so carelessly. So, I thought I would share what triggered means to me.

Whenever I have been pregnant I have been unable to wear my regular perfume. I wear the same scent everyday in life, but some weird olfactory sensitivity means during pregnancy it makes me nauseous. Thus, I change it & the scent I wore I during my first pregnancy is a major trigger for me. Triggers can be anything & no one has any control over what might become one. I experienced a million sights, sounds & sensations during that time, most of them hold little power over me. That scent, though, is potent.

Snow patrol, blue sky

Formidable enough to render me a sobbing wreck. Being taken off guard by that scent whilst shopping forced me to run shaking from a book shop to vomit in the street. All the while struggling to breath & bring myself to the present. A nurse who had too liberally applied the fragrance sent me shuddering back 15 years. Leaving me so panicked I crawled behind a chair & hid. I stayed crouched on the floor desperately trying to claw my way out of the worst day of my life. Completely trapped in my own personal horror film until some kind soul got me some diazepam & did me the kindness of handing it over without questions. That heady aroma has caused nightmares so vivid that I’ve woken myself with my own screams. Dreams so painfully real that I’ve had to keep myself awake for days. Sitting in the company of someone wearing that perfume once contaminated me. On returning home I could not rid myself of the smell. Real or imaginary it lingered until I smashed my hand with a marble pestle. So tortured was I by the memories the scent brought to life that I ploughed that pestle into my hand until I broke two fingers. The cracking of bones a welcome jolt back to the here now.

Diazepam 10mg

Triggers are uncontrollable. It is not within the power of a traumatised person to select what reactivates their trauma. Nor can they choose not respond. Our minds shelter dark territories & they’re all one way roads. Once you’ve slipped in, you have to press on through. Being triggered isn’t a foolish over reaction. Nor is it the hurt feelings of the overly sensitive. It is the raw & brutal reality of those who have dealt with the unimaginable. It’s a battle scar on the brain.

I can’t stop anyone from misappropriating a word. Ignorance abounds. The only tool I have to fight with is honesty. The truth is that trivialising a serious symptom of illness hurts. It stifles the conversation & prevents people seeking help. It makes vulnerable people feel weak & ashamed & stupid.

So, no, I’m not triggered by your cheap dig. I’m just tired of the stigma. Very, very tired.

She’s in fashion…

I think I have that bug everyone has been getting. Or I just have the cold & my stomach is acting up. Either way I am vommy & achey & fevery. Oh & my period is trying to kill my uterus. What I’m saying is I feel shit, which means I’m up at 5am watching absolute trash on tv.

One of the show types I sometimes watch when I need something distracting, but untaxing is next top model. I don’t really care which top model franchise, they all have the same ingredients. Ridiculous tasks, a really cool outsider chick to root for, a total bitch, lots of folk getting way too upset about taking photographs, occasional freaky make up looks & even more occasional actual chubby chick doing really well (they always include a ‘plus size’ contestant these days, but they are very rarely actually plus size & they usually get bumped pronto). I don’t care about modelling, but for some reason I quite like these shows for grumpy insomnia fodder. Thus I found myself watching Britain’s next top model & having all my ‘I’m pissed off’ boxes ticked. There was a really annoying chick who had an awful tattoo of a gun, wore fur & irritated the life out of anyone in her vicinity. Abbey Clancy is getting on my wick & everyone has had a complete breakdown about having their hair dyed. It is the perfect amount of bullshit. I can project all my crankiness onto this pointless tv programme & for some reason it helps.

Then they go & ruin everything by making me rage. It’s getting close to the end, so all the contestants are really having to up their game. They’ve been flown off somewhere hot, hot, hot, stuck in insane costumes & asked to do something near impossible. Just for good measure they are also given an absolute prick of a photographer who proceeds to bully them. Let’s be clear about this set up. Some of these aspiring models are under 18 & away from home for the first time. The photographer is a professional as well as a grown ass man. When one of the girls struggles to deal with the tog & gets upset she is basically told to suck it up. The judges laugh about how this guy is renowned for being difficult & declare that part of the job. Cut to me, fuming.

Why should dealing with what amounts to abusive behaviour just be part of the job? Why are they showing female children being degraded by an adult man & then criticising the child’s professionalism for not being with ok with that?? I know modelling is an industry famous for mistreating it’s young acolytes, but actually watching it played out as entertainment enrages me. A huge portion of the audiences for these shows are young girls. Most of whom are not watching with the cynicism that I am. Lots of those viewers will long to get into modelling or similar industries. Even more will be looking up to super models, celebs & fashion folk who appear on these shows. What are they learning from this type of behaviour? Nothing good.

They’re seeing adult men behave like spoilt children & still be admired by their peers. They’re witnessing female debasement classed as the price you pay for success. They’re watching adult women schooling girls to accept abuse. Before you think I’m overreacting, I’ve spent the last several hours doing a little research. A variation of this scenario happens over & over. Girls are continually ‘tested’ with the difficult photographer, director, go see & the person pushing their buttons is invariably a well respected male industry figure. The lesson to be learned is always that these dickheads have the power & they must take the abuse with a smile. It is sickening.

This is the patriarchy captured on camera. Even though these programmes are fronted by apparently empowered women. Tyra et all are full of inspiring speeches. They purport to be about fierce women forging media careers. There’s lots of feminist lip service, but when it comes down to it, they still teach young women they’re lambs to the slaughter. And, seriously, FUCK THAT.

Fuck that

That girl is strange no question…

It temporarily spring in Glasgow. I say it’s temporary as rain is forecast from 2pm tomorrow until always & forever. Nevertheless it was a beautiful weekend. Unfortunately I missed every second of it because I have been the most nauseous person on the planet. When the sun came out again today, I felt it necessary to capture at least a few blessed rays. Thus despite feeling yuck, I ventured out. 

I’ll be honest though, I didn’t go far. A quick stop at a local park followed by sushi & film was my big adventure. I tried out this new shirt dress & was pleased with both it’s cuteness & comfort. Comfort is a big thing for me at the moment, given that my body has stopped believing in my right to it. 


Dress – Alice & You

The dress was a success, the rest of the night, not so much. The only film showing at the right time was Beauty  & the Beast; it’s shite. Trust me, you don’t need a longer review. Oh & the sushi didn’t even stay in my stomach until the end of the film. You know your film is bad when you’re not even worried about what you’re  missing mid vom. 


I know, my face looks grim in these pics, but look how cute my nails are.