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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My quarantine in pictures…

It probably won’t come as a surprise to learn that I haven’t been developing new skills in lockdown. My novel remains unfinished & my sour dough never got started. I’ve mostly been entertaining myself with much less useful activities.

Internet nonsense has been a fairly good diversion. I’ve killed some time with insta challenges and silly filters. I alarmed my mother with candy floss hair (I’m almost 40 & she still doesn’t want me to touch my ginger locks). I’m a little bit tempted.

Hair day filter candy floss colours

The cosmetics procedure filter was less enticing. This is not a good look. Neither was the art work I produced when. I joined in on one of those Instagram tags. It was rather pleasing to do, though.

Pencil sketch of house plants

The pillow challenge was a bit more successful & even more fun.

Plus size women  naked apart from teal pillow

I’ve done a fair bit of online shopping. Mostly treats for little ones, but the odd random item for myself too. I seem to be more easily influenced during lockdown. I baked more biscuits than I could eat. Got this gorgeous digital portrait oh my niece & I to add to my wall art.

Digital portrait and photographs on wall

I’ve made a million video calls. Tonnes of Hi jinks with the the kids. Cocktails & gabbing with adults. I’ve done foot peels & face masks. Organised sock drawers, finally arranged my photos into albums & listened to podcasts galore. I even had socially distanced picnic lunch in the driveway.

FaceTime of toddler in ball tunnel
Video  call with two faces in lemonade filter
Video call with dragon filter

Basically I’m trying to defeat cabin fever & stay sane. The fact my darling sister talked me into learning a tik tok dance questions if I’ve managed it.

Two women doing tik tok dance on summer dresses

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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.