Growing up with Chronic Pain

volkan-olmez-523-unsplash

As I have gained more information about fibromyalgia, I have come to the conclusion that I have most likely had this condition for well over half of my life.  Looking back on my memories, particularly of my early twenties, brings a lot of things into focus.

I was 13 when Harry Potter and the Goblet of Fire was released.  It was released during school holidays.  The family was having a rare shopping day at the local mall – we hadn’t pre-ordered the book (which I was kicking myself for, because I wanted it now), but we bumped into a friend who said the book shop around the corner still had a couple hundred copies, so we ran around the corner and bought one.

When we got home, I began to devour it.  I can’t remember how long it took me to read it, but I do remember lying in bed to read the last bit.  When I had finished the last page, I shut the book, set it to one side, and closed my eyes.  I was woken later to dinner, but didn’t want any – I was feeling quite unwell.  It was maybe a few hours later when I heard Mum talking about calling the neighbour to come over and look at me, as she was a nurse.  Said nurse came over and did a quick once over.  I was then rushed to hospital with suspected meningitis.

I remember the spinal tap.  The nurses were amazing, one of them asked me to tell him about my favourite thing in the world, so I rambled incoherently about Dragon Ball Z.  I don’t remember much else, just bits of being at home, Dad carefully sponging my face down with cold water, and everything hurting.  Especially my head – no pillow was soft enough.  I lost a week in this state.

When I finally came to, I had a two week recovery ahead of me before I began school again, part time.  It was around this time Mum said I began to lie in bed complaining of sore legs.  I remember them aching, throbbing, as I walked myself to and from school (uphill both ways – literally!) with my backpack that ranged between 4 to 15kg.  We went to a podiatrist and bought special inserts for my shoes.  It helped a bit, but still my hips burned.

I took up a part time cleaning job at 15 and regularly wondered why my knees and hips were on fire.  I had heart palpitations to the point where I had a mobile ECG put on for a monitoring period – they didn’t catch any and the doctor condescendingly said we can put you in touch with the psychiatrist.  I said I’d call them later to book a time and never did.

I took horse riding lessons for a few months.  Mum picked me up one day and I said I was sore and didn’t feel well enough to ride.  She drove me all the way out there and told me to get out and ride.  It was only after twenty minutes of crying in the car park that she took me home.

My time through my early twenties, which coincided with my time with It and Thing, was characterised by severe stress and so much pain.  My knees became so painful walking was excruciating.  My lower back was always throbbing, and random parts of my body would just start hurting for no reason.  My right thumb hurt so badly I wouldn’t move it for about three months straight – I went to the doctor and he said “well of course it hurts, you’re always poking it” and that was that.  I’d have to strap fingers together when the knuckles would flare up.

I just started wearing running sneakers with proper support to work, and that enabled me to get around better, although my knees were still incredibly painful.

Then my abdomen began hurting very badly.  It went on for months before I decided I needed to get this looked into, so I went to a doctor who sent me off for ultrasounds.  The ultrasounds came back clear and nothing else was done about it.  Everything still hurt.

I’m lucky, in a way.  I grew up with this pain.  I wasn’t allowed to do anything to alleviate it.  If I was lying in bed complaining about my legs hurting, it was just growing pains, or it was because I wasn’t active enough.  Later, when I raised problems with medical professionals under my own steam, I was told it’s all in my head, or there’s nothing wrong with me so it can’t hurt.  I was never allowed to not do something because of the pain.

So now, in my early thirties, I still do things despite the pain.  I’m not as afraid of triggering it as other people are, because I have had it most of my life.  I barely remember a time when I was not in pain.  I mean, I remember being a very active child – I excelled in martial arts and climbing trees and running and jumping and doing all the things, but it’s too abstract for me to be able to apply it to myself, for me to be able to look at it and go ‘damn I miss those days’, because I don’t remember them well enough.

I’m also really glad to have a diagnosis and to finally be medicated for it, because holy shit does it make a huge difference now.

Frantic Energy

burnout-close-up-composition-626165

Frantic energy is just another manifestation of stress.

For me it displays as a need to fidget, an inability to sit still, twitching my toes, rubbing my fingers together, swinging my legs … some days I decide I’m just going to be completely still and force myself not to move.  Or there are days where I don’t feel like I can move as I need.  They’re the less good days.

Today I’m fidgeting.  It’s windy out, I’ve been having nightmares for the last three nights, I have been sleeping like crap … so I’m all keyed up in a not very good way.

On days like this I don’t allow myself to make any decisions, or go shopping.  I make sure I have movement and fidget outlets and just ride this crap out.  Naps also help.

So does going to sleep at a reasonable hour, which I’m definitely going to try tonight!

Farewell 2018, Hello 2019

anniversary-blast-bright-1573724

It’s the last day of 2018 and I’m awake early, traumatised from my PTSD flashback last night and the subsequent nighmares.  My amazing human being had innocently put on a different show (because it was light and fun) after I had said what show I wanted, and I had spiraled into a panic attack and minor meltdown.  It was one of the first instances where I’ve spoken up and asked for the input to stop, and explained that I’m having a panic attack.

My amazing human being immediately stopped the show, grabbed my hand, and guided my other hand to my cat and stood with me until I was more settled, then provided chocolate.  Unquestioning support.

For me, 2018 has been a year of self discovery, self expression, and healing.  It has been hard, it has been upsetting, in some instances it has been straight up traumatising, but I come out the other end of 2018 a calmer, more balanced, and possibly even more confident person than I began 2018.

I must absolutely credit this back to my phenomenal friends, the closest of which have also (sadly) gone through narcissistic abuse, and who have been open and loving and who have shown me how to be open and compassionate with regards to my own mental health issues.  In one of my oldest friends I have found a role model for how to live with chronic illness, how to go through life unapologetic and dignified with disability, and how to allow yourself to be how and who you are.

In my amazing human being I have unquestioning support and consideration, and unending laughter.  He enables me in all things and throws his enthusiasm behind me, regardless of what direction I take.  He is constantly thinking of ways to make life easier and better, and reminds me that yes, I can do things the easier way, I don’t have to just suck it up and do it the hard way.

Yes, this year has been a hard one, but it has been a good one.  I am still glad to see it go, and look forward to what 2019 brings.

PTSD Flashbacks

art-background-beverage-414720

Today I had a PTSD flashback.  It was the worst PTSD flashback probably since the instance in the hotel lobby.

I smelled cinnamon and nutmeg.  It’s Christmas time, so someone was probably feeling particularly festive.  Or maybe the cafe downstairs was making a lot of things involving cinnamon and nutmeg.  I love cinnamon and nutmeg, I love the smell, I love how festive it feels.

It’s also the smell of chai lattes, as a colleague commented.  And that was the trigger.

My gut dropped and I went numb, my mind had a few seconds of racing then just disconnected.  I kept my breathing even and my face blank – I was at work, no one could know what was going on (this is part of my self preservation mechanism).  I messaged a friend to get it out and then kept on working while everything inside of me screamed.

Fortunately an urgent piece of work came up which allowed me to scoot my wheely chair across the room and then back to my desk, and with (very forced) cheerfulness, I continued with my day.

I’m still shaken.  All through the rest of the afternoon I was shaken and very very carefully maintaining my facade of general competence and cheeriness.  I probably will be for a while.  I had a few things to do this evening and I made the executive decision to ask someone else to cover me (as I cover for her when she needs it) so now I can spend some time properly relaxing.

When a big shock like this happens, it’s very important to implement greater than normal self care measures.  So that’s what I’m doing.

I Am Allowed To Be Burnt Out

burnt-close-up-macro-321550

I am allowed to be burnt out.

For me, this is a radical idea.  The admitting and acceptance of the state of being burnt out, and actually giving myself permission to be burnt out.  To be honest, I think I’ve been burnt out for years, and it finally caught up with me last year.

I am autistic.  From a very early age I was conditioned against expressing that and pressured into appearing neurotypical.  I have, up until this year, put on a facade of a successful, bubbly, vivacious and sociable business woman.  Mostly this appearance was abused into me by It, but it was also expected of me from all of my previous roles.

I have overworked and over performed in every single role I have undertaken.  I would typically arrive at 8am and leave anywhere between 6 and 8pm, having worked through all of my breaks and most of my lunch, always at break-neck speed, because there was so much work to do.  I worked myself ragged, and I went back in and did it all again the next day, because that’s just what you do.  I’ve done this in every role until I moved to my current city, so that’s a good decade or so.

Throughout most of that decade, I was also with It.  The narcissist.  The ending came about because It was becoming desperate, and eventually manipulated Itself into the position of ‘either you come with me or I go alone’.  I was in a position where I was actively pursuing the career I wanted, and I wasn’t prepared to jeopardize the career I had been working for years to be able to pursue, and I was angry that he would ask that of me while putting his own career first (always first).  So I said no.

Then I went straight back to work the next day.  And continued working, and overworking, and not thinking about anything, and putting on the facade of being a lively, successful young businesswoman.

It’s all caught up with me and there is no escaping the exhaustion that I have denied for so long.  I ignored my body at every turn.  When it screamed ‘rest’ I said ‘harden up’ and went to work.  When it said ‘no more, go home’ I said ‘nope, we’ve still got to finish this document pack’ and kept going.  And when I say I worked fast, I mean I worked bloody fast.  I put out more work in one day than most would in three.  My brain was constantly on the go planning my next move, identifying the path to take to complete the required tasks in the shortest amount of time, and in the right priority order.

Oh, and through most of that I was working a second job on weekends and doing one paper a semester at university.

So yeah, I’m allowed to be burnt out now.  I sound defensive, and that’s because I am, because I expect to be told ‘no, you’re not allowed to be burnt out, harden up and keep on going’, because that’s what I’ve basically been told my entire life in various ways.  Stiff upper lip.  Carry on.  That kind of claptrap.  Telling myself I’m allowed to be burnt out is one thing, but taking a stand and saying ‘I AM ALLOWED TO BE BURNT OUT’ to the world is an entirely different kettle of fish.

Because despite the abuse I’ve been through, despite feeling as though I’m brittle and nothing but bone and sinew, despite almost falling asleep at work on numerous occasions because I am so exhausted, I … I gaslight myself.  It’s so ingrained in me, I gaslight myself.  It has been reinforced so thoroughly in my life that I am not important, what I feel is not important, what I want to do is not important, what I don’t want to do is not important, that I can’t possibly imagine that what I’ve been through is … something.  That it’s actually not good, that I’ve been impacted by it and that feeling is valid and true and reasonable.

It’s a horrific mindset, but I’m battling it.  Slowly but surely.  Because I deserve to not be burnt out.