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.