International Diasbility Day

CW: emetephobia, doctors, appointments, medication, rhuematologists, laser, acupuncture, physio, pain, diagnosis, ableism

It’s disability day and I’m disabled so I have some words to share

I have fibromyalgia, a condition largely characterised by chronic pain, brain fog, fatigue, pain responses to certain sensations, and many more symptoms. The true cause isn’t known but it’s theorised that injury, illness and trauma that occurs before the brain is fully formed at 25ish plays a large part.

And I have the trifecta; pneumonia and many chest infections, three broken bones, three surgeries and some horrible experiences all before I was 21. I started noticing I was really struggling on July 24, 2018, immediately after I arrived in London by myself for I five month trip including time at EdFringe and a uni exchange.

I kept my struggles and needs largely to myself but a few times I couldn’t (and can’t). There was a whole week where my newfound uni friends had to get me to bed and loaned me pillows cause my ribs were so tender they couldn’t rest on the matress. There were ten days where I had to be escorted to the bathroom. I used a lot of money ordering food in and spent a lot on pain killers in those five months.

Then I got home and continued hiding everything from my family. It got harder and harder to manage. Eventually my GP sent me to a “highly recommended” rheumatologist. I spent three hours filling out all the paperwork beforehand the first appointment. After reading my paper work and squeezing my finger joints to check for arthritis he diagnosed me with fibro and sent me home.

I went back a few weeks later to try and get advice and he made me cry four times within half an hour. I left and couldn’t see well enough to drive. The four steps at the front of his clinic that could easily install a ramp should have been a sign that he wasn’t the ideal rheumatologist for me.

So I found a new one who actually cares. It’s hard to find practitioners that actually care about chronically ill people, take us seriously and don’t accuse us of ‘faking’ or ‘drug seeking’.

She put me on a muscle relaxant tablet to try and help my sleep and figured out swimming helps.

And swimming and meds helped until I went overseas again and spent a month working at Edinburgh Fringe. I had a wonderful time but I returned from the most inaccessible city I’ve ever been to a bit worse off health wise. We’re talking constant nausea, vomiting, joint pain, memory loss and twitching. More than my normal symptoms.

So much so that I went back to my good rheumatologist despite hating appointments and we’re investigating arthritis at the moment.

And while that’s happening I’m doing my best. I’m able to leave the house because of the advice of other chronically ill people and the help of my parents. A family friend with endometriosis recommended a functional/integrated GP who’s reduced my vomiting with an appropriate diet and three medications. A friend with fibro, POTS and gastroperisis recommended a laser acupuncture place that has reduced nausea and some pain. And I found a physio how helps with chronic shoulder pain and recognised that my whole body has muscle patterning problems.

I’m incredibly lucky to have parents who can afford to pay for these treatments and investigations. I can’t afford it myself and the reality is that many disabled people who can’t afford help simply go without. The NDIS is hugely underfunded and largely mismanaged.

And this is just one obstacle we face as disabled and chronically ill people. We deal with constant ableism; in public and private spheres, online and in person. Many people are ignorant or misinformed. Some are deliberately violent. Some pity us. There are some able bodied people who have good intentions and want to help, but then assume what help is rather than asking.

And it’s hard to call it out sometimes. Disabled and chronically people get overwhelmed sometimes and just don’t have the energy or words to explain.

So on this International Disability Day I’m sharing for two reasons. One, maybe someone reads this and it sounds familiar so they decide to to seek a diagnosis (whatever that looks like; self diagnosis is valid, especially with appointments being so expensive). Two, maybe an able bodied person reads this and reconsiders their behaviour and starts working to learn more and be a better ally.

My favourite resource for learning is twitter. Some people to follow include: @BlondeHistorian @dominickevans @Tinu @Wheelie_Happy @HamOnWheels @VilissaThompson @painandcats @_sbsmith @bennessb @karriehiggins @ellenfromnowon @EbThen @twitchyspoonie @robinmarceline @PurpleGoddessWA @qjusttheletter @imognerq @JessHealyWalton @Imani_Barbarin @itsmollyeliza @Asher_Wolf @chr0nicallycute @SeeMiaRoll @bedboundbabe @blindandb0ujee @carlyfindlay @DisVisibility @ellle_em @annikavictoria_ @annieelainey @WheelsofSteer @briannasbell @ellenffb @TheLadyFuchsia @jeshyr @MusicElizaHull @MrBrokenEyes @Erinkyan @Keah_Maria @MsRachyDoodle @CaneInPink @OxleyAnnabelle @_Nic_Lee @cubbieberry  @RustyHoe @BeingCharisBlog @UntoNuggan @tommyinboots @marastories @unicornthorn @jilly_peppa @Wooden_MariaGO @MortuaryReport @venusbetch @lizzylynngarcia @rollwiththepunches @4WheelWorkOut @TinyWriterLaura @laurawritesit @jaxjackibrown @jeshyr @JacdenHouting @SnoringDoggo @coffeespoonie @mssinenomine @GHMansfield @BlindFury_5428 @moonyeyed @myceliorum @Lilysea @BlytheByName @jessineave @JessicaOOTC

Obviously it’s a long list but every single one of these people have important things to say, taught me a lot so far and helped me get to the point where I’m proud to be disabled and I don’t hide what I’m going through anymore.

Hacks for maintaining control

Those hacks you see on Facebook and Instagram have nothing on me. Everyone has a hack they swear by, a story of ingenuity they like to share. Some people have more than one, usually people with more stories are those who’ve been forced to make do without all the comforts of home and access to conventional tools. When we travel or move out of home we become veritable mavericks and even if we return home we use the new tricks we’ve learnt, even if only to demonstrate how smart we became.

Without a washing machine I quickly figured out ways to do my laundry without forking out cash at a laundromat. I started by washing my socks in the sink. They take the longest to dry so I rinse them with cold water, fill the sink with warm soapy water and let them soak, drain the sink and take the socks out, put the plug back in, grab some soap (any soap cause soap is soap) and scrub one sock at a time inside and out, drop the soak covered sock into the sink, and repeat until every sock has been scrubbed, then run hot water into the sink until all of the socks are submerged, let them soak, remove the plug, run some cold water over all the socks, squeeze excess water out as I remove them from the sink, then rinse each sock until there is no soap suds left, find a place for them to dry and rinse the sink. After socks I’d do t-shirts and underwear. You’d be amazed how many things you can hang off a bunk bed and locker door. In a hostel I’m vigilant and my paranoia spikes but knowing that I am in control of the cleanliness of my things helps somewhat.

I figured out lots of ways to keep control and do things without spending any money. I can turn a scarf into a bag because I refuse to pay for one. I learnt how to open a can with a spoon from some Russian guy on YouTube, he’d made the video for people preparing for the apocalypse, I watched it because there was no way I was buying a can opener for a hostel in Berlin. That hostel was so shoddy that I cooked an egg on a plate over a candle (much like they did in chitty chitty bang bang) because there was one hot plate for a ten-story building where seven school groups and five soccer teams were staying and I was impatient.

When I moved from hostels to uni accommodation I joined a team of students on shoe string budgets and we started to learn more hacks than I can remember (I actually asked them to send me hacks we used and there were things I’d forgotten). I turned corks into doorstops and they were taken by maintenance because you’re not allowed to keep fire doors open in the UK. Because I’m not healthy and strong enough to open the heavy fire doors I then used an actual doorstop, when maintenance took that I used a plastic spoon and a bottle opener as a door stop, when the plastic broke I started to use my walking stick. At that point I think maintenance recognised I needed the door open and they stopped removing my doorstop.

I watched Caris make coffee in a bowl and then filter it through a tea towel because the French Press wasn’t available. Lauren, Mie and I used freezer bags as piping bags when making mini meringues. We used a water bottle as a rolling pin to make a pumpkin pie and blueberry turnovers. I used a whisk to mash some potatoes because our potato masher was stuck behind the broken oven. Lauren used hand soap to do her dishes, soap is soap. For our Christmas dinner we ate in the corridor off the top of our food boxes because 15 people wouldn’t fit around the eight-person table.

Lauren and I went through the glass recycling bin and found three shot glasses, one cup, a mason jar and two glass dishes that were the perfect size for mini crumbles. When I ran out of jars for the jam and pasta sauce and marmalade I made I returned to the glass recycling bin. I wanted all my flatmates to learn the value of taking all the free things they can because free stuff will always be useful at some point. Everyone knows the value of tote bags, I now know they can replace draws and be used as a delicate bag in the wash. A tube that had lollies in it was rescued from recycling so I could put my knitting in it. One of the cups I got at the welcome tent in o-week was a pen cup then a place for spare change before it held all of my magnets so they wouldn’t be crushed in my bag.

On the way home Caris, Ethie and I had too much stuff and not enough space in our bags so we all got a shit tonne of vacuum bags and hoped and prayed and sat on each others suitcases till they shut. I had two bags and one had to be posted back, instead of paying to get it shrink wrapped I bought a roll of glad wrap and used a pub table to turn the bag around on while I wrapped it myself. I was a bit worried a custom dog might smell the beer from the table top on my bag but I posted it anyway.

I’m home now (and so’s my bag) but I still make up ways to do things unconventionally, maybe because it lets me pretend I’m still travelling, maybe because I need to make things accessible, maybe because it reminds me of the weird things my friends and I did and maybe because it lets me feel like I’m in control of something cool, something other people might marvel at. 

First Post

The first post card I ever recieved was from Nanna Mac. It was written in beautiful flowing cursive which my mum and dad had to help me decipher; I was eight and still using a pencil to write block letters.

The card was from Bunderburg and Nanna had written about her trip to the brewery, how suger can is harvested and the average rainfall whilst she had been there. I still learn more about average rainfall from Nanna than I do from the news. She visits Queensland every winter and I always look forward to a post card.

Nannas post cards always teach me something about the history of a place. I always wanted to learn from Nanna, and she was always a wonderful teacher. She taught me how to read music, play piano, knit, mend a button hole and replace a button, bake scones and sponge cakes, to put sugar on top of my strawberries, and how to drive. And she taught me that all of these skills and hobbies are also a way to communicate.

A way to say ‘I love you’ without words. Nanna is not bad with words she’s just better at playing music, baking, knitting, sewing, leafing through photo albums and hugging. She has told me to be careful, get home safe, do well in school, be on time, stay warm, eat well, take a breath, listen, move, resist, recover, rest, soften and communicate without uttering a word. Some things don’t need to be said allowed to be important.

But even knowing this I still constantly have words in mind. Ready to say because I’ve overthought and rehearsed plenty of interactions. And when the words are too much I write them all down so that maybe I’ll have a chance to sleep.

And sometimes I write them all down on postcards. Sometimes I write down things that I’d never say in person. Sometimes I address the postcard before I write on it, sometimes I only know where to send it after its written. I am still trying to figure out why that is but the mystery doesn’t bother me enough to stop the words.

So I write. I write to friends and family and my partner, I write to the post officer, I write to buildings with strangers, I write to have something to do on the train, I write to get those messages on facebook saying “i just got your post card and it made my day”, I write so that someone can hide my words away and just look at the picture, I write to show people that I may be incredibly unwell but I’m still holding the pen.

I write the words and decide to send them away, always taking a photo because the words can leave my head but I still want a way to show they’re mine.  They are a journal entries that I’m scattering around the world.

I write to say thank you to Nanna for teaching me about words.

I know they aren’t the only way to communicate but I still want to be good at them. If thats possible.