There was more than one lobster at the birth of Jesus?

Curtis, R. (Director). (2003). Love Actually [film]. Universal Pictures.

This Christmas, I want to be a kid again. Just for tonight.

Don’t get me wrong, I of course know that I am a child. But that categorisation hardly applies anymore. I grew up the moment that I memorised my prescribed medications and dosages. The moment I became far more familiar with my vulva than any child should have to become. The moment that my childhood turned from Disney laugh tracks to emergency department screams.

For tonight, I wish to be a kid.

I wish to go to sleep tingling with excitement. I wish to wake up as early as possible and examine every gift under the tree. I wish to jump on my family, so we can all open gifts together. I wish to spend the day with my siblings and cousins – trying to understand all the new gadgets and gizmos aplenty. Mostly I wish to be well and spend the day with those I love.

As I write this, I am curled up on the couch with heat packs and hydration and am watching the Christmas cinematic masterpiece that is Love Actually. I’ve spent the day vomiting and clutching a rigid abdomen and raging head… just your average Christmas Eve. I think though that Colin Firth and Emma Thompson are certainly improving a decidedly crappy day. My body feels like a medieval torture device sent by the Grinch himself before his heart grew three sizes. However, while to me it is a form of torture, I also consider it a gift.

It allows me to recognise that I have a roof over my head, and people to share it with. I urge everyone reading this to consider whether you have shelter, family and friends, or health. If you have any or all of these this Christmas, acknowledge that. Still, it’s okay to be sad if you don’t have it all. Everyone needs to feel sad; it can’t forever be ignored. If you are without a home, people, or good health during this holiday season, I am sending my love. I encourage everyone this year to look around and give a little. Most of you are very lucky. And it’s okay if you don’t have anything to give this year, perhaps all you need to do is be thankful for what you do have. That is my challenge this year.

So finally, I again say, this year on Christmas I wish to be a kid.

While I can’t make this wish come true, I can try my best to fulfill it at least a bit. Tonight, I will curl into a freshly made bed and squeeze a teddy bear and hope that tomorrow I can feel that joy once again. To all my adults and children alike out there, I wish you all experience the joy of Christmas the way you do when you’re young. Make some warm cocoa; read Christmas stories; and watch your favourite Christmas film. Be a kid for tonight.

Happy holidays to all and to all a good night… enjoy this video of Hugh Grant as the Dancing Prime Minister.

Thai food, feminist prose and angry girl music of the indie rock persuasion.

Junger, G. (Director). (1999). 10 Things I Hate About You [Film]. Touchstone Pictures.

Fuck you.

I say this wholeheartedly and in complete sureness, fuck you. It’s because of you that I am stuck, while I watch everyone, I give a damn about move on with their lives. They go out and they celebrate while I’m vomiting in the toilet or can’t get out of bed. While they are going to school together and joining clubs, I am busting my ass trying to complete the bare minimum of work in a constant state of brain fog and underlying pain, without flares. They go out and get part-time jobs while I show up at the children’s hospital once a month for consumer engagement groups. They drink and take illicit substances – I sort through the overwhelming amount of prescriptions. They sleep through the night and I wake up screaming and scratching at my abdomen.

I want to say that you stole my childhood and consumed my life, but it’s not that simple. You are all I’ve ever known. I hate that you are my life. You are me. That you’re the reason I was three days old for my first catheter. The first time some foreign object was inserted into me. That you’re the reason my early years consisted of electrical therapies and endless streams of penicillin and sheets soaked in urine and sweat. You morphed my bedroom walls painted with butterflies into the hospital curtains, and you hid in the shadows behind each one. At eleven my parents settled to split, so while they were sorting that – I was curled in a hospital bed and you took over my life. Infections became constant. I needed surgery. For my birthday at post-surgical twelve, you gifted me with incontinence, intermittent catheters, hypersensitive nerves, and so many drugs. Lost a few years to this until I readjusted to my new normal. And then once again you shot me down. Fifteen and sixteen were met with more invasive treatments – vaginal exams, balloon catheters, interferential, and TENS therapies. And you introduced me to some of your friends. Now there’s a whole gang of you – neurogenic bladder, chronic pain syndrome and vulvodynia, and severe depression and anxiety. You guys are my life. You consume me. I can say it now. 

Going back to the surgery, they cut me open and discovered you did a lot more damage. My elongated urethra wrapped around and compressed my organs; my ureters and urethra were dilated so much so that they no longer connected to my bladder; my bladder was as hard as a baseball and forming pockets of air and urine. The stent insertion transformed into a bladder reconstruction and more. Doctors cut me up and put me back together. Sometimes it’s hard to see whether it was good or bad. The surgery meant that for the rest of my life I will be reliant on medications and catheters and will forever be attacked by you. Though I suppose there was always a chance of that.

I still sometimes wake up in the middle of the night clutching at my abdomen. It’s an entirely terrifying experience to have someone inside of you – even more so when you wake up and everything has changed. I was paralysed from my waist down and had tubes and wires coming out of almost every part of my body. No one talks about medical trauma. No one told me I would scream whenever someone woke me up. No one told me that my body would remember the pain. Remember every part except those periods when everything is blacked out because of all the pills. No one told me I would have a panic attack whenever I entered a bathroom. No one told me the pain would never go away. No one told me I’d be stuck with you forever.

You left me immobile for a year or two – that period is kind of fuzzy. I remember the constant pain, you repeatedly dragging rusty daggers down my back on both sides parallel to the spine. It’s not a feeling I can forget. I remember the complete fatigue you caused me; at my primary school graduation and confirmation, I didn’t have enough strength to hold up my head. My parents worked as a neck brace and caught me when I collapsed. You stole my appetite. I never ate. Started to look like a bag of bones and a ghost of my past self.

Now at sixteen, I’ve only recently been allowed the privilege of bodily autonomy. You’re still there, dictating my every move. But I understand you better now, and as a result, I understand the best and worst parts of myself. Just when I am supposed to be experimenting and well, be a teenager! You too have stolen that right. Not only can I not try these things, but I also can’t even complete my treatments. Every time I try you stab me from the outside in. What is supposed to be the most private part of myself is being constantly attacked by you. You dictate the clothes I wear, the treatments I conduct, and the pleasure I experience. You disgust me.

When you first showed up, people cared. They visited me in the hospital and sent flowers. But when you didn’t stop, when you kept making me sicker, when you forced me into hospitals, when my medical notes started to exceed the binder, people stopped caring and stopped sending flowers. When you were the only part of me, when I was at my very worst – doped out on pain meds, unable to move, barely able to think – I can only recall one or two friends who still cared. And though they cared, they couldn’t understand. Nowadays people try to be more understanding, but they don’t get it. They don’t understand what you do to me. They don’t understand that most days getting out of bed is a marathon. That I need clean facilities for treatments if we’re going out because otherwise, I risk further infection. That every minute of every day I am in pain. That a pat on the back is probably going to make me scream. That their successes are my losses. I am happy for all of their successes, but I can’t celebrate with them. They’re graduating? I just dropped out. They’re celebrating? I can’t move. I am happy for them, but you are always there for me. You have single-handedly isolated me from every person I’ve cared about at some point. You make me sick. And it does hurt to watch the world move on without me.

You have been the single most influential part of my life. You made me who I am today. You have traumatised me and have left me isolated from just about everybody in this world.

I am sick. Not dying. Just sick. So, fuck you.

Sincerely,

Your reluctant captive

You’re going to go on living. Because living is the challenge, Josie.

Marchetta, M. (1992). Looking For Albrandi. Penguin Books.

I started writing this entry a few months ago before the pandemic became a pandemic. We now have a new generation of quaranteens and an even more unhealthy addiction to Netflix. Everyone is struggling in this trying time. Despite how difficult it is to see, this will end. It’s not permanent and I take solace in that. Permanence is a terrifying reality. People have suggested I write about the current COVID-19 crisis, but I’ve been struggling with my issues too and couldn’t find what to say. I have faith this will end, and while the impacts will continue long after the conclusion, we still will be able to deal with what comes. At the moment we need to look out for each other, from a distance of course. Acknowledge that some people are more at risk, and we mustn’t further that risk. Thank you, for doing your part, whether it’s simply staying at home, or working on the frontlines of the pandemic.

I can’t provide any wise insights on how to cope with this. Everyone has their own ways and you’ll discover it yourself. Understand that everyone is experiencing this, and take solace in knowing that you aren’t alone. I will share the entry I wrote a while ago, simply because I want to share it.

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I just said to my friend that I was trying to write but life got in the way. And it did. Does. But I don’t want to use that excuse anymore. Life is difficult. So very difficult and I could rattle on and on about how difficult my life is, but no one wants to hear the plot to a depressing telenovela. So instead I say my health has been lacking, and with it went my drive. In the past few months, I’ve been in and out of the hospital, trialling new treatments and hunting for hand sanitiser. Unfortunately, when health is being particularly troublesome, you can’t hit the pause button on everything else. I’m drowning in missed schoolwork, assessments, and exams. I’ve not seen my friends in so long. I can’t maintain my relationships or my quality of life. But hey, at least we still have some toilet paper.

Let’s talk a bit about the last hospital stay. I was in the hospital for a week. UTI with debris in the bladder and kidneys. This was a tricky bug, not the kind where you can go to the GP, grab a prescription and be on your merry little way, the kind where you wait for hours in the fluorescent lights of the ED just wishing you had a way to cut out all the screaming children and piercing pain in your temple. In hindsight this wait wasn’t as bad as usual, after a day there, I was admitted, it’s not always that quick.

The teen ward. A fascinating place really. To me it feels like some people stay there so long it’s like they become ghosts of their former selves… until you come across someone who can still manage a smile that lights up the room. In any case, it remains a hospital. People don’t often stay there for more than a few days unless it’s a long-term illness. To some, the hospital is home. The patients have their own community and the staff becomes their family.

Do you have a person? A Meredith to your Christina? Perhaps a Lorelai to your Rory? A Toretto to your O’Connor? I have a person. This person wheeled me around in a wheelchair, unbothered by my catheter bag which I am fairly certain was in direct vision… oops TMI? This person stayed after visiting hours so we could mould terrible clay creations in Livewire. This person skipped school so they could come and sit in a hospital bed. They sat by my side in the hospital cot and didn’t once complain about the wires and tubes that were coming out of me from every which direction and surrounding them like tangled headphones. This person is my person. This person is the food to my Joey.

This person and I were sitting on the bed playing SkipBo when entered the pain specialist. The pain doctor, because I – guys, gals, and non-binary pals – have been in never-ceasing pain for over five years. Yay team! I contracted chronic pain after major reconstructive surgery and a series of infections, it may not seem like much, but the effects can be debilitating. There are of course those days where I’m prepared to go to a concert and get squashed in a mosh pit; smol bean life. But some days the pain is so bad I can’t walk, can’t breathe, just can’t. This day was the latter. This week was the latter. In walked the doctor and after that initial awkward greeting experienced by many a doctor and patient, he dealt himself into the game. While playing, we discussed all the medical gibberish. It’s a smart technique surprisingly, it relieves the pressure of a doctor’s interrogation. We went through all the basics. Have you eaten? What level is your pain at? He had many questions to sift through, and I had a single one.

Will the pain ever go away?

My voice broke amidst asking the question. The doctor looked down in response. He’d heard this question before. He knew what I wanted to hear. He couldn’t say what I wanted to hear. I almost cried but didn’t. Crying would be admitting that it was real. And it couldn’t be. Crying would mean that my person would cry too. That would escalate everything and next thing you know we’ve flooded the hospital. Who wants their person to cry?

The issue with this question is that you can’t get a straight answer. Doctors can’t promise healing. They can prescribe meds, suggest treatments. They can’t promise healing. In response to this question, well he basically said that, just more doctorly. This to me was earth-shattering. It is an impossible task to every day, live as if you remember how it feels to be so blissfully painless. Many can understand this, and others cannot begin to comprehend the hardships experienced. All I know is that at that moment, there was a single word circulating my head. Permanent. And that is terrifying.

Since the hospital, this conversation has taken a toll on me. I’m just so damn tired. And the pain is still there. And that’s scary. But I’m trying. Some days there seems no hope. Some days its better. Maybe it’s why I’ve been avoiding writing.

To everyone who is trying, keep trying. I am too. We’ll get there someday. Wherever ‘there’ is.

Almost there.

Almost.

P.S. thank you, my person, and to everyone else, go thank your persons.

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Please note that this text isn’t a representation of COVID-19, I wrote this when I was struggling with unrelated issues. My problems are minuscule now, but they’re still there and still problems. I’m still struggling and I’m still trying. I know everyone is struggling with the world’s problems as well as their own but you gotta keep going. Keep talking to your person. Keep some degree of normalcy. Have some fun. It will get better.

Most importantly, binge all da Netflix baby.

References:

Home. (n.d.). Retrieved from https://livewire.org.au/?gclid=CjwKCAjw1v_0BRAkEiwALFkj5txVLGcDXQKh2R_D2oAlkjfkQF6WMQW2Ux6iyiyvxK-4YTQ5-2QaSBoCMpMQAvD_BwE

Gilmore Girls. (2000, October 5). Retrieved from https://www.imdb.com/title/tt0238784/?ref_=fn_al_tt_1

The Fast and the Furious. (2001, June 22). Retrieved from https://www.imdb.com/title/tt0232500/

Grey’s Anatomy. (2005, March 27). Retrieved from https://www.imdb.com/title/tt0413573/

Warner Bros. TV. (2017, February 7). Joey Tribiana + Food . Retrieved from https://www.youtube.com/watch?v=mTLzbqun7lI

Australian Government Department of Health. (2020, April 22). Coronavirus (COVID-19) health alert. Retrieved from https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert

“I’m on drugs,” Reagan said. “They’re a beautiful thing.”

Rowell, R. (2013). Fangirl. St. Martin’s Press.

So right now, I’m in Perth Children’s Hospital, treating my soul with Spongebob Squarepants and my infection with IV antibiotics and fluids. I also happen to be “higher than a kite on steroids” thanks to some very nice painkillers. I’m telling you this so you can excuse the writing in case it’s as absurd as Lorelai’s “monkey monkey underpants” fit. We are, as they say, rolling with the punches… plus Dad wanted to laugh at me while I try to articulate anything when my brains a big ball of fuzz and I may be drooling…

Try as we might to stay out of the hospital, practising all the prophylactics (not to be confused with condoms as my friend so blatantly points out) and being on a first-name basis with your General Practitioner, we always come back eventually. That’s when you gotta wrap your head around the dos and don’ts of hospital stays.

Hot tips for hacking the hospital handicap:

1.    BYO Biscuits

Let’s be honest here, hospital food always seems to have the exact opposite effect of treatment. Instead of an apple a day to keep the doctor away, you get wholemeal toast that resembles Chinese Fighting Muffins. In complete fairness, often the food is good but when you’re admitted the sight any food can make you want to vomit. Everyone has their comfort foods or sick foods, so this is where we introduce the BYO Biscuits law. Instead of trying to down something that is the definition of unappealing, take advantage of Uber Eats and the parentals. Order in your exact cravings because something is better than nothing, and always have the emergency biccies on hand. Keep in mind the ward’s rules and other patients, as well as your diet, unfortunately, you can’t always eat whatever. Also, kudos to the chefs, it’s a difficult job catering to so many and, well, sorry for trash-talking you.

2.    Sweater Weather

Grab your oversized sweatshirts and those trackie dacks you wouldn’t be caught wearing anywhere but the servo during crackhead hours. Hospitals in general are cold, but the wards are penguin habitats and suitable to freeze Captain America for about 70 years. Seriously it’s cold, ask for extra blankets and wear warm clothes. I’m under four blankets and wearing long pants and a jumper and still shivering. It is, however, important to note that I have an infection, and to fight infections often the body shivers, increasing the body’s temperature to essentially cook the infection. If you’re hardcore, I expect to see beanies, mittens, scarves, and uggies! For bonus points, if you have a significant other, steal the hoodies! See just cover all skin and you’re set for a trip to Antarctica… I mean the hospital…

3.    Dreadlock Holiday

You know when you fall asleep on the couch and wake up and your hair looks like it’s been attacked by a helium balloon? Well imagine that but ten times worse and bingo you’ve got yourself hospital hair. You are essentially in a bed for most of your stay, and just rolling around like a cat rolling about in catnip. Now, this can be great for finding your Sheldon spot, but it can mess with your hair to the extreme where you’ve unwillingly created dreadlocks. I once had hospital hair so bad the entirety of it below my shoulders was just a knot. When released we went straight to the salon for the full treatment… the usual shampoo and conditioning… and the cutting off of everything below my shoulders. To prevent dreadlock deadlock, I recommend you take haircare seriously. Pack all the necessities and brush and redo it on the daily for some “fully sick” hairstyles. And the avoidance of rat nests over blondie-locks.

4.    Daily Dettol

I’m going to be blunt, you’re in bed for days, you haven’t showered, YOU SMELL! It can be difficult to bathe yourself, especially when you’re all doped up, but you should always try to keep up your personal hygiene. The bathrooms have seats if you’re not strong enough to stand and parents and nurses can offer their help too. You need help sometimes and that’s perfectly okay, especially when it means you will smell less like Shrek. If a shower is too far a fantasy, I always go to the hospital with some baby wipes on hand, a quick and easy way to feel clean, using minimal energy. Always brusha brusha brusha, bad breath can kill, especially when it’s combined with dehydration (anyone else get bad breath when they’re dehydrated, just me? Yeah okay cool). Always wash your hands and use hand sanitiser as it’s a hospital, you’re germy, it’s germy, just a good idea to stay sanitised. Let your inner germaphobe run wild or move into the trash can like Oscar the Grouch.

5.    Boots & Backpack

Whether it’s an emergency or a referral, always go to the hospital prepared. Call out for Dora’s Backpack before you leave the house and ensure you have everything you predict you’ll need. My must-haves include a hairbrush, change of clothes – especially warm socks, charger, phone, laptop, book, toothbrush and toothpaste, deodorant and baby wipes. Now it’s not the end of the world if you forget this stuff but it sure does make it easier than relying on parents to go back and forth hunting and gathering. None of these things are completely necessary, they just make your stay easier, especially when you’re still unsure about whether it is a stay. There are also things that your ward can provide if you’ve forgotten it however it’s always better for your comfort if you pack things that will make you comfortable, i.e. the plush toy you’ve had since you were three but is more like rags and some string at this point. And don’t forget the essentials to prevent death by boredom!

Hospital stays can be scary, but they can be made better. Don’t forget the hospital hacks: BYO Biscuits, Sweater Weather, Dreadlock Holiday, Daily Dettol and Boots & Backpack… all of these things are designed to make you more comfortable. It’s also super important to become familiarised with your hospital, locate the fun floor (if there is one), the nice nurses and most importantly, the edible food. The hospital doesn’t have to be terrible. So long as there’s no pea underneath your mattress, you should survive yet another stay.

References:

10ccVEVO. (2016, 20 September). 10cc – Dreadlock Holiday (Official Video). Retrieved from https://www.youtube.com/watch?v=fUNTk5xsxk4

Dora the Explorer. (2000, August 14). Retrieved from

https://www.imdb.com/title/tt0235917/?ref_=fn_al_tt_2

jdanddpt. (2015, 10 June). Gilmore Girls – monkey monkey underpants. Retrieved from https://www.youtube.com/watch?v=Ula6EzP0cPY

jumbalare. (2008, 12 November). Grease – Jan sings the brush up song. Retrieved from https://www.youtube.com/watch?v=SFAwSqK3SdQ

Movieclips. (2012, 12 September). Charlie’s Angels (1/8) Movie CLIP – Chinese Fighting Muffin (2000) HD. Retrieved from https://www.youtube.com/watch?v=xvf–4i6NA0

Sesame Street. (1969, July 21). Retrieved from https://www.imdb.com/title/tt0063951/

Shrek. (2001, May 18). Retrieved from https://www.imdb.com/title/tt0126029/

SpongeBob SquarePants. (1999, April 30). Retrieved from https://www.imdb.com/title/tt0206512/

Zarhejo. (2008, 7 October). The Big Bang Theory – Episode 1 (Pilot). Sheldon’s sitting spot. Retrieved from https://www.youtube.com/watch?v=l2hIIvF5gJI

These books gave Matilda a hopeful and comforting message: You are not alone.

Dahl, R. (1988). Matilda. Jonathon Cape

It’s back to school season and you know what that means, nurse visits, backaches and sick days galore! Time to jump onto the back of the garbage truck and sing “Good Morning Baltimore.” Let’s be honest; getting your tired ass outta bed every morning somewhere between five and seven AM is the definition of struggle. So, take that and add illness, plus an insurmountable amount of catch up work, on top of regular work. Now I know, I know, math ew. But the answer to that equation is a chronically ill child, who becomes even more sick than usual. As I’m writing this, we’ve been at school for exactly seven days, however, I’ve been there for only four. Like I said, sick days galore!

For me, and chronically ill youth, school is a bit trickier. Instead of a back to school picture, mum took a back to the doctor’s picture. Recording the first infection of the school year with a picture of me holding a prescription and sample. Just the other day, I had a conversation with a previous teacher, and he was saying he warned a current teacher that I often fall asleep in class. And to let me sleep because I need it had probably had a tough night health-wise or maybe currently have an infection. Now, this gave me a hell of a laugh, considering I just came from Math class… where I slept through about half the class. Honestly staying awake through the entirety of a lesson, even an exciting one (not often math) is more difficult than finding Wally in a sea of red and white stripes.

School, including transport there and back, can take anywhere from eight to nine hours. Our grade gets about four hours of homework every day and I still have to dedicate about two hours for treatment and such. Then, of course, there’s another two hours for the basic animalistic habits, feeding, and grooming. Could’ve just said eating and showering but hey, I’m weird. Now I wouldn’t trust my math here but that simply doesn’t add up. That’s around seventeen hours of guaranteed work. With twenty-four hours in a day, it’s too much. I can hardly achieve my needed twenty-two-hour koala coma. Trying to do all of it, I get sick. It’s simply too much.

Taking it back to the Spoon Theory, you only have your set number of spoons, you can only complete what your body warrants, you need to make cuts. Decide what is important to do and what you can. This in the long term, however, gets a bit more complicated. The missed work and assessments start to pile up. That absentee rate at a constant rise. When you’re not at school, it makes it harder to get back. When you’re constantly behind, it makes it harder to keep up. This is where you decide to go Gilmore… but which Gilmore Girl?

You could attempt an Emily Gilmore, where you essentially ignore the issue and still are stuck on those high standards and expectations. You may attempt to push your limits in meeting those high standards and while it may work in the short term, you’re likely to burn out in a matter of days. This essentially doesn’t factor in the illness thus losing more energy rapidly. I’m going to be blunt, it’s stupid. You are less able than the regular student and while sometimes it means doing more, sometimes it means accepting that you can’t do the same. Putting in 110% means chipping into the next day’s energy. This is a self-destructive decision. Essentially making you sick. Consider swapping those three cups of coffee with herbal tea… or some homemade twinkies?

The next option is Lorelai Gilmore. Now I don’t recommend teen pregnancy, – hey no hate – but the premise remains the same in that she wasn’t physically able to continue, so after trying she stopped her schooling. For the chronically ill, sometimes you just can’t get to school, and that’s okay. You can try with all your might but if your body simply isn’t allowing it, then it may be time to listen. School is a lot of pressure and a lot of work. While it may not seem as demanding a task as I’m making it out to be, imagine all week trying to go about your day, never once dropping that heavy backpack, not even being able to adjust the strap. That’s what it’s like for someone with chronic illness. School for everyone has mental ramifications, but for the chronically ill it also has physical ones in which can be immobilising. Take a break. Lay out a feast. Watch Willy Wonka and the Chocolate Factory. And remember, Lorelai went back to school when she was able to, stopping doesn’t have to permanent unless you want it to be.

The final Gilmore Girl is of course Rory. Rory who is determined and smart and loves to smell books. Who started a new school months behind and made it all up. Sometimes when you’re ill and struggling with school, it isn’t education in general, it could be that particular school. The curriculum is too advanced, the school is on a hill, it simply doesn’t cater to your needs. This may mean you should look at the particular school you’re studying at, is it the right fit?

Then there’s the art we’re all familiar with, catch up. I’m pretty sure over half my high school career has been spent catching up. I drown in the missed lessons, assessments, homework, everything. When you are sick, you fall behind. The workload can become too much in the second you needed to leave class for painkillers. If this is the case, well, why not pull a Rory? The life of a book sniffer may not seem all that enviable, but she put in enough work to catch up. Catching up is possible. While being sick, you may not be able to put in all your effort, but anything is better than nothing. And not everything is of importance. 

Do you remember Amelia? The Stranger Things embodiment and another fun fact, an avid Fortniter. When asked happened to her education when she got sick, this was her response: “When I first got sick my school at the time was really understanding and they did the best they could to help me manage my education. But just because it’s a sort of specialty school, obviously we had to seek other options. We looked at different types of schools but the one that I’m doing now is just a TAFE course for six months. It gets me my year eleven education and that’s all from home.” In this process, Amelia pulled both a Lorelai and a Rory. She tried her options. Didn’t succeed for a while. Then she did. She is now getting an education without risking her health. Personally, I think there is nothing more impressive than that.

Being sick and going to school isn’t a given. It can be wanted, not guaranteed. You can try and still fail but then it’s up to you to try again. My mum says, “we’re sick, we have to try a bit harder than everyone else.” I say “I am sick, sometimes I have to try harder than everyone else, sometimes I can’t try as hard as everyone else. I am sick and I try.”.

References:

Australian Koala Foundation. (n.d.). Retrieved from https://www.savethekoala.com/about-koalas/frequently-asked-questions

But You Don’t Look Sick? The Spoon Theory. [PDF File]. Retrieved from https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

Gilmore Girls. (2000, October 5). Retrieved from https://www.imdb.com/title/tt0238784/

hairspraysongs. (2007, December 30). Retrieved February 12, 2020, from https://www.youtube.com/watch?v=FjjWJEeVpBw

Stranger Things. (2016, July 15). Retrieved from https://www.imdb.com/title/tt4574334/

Willy Wonka & the Chocolate Factory. (1971, June 30). Retrieved from https://www.imdb.com/title/tt0067992/

The term chronic pain captures nothing of the grinding, constant, ceaseless, inescapable hurt. And the term crazy arrives at us with none of the terror and worry you live with. Nor do either of those terms connote the courage people in such pains exemplify…

Green, J. (2017). Turtles All the Way Down. Penguin Books.

At a certain point, doctor hopping should be considered an Olympic Sport. You go from appointment to appointment, specialist to specialist, test to test. It’s gruelling. I can’t imagine the pressure of an Olympic athlete; however, I can personally attest to the toll of practising every technique until you find the right one as its similar to that of trying every technique to get answers or every treatment to get results. For athletes however they can land on the final result much faster, for us it takes a while. Diagnosing is a waiting game that seems to never end. And my God it’s exhausting. As is just about everything to do with chronic illness. Already having impaired physical capabilities, we have to meet new doctors every other day and while they poke and prod you, they provide even more referrals so another person can do it. When you’re struggling to walk to the mailbox daily, making it through days, weeks, months and years of examinations and treatments and tests and every other word to do with hospitals I can think of, for the chronically ill, is the equivalent to that of Cory and Topanga not living happily ever after. It’s impossible.

After that first severe hospitalisation, it seemed my body never recovered. The first kidney infection was around the conclusion of 2015. The infections that followed decided to frequent every two to three weeks. It’s not a good thing when you socialise more with your nurse than you do with friends. It’s not a good thing when you memorise the opening hours of the Starlight Room but can’t recite your times tables. It’s not a good thing when you have access to Radio Lollipop but don’t have enough reception for a Poké-stop. Nothing about that time was good. At least not my previous level of good. Like Passenger always says, “you only know you love her when you let her go,” ‘her’ being Pokémon Go obviously.

As you can imagine, this was a very difficult time. Princess Margaret Hospital became more of a home than well, home. There’s this period any sick person goes through where they are constantly ill, but don’t know why. Don’t know what. For me, this lasted about six months where I was in constant pain. In hospital you are asked to rate your pain on scale of 1-10. I would sit there for hours, curled up in a ball, with my eyes squinting so hard they might fall off or my screams so loud they may pierce someone’s ears, and I would say my pain was at an 8. When I could make out those words between screams, the nurse would write down 9. Because it wasn’t an 8. It was a 9. The second highest pain threshold according to that scale. The point is, it hurt. Hurts. I described it as “a rusty dagger being repeatedly dragged down my spine,” by that, one would expect a lot of trips to the hospital and a very large amount of pain. Well, I can deliver. From that rusty dagger I got enough trips to hospital for a lifetime, and more pain than I would wish on anyone.

After repeated hospitalisations, the symptoms persisted, the causes desisted. In other words, my body appeared to be sick for no reason. So, after this period I was hospitalised yet again, and unfortunately, that seemed a good thing. I liked it there. Gasp! The horror! Someone not despising a hospital… delusional right? Too much cranberry juice and kimchi… not enough Tofurkey. When you get admitted to hospital you shouldn’t enjoy it, you’re there because you’re incapable of enjoyment. But after a while, humans adapt to their circumstances. A sick little girl becomes Aria Stark braving Westeros with only a “needle.” A sick little boy becomes Iron Man during his time abducted by the Ten Rings. A sick little kid becomes their own hero. Because they have to. Because no one else can fight this battle.

It was at this stage the doctors told me I had kidney reflux, nothing too major, just the excruciating process of urine retracting from my bladder, back up to my kidney. Neither of which exactly functions properly. Joy! Oh, don’t tune out just yet, it’s time for more diagnosing… maybe after some things. Because around now I had this big surgery; what began as a simple stent insertion into my ureter escalated into a bladder reconstruction and a few other snips and snaps. Long story short they didn’t know how much was wrong with me until they cut me open. Medical imaging can’t show you everything. This surgery was extended by hours, while that doesn’t seem like much, it is. It is a lot. But not even I can understand that. I’m not a doctor or a guardian. They understand that. All I know is my body was far worse than even I knew. During that surgery my body was the equivalent to expecting a Mogwai and being greeted with a Gremlin.

After this surgery, there were even more complications. Just to make sure I don’t lose you, let’s get straight to the important part. I was diagnosed with chronic pain disorder, a painful condition where your pain receptors change, causing them to miscommunicate pain through the nervous system. While this may seem as if though it means the pain isn’t real, let me make this clear, that pain was the most real thing I – and I’m sure anyone else with the condition – have ever experienced. More real than Christ Almighty to Ned Flanders. Chronic pain is pain that exceeds the injuries or illnesses healing time, which means while you’re getting better, the pain isn’t. It seems months of my body in a constant state of infection damaged my pain receptors. And maybe some reconstructive surgery had an impact. Shocking… right? Can you hear the sarcasm? Chronic pain combined with certain factors or even alone can lead to various degrees of disability. This is why I currently have a walker stuffed in the garage at this very second. Like I said earlier, I couldn’t walk to the mailbox anymore. But hey this was getting me closer and closer to reaching Professor Xavier’s level of “gifted youngster”.

You see, this walker has remained in the garage for about two years. There was a time when it went everywhere but there. We named it Vera, after the previous owner. An elderly lady in her eighties or nineties who had some mobility issues, and a few things worse, like me in that way. When I got sick, I became more like an elderly woman than I did my own friends. Slumber parties replaced with hospital stays, skinny jeans with hospital gowns, and running shoes with walking aids. When I got sick, I had to adapt. When you get sick, everything changes, your reality is turned upside down. When you get sick is such a broad term and often can hardly get nailed down to an exact date. Because it’s essentially a never-ending story (cue Dustin and Suzie). A constant fight. A marathon. An Olympic sport. A waiting game. And it’s not over. After all, Vera is still in the garage. Just in case.

Always there in my back pocket.

The Full Dustin and Suzie NeverEnding Story Scene | Stranger Things S3. (2019, July 9). Retrieved February 7, 2020, from https://www.youtube.com/watch?v=O5HQ1sZseKg

Boy Meets World. (1993, September 24). Retrieved from https://www.imdb.com/title/tt0105958/

Cms. (n.d.). Retrieved from https://www.painmanagement.org.au/resources/about-pain/what-is-chronic-pain.html

for Children in Hospital. (n.d.). Retrieved from https://www.radiolollipop.org/

Game of Thrones. (2011, April 17). Retrieved from https://www.imdb.com/title/tt0944947/

Gremlins. (1984, June 8). Retrieved from https://www.imdb.com/title/tt0087363/?ref_=fn_al_tt_1

Iron Man. (2008, April 30). Retrieved from https://www.imdb.com/title/tt0371746/

Passenger | Let Her Go (Official Video). (2012, July 25). Retrieved February 7, 2020, from https://www.youtube.com/watch?v=RBumgq5yVrA

Starlight Express Rooms. (2017, February 3). Retrieved from https://starlight.org.au/how-we-help/starlight-express-room

“I fear oblivion,” he said without a moment’s pause. “I fear it like the proverbial blind man who’s afraid of the dark.” … I looked over at Augustus Waters, who looked back at me. You could almost see through his eyes they were so blue. “There will come a time,” I said, “when all of us are dead. All of us. There will come a time when there are no human beings remaining to remember that anyone ever existed or that our species ever did anything. There will be no one left to remember Aristotle or Cleopatra, let alone you. Everything that we did and built and wrote and thought and discovered will be forgotten and all of this” – I gestured encompassingly – “will have been for naught. Maybe that time is coming soon and maybe it is millions of years away, but even if we survive the collapse of our sun, we will not survive forever. There was time before organisms experienced consciousness, and there will be time after. And if the inevitability of human oblivion worries you, I encourage you to ignore it. God knows that’s what everyone else does.”

Green, J. (2012). The Fault in Our Stars. Penguin books.

When I first got sick, I spent a week hospitalised with so many symptoms and no ideas of causes. It was difficult. Sure, we had just assumed it was a regular old UTI, I’d gotten them every few months growing up. Now before anyone who thinks they know anything gives me some tips, let me make this clear: CRANBERRY JUICE IS A MYTH. This is not in any way meant as shade if you use this and think it works, but believe me when I say the next person to give me cranberry juice calling it the ‘almighty cure’ may get a bit of a surprise when they see where I put that juice… in the bin. Jeez, don’t be so dirty-minded.

Now that the rant is over, where was I? That’s right, a week in the hospital. In theory, I didn’t think that it was bad, regularly a week is seemingly so short but at the time I got a lot of responses contradicting that thought. Whenever someone visited me at the time, I received a lot of odd care packages, pitying faces and audible gasps in response to the doctor’s unknowingness. God, it’s like I was attending my funeral except instead of flowers I got kimchi and blankets because kimchi is good for digestion and well… it was a fuzzy blanket, and have you tried sleeping in those hospital beds? Itchy and Scratchy from the Simpsons now embody pillows and sheets in your room. Everyone who came over was astounded that I’d been there for so long. Apparently, normal hospital visits last two to three days at the most. That was news to me.

Everyone made it seem like such a big deal, it got in my head, I caught a bad case of the worrywarts. At every change, my thoughts spiralled down a new path and I could have created the ‘Spider-Verse’ had I continued in so many different directions. I was grasping at whatever straws I could find to explain the situation, it was normal, I always get sick, this was normal. Except it really wasn’t. I can say it was similar to the different kinds of sick I’ve been, not that there were many to choose from. This one hospitalisation set the course for many more to come, I didn’t know what was wrong with me, and I didn’t know when or if it would end. The short week stretched into an eternity. I like to think it would have been different if I’d known. There’s something absolutely terrifying about not knowing. Especially when you’re the topic. I don’t like surprises. I mean name a good one! I guess surprise parties and gifts can be good… oh and those videos of when someone commissioned in the army comes home and surprises their family! Okay so some surprises are good, this just wasn’t. I compared my reality to that of oblivion, in that it was inevitable and terrifying and soon forgotten. But that’s a story for another time.

By the end of the week, the doctors concluded it was a kidney infection. Damn it hurt. Myself being only around ten at the time, I didn’t understand the difference. I just knew it hurt a whole lot more than my other infections. Heck one time my class performed a rap song at assembly (Christian rap but it still counts, hello Kanye?) and despite having gone to the GP that morning and getting a prescription for antibiotics, I still got on that stage and rapped my little kidz bop heart out. This was different. The pain travelled through my spine and spread throughout the whole of my back. It was debilitating. Crippling. Agony. It had hurt the whole time but sometimes when you get validation that it’s real, it’s like it hurts more. When a toddler falls at the playground, and as soon as you start making a fuss, they lose more tears than Elena… in most episodes of the Vampire Diaries. It’s because their pain is recognised. With recognition, it’s like you have permission to feel the pain. After having fevers, shivers, hot and cold flashes and terrible pain for a week and not knowing the cause was so scary. But knowing the cause made it real. I couldn’t escape it.

When explaining it to me, one of the doctors began drawing a diagram. There was an outline of a girl. Inside the outline of the girl, around the ribs, he drew two kidney beans. He said “so you know kidney beans? Well, they’re like your real kidneys”. I thought he was insane. Inside my head, I was shouting “I’m high on painkillers right now and whatever else you have pumping through this IV so why are you describing kidneys as beans? You’re high, too aren’t you!”. Well to a certain extent. I was high. My brain was a big ball of squish…. And I was ten. Note these drugs were prescribed, stay in drugs, eat your school and don’t do vegetables. Wait… something isn’t right there. Anyways, then he continued with the picture and he coloured in the kidney(bean)s. At this point, I’m wondering how this doctor passed the first grade. The right was red, and the left green got to love colour association. My right kidney was described as ‘angry’ and the left as ‘happy’. The right was bad, the left good. Of course, this wasn’t news, I’d had kidney scarring since the womb. But now it made sense, and I definitely didn’t think he was high anymore, or a primary school dropout. I thought he was far smarter than me. Surely a medical degree doesn’t explain that… no, I needed a colouring-in for certainty. However, much I didn’t believe that doctor at the time, I greatly appreciate him now, he knew his audience.

This was my first experience of getting diagnosed. It’s a long process. It takes years, not unlike a divorce, or one of the many monologues from a Tarantino film.. It is a long and dragged out process, incredibly confusing and difficult, and normally it takes at least a year of doctor hopping before receiving a diagnosis for a chronic illness. Getting diagnosed is like a never-ending rollercoaster that only really goes down and has a few loops. Can other Spoonies relate? It’s an incredibly difficult and constantly changing process. It tires you out completely and sometimes you don’t get the answers you’re hoping for, but when you do it’s a better feeling than having your phone battery at 100%. Now this experience wasn’t when I was diagnosed with chronic illness, it was just the match that lit up a series of future occurrences with many different hospitalisations, illnesses, doctors, surgeries, just about anything in that realm of health. Not only bad things came out of this experience, I can now call when a bladder is going to burst on Grey’s Anatomy… oops, spoiler alert.

I have a friend Amelia, she is the type of person who will, when you start singing Breaking Free or Sweet Caroline immediately chime in with ‘soaring, flying’, or of course the ‘dun dun dun’. Together and with some other friends we embody the Stranger Things characters when playing Dungeons & Dragons in the basement, however, neither of us can ride a bike, I mean who needs to when you have a fake D&D girlfriend who happens to drive in real life? Amelia is also not more importantly but not unimportantly, a Spoonie. She has many illnesses, similar to myself, one of these including Myalgic Encephalomyelitis (ME), otherwise known as Chronic Fatigue Syndrome (CFS). While I’m no expert on this syndrome, I can tell you that it isn’t just feeling tired, its extreme exhaustion. Imagine that moment when you’ve stayed up all night with your mates, you’ve made it through the night and the sun is rising to a new day, the adrenaline is finally slowing down, and the sleepiness is finally setting in. That moment of complete exhaustion is almost constant for someone with CFS. They have constant flu-like symptoms and exercising becomes a greater struggle due to pain and inflammation in the brain and spinal cord. Saying its difficult is an understatement. Can you imagine being in a constant state of flu, yeesh!

What’s even more difficult is the diagnosis. For this particular disease, it took over four years of regular symptoms and one year of increased symptoms before she figured out what it was. In the time it took for Amelia to get diagnosed, Antman got stuck in the Quantum Realm, Black Panther and Spider-Man disappeared, and what I consider the greatest change; we’ve gone from ALS Ice Bucket Challenge to Tik Tok dance trends sweeping the globe. Renegade, renegade. I’ll stop now, I can’t dance. The point is five years is a long time. When she finally got the diagnosis, after hopping from doctor to doctor to get answers, she didn’t even know what was wrong with her. “I was just told I’d had this thing, this disease, and I didn’t know anything about it,” is how she describes her diagnosis. From then on everything just went to hell, similar to me in that sense. More doctors, more diseases. With one, comes all is a common mindset for people with chronic illness. I mean hey, we were always told we could have the world, guess this is pretty close.

So, I guess you could say we Spoonies have a little world of our own. While its an incredibly difficult situation and process, what gets to you the most is the isolation. The feeling that you are completely alone in this terrible pain and no one else cares. You completely understand the worth of friendship and who those friends are. When major things happen in your life, you find your people. They are the ones who stick around and don’t get bored, never let them go, they are your people. As terrible as it sounds, when Amelia got sick, I suddenly wasn’t alone. Someone understood. After all, all anyone wants is a little understanding and acceptance. To be a part of something. A part of a world. Just ask Ariel.

References:

“Grey’s Anatomy” Freedom: Part 1. (2008, May 22). Retrieved from https://www.imdb.com/title/tt1002875/

Denton, E. (2018, April 12). Best And Worst 2014 Trends. Retrieved from https://www.seventeen.com/celebrity/a26071/2014-best-worst-trends/

Department of Health & Human Services. (2014, September 30). Chronic fatigue syndrome (CFS). Retrieved from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

DisneyMusicVEVO. Efron, Z. Hudgens, V. (2019, August 22). Troy, Gabriella – Breaking Free (From “High School Musical”). Retrieved January 28, 2020, from https://www.youtube.com/watch?v=0qj67KE5VXI

Dockterman, E. (2019, March 8). Avengers: Infinity War Ended With a Major Twist. Let’s Discuss. Retrieved from https://time.com/5255759/avengers-infinity-war-ending-explained/

KarlStudios1. (2008, September 7). Neil Diamond – Sweet Caroline High Quality neildiamond. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=1vhFnTjia_I

marcbranches. (2009, July 9). Kill Bill vol 2 Superman monologue. Retrieved from https://www.youtube.com/watch?v=eWTJIBGNId0

Multi Scene Packs. (2018, August 24). Sad Elena Gilbert Scenes | 1080p Logoless. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=JCw3JBq6-x0

r/Graffiti – Stay in drugs, eat your school, don’t do vegetables. (n.d.). Retrieved from https://www.reddit.com/r/Graffiti/comments/9kjhyg/stay_in_drugs_eat_your_school_dont_do_vegetables/

The Little Mermaid. (1989, November 17). Retrieved from https://www.imdb.com/title/tt0097757/

Tik Tok It. (2019, October 25). RENEGADE RENEGADE RENEGADE TIK TOK K CAMP LOTTERY. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=FukgMwwdwPM

USA TODAY. (2019, June 16). Watch the cutest reactions to military dads coming home | Militarykind. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=p0csxhIcfDI

Vault Boy. (2017, September 20). The Itchy and Scratchy Show. Part 1. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=bsSb0rvHr-s

It’s not much of a tail, but I’m sort of attached to it.

Milne, A. A., & Shepard, E. H. (1989). The world of Pooh: the complete Winnie-the-Pooh and the house at Pooh Corner. Toronto: McClelland and Stewart.

Shout out to all my ‘Spoonies’ reading this! If you understood that term, props to you if you didn’t, tune in for a bit of an education. For people with chronic illness, balancing life and health can be a challenge, to say the least. This is where we introduce “the Spoon Theory”, an essay based on personal experience, written by Christine Miserandino and published on a site called But You Don’t Look Sick, which is where I first discovered it. This website was a godsend when – I know I say this a lot – I first got sick. The Spoon Theory was the Bible. Miserandino was Jesus. I was her disciple… her text made me fangirl like only an OG 1D fan can understand. I fangirled because I finally felt like I wasn’t alone in this. Other people have illness. Other people understand. It’s like when you’re gossiping with your best friend and as soon as you have beef with someone, they pull out the sword and are ready to duel on your honour. Solidarity sister! All anyone wants is a little acceptance and a little understanding. And in the case of soul sisters, some blind hatred for people they know next to nothing about.

Christine Miserandino suffers from Lupus and she produced the Spoon Theory in 2003 when she was in her college years, she is, therefore, youth with chronic illness. Lupus is a systematic autoimmune disease where the immune system attacks your tissues and organs. With lupus, inflammation can affect different body parts and systems like the joints, skin, kidneys, blood cells, brain, heart, and lungs, but you also risk infections and more. It can be difficult to diagnose for several reasons including mimicking other condition’s symptoms. As for causes, you can be born with a lupus tendency that can be triggered by infections, certain drugs, and even sunlight. Unfortunately, there is no cure for Lupus which means for most cases it’s a life-long battle in which you must simply take every day as it comes, as is often the way with chronic illness.

The way Miserandino explains chronic illness is through a metaphor where she refers to the energy of those with chronic illness as spoons. Every day you have a set number of spoons, and every activity you partake in, you lose a spoon. Now, this isn’t as simple as it seems. To you, these activities probably seem like getting ready for school, going to school, going to lunch, maybe an afterschool activity and then there’s always homework and getting ready to sleep…maybe a few hours of Netflix. This is what I always think of when I think of the regular teenage school routine. It’s different when you’re sick. All of these activities considered mundane and regular are a marathon that we’re trying to run with a twisted ankle.

Getting out of bed is an Olympic event. For myself, it takes at least an hour to muster the strength to sit up in the morning. It’s not just because I’m lazy, I physically cannot move. Just the other day my friend took my phone to set an alarm for when she had to leave, and in doing so she saw my regular alarms. The shock on her face when she had to scroll was what I would look like if all of a sudden, a school of baby Ewoks took over my backyard. Baby Chewbacca oh my. You can imagine there are a lot of alarms. No, I’m not just a heavy sleeper. I am sick. My energy levels are immediately affected by everything that’s not functioning in my body, in other words, chronic illness has made me relate more to Eeyore than Winnie the Pooh.

While getting ready is as simple as getting up and dressed, doing your hair, you know basically everything from Quinn’s performance of I Say a Little Prayer For You or Ke$ha’s own TiK ToK (not the new Musical.ly, I repeat not the new Musical.ly) for people without illness. With illness, it is more complex. Assuming you get out of bed that morning, and at a time close to one of the alarms, there are now a lot of decisions to make. Can I eat or am I nauseous? Do I have medicine to take? If I have medicine, I need to eat. Am I strong enough to take a shower? Standing for that long will take a lot of energy. Am I even well enough to go to school today? Okay, let’s get dressed. How is mobility? Can we work with buttons today? Are you strong enough to lift your jumper above your head? Why do we wear laces? My hands are shaking so much. Now I’m too hot for a jumper. Now I’m too cold. It’s hot again. Did I take my meds? What am I forgetting? Shoot, late for the bus. Shaking at the bus stop. I’m going to miss the bus. Wait did I lock up? Did I even pack my keys? What did I forget? Oh, the bus! That step is so big. Shoot I forgot my homework. Too late now. At school. Can’t lift my bag. The bus is going to leave. The bus is leaving. The bus left. I’m still on it. Ask for help. Can’t. Frozen. Stop button. Now I have to walk further. Will I make it the day?

That is a bleak example of the common thought process experienced by people with chronic illness. What starts as what should be a simple go-to split decision escalates into a million micro-decisions and next thing you know; you’re having an existential crisis. This thought process expresses the mentality of many people with mental illness. It also explains, to an extent the Spoon Theory. We have spoons. We use them for the most mundane of activities like clothing yourself. Being a ‘Spoonie’ means you are less able to do things as everyone else can. Sometimes you have to try harder than the majority. Sometimes you can’t even try. That’s okay. We do the same things; it just takes more out of some than others. When I first read the Spoon Theory, this finally made sense to me. Now I try to introduce it to everyday life.

This is a difficult concept to understand, consider it to be like Harry Potter where they introduce the magical universe. It’s a whole new world to understand and develop. And of course, muggles know nothing of this world. Until they are introduced to it. If you are a muggle in terms of Spoon theory, I hope I introduced a bit of this world to you.

My name is Amelie and I am a ‘Spoonie’.

References:

(2009, November 14). Retrieved from https://www.youtube.com/watch?v=iP6XpLQM2Cs

20th Television. (2009). Retrieved January 25, 2020, from https://www.youtube.com/watch?v=r5rli1PnsoU

But You Don’t Look Sick? The Spoon Theory. [PDF File]. Retrieved from https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

ButYouDontLookSick.com. (n.d.). Retrieved from https://www.facebook.com/bydls/posts/10157956935269729?__xts__[0]=68.ARBsQwLV-

Lupus. (2017, October 25). Retrieved from https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789

Schultz, K. (2019, April 18). What is Spoon Theory? Retrieved from https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#7