Tell Lulu, Easy on the Chronic

The Hot Chick is an amazingly brilliant and hilarious film, and as such I found the above quotation from the film to be the perfect thing to use for the title of this post about how I’m dealing with being diagnosed with a chronic illness. I haven’t decided if my maintaining a sense of humour about all of it is a good thing, or just a sign that I’m still a little bit in denial and the realities of it haven’t completely sunk in yet. I’m sure my counsellor will have some thoughts about that when I see them next…

So anyway, after months of pain, fatigue, tests, ‘maybes’, and confusion, five days ago I got my diagnosis: spondyloarthropathy. Basically this is a big, fancy, scary word for a group of genetic autoimmune disorders that result in arthritis in various parts of the body. Mine is currently affecting my hands and feet, and I have chronic pain in my legs and hips/lower back. Further tests over the next few weeks will hopefully tell the docs which type of spondyloarthropathy I have, but perhaps not. Either way, I’m relieved to finally have something to call this thing that is happening to me.

Relief is just one of the many things I’m feeling about this, though… and to be honest it’s not really the dominant emotion I’m experiencing. What else have we got in this bag of tricks… let’s see… anger, frustration, sadness, uncertainty, fear, and a (at the moment miniscule) bit of acceptance. I feel like I have lost the genetic lottery. I think ‘why me?’ and I get angry, but angry at what? There’s nobody and nothing to be angry at except sheer bad luck, and the absence of someone or something to blame makes me even more frustrated. I feel like it sinks in a little more each day that my future is going to be different from what I thought it would be – I feel like I’m in mourning for my love of delicious cocktails which I will no longer be able to drink, and confused as hell about how strong my emotional reaction was to my specialist telling me how crucial it is that I absolutely avoid pregnancy, even though I was pretty sure I never wanted to do the pregnancy thing in the first place. Ever had a specialist look you in the eye all serious-pants and repeatedly say to you “do not get pregnant”? Heavy shit. But it still doesn’t feel real at all… I’m not chronically ill, not me, this shit happens to Other People. I’m sad and frustrated by the fact that this is not something anyone can cure, but rather something that I’m just going to have to learn to live with. That, in turn, is where the tiny bit of acceptance comes in – but it is a begrudging acceptance, a ‘well there’s nothing that can be done to change it so suck it up’ rather than an ‘okay, so this is part of my reality now, and I’m at peace with that’. I’m afraid of what the next few months might bring with them as I begin my treatment and face the realities of what that treatment might mean – will it work, will I have fun side-effects, what things do this treatment mean I can no longer do, all the other fun scary thoughts. Mostly, and finally, I just feel incredibly WEIRDED OUT. I’m a “chronically ill person” now. When did this happen? A year ago I was just your garden-variety stressed-out-but-happy PhD student doing PhD student-y things, and now I’m that PhD student plus regular-medical-appointments-and-physio-appointments-and-all-the-appointments-and-all-the-pain-and-a-funny-waddly-walk. I’m thinking of getting a penguin onesie to wear around – you know, embrace the humour and whatnot. Whenever I catch myself complaining that my back or my legs hurt now, I just start laughing. Of course they hurt, girl. Welcome to your new Reality.

So I have been welcomed to the Chronic Illness Club, but I am still awaiting my gift basket. My mind is a big, overwhelmed bundle of ‘okay, this is happening’ right now, and frankly I have no idea how I feel about any of it. Alls I know is I have superb family and friends all around me, and will reiterate again (as I have done many times on this blog) just how amazing my thesis supervisor is. So many things seem very up-in-the-air at the moment, but it’s a huge relief to know that everyone’s support and understanding is something I can be sure of. Love to all of my people, and to the other members of the Chronic Illness Club out there: seriously, where is my gift basket?

E. xx

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No money? No problem! Or, How to Survive a PhD Without a Scholarship

PhD students are busy people. We all do a bunch of stuff, and our work takes up a whole lot of our time. The thought of taking on a PhD is daunting enough on its own, so when you face the idea of doing all of it without any financial support it can seem even more terrifying, understandably. Getting through without a scholarship has always been a reality for some PhD students, and with increased enrolments and decreases and changes in funding it is definitely a problem – potential or real – facing PhD applicants now. As someone who has so far survived the first year and started the second year of her PhD without a scholarship, I’m here to talk a bit about the harsh realities of it but also share some tips on how to make it work – because trust me, you can. Read on, Macduff.

What I will say first is simply this: being told that you are not receiving a scholarship for your doctorate is upsetting and frustrating as all hell. You will be angry, sad, bitter, and jealous of your friends who did get scholarships. You will panic, doubt whether you should accept your admission offer at all, think ‘if I’m not good enough for a scholarship then why bother?’, and be generally Cranky Pants for a while. This is completely fine, normal, understandable, and okay. Embrace it. But know this also: you are not alone! You aren’t the first person to not receive funding, and you won’t be the last. Many have gotten through the PhD process without a scholarship before you, and it is absolutely possible. Does it make the whole thing seem that little bit more scary, difficult, and fraught with stress? Sure, absolutely. But did you get into the degree? Do you want this? Yes. You CAN do it.

I spent my first year doing my PhD full-time and working one job on the side at part-time hours. At the moment, that has increased to two jobs: the non-uni-related job I had last year, and teaching for the first time as part of the ‘bigger picture’ of academic training that the PhD involves. Taking on this second job has meant that I’ve had to push my organisation into serious mode, and REALLY get myself sorted. I’m going to go through what I consider to be the four most important things you should get sorted to help yourself deal with doing a PhD, especially doing one while having to work at the same time. These four things, all important to your studies and your health and wellbeing, are: your support network, organisation, prioritising, and self-care habits. Let’s kick off with the support network.

I am the first to admit that I would absolutely not be able to be doing this amazing, crazy thing without the support of my parents, family, and friends. The support I get from these people in my life includes the big ones like financial support, moral support, emotional support, but also small things like having friends who are willing to feed me a few nights a week when shifts at work are scarce or I get sick and cannot go to work. Having people in your life who value what you are doing, who support you, and who you feel comfortable asking for help when you need some is so, so important. Have at least one person in your life that will support, love, and respect you no matter what, and who will help you to tell the difference between really wanting to quit and the natural feelings of self-doubt – these feelings crop up often for every PhD student I know, regardless of their scholarship situation. They can be tough and we all need help to deal with them. This is where the final very important member of your PhD support network comes in: your supervisor. Remember that your supervisor was once a PhD student themselves. They’re a person, and they know first-hand what you are going through. It is so valuable to have a supervisor who is willing to openly admit this fact to you, to discuss it with you, to get to know you, who cares about you and really wants to see you succeed. Finding a supervisor you’re comfortable enough with to talk about your challenges and any personal issues that may arise throughout your candidature makes a huge difference – at least, it has made a huge difference for me. I highly recommend it.

Number two is a big one. GET ORGANISED. I have always loved organisation and found it has a calming influence on my life. Since high school I have been the Queen of Colour Coding. This semester, though, wowsers… my diary is lit up with so many different colours of highlighter ink it looks rather festive! Now, as much as I preach absolutely enmity with all that is Mathematical, when your life is so jam-packed with all the different things, a little basic math can do your mind – and your diary – wonders. When I realised that the first 6 months of this year for me would need to involve a full-time research load, hours working two different jobs, and all the other things that need doing in life that take up some time, the only way I could handle the thought of it all was to sit down and divide up the total number of hours there are in each calendar week into certain numbers of hours per ‘task’. As a rough example, here’s what I fit into my diary each week, based on the realities of my individual circumstances and needs:

  • 35-40 hours of research work
  • 10-15 hours at job #1
  • 10-15 hours at job #2
  • 50-55 hours of sleep
  • 3-4 hours at the gym

Around all of these easily quantifiable tasks, I fit in the rest of my life (or some weeks, a few extra hours on any one of those tasks, depending on circumstances). I’ve found that figuring out a rough guide for myself of how many hours per week these important tasks take up has been SUPER helpful in making sure that I achieve them, and that I am using my time as best I can – with this much going on, ‘wasting time’ or writing off entire days is a luxury I’ve had to seriously cut back on. If such a system doesn’t work for you, find something that does. When you’re taking on a ‘to-do list’ as epic as this each week, knowing when and for how long you’ll do each thing you need to do each day is a lifesaver. Also important in figuring out how long you’ll need to do each ‘thing’ for is honesty – be honest with yourself. You know yourself, your study habits and techniques, and how things work for you. Plan your schedule accordingly.

That brings me to thing number 3, closely related to organisation – priorities. When planning what you’ll do on any given day, week, or even month, you need to prioritise. The best, and slightly amusing, example of this from my own schedule is that in order to make sleep a priority for me, I have reinstated a bed time for myself. I am almost 24, living over 1000km away from my parents, and I have a ‘bed time’. It’s written in my diary each day and everything. Sounds funny, huh? But here’s the reality that we ‘grown ups’ seem to forget or ignore so easily – sleep is actually super dooper important for our physical and mental health. With a schedule like mine, can I afford to be not only tired all of the time from not enough sleep, but also feeling unwell more often? Or worse, can I afford the triggering of my anxiety and depression that happens very easily if I have poor sleep habits for too many nights in a row? Nope! Definitely not. Prioritising is also important for dealing with the situation of being offered an extra shift at work – how badly do I need the extra money that week? Have I done enough research work that week to justify losing a few hours from that task to a different one? I have to evaluate these questions every time I get the phone call.  It’s all about learning to prioritise, separating my ‘needs’ from my ‘wants’, and importantly being honest with myself. That’s a really important habit to get into, too, and brings me to the grand finale: self-care.

A lot of this one ties into stuff I’ve already mentioned, like getting into good sleep habits and dedicating time to exercise every week. I hate exercise, I really do. But I do it because it’s important and it’s a need, therefore my lack of ‘want’ is irrelevant to the situation – sorry future me, you’ll thanks me one day. As PhD students we spend a lot of time living in our heads, and focusing on our mental faculties as where we do most of our stuff. I love my brain, but it has to live somewhere. Not only is regular exercise good for self-care for the obvious reason of it is physically good for you, I find it does a lot for my stress levels as well. All the good things! (as much as it irks me to admit it)… I won’t bang on here about nutrition, because if I do I’ll start to feel like a preachy weirdo on one of those nutri-bullet infomercials. Plus, the idea of surviving this PhD thing without EVER having a coffee, or some vodka, or chocolate, or cake, or all four at once, is completely incomprehensible to me. If you are reading this and you somehow are managing a PhD existence without any of these things, you are a magical unicorn of wonderment and I applaud you. Your support network is also, of course, a very important aspect of your self-care. It’s important to remember to switch off now and then, have ‘a life’ outside of your PhD – whatever that may mean to you. See your friends and family, spend an entire day in your pj’s every once in a while, go on a holiday. Work your butt off, and be committed to what you do, but don’t become a total hermit and let it completely consume you.

It seems stressful, maybe even scary, and if I’m honest it can be, but the important thing is to stay excited. You have to want to be doing this, and if you’ve gone to all of the effort of applying in the first place I think it’s safe to say that you do. That’s the biggest step already taken. Jump into doing what you love, enjoy it, be excited by it, and the hard parts and extra hurdles that pop up will seem a lot easier to manage – and totally worth it! Working my way through my PhD with no scholarship is hard work, it’s tiring, and often stressful, but here’s the kicker: I love my thesis. I love research. I am excited every day to wake up and work on my project, and to keep living this exciting adventure of awesome. I love myself for taking this on, and I hope you will too 🙂

Finding My Niche Despite Chronic Illness

Reading this was exactly what I needed right now. I am currently on this very diagnostic path, with lupus strongly suspected by my doctors. Whatever the diagnosis and outcome is, I’m so happy to have a fantastic supervisor who is understanding and supportive of my current state of more-than-normal sleepiness, chronic pain, and for the fact that she is one of the few people in this place who NEVER asks me “why are you limping again?” when she sees me… I really am getting sick of that question, because for now I cannot answer it!

PhD(isabled)

Purple blue leaves grow from a niche between a grey concrete sidewalk and a beige wall

A few weeks into my first year as a Sociology PhD student, I started to notice intense pain after working out. I don’t know exactly when things changed, but I soon realized that I was in pain all the time.

With the pain came stiffness in my joints, mobility issues and generally feeling unwell, like I was always coming down with something. It seemed that the more time that passed, the more symptoms cropped up.

So began what my first doctor called the “fishing expedition”. Lab tests results were coming back abnormal all over the place, but no one could figure out why.

It was a difficult time for me. I couldn’t share what I was going through with my fellow students, not even with those I considered to be friends. Although I was somehow managing to keep up with my school work, I couldn’t say that I was going…

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International Women’s Day – Feminist Reflections

I started my day on a train into the city, heading in to see a number of fantastic, intelligent, and inspiring women speak at a Women’s Day event. Naturally, I selected an appropriate book to read on the journey: Emma L. Rees’s AMAZING The Vagina: A Literary and Cultural History. I would review it for you here, but alas I am still only a few chapters into it, so will have to crap on about it gleefully to a greater extent at a later date. What I can say from the few chapters that I have read so far, though, is that it is a completely amazing book, I love reading it, it’s informative, fascinating, and funny. The chapter I indulged in this morning, as an example, was concerned with the etymology of the word cunt – see? Fascinating. Informative as hell. I laughed out loud in the train carriage more than once. It’s a fabulous feminist read. As is my habit, I have digressed… moving on.

Okay. So, going into Sydney to listen to super women discuss feminism, and all of the obstacles, issues, and also blessings that come with the being and doing of ‘femaleness’ in our society. First up was a panel featuring Tara Moss, Germaine Greer, Clementine Ford, Celeste Liddle, Roxane Gay, and Anita Sarkeesian. The topic of this panel was ‘How To Be A Feminist’, and needless to say with these women on the panel it was FUCKING INCREDIBLE. Going in, I was most excited to see Tara Moss and Germaine Greer (I may have squealed when they appeared on stage, and whispered to my friend “She’s real!!” when I saw Tara…), but by the end I was hardcore fangirling over all of the women on the panel. Is there one way to BE feminist, or not? Are there any criteria which automatically include or disqualify you from ‘the cause’? By the end of the panel we still didn’t have any clear answers to those questions (not that I was expecting to get one, it was only 75 minutes and we’ve been debating these issues for how long now?). What we DID have by the end was plenty more ideas and perspectives to take away and think about, which is never a bad thing. The other two panels were where I REALLY got inspired..

Roxane Gay’s presentation, topic Bad Feminist (just like her book which I now cannot wait to sink my eyeballs into … bit too gross? Little too far, girl. Moving on.) What was I saying? Roxane Gay’s presentation on being a ‘bad feminist’ was simply great. Dr Gay was honest, easy to understand, laugh-out-loud funny, witty, and refreshingly real about all of the topics she discussed. As a feminist, for example, should she enjoy listening to rap music with unbelievably misogynistic lyrics? Probs not. But she does it anyway, because it’s “daammnn gooood” *dances in her chair on stage*. Another highlight of this talk was her discussion of the 50 Shades of Grey books and film. As Dr Gay is an English professor, and given the warring views around these texts in feminist circles at the moment, I was particularly interested to hear her views. For once, the explanation of why someone enjoyed the books made sense to me, perhaps because while defending those aspects of them Gay also condemned the more … unhealthy… aspects of the characters’ relationship. Also, her answer to the question of why these books have taken off the way that they have, despite there being other women-centred erotica in existence that is written at a far higher quality, was hilarious and frank: “clearly, a lot of women are under-fucked”.

For me, the third panel of the day was the most poignant. The incomparable Rosie Batty was joined by Tara Moss to discuss the rate of domestic violence in Australian society and the lack of social, media, and political response to it. Why is it the case that when two people are killed after being ‘king hit’ on nights out, this kind of violence gets a new name (the coward’s punch), the stories are all over every major news outlet in the country, and new laws are enacted to ensure harsher punishments for the perpetrators of such actions, but when women (because we’re people too, remember) are being killed in instances of domestic or intimate partner violence at a rate of more than two per week nothing is being done? Where is the outrage? Surely I can’t be the only one who is desperate to see this situation change? Being in that room full of people today was a great step in reassuring me that, no, I’m not alone in my frustration. The contributions from men in the room were particularly refreshing and gave me hope. What I especially got out of this panel is that the cultural narrative around abuse REALLY needs to change, not just so that the endemic victim blaming culture can be eradicated, but so that people – especially women – can actually have the knowledge and ability to recognise when they are themselves being abused. I was assaulted in a relationship three years ago, but I did not realise that this was what had happened to me until last year when I discussed the incident with a friend. I said “no, that can’t have happened to me. It doesn’t happen to people like me.” The inherently false cultural narrative had taught me that sexual assault is something that happens to other people. Never to ourselves. I asked him to stop, he ignored me, and I was terrified. And yet, somehow, I had to have it pointed out to me that this was an act of abuse. And we still have people saying that many of the mixed up messages out there about what constitutes a healthy relationship, about what consent is, don’t matter because “it’s just fiction” … *insert angry and dismissive eye-roll here*

All in all, today was bloody brilliant. Women are bloody brilliant, and we deserve to have our voices heard more often as they were today. The word would be a better place for it.

Vaccines Don’t Cause Autism, But That’s Not The Point. Stop Being Ableist.

The Belle Jar

Here are some typical arguments put forward by parents who choose not to vaccinate their otherwise healthy child (by which I mean they’re not asking to be exempt because the child is immunocompromised or otherwise couldn’t medically tolerate vaccinations. For this example, I will pull quotes directly from a recent New York Times Article, Vaccine Critics Turn Defensive Over Measles:

“It’s the worst shot,” [Missy Foster, mother to an 18 month old daughter] said, with tears in her eyes. “Do you want to wake up one morning and the light is gone from her eyes with autism or something?”

Kelly McMenimen, a Lagunitas parent, said she “meditated on it a lot” before deciding not to vaccinate her son Tobias, 8, against even “deadly or deforming diseases.” She said she did not want “so many toxins” entering the slender body of a bright-eyed boy who loves math and geography.

You’ll notice…

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Reading Challenge Review #1: Wuthering NOPEs

So…. not really much of a review because I QUIT. Holy cheeseballs, did this book fail the ‘first 50 pages test’ or what?! Now, I know, it’s a long(ish) book, so it may need a bit more than those first 50 pages to really get going…. but it would be nice if the first 50 pages at least didn’t make me want to put the book down, never pick it up again, and go to sleep for eternity. Sorry Emily, I just wasn’t feeling it. The plus side of this abismal attempt at sticking to a reading goal is that I may have found my answer to the question I posed a few months back – how to know when it’s time to break up with a book. Henceforth, this shall be my personal philosophy for that conundrum: if the ONLY reason you feel you should continue is ‘just in case you have to teach this book some day’, stop reading. Is it possible I’ll have to teach Wuthering Heights at some point in my academic career (if I am lucky enough to HAVE an academic career)? Sure, it’s possible. But is that a good enough reason for me to suffer through a book that I’m really not enjoying in the here and now, when I could be using my very limited leisure reading time discovering another book that I may very much enjoy? ALL THE NOPES! If not finishing Wuthering Heights now comes back to bite me some day, I’ll cross that bridge when I come to it. For now, I’m hiding it back in my to-read pile and moving on to Reading Challenge Book #2: Ira Levin’s Rosemary’s Baby. Here’s hoping this one passes the test.