Tag Archives: fibromyalgia

A sweary reflection

It’s been a little over a year since I’ve started my PhD. It’s been, well, mostly good. The panicking, the crying, and the sense of despair have been balanced by the joy of good feedback, a sense of achievement, and above all, doing what I actually love, even when I bitch like hell about it. Because even doing things you love can seem like a pain the arse when you’d really like to be doing that other thing you love which doesn’t have a deadline.

Doing my PhD has already taught me a few things. It’s affected my fibromyalgia – and been affected in turn – in new and interesting ways. As well as some old and frankly boring ones. I’ve met some lovely people, online and at conferences and talks, including the awesome people who volunteered to let me into their lives and be participants (and answer some really weird, nosey questions). I’ve been introduced to some ideas that I’ve loved or hated or just made me think, that have changed how I’m approaching my research entirely, or confirmed some of my suspicions that while I may or may not be barking up the wrong tree, I am not the only one doing so. It’s been awesome.

And, in the grand tradition of avoiding doing some work, I’ve made a list of the things I’ve learnt.

1. Say no

Whether it’s because you don’t have the time, or because you straight up don’t want to, say no. I’ve got shit to be getting on with. Sometimes that shit is sitting on the sofa, eating crisps, and doing sweet fuck all, but still, I’ve got shit to do. I have finite energy – you do too, even if your reserves are decidely larger than mine – and I have learnt that I can’t do everything that everyone wants me to do. So I have to say no – whether it’s to going out with friends (it frequently is, and my friends are the best for understanding this) or reading a book or travelling to an event. Most people have been understanding.

This is why I’ve quit my job, at least for the rest of the year, to focus on my PhD. I do, mostly, like teaching. However, this particular teaching role was throwing up demands on my body and mind that were impacting my priorities in life – I have been bitchy and I haven’t had the energy to be the person I want to be, or to do the things I want to do – or even the things I need to do. I’m lucky; G is immensely supportive, hugely helpful, and he does the hoovering. I like the income. But I need to refocus and get on with my research and my writing, and teaching EFL to teenagers wasn’t helping. So I’ve quit and it feels great.

2. I don’t need that in my life

If you can’t acknowledge that I might know what I need or want, and that I do know what I’m doing – or, conversely, that I still have the right to go ahead and do it anyway – then I do not need you in my life. If you can’t get over my disability, I do not need you in my life. If my disability (or whatever) is such a barrier to our friendship, or you employing me, or you speaking to me politely – guess what? I don’t want to be your friend/employee/colleague/whatever. So long, farewell, fuck the fuck off.

Seriously though. One of the bits about radical self care is this: don’t feel you have to keep someone in your life if they’re sucking your soul. Which is not to say I’m going to dump friends just because they’re having a shitty day/week/year; we all do, and sometimes depression makes everything harder. But it is to say that I don’t need sources of hate in my life, and I can’t win everyone over to the dark side with the power of my personality and swear-filled arguments, so I will choose my battles and my friends.

3. Say yes

Having just said all that – I have learnt to say yes. Yes to the things I want to do, the things I need to do, and especially to the things that mean I’ll be utterly useless for days after but I hope it’ll be worth it. I don’t always say yes – but I try to, especially when it’s something that might be fun, or open my mind.

4. Down time is sacred

I have a rule: unless there’s something urgent that needs to be done by tomorrow (or worse, by yesterday), I always have a few hours to watch TV, knit, cook, walk the dogs – time to live, in a quiet, low-energy way. G and I have some tv programmes we watch together – I have several I watch alone. I like cooking dinner for us. We can talk and eat and bitch about the things that need bitching about, and it helps keep me from going batshit insane.

5. Own your weaknesses and limitations

They’re not something to be ashamed of. And in talking about it, I’ve found other people will also talk about it. I hope that, maybe, it’ll help someone else decide they can do a PhD and see that it’s not all stress and working yourself into the ground and crying. Sometimes it’s fun and the hard work is manageable, and you can do it while being chronically ill and constantly shattered. Or at least you can do the first year. Fuck knows what the rest is going to be like.



Thinking critically about critical thinking (or, down the rabbit hole)

One of the things I’ve been considering lately – other than why my spacebar keeps sticking – is the role of critical thinking, and reflexive thinking, in my reading and in the development of my methodology. For me, the two are intertwined in ways that mean I can’t completely separate the two; when I read something critically, my views and understandings are always influenced by what I want to get out of that piece, as well as by who I am – my understandings, experiences, and biases.

What I’m finding though, is that the more reading critically/reflexively becomes a practice in my studies, the more it becomes a habit in the rest of my life; reflexivity is becoming a reflex itself. For example, G and I have started watching Friday Night Lights –¬†an engaging if not overly cerebral drama based on a film (in turn based on a non-fiction book of the same name) following a small town and a high school American football team. I’m enjoying it, even if I have barely grasped the basics of American football (I’m hampered by my inability to stop chortling over “tight end”); at the same time, I’m finding myself interested Street’s storyline.

Street is – and spoilers ahead – or rather was the star quarterback of the team; he has a close relationship with the coach, and is cast as the kid who has it all – he’s town hero, he’s likeable, he has a “hot” cheerleader girlfriend, it’s assumed he’ll get a sports scholarship to a college, where he will play football, then be signed by an NFL team and turn pro. Street’s life – and by extent, the whole town’s – is disrupted when he is injured in a match, leaving him paralysed. The treatment of Street’s disability is where the critical thinking really kicked in for me; Street asks about sex – and his rehabilitation center roommate, Herc, answers honestly and hilariously. Herc’s masculinity is firmly in place – one of his first lines is aggressively hetero, and disablist, and he’s set up as antagonistic from the get-go;

“Hey when you’re done putting the newbie into that gay wheelchair, let me know…I don’t mean gay as in ‘homosexual’, I mean gay as in ‘retarded’.”

Herc isn’t a nice character when he enters. He’s an arsehole, and he remains an arsehole, even when he quickly becomes the arsehole-with-a-heart by being the one who gets Street into murderball and berates him into not “giving up” – but he isn’t, at least in the first ten episodes – an inspirational supercrip; he’s too aggressive, too flawed and unrehabilitated for that. He’s not the compliant crip body – he’s loud, and sexist, and manly, and Street is encouraged to take him as a model.

Then I’m wondering if the actor playing Herc is disabled, and a quick look on IMDB confirms that he isn’t, and I’m thinking about how disabled actors are rarely cast in mainstream shows, playing disabled characters, and why I find that so irritating.

But I’m getting this while watching TV. After I’ve put my books away and made a conscious choice to walk away from work. And I’m left reflecting on why it’s become something I reflect on.

Another example here – and this is personal, so bear with me. I have fibromyalgia, and in the course of looking for ways to manage it, I’ve started a course of mindfulness meditation to go along with the antidepressants and painkillers. Friday was the first day, and so I’m lying on the floor of the room with several other people, on a yoga mat, questioning why I didn’t get a pillow or choose to do this nonsense sitting up, listening to the counsellor talk us through the body scan (which is, basically, lying – or however you’re most comfortable – and focusing your attention on different parts of your body while controlling your breathing).

And I’m thinking critically about it. About why I’ve been silent in the group so far – in the first instance, because after one person said the raisin we were supposed to be eating mindfully said it made her think of a brain, when it made me think of a clitoris, and because I didn’t want to discuss my decision to do the 5:2 diet in why I didn’t eat the raisin – and then about the counsellor’s word choices; why this has been called the Body Scan rather than¬†Savansana, why she says genital region instead of any other word choice, and then why my brain is so busy with that I’ve entirely forgotten which body part I’m supposed to be infusing with awareness. To be honest, it was awesome and I felt wonderfully relaxed, despite all of this.

But I’m not sure thinking critically is part of the process – perhaps reflexivity is, but the overall aim seems to be about acknowledging and letting go of reactions and feelings, rather than picking them apart before flattening them with Foucault. Because I did start to think about the role of counselling and power and rehabilitation – probably because I’ve been reading around those issues, so they’re on the brain. I got so busy thinking about that, I didn’t pay half as much attention to what the other group members were saying.

Nonetheless, here I am, thinking critically about my own silence, and reflecting on my own reflexivity. It’s become a habit, and I’m pretty ok with that – perhaps it shows that I’m taking on board at least some of what I’m reading. Perhaps I’m becoming more accepting that these tangents might actually be helping, provided they don’t let me get too distracted from what I should be doing.

And now, if you’ll excuse me, I have to go lie on the floor with the dog and think about my big toe.