Migraine: a journal sample

May 19, 2018

I want to get up every day and feel okay or even well. To have energy and some expectation of getting things done. I don’t want to be disabled. I feel like life is passing me by, like I don’t do anything, like my life doesn’t matter.

I say that I know how to have a good life with chronic illness, that a life of quiet routine, reading, good meals, gardening, intellectual work, time with friends is all I need or want. And that is my ideal in so many ways, but I’m not sure it’s wholly true.

What’s missing? I want to be liked, to be admired, to be needed, to feel like my life and work matter to other people. Right now, in some ways (especially professionally) I feel that isn’t true. Can I change that without making my illness worse? Can I change it at all in light of my illness? Perhaps this is a desire I need to let go of or find another way to meet. Perhaps I already have what I want but because of internalized sexism I don’t value it because I’m valued for feminized things.

June 22, 2018

It is remarkable how easy things are when I don’t have a migraine. I feel lighter, moving my body is easy, thoughtless, pleasant. I want to nap for the pleasure of it, instead of for relief and oblivion. It’s so hard to remember that I’m not lazy – I’m sick.

June 25, 2018

Yesterday did not quite go as planned. Maybe I was too tired. Maybe the dregs of the migraine the night before had me too foggy. Regardless, I did very little I’d planned to do.

How did the day pass? Mindlessly reading the internet, a trip to the drugstore, a short ballet practice, Deep Space Nice episodes, more mindless internet reading. The Illest Girl describes this – the low energy, the mindless distraction, the interminable boredom.

June 29, 2018

A friend told me that even though she enjoyed the dance exercise classes she took, she eventually stopped going because her technical skills never improved. I understood, but also felt resentment. For physical things, even when I’m able to do something long enough that I start to see improvement, I never get to keep it for more than a few months before I have to start over because of migraine. It is frustrating, demoralizing, embarrassing. I try to look at it positively or at least neutrally, to maintain a beginner’s mind, as the Buddhist’s say. But there’s always that awareness and even when things are going well I waste time and feelings wondering when it’s all going to fall apart again.

Doing things for their own immediate enjoyment seems to be the way around this, but it conflicts with the goal-oriented nature of … everything I’m surrounded by.

The point of health insurance companies is to deny claims and we should destroy those useless suckers

Canada’s medicare doesn’t cover drugs. Provincial drug benefit programs fill in some of the gaps, but often have very limited formularies. Two of the drugs I take aren’t on my province’s formulary at all, two are non-benefit (they thought about covering it but decided not to), and one of my drugs is so new they haven’t decided yet whether they’re going to cover it.

Three of my medications are covered. These drugs cost me about $30/year. The others run about $18,000/year.

But, as a lucky person, I currently have private insurance to pick up medicare’s slack. As a very lucky person, I’m actually covered by two plans and my most expensive medication (~$13,000/yr) is free for the next 8 months through a drug company program.

But to get those insurance companies to cover ~$3000 of the remaining $5000 of drug costs, I have to do a lot of paperwork, and I have to get my doctor to do a lot of paperwork.

In addition to being a huge invasion of privacy, why the fuck should my doctor have to explain to an insurance company why they’re prescribing me something? Is the insurance company going to notice an error in the prescription? Do they know more about my health and medicine and have a better idea? No – the doctor is a doctor, the insurance company is a fucking soulless rentier who has no medical expertise what-so-fucking-ever.

The insurance company is banking on the paperwork process being enough of a hassle to stop most people from getting the coverage they’ve paid for. Determined folks might get through the first few steps, but it takes a truly broke and organized and maniacal person to finish the process – especially once the first denials come back.

And then you have to repeat the process every policy year.

There’s a shortage of doctors in my area. My GP retired in January and I’ve been looking since then for a new one with no luck. There’s not even a waiting list I can get on. So I go to the overwhelmed student clinic where appointments can take a month or more to get and last 10 minutes.

Instead of talking to my doctor about how to better manage my medications’ side effects or risks of a treatment that’s otherwise working well, she’s going to spend the appointment filling out repetitive forms justifying her professional medical opinion for two insurance companies.

I spent two hours today doing insurance paperwork and expect to do hours more, my doctors are going to spend at least half of my next 3 appointments doing insurance paperwork.

Private insurance is a drain on the public healthcare system in Canada and the utterly pointless and overly detailed paperwork they force patients and doctors to do over and over again is just the tip of the iceberg. I’d like to see it banned entirely and I’d definitely like to see Canada (and the US!) ban insurance companies from requesting justifications from healthcare providers for prescriptions and other treatments.

Women on the far right

Women may not always be very visible in far right movements, but they are absolutely part of it. The far right (in some places) is starting to make some concessions to women’s rights while emphasizing xenophobia, which attracts many (white) women who are playing more prominent roles in far right movements.

Scholars, policymakers and the media have made great strides in understanding the role of masculinity in attracting men to far-right groups. But we have paid less attention to the potential for (re)framing femininity, women’s role in the nation, or discussions of women’s right to be used for recruitment or radicalisation by far-right political parties and movements. There is also scant discussion of the potential for women’s anger, their greater vulnerability during economic crises, or how the disproportionate impact of public service cutbacks on women is influencing their support for far-right politics.

via Women are joining the far right – we need to understand why | Cynthia Miller-Idriss and Hilary Pilkington | Opinion | The Guardian

I’m always fascinated by the role right wing women play in constructing and reproducing the imagery of white supremacy and fascism – the obsession with nostalgia and an imagined recent and ancient past, gender roles, whiteness. For example.

Motivation comes after action


From captain awkward

“Thoughts influence behavior, which influences outcome, which in turn feeds back into your thoughts.”

via Guest Post: Breaking The Low Mood Cycle | Captain Awkward

One day when I was feeling particularly terrible about migraine and all the things I want to do and can’t, I made a big list called “There’s always something I want to do that I can do!” and put it on my fridge.

Maybe I’m pretty sick one day and I can’t do the data analysis I want to do, but I can take a nap – taking a nap is a delicious thing that I want to do! Maybe I’m a little sick one day and I can’t make heads or tails of the paper I want to read, but I’d really enjoy watering my plants and it needs to get done and doesn’t require me to recall linear algebra.

I still grieve over things I can’t or couldn’t do, dreams I can’t pursue. And I think it’s ok to be sad or frustrated at what migraine steals from me. But it’s easy to let that grief and sadness get too big, to do nothing at all when I can’t do the big, important thing I want to do.

There are smaller, easier things that I want to do to – writing letters to friends, reading novels, dusting my plants, taking a slow walk along the seawall. When I do the smaller things, I can let in some happiness and contentment alongside the grief and anger and fill my life with things I want to do, even if they aren’t all I want to do.

Setting up Thunderbird with conversations and snooze

I’ve gone through what feels like every email program out there in the last 6 months with increasing levels of frustration. I’ve found lots of programs that look slick and help me get thru my email faster and even prioritize things but have annoying to horrifying features like

  • randomly and silently fail to send or save emails
  • 30+ crashes a day after about 2 weeks of use and a $70 yearly pricetag
  • selling everything about my inbox to anyone who asks
  • making it impossible to change the font size
  • storing my login credentials to all my email accounts with god-knows-what-security on their own servers
  • garbage search (Newton was particularly awful in this regard. It can only search the last 2 weeks of messages and doesn’t tell you)
  • business models that amount to trying to get bought out by Google
  • fails at multiple accounts
  • only works with gmail
  • looks like instant messaging
  • groups by person instead of subject
  • can’t snooze emails
  • inability to edit drafts

I started my tour of email programs with Thunderbird because I like that the Mozilla foundation doesn’t sell user info as a business model, it’s open source and old and so has lots of documentation and online help, and is customizable through extensions. Surprisingly I couldn’t find an extension that did email snoozing, so I gave up and tried all those terrible other email programs.

It turns out that I should have tried harder to find extensions that did what I needed because, in the end, Thunderbird is what I’ve come back to.

Snoozing in Thunderbird

At the height of my email despair, someone clued me in about mailmindr. It’s not the most intuitive to set up and is somewhat roughly translated from German, but after the initial fiddling, it works just like I want – I click the “Add Reminder” button, choose an amount of time to disappear a message from my inbox, and then I don’t see it again until the time is up.

To get messages to disappear from your inbox until you want to deal with them, you have to change the settings in the Inbox Zero tab of the mailmindr preferences and tell mailmindr what folder you want to hide messages in while they’re snoozing. I creatively called this folder “Later.”

A separate window with a list of emails that it’s time to revisit will pop up by default. I didn’t like this behavior, but you can deactivate it by unchecking the “Show list of pending resubmissions” option. (Snoozed emails in mailmindr are called “resubmissions”)

Mailmindr is actually a quite flexible and powerful message reminder tool and snoozing messages is just a part of what it can do. If you need stuff moved around or marked or labelled in your inbox with time-based rules, mailmindr might be able to do it for you.

Conversations in Thunderbird

I prefer my messages grouped in conversations, which Thunderbird doesn’t do by default. Thunderbird Conversations works well for this. It’s important to remember to turn on View -> Sort By -> Threaded to get your inbox organized properly.

This extension unfortunately hides the “Add Reminder” button from mailmindr. You can still snooze your emails though! Either

  • right click an email or its subject and choose “Set resubmission”
  • get the add reminder button back by clicking the three dots in the corner of an email and choosing “view using the classic reader”

If you don’t like how Thunderbird looks, it has many, many themes to choose from. I like Monterail Dark.

I like to pay amounts I can afford for tools I use regularly. Thunderbird has easy donation and subscription options as does mailmindr.