Author: Bubbles in the Brain

5 things to help you sleep

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We all know the importance of a good sleep, particularly when you are also trying to deal with health conditions. Today I want to share some of the things I use to get the best night’s sleep I can, even during a flare-up.

None of the links in this post are sponsored; these are just things I have tried and really like. They aren’t going to cure insomnia, but they might help someone who is just having a bit of trouble.

Getting shut-eye

Many people find it hard to sleep in a room without total darkness. I’m not one of them, but I do have a lot of trouble keeping my eyes closed. They like being open. And when they’re open, they like looking at things, which is not helpful when I am trying to fall asleep. Accordingly, I wear a blindfold/sleep mask at night.

Some people prefer a style that doesn’t place pressure on the eyes – this one seems to come pretty highly recommended – but due to my aforementioned issue with keeping my eyes shut, I like one that rests on the eyelids. I prefer mine thick and squashy with no harsh edges digging in, like this one from Peter Alexander, or this one from Kmart.

Those who don’t want anything on their face at all may prefer to explore options such as blackout curtains, and, if they have electronics in their rooms, covering the lights with dimming stickers.

The nose knows

Whenever I find myself entering a rut where I’m struggling to get to sleep multiple days in a row, I always go back to certain rituals that help me sleep, because my body associates them with sleep. One of our most powerful senses for associating one thing with another is the sense of smell. Certain scents to me – lavender, chamomile, and clean fabric, for example – immediately say to me “sleep”. Finding scents that make your brain go “mmm…sleepy” can be really helpful in getting you in the right headspace. My favourite thing to use is Lush’ ‘Sleepy’ lotion. You might find a body wash, pillow spray, or essential oil that triggers a similar reaction in you.

Under pressure

Weighted blankets sort of blew up as a trend in the last few years, but they have a very legitimate purpose in calming people. When I feel the weight of mine settle over me, I start to relax instantly. The gentle pressure feels like it makes things hurt less. That may be entirely a placebo, but I don’t care – it works for me. Mine is 11kg, and I wish I could go heavier, but it’s best to start lighter and work up for your first one (I started with 6kg). The general guidance is not to go heavier than 10% of your body weight (although I find that is not enough for me). Here’s a good article on picking the right one for you (FWIW, glass beads are much more environmentally friendly).

Hit it where it hurts

Even in hot weather, heat is the only thing that does anything for my endo pain. Keeping the room cool and using my plug-in Heat Buddy electric heating pad does so much to help soothe my pelvis and let me relax enough to sleep. It’s not going to cure pain, or even get me to sleep during a really bad flare-up, but when I’m just experiencing that aching discomfort that plagues those of us with endo, this thing is a life-saver. Similarly, when I have back pain, I swear by the Deep Heat back patches.

A bedtime story

Normally, I like to fall asleep in the quiet. Sometimes, however, that just doesn’t work for me, and I turn to a guided meditation. I’ve written about Sleep Cycle before – they have some guided meditations to take you to sleep. My favourite is Body Guide by Kina Nyman. However, when I’m really struggling to sleep and Kina has failed me, I turn to the weird, rambling drones of the Sleep With Me podcast. I tend to skip the introduction, which is relatively wakeful, and jump straight into the strange stories that follow. Their dreamlike quality soon has my brain drifting into my own surreal subconscious.

Of course, these things are all supplementary to the usual “sleep well” advice, like drinking plenty of water (something I’m excellent at doing), not looking at screens an hour before bed (something I’m terrible at doing), and having a strong bed-time ritual to help signal to your body that it’s time to get ready for sleep (something I’m pretty patchy at doing…which sort of defeats the purpose).

In addition to the above I’ve also tried things like moon milk, which was nice enough but really didn’t seem to affect my sleep, and sleep supplements like valerian (smelly and useless) and melatonin (much more effective, but leaves me groggy the next day). I don’t want to recommend trying supplements, though, as I think that is a very personal decision that is best explored in consultation with a health professional.

I hope some of these recommendations can be useful to my fellow spoonies! Sleep well, and sweet dreams.

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I’m having a flare-up. Should I go to hospital?

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It’s a question I see a lot in endometriosis support groups: when is it worth going to the hospital?

It’s no secret amongst people with chronic pain – and, I suspect, particularly women and femme-presenting people with chronic pain – that going to hospital is sometimes the opposite of helpful. You will often have to wait in the emergency room for hours before getting a bed, which can be deeply uncomfortable. Once you’re in a bed, you are usually offered a panadol before anything else, and have to wait to demonstrate that that’s not doing anything before you’ll be offered a stronger option. Typically, I eventually get offered codeine, which I hate taking due to the side-effects and the fact that it doesn’t really help my pain – it just makes me too spacey to react to it normally. However, I’ve never been offered an alternative – if I don’t take it, I tend to just get ignored until I eventually cave and accept it, because “there’s nothing else we can really do for you.” Upon taking it, I tend to be sent home pretty quickly. For those who are offered stronger medications – morphine or ketamine, for example – the relief lasts as long as the drug. Once the medication is out of your system, you are back to being in pain until the flare-up ends. In my experience, hospitals have been reluctant to offer me a bed when all they can offer are painkillers, whatever the strength, although I know others who have been able to get ketamine infusions.

From the perspective of the patient, the offers of hard drugs can create hard decisions. The side-effects of strong medication, whether opiate-based or not, are really not fun. Constipation is the least of the issues you may have to deal with. Many of the options are also addictive.

Then you have the problems with perception. If you don’t seem to be in enough pain, you might not get taken seriously. If you cry and scream, you’re ‘hysterical’. If you ask for a particular medication because you know that actually works, you risk being labelled a drug-seeker.

Overall, the hospital experience for an endometriosis flare-up can suck from beginning to end. However, if you are suffering from excruciating pain, it may be what you need.

Here are some circumstances when I would always consider a visit to hospital:

  • If you had surgery. It can be hard to differentiate ordinary post-surgical pain from bad post-surgical pain, so if you have recently been under the knife and are experiencing serious pain, it can definitely be worth getting it checked out. If you can wait to get in with your specialist, by all means, do, but if the pain is too intense or you are too worried, it is always better to be safe than sorry, particularly if you are also experiencing a fever or there is something not right with your incisions.
  • If the pain is different to your normal pain. My usual endo pain is a strong ache, low in my abdomen, with a sort of uncomfortable pins-and-needles sensation. However, if the pins turn into large knives, or the ache becomes a fire, or the pain otherwise feels qualitatively different, that’s something I want to get checked out. You never know what else might be going on that your endometriosis symptoms might be masking. You don’t want to find yourself in surgery for a ruptured appendix or ovarian cysts because you just assumed that your endometriosis was up to new tricks.
  • If you have other symptoms along with it. If your pain has become sufficiently bad that it is causing you to shake, vomit, or black out, it is definitely time to get help.
  • If it is simply too severe for you to cope without serious pain relief. Sometimes, it does get beyond the point of tolerance, and there is absolutely no shame in seeking medical help to reduce the severity of the pain, or increase your ability to tolerate it. Remember that your tolerance may not always be the same; pain that you could cope with on Friday may drive you to the hospital on Monday, because you are too tired, or too stressed, or you have been feeling pain too long, and you just can’t cope as well as you could last time. That is absolutely fine, and you should never feel bad about that.
  • If the flare-up has lasted for an unusually long time. If it goes on for longer than usual, or longer than you can cope with, you may need the sorts of relief only a hospital can provide in order to give you a break, even temporarily.

Ultimately it is a judgement call, and the person who is best placed to make the decision about when to go to hospital is the person in pain (which feels really unfair, because I know I certainly don’t make my best decisions when I feel like there’s a live, cranky tiger in my uterus).

I should be clear that I don’t want people to be put off hospitals by what I have said above. Whilst there is often little a hospital can do for someone suffering a chronic pain condition, and whilst one bad doctor or nurse can make the whole experience hellish, sometimes a dose of medication and a kind medical professional can make the world of difference. I want to acknowledge the reality (and my own experience) that a trip to emergency is generally pretty awful, but that doesn’t mean it is the wrong choice.

I hope this is of some help in guiding my fellow sufferers in this decision. If you want a TL;DR – better safe than sorry!

The language of ableism

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CW: ableism, transphobia, suicide mention, racism

So, you know how you like one post about cats on facebook, and then you only get posts about cats in your feed after that, whether you like it or not? Well, recently facebook did that to me with a bunch of posts about people with disabilities. And that’s fine – I don’t mind having a feed with disabled people doing cool things. What I mind are the comments.

I’m going to take you through three of the posts I read and how some of the comments were problematic, because I really, really, really want people to understand that their words matter. I also hope the sheer number of comments on these posts demonstrates just how wide-spread these attitudes are.

The first post was a video about a promising 8-year-old US gymnast with no legs, Paige Calendine. It was posted by one of those pages that curates ‘feelgood’ stuff, and captioned ‘There’s nothing impossible when you want to follow your dreams.’ The second was a video of a talented Japanese violinist, Manami Ito, who lost one arm to a car accident and now uses a prosthetic to play. The third was about a US athlete/body builder called Woody Belfort, who runs ‘aspire to inspire’, and uses a wheelchair due to cerebral palsy.

Some examples of the comments on the video about Paige (please note that I have edited these comments in some places for length/clarity; however, I have not removed anything critical to context):

  • “She is an example that there is no such things as a physical disability it all in your head as long as you have a strong mental aptitude you can do whatever you want it might be a little hard but it is possible.”
  • “Inspiration to us all that nothing is impossible when you put your mind to it.”
  • “Anyone who says they can’t do something needs to look at those who were never supposed to achieve anything. We can do anything we want and I hope they look at this girl who doesn’t believe she’s handicapped. To her its another challenge in life.”
  • With all the negativity around at the moment what a joy to see someone with REAL hardship being such an inspiration.”
  • “If only our young could be as positive about life as this young lady. They don’t seem to cope with just being alive let alone any of life’s hurdles.”
  • “She is absolutely amazing. I see no disability at all.”
  • “Way to go! If you believe in your self you can do anything you set your mind to.”
  • “This is why I dislike the term disability as this young girl has far more ability than I do 🙂 keep proving the world wrong girl”
  • “She is very special Doesn’t let her handicap get in her ways she just follows her dreams”
  • “What a brave young girl with ambition despite her disability. I am sure one day she will succeed.”
  • “What an inspiration. go girl” (Many other variations on this theme)
  • “When your child says I can’t do that show them this video”
  • “What an inspiration ! Never let anyone say you can’t do that!”
  • “All the snowflakes should look at this sweet girl who didn’t let anything stand in her way. Sweet girl best of luck to you as your inspirational life continues.”

It went on that way for hundreds of comments. All were basically variations on the same two themes: Paige is an inspiration, and nothing can stop you if you just believe in yourself. A third, less prevalent theme was the idea that people with any problem less significant than being born without legs really don’t have any room to complain about anything, possibly ever.

The comments on the video of Ms Ito were similar:

  • “My father always said “Where there is a will there is a way.” I hear that quite often in my head.”
  • “This girl is a true inspiration. Her message is Nothing is impossible is you are determined”
  • “I am humbled my so called problems are nothing amazing video and performer”
  • “This is a shining example to people who say I can’t…….physical limitations should not your passion…amazing !!!!!”
  • “This redeems my faith in human nature. I’ve fought debilitating MS since the day of 9/11 & to see such a heroic task, it makes me realise my MS could be so much worse; just saying.”
  • “A very talented young lady who has worked hard to overcome her handicap.”
  • “Inspiring lady what a talent she has. Excellent. And people whinge about their lives we don’t know how lucky we are to have our limbs unlike some.”
  • “I don’t wish to focus on how hard her life is, but to admire her for the will and determination to overcome her obstacles and do what she wanted to do.”
  • “Her joy and gratitude of praise cannot be contained and she made a wonderful expression of it amidst her handicap. Conclusion, if she has that joy and gratitude why can’t we?”
  • “Amazing, now the trans that want us to adjust for them and have no physical impairment at least nothing comparable. But this Amazing girl makes her own and is magnificent. Grow the hell up the small and I mean small majority oh wait I mean minority that never learned how to work. You are so out numbered. It’s time you stay in your place!!!!!”
  • “Apparently, CAN’T” is not in her vocabulary.”
  • “Seeing this I feel that the definition of hardships should be rewritten.”
  • “Anything is possible. Believe! Faith and opportunity will be. Again, he can who thinks he can. This was written in my elementary school autograph book.”
  • “Incredible! She is a living proof that as long as we set our minds on achieving anything, we can be successful regardless of any setbacks.”
  • Awesome brings tears to my eyes! I am always fascinated with the way handicapped Children find to excell and we wine about everything!”
  • “I do really salute her cause despite of her disabilities she chose to live normally, happily and productive ,while some normal people keep complaining about their lives when it gets rough and worst is that some ended by committing suicide. For my 30years of existence I’d never heard someone who has disabilities commit suicide but only heard and saw that they are very talented they played guitar ,piano , violin ,can read ,can walked by themselves and so on and my huge respect goes to them. And my final thoughts was that i felt envy to her cause i have no disabilities but can’t play the guitar which she is good at 😦 :). But somehow I can play a guitar and that is what makes me proud of. 🙂 Go girl!keep being angelic and inspiration especially to hose normal people who has been into depression.”
  • “When there is a will”
  • “Them does eat dog an frog so what she doing not hard”
  • “She’s lucky she has a robot arm. I know a lot of people with no limbs who don’t have that privilege. AND they can still play the violin. With their feet”

Here are some of the comments on Mr Belfort’s feats (which include rock-climbing and weight-lifting), which followed some different themes:

  • “This is very inspirational…much respect to his determination, dedication and hard work. This man doesn’t have a victim mentality or the spirit of a quitter.”
  • “I’m so embarrassed……..when I complain about, sore legs, sore arms, to cold, to hot, not enough time….etc etc…this dude has completely changed the way I think….RESPECT!!!!!!!”
  • “AMAZING!!!! Mind over matter and his mind doesn’t dwell on the condition of his legs! A true inspiration!”
  • “This dude is phenomenal!! He didn’t let any disability hold him back!”
  • “He’s not disabled” (Same commenter also said “he isn’t crippled” and “he’s not freaking disabled”)
  • “How does he hold his legs straight outward if he is paralyzed?”
  • “Wheelchair bound or not, what he does is amazing and inspirational”
  • “Prayers and willpower can accomplish so many things in life don’t stop keep on going you were definitely live in each day to the fullest you truly don’t see yourself as a handicap and that’s what’s got me this for I believe You are a inspiration to others”
  • “This person is amazing. What an inspiration. There are no excuses only how much determination do you have.”
  • “People like this should make us all truly appreciate, value and reflect on all we have and are capable of doing! So many reasons and excuses why we “can’t” do XYZ…”
  • “He does things that I labelled able bodied cannot do. That only cements the notion “disability is not inability” With appropriate environment, everyone can function perfectly”
  • “Genuinely not hating at all, but I’d call him strong, not incredible. Everyone has their disabilities one way or another, and to succeed we have to overcome them. Save the world incredible for those doings things to help others.””He’s showing boys and girls who are in wheel chairs a positive role model & that they are not limited by a disability.”
  • “He’s teaching others not to feel sorry for themselves even if your current situation is not ideal of perfect to just make the best from what you have and nothing is impossible if you put your mind to it!!!”
  • “If he can bend his knees he can move his hips to walk? I am just asking because he has so much strength i believe he could will himself to walk”
  • “first of all big respect to this guy. Inspiring great work..but I can’t see no reason for him to be in a wheelchair.”
  • “He can move his legs so why if he in a Hegel Chair”
  • “I’m not convinced he’s fully paralyzed”
  • “Ok, seriously if he unstraps the wheelchair at this point he could walk if he wanted to, at least hop on one foot, by sheer will alone!! Incredible….! And we have the nerve to make excuses”
  • “The next time someone tells me they can’t I’m going to refer to this guy! He is amazing!!”
  • “His mind is stronger than his body. This guy is awesome. My mind is not as strong as his. So I feel I am mindicapped instead.”
  • “I noticed he can move and control his legs, so why would he be in a wheelchair????”
  • “That just goes to show that you can do anything despite your disability or anything like that don’t let nothing stop you despite of yourself”
  • “Example To the complainers . If this man can be doing this instead of complaining how much more you.”
  • “What do I have to complain about?? Nothing when I see people like this doing so well with less than me.I can use my legs!”
  • “How is he moving his legs and still needs a wheelchair?”
  • “instead of this, he should focus on any desk work, so he no need to move. if he can’t walk, his energy goes to his brain so it would work better than others.”
  • “Is he disabled I see him bending at the waist and bending his knees”

All of them go on and on like this for bajillions of comments. I’ve probably gone overboard in showing you this many, but I really wanted to try and make it clear how common these attitudes are.

Now, buckle in, because I am about to go on a rant about why exactly these comments are a problem.

These comments basically fall into the following categories:

  • This disabled person is an inspiration
  • Mind over matter
  • This person is strong/talented/has abilities, so they aren’t disabled (because disability is a bad word)
  • This issue is bad, so that issue isn’t
  • Using a conversation about a disability to promote a random bigotry
  • This person doesn’t fit my ideas about disability, so they aren’t disabled

And, there’s an added bonus at the end that I haven’t provided examples of yet, but will later: “My ideas about disability as an able-bodied person matter more than yours as a disabled person.”

Let’s start breaking it down.

This disabled person is an inspiration!

I’ve talked before about disabled people and inspiration porn. Tl;dr – the perfect disabled person is usually visibly disabled, but has unending optimism and has managed to ‘overcome’ their disability by doing something you wouldn’t expect them to be able to do (like Paige, Ms Ito and Mr Belfort). This allows people to put them on pedestals, and treat them as inspiring.

Now, what I’m about to say about how this is a problem doesn’t necessarily apply to Mr Belfort. He makes it his mission to inspire people – disabled or not, as I understand it – to push their limits, train hard, and smash their fitness goals. That’s fantastic. He has consented to being an inspiration. He works for it.

But Paige and Ms Ito haven’t. They both have passions – gymnastics and violin. They want to be able to pursue those passions. However, let’s be very clear about one thing: the world will never see them as a gymnast and a violinist. They will see them as a legless gymnast and a one-armed violinist. They aren’t every going to be allowed to be ‘normal’ in that context. Simone Byles may be an inspiration to other aspiring gymnasts, but she isn’t generally described as inspirational to society, despite her incredible talent and physical prowess, because she is able-bodied. However, whenever society sees a disabled person doing something that lots of other non-disabled people do that disabled person is automatically an inspiration.

The biggest problem is, that isn’t confined to people displayed particular talents. Disabled people are called inspirational simply for living their lives. Disabled children are “inspirational” for going to school and having friends – doing things that, absent a disability, no one would consider remarkable. Disabled adults are “inspirational” for driving and having jobs. It doesn’t seem to occur to people that putting disabled people up on a pedestal like this is highlighting our differences and singling us out for simply trying to exist in society, pursue our passions and live our best lives, just like everybody else. It’s ‘othering’ us. It makes us more alien. It makes us less human. It is also downright patronising when it suggests we are exceptional simply for existing.

People with endo often fight through pain every single day, because they have to. Rather than calling them inspirational, perhaps we could consider ways to make their lives a little easier – which ties into the second problematic response:

Mind over matter!

Like many of the problematic responses on this list, this one ties into the first category. It is displayed in comments above like “nothing is impossible when you put your mind to it!” Well, in the inimitable words of Stella Young, “no amount of smiling at a flight of stairs has ever made it turn into a ramp. Ever.” (And if you haven’t watched that Stella Young video I’ve linked, go and do it. Now. It kind of makes my whole post a bit pointless because she covers all of this beautifully, concisely and hilariously.)

Mind over matter is problematic in three ways: first, it ignores the very real limitations on people with disabilities that do, in fact, make some things impossible. Second, it suggests that any difficulties faced by disabled people are the disabled person’s fault for not being sufficiently determined. Third, it takes the onus off society to make any kind of accommodation for disabled people, because it suggests that our problems are ones that we can fix. But, as Stella Young points out, we are often more disabled by a society that can’t accommodate than by our own disabilities.

Let me give you an example. Blind and visually impaired people are often prevented from doing things that are super easy for those of us with better vision, because the world often forgets that people with vision impairments exist. Stop for a moment, though, and imagine a world in which everyone captioned their pictures with an imagine description, offered audio-descriptive functions, used CamelCase in their hashtags so screen readers could pick up on them, and printed their materials – whether books, brochures or menus – with braille as well as text. I’m not saying that is a full list of structural inequalities making life more difficult for the blind or vision impaired, but they are relatively small actions that society at large could take to remove some barriers. However, if we say, “no, blind people just need to try harder to overcome these barriers. It’s not on us,” then nothing will ever change.

This person is not disabled, because being disabled is bad

In large part, I think, this is due to people believing that disabled is a bad word. Read this quote from Paige Calendine’s father:

“Because she was born without legs, she doesn’t know it’s a disability,” Sean explained. “We decided right away that we would not treat her like she has a disability or make things easy for her. We wanted her to learn how to adjust to the real world.”

I’m sure you can see a smattering of the problems I talked about above in that last sentence, but let’s focus on the other things he says for now.

The only reason you can have for not wanting someone to think they have a disability, or for not wanting to treat someone like they have a disability, even when they literally have no legs, is because you think disability is a bad thing.

Now, I’m not going to pretend being disabled is a barrel of laughs. The reality of having a disability often sucks beyond the telling of it. However, that’s not what people mean when they say “you aren’t disabled!” They mean, “don’t call yourself disabled, because I think disabled means ‘less than'”. If people didn’t perceive the label “disabled” as meaning something not quite the same as real people, as normal people, I think we’d have a lot less of a problem embracing ‘disabled’ as a simple factual description, like ‘brunette’ or ‘teenager’. We need to stop loading it up with value judgements.

This is present in all the comments above claiming people can’t be disabled if they aren’t sufficiently inhibited by their disability – if you seem like you can do ‘normal’ things, you can’t be disabled, because disabled people aren’t normal. I’ve seen it myself in real life – even though my illness has real impacts that do, in fact, disable me in sometimes very obvious ways (for example, when I need to use a wheelchair), I am a relatively functional member of society. I’m articulate, intelligent, highly educated, and I dress well. My body looks like most abled bodies. People are shocked and uncomfortable when I claim the label disabled, and they often can’t explain why, but it is clear they think I am accepting a negative label, akin to calling myself a bad person (people do the same with the descriptor ‘fat’, although that deserves a post of its own).

It shouldn’t be this way. No one should have to feel that there is a sense of shame or inequality associated with embracing a word that describes exactly what they are.

This issue is bad, so that issue isn’t

Anyone who has ever complained about anything has been told this at some, point, I think. You don’t like your meal? How dare you! There are starving children in Africa! You got a C on an assignment you worked really hard for? You should be grateful you aren’t stupid like some children – Emma only got a D. You have endometriosis and have to suffer debilitating pain for the rest of your life? Cheer up! It’s not cancer!

There’s three problems with this sort of nonsense, of course.

First, it’s totally illogical to think that we can only measure our feelings by what other people have. If I can’t be sad about something going wrong at work because at least I have a job, would I be prevented from being happy about winning $5,000 on a Scratchie (I wish) because someone else won the Lotto and got $5 million? Of course not! So why am I not allowed to be sad about a bad thing just because other bad things also exist?

Second, another bad thing happening does absolutely nothing to make my bad thing less painful or depressing. If I break my arm, learning that someone else broke both arms isn’t going to make my broken arm hurt any less. Similarly, knowing that at least two other people in my life have had to endure the horrific trials of cancer doesn’t make my endometriosis any easier to deal with. Saying “at least it’s not” doesn’t reduce anyone’s pain, and it isn’t helpful. And yet people continue to do it to others and themselves. Look at the person above minimising their MS because they have all their limbs. MS can be an incredibly difficult disease to deal with! You’re allowed to have negative feelings about its very real impact on your life, no matter how many other people are missing limbs!

Third, as Stella Young outlines in her video, it objectifies the people who ‘have it worse’. Imagine being Emma and overhearing David’s mummy telling him he’s not as stupid as her. Imagine being the disabled person, going about their business, happy with your life, and basically being told that your situation is so pitiable that people should be glad not to be you. Can you imagine how it feels? You’re not a person in that moment. You’re a lesson for other people about how much life could really suck.

Super hurtful. Stop minimising people’s pain. Stop using people as lessons about how terrible life can be. Stop it.

Using a conversation about a disability to promote a random bigotry

You saw the comments up there using videos about disability (however wrongheaded) as a vehicle to promote transphobia and racism. There’s never an excuse for that. Disability is not an excuse for that. Using other people’s disability as an excuse for that makes you a bad person.

This person doesn’t fit my ideas about disability, so they aren’t disabled

Hopefully some of the comments on Mr Belfort’s video with people questioning whether or not he is disabled have demonstrated how limited people’s perceptions of disability are. If they are to be believed, if you can use your legs for anything, you can walk, and if you can walk, you don’t need a wheelchair. In fact, the majority of wheelchair users have at least some leg function. I have used a wheelchair in the past, even though I have no leg or spine issues, because a wheelchair is a tool that improves mobility and I needed it.

This is an issue that isn’t confined to wheelchair users, of course. People with disabled stickers on their cars, people asking if they can take a seat on the bus, anyone with an invisible illness who needs an accommodation – at some point we all run into the “you aren’t disabled” nonsense. Society requires disability to fit a limited set of preconceived ideas to be valid.

This is a huge problem for people with invisible disabilities. People with with disabled stickers on their car are often the target of harassment by well-meaning busybodies who want to defend the integrity of the disabled parking spot by saving it for people with “real” disabilities. Disability can look like it does in the videos above, or it can also look like me and a myriad of other “normal” people. Yet us ostensibly “normal” people can suffer excruciating pain or overwhelming fatigue if we have to push beyond our limits, such as having to walk too far with heavy shopping, or not being able to sit down on a thirty-minute bus journey.

If someone tells you they are disabled, you do not get to decide they are not. This leads me handily to my next and final point…

Don’t argue!

On some of these videos, a number of disabled people and their loved ones fought back against some of the problematic comments above, linking to the Stella Young video, pointing out that their disabilities carried real limitations, and objecting to being called inspirational.

And of course, because this is the internet, everyone listened to the people affected by these issues, reconsidered their position and acted with more consideration in future.

LOL! Wouldn’t that be nice?

Instead, commenters called the disabled people and their allies overly negative, overly critical, deliberately looking for problems or things to take offence to, sensitive, and continued to :

  • use language like “physical deformity” and “crippled”;
  • refuse to accept that ‘disabled’ is not an insult;
  • assert that the true disability is our attitudes;
  • frame objectification as complimentary; and
  • accuse us of playing the victim.

I was always amused, as a lawyer, when clients without any legal qualifications at all tried to explain the law to me. I’m less amused, as a disabled person, when I see people without a disability try and tell disabled people how we should think, feel, and experience our disabilities.

Here’s a tip: if you have no relevant experience in an area, don’t try and talk over those who do. It’s deeply condescending, hurtful, and just plain ignorant.

So, this has been a very long post! Congratulations and thank you if you are still with me. I would love to hear your thoughts in the comments, and to hear from any disabled people who have experienced this in real life. I think collecting our stories is vitally important to demonstrate just how pervasive and harmful these attitudes can be.

How to get a flat stomach in only three hours!

Published on by Bubbles in the BrainLeave a comment

Trigger warning: weight loss and surgery. This post includes images of before and after weight reduction surgery.

Ok, so if you read my previous post, you already know I had liposuction. Forgive my title. It did give me a totally flat stomach in three hours, though. Spoiler alert.

In today’s post I want to give you the nitty-gritty of what the surgery was like, what the recovery was like, and what the results were.

I went through Cosmos Clinics, which have clinics in Sydney, the Gold Coast, Melbourne, Canberra, and Adelaide. I’ll start out by saying I was 100% satisfied with my experience and I would happily recommend them to anyone considering this sort of body-altering procedure.

The first appointment

On my first appointment, my doctor asked what I wanted. He was pleased that I was realistic – basically, I just wanted my old body back, which was perhaps two sizes smaller. I explained my reasons, which you can read about here. He explained that that was totally achievable, and talked me through how the procedure would work. We did discuss Cool Sculpting, which is a permanent fat-reduction technique, but I wanted more dramatic results than Cool Sculpting (ideal for smaller, stubborn pockets of fat) could realistically achieve.

It’s never a fun experience stripping down to your undies (or less) and standing in front of a mirror so a total stranger can scrutinise your wobbly bits, but my lovely surgeon made it as pleasant an experience as possible. He was funny, but the cracks weren’t about my insecurities, and he was always professional. What made me realise I wanted this man to operate on me was his enthusiasm for what he could do. He didn’t see my body as ugly or nasty; he saw it as an exciting renovation project. He was already mentally sketching out what he could do, and how he could sculpt something amazing out of what he saw. It was really infectious, and it filled me with confidence, because he had confidence in himself.

We decided to concentrate on my thighs, my stomach and flanks, and the little ridge you get under your bra’s underwire. He talked me through every step of the surgery, what tools he’d use, the benefits, the risks, the time, recovery, and what I’d need to do to help myself afterwards.

Cost

The total cost for the surgery was about $12,500. That didn’t include the post-surgery compression suit ($300-ish) or lymphatic drainage massage (not necessary, but very helpful). It’s not cheap, and it’s not covered by insurance. If you want the same areas done as I did, that’s going to be a ballpark for you. Smaller surgeries will cost less. Larger ones will cost more.

Surgery

On the day of the surgery, I got to strip off again and have photos taken of my thighs and torso. That’s also not fun, but again, my surgeon was great about it. Then, I popped some pills (valium was one of them, and I think painkillers were another), and wait for them to take effect.

From then, I remember being lead through to the operating room, taking my gown off, and lying down on the table. That’s all I remember for the next two hours at least, because the drug combination makes you forget everything, even though you are completely conscious (technically speaking) for the entire procedure.

My memory starts to come in again towards the end of the procedure. I was on the table a little longer than predicted, because my belly fat was incredibly stubborn and took twice the time it should have done to remove. Unfortunately, along with the memory came a lot of unpleasant sensations – pain, mostly from the work being done on my ribs; embarrassment due to being exposed and naked on an operating table in front of three people (even though none of them were remotely bothered, of course); and cold. I get really cold during surgeries. Thankfully the lovely surgical nurse kept giving me something heated to have on my chest.

What was happening, during both the parts I don’t remember and the parts I do, was that my fat cells were being blasted with ultrasound, shaking them loose. Then, a little tube was being inserted under my numbed skin, and sucking the fat cells right out. My surgeon sent me a picture of all the fat that was removed afterwards – nearly three litres. Fat, sitting by itself in a jar, looks really, really gross.

What did it feel like? Well, the part I remember, I could feel a tube moving under my skin around the underboob area. Medical peeps, feel free the tell me in the comments what the real name for that is. It felt like it was scraping against my ribs, and it really did ache.

Recovery

Afterwards, you are seriously bruised. I was purple for a few days, and then the greens and yellows came popping in. I looked a right mess. On top of that, the incisions are left open to drain, and it takes a few days for the leaking to stop. I think I had about 14 incisions – my inner and outer thighs, my hips, two on the underboob ‘lump’, and the rest on various spots around my front and sides. I was extremely tired, and very stiff and sore.

One thing my surgeon warned me about, and that absolutely happened, was serious body dysphoria. I felt like my body was a gross, scary alien. I cannot explain how dramatic the changes where – all my previous roundness had become the skinny flatness of the supermodel. My stomach was practically concave. My waist was lower – closer to my hips. There was a gap between my thighs. I thought I looked weird as heck. To be fair, my new and exciting colours (honestly, I was sooooo bruised) and leaky cuts probably didn’t help.

Recovery from lipo is rough, emotionally and physically. Apart from the dysphoria, and the guilt that brought on (how dare I hate this body that I paid so much for?), there was serious physical pain. I was bruised all over, and I felt it. My muscles were super sore, and it felt like my bones had been scraped bare by the tubes. Moving hurt – but you have to move, or you swell up. But not too much, or you’ll swell up.

You also have to do a lot of work. I was in a full body (underboob down) compression suit, plus a binder, plus a board that kept my stomach flat and prevented my suit from wrinkling up and marking my skin. Yes, it did have a crotch-hole, so I could pee without having to take the whole kit and caboodle off, but other toilet functions were a nightmare. Sleeping was sweaty hell. I couldn’t sit down because the board would either stab me in the tender, delicate thighs, or straight in the boobs.

You also have to massage yourself, firmly, multiple times a day, which also requires getting out of the suit. The massages hurt (but after a few minutes they actually feel really nice, because they feel like they are relieving pressure. You feel like a sausage in the suit, and the massages help address that).

After three weeks, though, I didn’t have to wear the suit at night. You feel weird without it, at first, like you are really exposed and delicate. My skin still hurt a bit, and it took several months to regain feeling in the skin on my sides.

I realise I’m probably making the whole thing sound like hell. I won’t lie. It was hard. But it was also worth it.

Results

So, let’s get on to what I know you want to know: what were my results? Well, here you go.

Four pictures showing the torso and thighs of a white woman in black underpants. In the top two pictures, she is slightly bulkier than the bottom two. Grey text over the pictures says ‘Photo by Cosmos Clinics’.

The top row is before. The bottom row is after. These were professional pictures taken by Cosmos Clinics. Please do not re-post these pictures.

As you can see, my waist is far more defined. My ‘hip dips’ are gone. My thighs don’t have a large a curve on the outside, and have more of a gap on the inside. My stomach is naturally rounded in both pictures, but afterwards the bump is smaller. There is a pouch of fat above my stomach that is gone in the after pictures. My waist position has also moved – it is noticeably lower on my torso in my after pictures, sitting in line with my belly button rather than above it. That was probably the the weirdest and least expected change for me.

I have no idea if the surgery had any effect on my weight in kilograms. I don’t make a habit of weighing myself. However, my waist size went from about a large 12 to a small 10. I can squeeze into a size 8 in some brands around the waist if I am willing to risk asphyxiation. My hips remain a firm 14, despite the reduction, because I have a generous bottom, and the doctor didn’t touch that.

Six months on

It’s now been 6 months since my surgery. My livid bruising is gone, my scars are neatly healed (similar to my endo scars, visually), and my body has retained the shape you see above. Despite the way it may look in the side photos, I no longer have cellulite on my thighs.

Because of my age and the fact that I didn’t have a lot removed, I’ve not experienced any loose or saggy skin, as you can see in the photos. However, I do find that my torso is more prone to dryness, so I’m more vigilant about moisturising there than I used to be (probably a good thing). I don’t have any more lipo-related pain.

I feel much happier now. I’m used to this new body – it’s not exactly the same as my old one, but it’s close, and it doesn’t look like I’ve been through the brutal hormonal changes I’ve experienced. I feel like I’m now officially out of recovery. I definitely do not regret the process, although I don’t think I appreciated how tough it would be before undergoing it. I’m incredibly grateful to feel this way again.

Whilst I am not open to commentary on my decision to have surgery, as I feel I covered in my previous post, I am more than happy to answer any questions you may have in the comments, so please feel free to ask whatever you like!

I had Liposuction. Here’s why.

Published on by Bubbles in the Brain1 Comment

TW: weight gain and loss, dieting, weight loss surgery.

2020 was the year I went wild with cosmetic things. I started using acids and whatnot on my face (good decision). I got my teeth whitened (very painful). I also had liposuction.

Why did I do it? Well, as so many people who have undergone hormonal treatments will know, the weight stacks on, and it doesn’t necessarily unstack when you stop. My weight gain started after a hormonal injection backfired and my pain spiked along with my dress size. Following that, I moved to the Depo-Provera shot, which didn’t do a whole lot for me on average (sometimes it worked brilliantly, sometimes it had no effect at all), and didn’t exactly slow my weight gain.

When I finally stopped getting the injections, the weight continued to come. I ate as well as I could, although cooking and meal prep was hard due to pain. Similarly, I was active whenever possible, but constant bouts of pain and illness made getting into a proper exercise schedule impossible. Whatever I was capable of doing, it wasn’t enough to successfully combat what the hormones were doing. It was as if my body thought some Frostpunk-style winter apocalypse was incoming, and it needed to shore up my fat reserves to ensure that I survived the coming terrors. Had that been the case, I’m sure I would have been appreciative. As this is pre-apocalypse Australia, I was not.

I want to be clear about a couple of things here. First, I support people having plastic surgery for any reason they want (leaving aside the issue of Bond villains trying to destroy the world). Second, I am not anti-fat. Third, I am pro body positivity.

With that in mind, let me explain why I chose surgery when it became clear that the normal methods were not working.

I don’t see my scars or my extra weight or my hormonal acne as a badge of courage or a testament to what I have been through. I’m not saying others can’t – whatever empowers you, friend – but I don’t. I would be just as brave and strong without them. Instead, they are visual reminders of the daily impacts endometriosis has had on my life. It has taken my freedom to be spontaneous and do things I love, my ability to live pain-free, and negatively impacted my career. With the weight gain, it meant I couldn’t wear the clothes I owned and loved. It took away a body that was familiar, and that I liked the shape of, and gave me a body that was strange and uncomfortable. I didn’t enjoy the sensation of my thighs rubbing together when I walked, or my tummy rolling when I sat down. I felt heavy, physically and emotionally. When I opened the wardrobe and could only wear a fraction of what was in it, I felt hopeless. When I looked in the mirror, I saw endometriosis looking back at me.

I love women in all their bodies. I don’t think beauty is determined by size or shape, and I don’t think beauty is the most important thing. But I didn’t love my body that way, and I didn’t feel beautiful. I felt sick – not because of the fat, but because of the endo.

To be extra clear: I wasn’t actually fat when I chose to get liposuction, and I don’t think fatness (or any other size or shape of human body) is inherently bad. It wasn’t my size that was bothering me. I’d gone from a very slim size 8 (prior to diagnosis) to a slim size 10, to a perfectly average size 12-14 by the time I had lipo. For context, I’m 178cm tall. My frame could carry another few dress sizes before people would start to view me as fat, I think. That wasn’t relevant to my thought process. It was the changes in my body, combined with the reasons for them, that had me so upset. The actual size and shape was not the issue.

So, left in a situation where my body was making me sad, but I couldn’t do anything about it, I chose to seek help. The doctor I saw was great (I went through Cosmos Clinic, and I will write more about my experiences in my next post). He was realistic about what we could achieve, and talked me through my options. We considered Cool Sculpting, which freezes away stubborn fat, but I wanted to lose more than Cool Sculpting would allow, and I wanted to lose it faster. I may still consider it for my arms, which I did not have liposuctioned, and which I don’t feel the same kind of heavy, anxious depression about.

I left the appointment with hope, and it made me sure – I wanted to go ahead with it. I wanted my body to change.

And I did.

In my next post, I will write about my experiences of liposuction – what the operation was like, what the recovery was like, and the thing I’m sure readers are most curious about: my results.

Note: I am very open to people commenting on this article. However, if your comment is to tell me that I’m lazy for not being able to lose weight, or that I wasn’t trying hard enough, or that I took the easy way out, I encourage you to consider whether the time making your comment could be better spent doing almost anything else. Similarly, if you want to tell me that my decision regarding my own personal body makes me a fat-shamer or a bad feminist, you have fundamentally misunderstood the post and my reasoning, and I encourage you to read it again.

2020: A Year in Books

Published on by Bubbles in the Brain1 Comment

2020 was the year all our plans got massively disrupted. You may recall my ambitious plan at the beginning of the year. Guess how that went.

Surprisingly well, in some regards! My hopes of travel and adventure were dashed, as they should be during a pandemic. I failed utterly at reading the New Testament. There was no one to bake for, working from home, so I didn’t really do much of that. The bushfires ravaged most of the places I was hoping to hike.

So what’s the perfect activity for a chronically ill gal craving mental stimulation? Reading! I read so much as a child, and this year really became the year I embraced that once again. In total, I had a goal of 32 books, and I am very proud to say that I managed it. As lockdowns continue across the globe, I thought it might be good for me to share 30 of the books I read, and maybe spark some ideas for you to add to your list.

Easiest read: ‘Midnight Sun’ by Stephanie Myer

Midnight Sun | BIG W
Image description: the cover of Stephanie Myer’s book, Midnight Sun, which features half a pomegranate with seeds dripping from it on a black background. The title and the author’s name are in white.

If you’re not a Twilight fan, this one is probably not for you. I am an unabashed fan. These books came out in my late teens, and I was the perfect age (and the perfect amount of angsty) to fall in love with them. Whilst I no longer think they’re the pinnacle of literary achievement, my nostalgia and enjoyment remains, and they even featured heavily in my honours thesis.

Accordingly, I was thrilled when Midnight Sun came out. It fills in a lot of gaps in Twilight (why does Edward pull so many weird faces? Does he realise it’s weird to watch girls sleep? How does he find Bella at the end?) and it shows a lot more of Alice’s gift, which involves some fairly clever writing by Myer. It also makes Bella more sympathetic (if not necessarily a better decision-maker). It’s a chunky book, but very easy to read.

Hardest read: ‘The Silmarillion’ by J R R Tolkein

Hard, but worth it. I actually couldn’t get through the written text and switched to the Audible version read by Martin Shaw, who does a stellar job.

The Silmarillion takes a long, long time to get going and can be hard to follow (I constantly forgot who the different subspecies of elves were), but once it picks up, it really picks up. The Lord of the Rings kind of gives the impression that Sauron ruined some nice golden age, but in reality (or canon, I suppose), Middle Earth has been a hot mess from the start. It’s a series of tragedies of Shakespearean proportions, but with Balrogs. If you like LOTR, you should give this one a whirl. Just set aside a lot of time. It’s 14 hours of listening.

Most profound: ‘A Train in Winter’ by Caroline Moorhead

Look, it might be cheating to list a book about the Holocaust as the most profound, but I cannot fail to be touched by the courage, determination and intense suffering of the people who lived through it.

A Train in Winter by Caroline Moorehead - Penguin Books Australia
Image description: the cover of ‘A Train in Winter’, which features three women walking through snow away from the viewer. The left woman has curly brown hair, a brown fur coat, brown trousers and open-heeled brown wedge shoes. The middle woman is a blonde with hair curled at the ends, wearing a blue coat and brown lace-up shows. The right-hand woman has blonde hair, curled at the ends, and wears a red coat over olive trousers, with brown heeled shoes. The title is imposed over their backs, with the subtitle ‘A Story of Resistance, Friendship and Survival in Auschwitz.’

‘A Train in Winter’ follows the stories of the 200 or so women of the French Resistance who were sent to Auschwitz in WW2. Just 49 survived. Reading about the loss, deprivation and cruelty they endured, and the courage and unity that carried the survivors through, made a deep impact on me. Many times I felt like crying as I read. It’s not a cheerful book, but it is an important one.

Most profound (fiction): ‘The Color Purple’ by Alice Walker

This book follows the story of Cece, who has to endure some fairly horrific stuff, but grows and learns and becomes an amazing person. That sounds fairly sappy, but honestly, it’s not a sappy book. It is a tear-jerker, and trigger warning for abuse and sexual assault, but my goodness, what a rollercoaster. Highly recommend.

Most useful: ‘The Barefoot Investor’ by Scott Pape

I’m not normally one for self-help books, or for doing what people tell me to, but I switched banks because of this book. If I really thought about it, I probably knew most of the stuff in it, but I never did think about it. This got me to do that, and then to put it into action.

Most exciting: ‘Trail of Lightning’ by Rebecca Roanhorse

The actual most exciting book I read isn’t yet published, so I won’t write about it here, except to say it was an amazing steampunk spy thriller/adventure. ‘Trail of Lightning’ is a decent second place, with Navajo demon hunters, gods and magic. Lots of action scenes and some tense romance makes for a very thrilling book.

Trail of Lightning (The Sixth World, #1) by Rebecca Roanhorse
Image description: The cover of ‘Trail of Lightning’. A woman stands on top of a red car with a white roof. She has short black hair and is wearing black pants and a black leather jacket with a white top. She holds a long knife and a gun. Lightning forks around her, and the title is written in red across her. A man is driving the car.

Honourable mentions:

‘The Colour of Our Sky’ by Amita Trasi – the story of two Indian girls separated by a crime and then a continent, and their journey to find each other again. TW for sexual assault. Heart-rending but very well told. Recommend.

‘Convenience Store Woman’ by Sayaka Murata – short, funny, easy to read. Tells the story of an unusual woman who works in a convenience store and doesn’t want to change that.

‘Outlander’ by Diane Gabaldon – it’s a long one but a good one. It’s exciting, with a mostly-likeable main character and mostly-attractive love interest. I loved it, but I take points off for the very casual mentions of sexual assault, and the unnecessary frequency of them.

‘The Pearl that Broke its Shell’ by Nadia Hashimi – the story of two woman from different generations in Afghanistan, both of whom experience violence at the hands of a patriarchal society, and both of whom dress as men to survive at various points. It has some pretty heart-breaking moments, but it’s a fantastic story of strength and courage.

‘Boys will be Boys’, by Clementine Ford. I loved Ford’s first book, Fight Like a Girl, and the sequel did not disappoint. It’s a book to make you rage against injustice, and to make you want to rid the world of unfair stereotypes that harm both boys and girls.

‘The Fall of the Gas-lit Empire’ by Rod Duncan. I love me a good alternative historical fiction. This one was a Steampunk epic that follows a young woman who lives in disguise to keep away from the law during a version of Victorian Britain, whilst trying to avoid officers of the International Patent Office.

‘Daughter of Fortune’ by Isabel Allende. I couldn’t put this novel down, but I warn you: the ending is NOT cathartic. It’s great anyway, though – it follows the journey of Eliza, an adopted daughter of a rich family in the 1840s in Chile, who finds herself pregnant and ends up following her missing lover to California.

‘I Know Why the Caged Bird Sings,’ by Maya Angelou. This remarkable woman did not have the easiest life – racism, sexual assault, and a childhood that carried her back and forth across the US. The autobiography is written in an unusual way – thematic, rather than chronological.

‘The Winter People,’ by Jennifer McMahon. This is a horror set in snowy Vermont, spanning a century. It has scary bits, but it’s really horror-lite – minimal gore, and not that much suspense. I enjoyed it, but you’ll see the twist coming.

‘Shameless’, by Nadia Bolz-Weber. Bolz-Weber is a feminist Christian pastor, and ‘Shameless’ looks at how the church treats sex, and how people of all walks of life have dealt with the sexual guilt and shame that conservative Christianity has left them with, whilst still maintaining their faith and their love of God.

‘A Wrinkle in Time’, by Madeleine L’Engle. This is a children’s book, which I didn’t realise when I added it to my to-read list, but I enjoyed it anyway! A good vs evil romp through space and time, about finding your inner courage and strength.

‘Yes Please,’ by Amy Poehler. I haven’t watched Saturday Night Live or Parks and Rec (I tried, but I don’t like Chris Pratt), so a lot of the references went over my head. She’s a good story-teller, though, willing to fess up to her mistakes, and full of a clear passion for theatre. References to her good buddy Harvey Weinstein don’t age well, though.

‘The Boundary’ by Nicole Watson. It’s a murder mystery with magical elements, alcoholism, infidelity, and gambling addition, as well as the racial and historical trauma endured by Indigenous Australians. It’s pretty dark, but I liked it.

Probably won’t read again

‘Fahrenheit 451’, by Ray Bradbury – it just feels like every other piece of 20th century dystopian fiction I’ve read. I’m sure it was revolutionary at the time, but I think I’ve read too many books that felt similar to enjoy it.

‘Great Gatsby’, by F. Scott Fitzgerald. It just bored me. None of the characters were particularly interesting, and none of them really had any redeeming features.

‘Catcher in the Rye’, by JD Salinger. It’s just a teenage boy making stupid decisions for several days, and deciding all the people around him suck in the most boring, repetitive language possible. It’s not that deep.

‘Mrs Dalloway’, by Virginia Woolf. Pretty and lyrical, but not riveting. A re-read is unlikely. I had to listen to this one, because Woolf’s hatred of the full stop makes reading it on paper quite hard.

‘Call of the Wild’, by Jack London. Too sad. A dog gets kidnapped and forced to become a tough, rugged sled dog, goes through all sorts of bad things, and when good things start to happen, it gets worse again.

‘Wide Sargasso Sea’, by Jean Rhys. It’s a version of the events leading up to Bronte’s ‘Jane Eyre’ from the perspective of Bertha, the mad wife. It’s barely comprehensible, and the only reason you’d know it had anything to do with ‘Jane Eyre’ is because Rochester is in it. It’s got no real plot and a bunch of unreliable narrators. I wanted to love it and was really excited to read it, but I ended up hating it.

‘Internment’, by Samira Ahmed. Another one I wanted to love – a speculative fiction about America putting its Muslim population in internment camps, and a young Muslim girl fighting back. Unfortunately, whilst topical, it just didn’t thrill me. The stakes never felt that high, even though they were (death and torture were very possible consequences in the book). Maybe I’m just too old for it?

‘Jesus Feminist’, by Sarah Bessey. This book is hailed in Christian feminist circles as something of a must-read. Unfortunately, I was hoping for something a bit more critical that engaged more heavily with the Bible; this was more of a “the vibe of thing” text. It might be useful for someone just beginning to consider whether their faith can also be feminist, but it was just overly simplistic for me (and unnecessarily wordy).

‘The Communist Manifesto’ by Karl Marx and Friedrich Engels. I am very sympathetic to the aims of Communism, if not necessarily the methods, but the manifesto itself makes some sweeping assumptions, and I feel like a lot of it doesn’t really hold up in today’s society.

‘The Hedge of Mist’ by Patricia Keannealy-Morrison. It’s book three of the Arthurian legends set in space. It’s very dense, very flowery, and just not that exciting. I loved the first book, ‘The Hawk’s Grey Feather,’ but unfortunately the trilogy got less awesome as it went on, I think.

‘Medea and other plays’ by Euripedes. They’re very easy to read – I got through all four plays in a couple of hours – and I’m glad I read them once, but I don’t think I’ll do it again.

Image description: A person wearing a grey jumper holds a book open on a brown duvet. There is a pair of glasses to their right, and a pair of pumpkins to their left.

That’s my thirty! I’ve got 24 on the list for this year (a new job means less time to read, I suspect), and I’m exciting to keep trying new things. What did you read this year? What did you love or hate? What’s on the list for 2021? Let me know in the comments!

It’s been a long year

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First things first; I haven’t posted since 6 April. I’m sorry about that. 2020 has been a bad year for me, as it has been for so many, and I really struggled with burnout during the lockdown. I was one of the lucky people who was able to keep working during the pandemic, as it was very easy to transition to working from home. However, the isolation, combined with some other factors, made for a severe lack of energy and motivation, and this blog was the first thing to fall by the wayside.

I can’t guarantee that won’t continue to happen over time. Research has indicated a genetic link between endo, gut issues and depression (tell us something we didn’t know!), and I’ll admit my usual positive mood does tend to take a blow when my endo is flaring. However, I’m feeling not too bad at the moment, and have some new content I really want to get out in the next little bit. Expect some updates about surgery, the implanon, and some commentary on the pandemic and disability.

I’ve been really happy to see that this blog has still had views even whilst I’ve been inactive. I hope it has been useful to some people!

I also hope that people have been coping alright during the pandemic. Let me know in the comments what you’ve been up to, and how you’ve been.

Disability-friendly Policy

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Nothing about us without us.

You may have heard that quote doing the rounds a few times. To me, it’s super powerful and calls out a big problem with disability policy – it is often made with only minimal or token consultation with disabled people.

I’ve had cause to think about workplace disability policy a few times this year already, and now, during Endometriosis Awareness month, I really want to write about what I think good disability policy should look like.

1) Say why you have it, and do it properly

A lot of policies are all “Woo, diversity! 20% quota for people with a disability by 2050!” or something like that, but they don’t say why. At best, there is often a vague line about “because disability gives you unique perspectives!” and that’s it. That really makes it sound like the workplace is ticking a politically correct box rather than having a genuine desire to engage – employing us just becomes an exercise in making the workplace look good. Gotta catch ’em all.

What I would love to see is engagement with some of the real reasons employing disabled people is good. Reasons like:

  • It’s good for the economy to have disabled people employed in the first place;
  • It’s good for the workplace to have disabled people employed with reasonable adjustments so that they can produce their best work;
  • We are able to provide diversity of experience and viewpoints that abled people don’t have;
  • Having robust disability policy benefits abled people who are just one broken leg, back injury, car crash, or unfortunate diagnosis away from needing to use it themselves.

2) Make sure it is accessible

When you have a policy, advertise that you have it. Hand out hard copies at inductions. Pin it to your intranet. Make sure everyone knows it is there. Maybe make it compulsory reading, just like the code of conduct and your security policy.

Further, make sure everyone can actually read it. Is it available in accessible format for screen readers or text-to-voice readers? Is the language clear and simple?

3) Make sure the policies actually work

Maybe you have this really great policy allowing disabled people to access extra paid personal/sick leave…but they can only access it if they meet a whole bunch of extremely specific criteria, or are reliant on colleagues donating it, or they must have exhausted all of their annual leave to use it.

My proposal? Many workplaces allow you to buy additional paid annual leave at a one-for-one rate (e.g. you pay one week’s salary to get one week of additional annual leave), and the cost is spread out across your pay over several months or weeks. You usually have to meet some criteria, like you need to nominate a particular time to use it within.

Why not make a similar scheme for additional paid personal leave?Those of us with chronic conditions, who quickly exhaust our paid personal leave, often have to take random, unpredictable, but sometimes length chunks of unpaid leave. We might end up only have three paid days in an entire fortnight as a result. That can be really financially difficult.

If we could buy an extra, say, two weeks paid leave at the beginning of the financial year, and have that financial burden averaged out across our pay slips for the remainder of the year, we’d be losing just a few dollars a fortnight (or month, however often you are paid) rather than the majority of a single pay packet. We’d have a large additional buffer zone against needing to access our unpaid personal leave, and we’d be less likely to come to work when we are just a bit sick with a cold and spread our germs around because we are trying to guard against not having sick days during our next paralysing flare-up.

Sure, it should come with conditions to ensure it isn’t misused. I would recommend the following:

  • A doctor’s certificate stating that you have an ongoing condition or disability that will sometimes necessitate unpredictable sick days at a higher rate than the general population;
  • A cap on the amount (say an extra 2-4 weeks per year);
  • Approval from your manager, noting that they have also ensured that you are aware of your other rights and options under the disability policy (e.g. flexible work arrangements);
  • A requirement that we still provide medical evidence for that absence as usual;
  • A requirement that we have three days or fewer of existing paid personal leave.

Conditions I would not suggest are the following:

  • A ‘use it or lose it’ policy – some years, I might have a great year where I only need three days of personal leave (unlikely), but the next I may need three months. One good year isn’t indicative of my needs in the next year;
  • No ability to roll over unused purchased leave til the next year (see the first point for why);
  • A requirement that we have used all our annual leave – chronically ill people will rarely get to take actual holidays. Often, we’ve already exhausted our annual leave trying to ensure we don’t have large chunks of no payment due to having no paid personal leave. But holidays, breaks, mental health days – they are a right our abled colleagues all enjoy. They make people more productive, happier and healthier. Taking that away from us because we are sick means that the only time we get to spend away from the workplace is days where we are sick. Imagine if that was all abled people had too. It doesn’t make for a happy or productive workplace. Besides, if we are paying for our sick leave, we aren’t costing the workplace anything financially.

I think that the current crises highlights more than ever why the ability to acquire additional paid sick leave is vital. My wonderful workplace is providing extra sick leave to anyone who gets Covid-19, but not all workplaces will (admittedly, not all are equipped to). However, I would argue that being equipped for emergencies (not necessarily a global pandemic, but a bad flu season, perhaps) is part and parcel of running an organisations, particularly a large one. My supervisor says he banks on 1/3 of the work force being out during flu season for one reason or another; perhaps that is a good motto for anyone running an area with multiple staff.

4) Make sure your managers understand

I have been very lucky in my current workplace to have extremely understanding bosses, some of whom have very close experience with chronic illness or disability. However, not everyone is so lucky. I’ve heard nightmare stories of bosses who refuse to give disabled people opportunities, because they perceive them as:

  • inherently unreliable;
  • not entitled to ‘take up’ an opportunity that could go to an able-bodied person; or
  • not up to the demands of the opportunity.

Whether it is because the manager views the disabled employee as less capable, or is micromanaging to ensure they don’t get in trouble for pushing the disabled employee past their limits, the effect is the same – no opportunities for the disabled employee. That means no promotion, no career advancement, and a waning desire to remain in the job.

Having managers be educated, supportive, able to talk to the disabled employee about their needs, and able to strike a balance between supportive and over-protective is key. Get managers trained in having disabled staff.

5) Create visibility, opportunity and education

Finally, ensure that your disability policy doesn’t just employ disabled people and support them at their current level; make sure it allows disabled people to move through the ranks. Encouraged higher-ranking disabled people to be open about their disability by creating a culture in which doing so does not disadvantage them. For people at the bottom of the ladder, seeing that there are disabled people on the rungs above them gives them hope that they can also achieve that, which creates motivation and provides better workers for the employer.

It also normalises disability for people who aren’t used to seeing it, particularly in positions of power. That creates an all-around more inclusive and accepting workplace.

Don’t just stop at educating your managers, who will be supervising and mentoring disabled people – educate everyone. My workplace does sessions based off the ABC show “You can’t ask that” that allows non-disabled staff to ask questions about disability in an anonymous, judgement-free way, and hear answers from people living with those disabilities. It’s a great way to educate without having formal training sessions (which can be kind of weird and alienating when you are the person that the session is about!). Create days about diversity – have stalls and education campaigns explaining what it is like to have a particular disability. Send out newsletters. Educate the masses.

That’s my hot take on what larger workplaces can do to ensure they have a useful, robust disability policy. Do you have any suggestions I’ve missed? What does your workplace do well in this area? What does it do poorly? Let me know in the comments.

Sorry about the lack of posts

Published on by Bubbles in the BrainLeave a comment

Hello, readers

I want to apologise for the lack of posts lately. My computer is being a bad child and giving me only five minutes of internet before deciding it’s all too hard. As a result, I’m stuck on my phone, which is fine for drafting but not great for formatting.

I’ll find a solution ASAP and get back to business as usual accordingly.

In the meantime, please stay safe.

Coronavirus

Published on by Bubbles in the BrainLeave a comment

Hi all,

I want to apologise for the delay in posting. I had a post mostly ready to go, but with coronavirus doing what it’s doing, it didn’t feel right to proceed with my planned schedule without addressing the pandemic first.

This is not a fun time. It feels like half the world is taking this whole thing too seriously, and hoarding loo roll as a result. It feels like the other half is not taking it seriously enough, and refusing to take sensible measures to flatten the curve.

I know I’m not likely to die if I get coronavirus. Despite having a shockingly poor immune system, I don’t have any lung issues. I can’t say the same for my grandmother with one lung, who lives in a nursing home, which are basically disease-boxes. Nor can I say the same for my asthmatic friends. I’m worried about my uncle, who is a doctor, and my aunt and cousin, who are nurses. I’m worried about my husband, whose work exposes him to people from so many different situations that it could come at him from anywhere. I’m worried about my teacher friends, surrounded by hundreds of children every day with no way to maintain distance.

I’m worried about my friends who earn their living as casual workers or performers as businesses reliant on large groups of people gathering in small spaces close, or reduce their workers’ hours. I’m worried about small businesses I have affection for and loyalty too having to close their doors.

I’m worried about separated couples having to navigate co-parenting and quarantine. I’m worried about victims who live with their abusers, trapped in homes with them. I’m worried about people with depression, anxiety, mental illness and chronic pain becoming even more socially isolated and afraid, and the toll this will take on their mental health.

I’m worried about hospitals being put under so much pressure that doctors are forced to chose who to save, or leave people in pain and distress as a half-measure because there isn’t enough to keep everyone pain-free or healed.

I just want everyone to take sensible measures. Act pre-emptively in areas where coronavirus is not yet widespread, and take all possible precautions in areas where it is. Don’t hoard. Help your neighbours out, particularly if they are elderly, sick, disabled or isolated. Help those struggling financially if you have a little extra cash. Keep supporting local business where you can. Look after your mental health and maintain social networks as far as possible. Don’t panic. Verify your sources of information and take proper advice. Wash your hands. Understand that you being healthy doesn’t mean you aren’t a vector. Understand that health is not the same as immunity. Know the symptoms, and get tested appropriately. Just be good people, and good members of the human community.

I hope all my readers are staying safe and looking after themselves. I know many of you will be vulnerable to this disease, and are probably scared and feeling hopeless as people continue to blow it off as ‘a bad flu’. I’m sorry if you get glib responses like that to your valid concerns. I hope you don’t catch the virus, and if you do, I hope your symptoms are mild and your recovery is swift.

I wish you all the best.

xxxx