Work – Bubbles in the Brain

Disability-friendly Policy

Published on April 6, 2020 by Bubbles in the BrainLeave a comment

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.

August Gratitude

Published on September 11, 2019 by Bubbles in the BrainLeave a comment

August has slipped away and we are finally into spring! Before I can celebrate the joyous arrival of that lovely season, though, I want to talk about what I was grateful for in the final month of winter.

I’m sorry it has taken me so long to do this. I ended August on a bad note, with a solid two weeks of pain that eventually got so horrific I was forced to take a week off. It’s always super depressing that happens, because you start questioning the effectiveness of your treatment and eventually spiral down into deciding that nothing will fix you and you are doomed to be eaten alive by your own uterus. It’s hard to be grateful in those circumstances and it has made this list a little harder to complete.

Nevertheless, grateful I am and grateful I will continue to be. Here’s what about.

1) Having a warm home

I used to volunteer in a men’s homeless shelter overnight in winter. You’d sleep on the ground in the church hall we were given for it, inside a sleeping bag. Even with my cosy sleeping bag, it was chilly. Of course, I only had to do that one or two nights a month. For the men that utilised the shelter, they had to sleep in those conditions or worse every night.

Burning Firewoods — Image description: a wood fire burning in a brick fireplace.

Australia can get cold at night. Really cold. Dying of exposure is a possibility. Each winter I am grateful for four walls and a roof, a warm bed and fluffy pyjamas. I am glad that my pets are also safe and warm around me.

2) Wonderful work friends

As I noted in July, our team grew again, and I’m delighted that our new additions are, like my existing colleagues, smart, capable, hard-working, kind, hilarious women that I can have a good laugh with even whilst we are working under heavy pressure to produce good stuff. With or without these ladies, my work would be interesting, but they make it delightful. People really do make a workplace.

3) New suit

It’s red. It’s fabulous. It was on sale. Enough said.

Image result for review australia aries jacket — Image description: a blonde white woman wears a black dress with flowers printed on it and a dark red blazer with a waterfall front. This is the jacket from my new suit. Image and jacket from Review Australia.

4) Blue skies

You know those windless winter days where the air is still crisp and cold but the sun is beautifully warm and the sky is a perfect rich blue without a cloud in sight? Australia does those days well. I love them, and the end of August gave me plenty of them.

5) Gorgeous sunsets

The sunsets really started to get pretty in August. They’d be gold at the horizon, fading up through pink, into violet, through all the shades of blue. The city skyline and the hills around were silhouettes perfectly against it. It was all just super pretty.

6) Two straight weeks of work

Sure, I ended August with a horrific flare-up and the two weeks leading up to them involved a fair amount of pain, but I managed them at work and I achieved good stuff.

7) Age of Empires

Image result for age of empires — Image description: computer graphics showing some short wooden towers and walls on either side of a path. There are trees and cliffs to their right. Further to the right is a stone house and a stone tower, looking over the coast line. In the very blue sea is a dock and three little ships. The text across the picture reads, “Age of Empires II: HD Edition.”

I got my first copy of AoE in a box of Nutrigrain. It was great. My sister and I soon acquired Age of Empires II: Age of Kings. We were thrilled when Age of Empires III came out. It’s fun, it’s pretty, you get to fight the French. I went on a bit of a binge during August and enjoyed not only the game, but the nostalgia too. There are many different nations to play as and against, each with their own distinct characteristics and style. Also exciting: apparently there is going to be an Age of Empires 4 released next year.

8) B12 spray

Image description: a white spray bottle with a blue label that reads: B12 Liquid.

I take a LOT of vitamins. Between the IBS and the endo and the various deficiencies, I have to swallow a lot of tablets. Not only is a sublingual spray a more efficient way of absorbing B12 (particularly important for vegans), it’s relatively tasty and it is one less pill to have to force down your throat. It’s actually a big relief for me to find a way to take this important supplement without having to fight nausea to do it. I use this bad boy: https://www.discountepharmacy.com.au/bioceuticals-b12-spray/

9) Tofu

Maybe it sounds like a silly thing to be grateful for, but I really am. It’s such a versatile and delicious food. It’s really quick to cook and it doesn’t cause me digestive issues. It’s very nutritious, with plenty of protein and surprising amount of iron for a such a pale, flabby-looking food (I always associate iron with dark colours like kale or spinach). I particularly like it as a scramble (crumbled into a frying pan with oil and whatever herbs, spices and vegetables I fancy) or fried in a coating of salt, pepper and flour. Yum.

10) My parents

Once again, my parents helped me out during my week of sickness. My mum came out twice, brought me some groceries and did some of my laundry, and my dad came out once, drank my tea and then had to leave because he’s allergic to my cat. Having help with the chores went you can’t stand is just the biggest weight off your mind – not only does a cleaner space make my mental health better, it relieves the pressure on me and on my husband, who of course otherwise has to pick up the slack when I’m sick. Even just having company makes a big difference – being home sick is a lonely, isolating experience. You feel a bit unloved and a bit useless. Company helps relieve that.

What were you grateful for in August? Anything amazing happen? Did you have to struggle to find the silver lining in the clouds? Let me know in the comments.

Decisions, Decisions, Part I: Employment

Published on August 10, 2019August 4, 2019 by Bubbles in the Brain1 Comment

As my regular readers will know, at the end of last year I made the very difficult decision to leave my job as a litigation lawyer and move into a more policy-focused role without any litigation element. It was a big change, and it felt like a big loss. As much as I adore my new job, there are certainly elements of my old job I miss. Most of all, I am sad that the decision wasn’t one I could make because I wanted to, but because I had to.

Now, as my endo and adeno continue to cause trouble, I’m faced with another decision – reducing my hours.

Today, I want to talk about how you make these types of decisions. I highly recommend using a journal to write down your thoughts on this, or to talk at someone. I find it helps solidify my reasoning and makes me think it through logically and thoroughly.

Basically, there are a lot of questions to ask yourself.

First, and most obviously:

1) Can you physically do it?

Whether you are asking this about the number of hours your are working, the type of work you are doing now, or the type or work you are looking to move into, it is the most basic consideration. If you cannot get through a full day without the pain driving you to your knees, or sending you to the bathroom to cry multiple times a day, or forcing you to take serious painkillers that compromise your ability to do your job in other ways, it might be time to rethink your current work.

When thinking about this, don’t just take into account whether you can struggle through a work day. Think about whether you can get through a work day and still have the strength to feed yourself, keep yourself clean, and complete those basic necessities of life? Life does not begin and end with work, and if a full-time day in your current role results in you collapsing into bed fully dressed as soon as you crawl through the door every day, that job is not working for you. Some days like that are a reality for many people with chronic pain, but if that is the majority of your days, it is not sustainable and you will end up in a really, really bad way.

2) Are there changes you could make that would let you keep the status quo?

Now, it may be that cutting your hours is the change that lets you keep your job, but other things might work too. If you work in a standing role, such as at a checkout, and you find that painful, could your employers give you a chair? If you have an office job that involves sitting all day, could a sit-stand desk help? Would a heatpack at your desk make a difference? If you struggle more in the mornings, could you start and finish work later, or vice versa if your pain is worse in the evening? Is there any way you could work from home for a day a week? If you have to wear a uniform, are there allowances that could be made for a stretchier waistband or more comfortable shoes?

Remember that the Disability Discrimination Act mandates people making reasonable adjustment for disability (see section 5). If you aren’t sure that what you are asking for is reasonable, or your work is saying it isn’t, consider a chat with a lawyer. Legal Aid commissions around the country have helplines for free advice, and many lawyers will give you a free initial consultation or do the first 15 minutes for free.

Please note that the above is not legal advice.

Ultimately, though, if there isn’t an adjustment that will do enough to let you stay where you are, that’s another sign it may be time to move on.

3) Can you afford it?

Sadly, this is the worst question, but it is one of those horrible realities that ultimately dictates what you choose. It can put you in an awful situation where your body can’t physically afford for you to keep working, but your family (or even just you) can’t afford for you to not. Let’s not pretend that the DSP is a lot of money, even if you can get it, and Newstart is even worse.

That being said, it is still a relevant consideration. If you have a marketable, flexible skill, there might be things you can do to supplement or create income outside of Centrelink. For example, if you are fluent (and certified) in a second language, you could pick up some translation or phone interpreter work. If you have good English skills and can work at a computer, editing or transcription might be good. If you are a superb knitter, perhaps there is an Etsy store in your future. With all of these, though, bear in mind that your income is reportable to Centrelink and may reduce your payments accordingly, so assess whether it is worth it for you.

If you don’t have a skill or the energy to market it, what else can you do? Are cheaper accommodations an option (noting that moving is a big deal even when you are healthy)? Are you eligible for government housing or rental assistance? Are there any costs you can cut down on? These are not nice questions to ask, and I hate the idea that people have to go through this, but it is a relevant consideration.

If you know that you cannot physically work any more, but also have no idea how you can possibly afford not to work, speak to a disability advocate, social worker, or community lawyer. Ask what funding options there are and what you need to do to qualify for them. Get as much medical evidence as you can from your treating team. I can’t guarantee that things will be fun or easy (in fact I can almost promise it will be agonisingly frustrating), or even that you will be able to find the answer, but it will help inform your choice.

What are your other options?

If you are considering a workplace change rather than unemployment or a reduction of hours, what are the options for you to move on to? Is your prospective employer likely to be flexible? Will the new job suit your needs? Will you enjoy it? Seriously, mental health is important. You want to like your job, especially if you are spending a lot of time doing it. Will the new job allow you to grow and advance?

These questions are, sadly, less important that the physical and financial needs, because, well, you need to be housed, fed, and capable of standing up.

None of the above will give you an answer, but I hope that asking yourself these questions helps make the decision a little clearer in your mind. It may also help you justify it to other people (not that you should have to, but there are always judgemental people).

Have you had to make a decision like this? How did you decide in the end, and do you feel like it was the right call? Let me know in the comments.

July Gratitude

Published on August 4, 2019August 4, 2019 by Bubbles in the BrainLeave a comment

TW: body image, weight gain

Can you believe we are already in August? Some people have said that they thought this year has moved slowly, but for me it has absolutely raced by.

I’ve been slow in posting again this month due to continuing health problems – some endo, some of a more sinus-y nature – but I have plans for the months to come and some drafts saved and ready to roll. For now, though, it’s time for me to engage in that important monthly practice – gratitude.

1) Scuba

Bawley Point20 June 19 .jpg — Image Description: beautiful Bawley Point. The sun is shining in a vivid blue sky above an even brighter blue sea. There is a small sliver of creamy beach in the background, topped by dark trees. In the foreground is rocky, grassy ground, and some big rocks with snorkel gear on them.

I did it! You may remember that at the beginning of the year I said that I had three goals I wanted to complete. I wanted to finish the Old Testament (did that last month), learn Arabic (not progressing well), and get Scuba certified. Well, I finally did the latter!

We did some training dives in a pool over one weekend, then headed to the NSW coast for the second weekend and did our qualifying dives at Bawley Point, near Bateman’s Bay. It is a beautiful spot to dive, and we had a lovely weekend for it. The weather was crisp and clear, but not freezing, and the sun shone all weekend. And under the water – so many fish! We saw literally hundreds of Australian mado (little black and white stripey fellows with yellow tails), several Port Jackson sharks, a crested horn shark, two massive bull rays (I kid you not, these things were wider across than my car) and a sea turtle. It was absolutely magical.

Also, I’m now a PADI certified Open Water Diver. Yay!

2) Reconnecting with a friend

I did the diving course with a friend I haven’t spent much time with for a long time. He was friends with my husband for years before I met him, and when I asked on facebook for people to do the dive course with me, he put his hand up. We had a great time. He is super into science and really enjoyed the technical side of diving, whereas I was just, “ooh, fish!” We both loved it for different reasons, and had some really good D&Ms on the road to and from the coast. I love getting to know people like that all over again. Moreover, he’s just a really great, kind, good-hearted person who is lovely to be around.

3) New colleagues!

Two new people joined our team this month. Love them both already. Interesting and fun women. One of them bakes. Top marks.

4) A bit of body positivity

I haven’t had the best relationship with my body this year. I gained a lot of weight at the beginning of the year when my Zoladex went all wild on me, and I’ve struggled with body image and self-hatred so much as a result. Most of my hate has been directed at my thighs. However, in learning to dive, I had to wear a wetsuit (side note: getting in and out of a wetsuit is a WORK OUT). Underneath that, you can’t wear board shorts or anything (I normally wear these cute little swim shorts from Landsend, or a swim dress). I had to wear my once piece, thighs out.

Women's Swim Shorts with Tummy Control — Image description: the lower half of a white person wearing black shorts in a swimsuit material. The shorts are just a little shorter than mid-thigh. I think they are the perfect length – more flattering than board shorts but still giving a little more coverage than just a one piece.

You know what? I felt fine. My thighs are a perfectly acceptable size (if somewhat glaringly white) and the exercise forced my to just embrace my body.

Sure, the confidence sort of vanished the next time I tried to squeeze into some of my work clothes from last year and realised that they no longer fit around the thigh, but it felt really good while it lasted. I think I would feel comfortable doing it again.

5) Extra Skincare

I’ve been really into learning more about skin care in July. If you are interested in also learning all the mysteries of what the different acids are, what you really need in your routine, what ingredients work best together, etc, then I highly recommend heading over to Beauty Within. I absolutely do not agree with their product recommendations, which are rarely cruelty-free and almost never vegan, as well as being super expensive, but learning about the key ingredients can help you find good skincare at a fraction of the price.

Whilst I was learning about all this, Nourished Life was good enough to have a big old clearance sale. Nourished Life sell a bunch of green and vegan products, so it’s a really good place for me to shop, and they always have free gifts or good deals going on. I indulged in some replacements for items I needed, and explored a new-to-me brand called Andalou Naturals. Most of their products are vegan, and they are packed with all the ingredients I wanted. Don’t get me wrong, I love Sukin, but they don’t have certain things in them that I like in my skincare routine. I will never abandon certain Sukin things, but I’m happy to introduce some Andalou. I love a sale. I love the pampering effect of new products. Happy me.

6) New Prostap

I don’t love being on Prostap, but I like being without it even less. My last dose of the stuff turned out to be a dud batch and provided no pain relief at all. I now have a new batch and, whilst the adjustment period is rough, the pain relief is really nice.

7) Sunshine

Image description: a slightly chubby ginger cat is lying in his side in a dusty dirt patch in the grass. He has green eyes and is looking up at the camera. There is netting behind him, and grass beyond the netting. This is Max in his cat net.

As the weather gets warmer and sunnier, my boy Max has been able to get out in his CatNet cat enclosure and have a little bit of outdoor fun. Max is strictly an indoor cat unless he is contained in some way. I’ve tried him on the leash, but he’s a bit nervy and can escape it when he gets panicked. The cat net lets him have the outdoor time he clearly craves whilst keeping him safe and preventing him from having an impact on local ecosystems.

He loves lounging in the sun, rolling luxuriously in the dirt, and eating the grass.

8) Opportunities

One plus side of working in a really big organisation is that there are a lot of opportunities to do different things or move up the food chain. An opportunity came up recently and I have gone for it. We’ll find out in August how successful I was! Extra grateful for my kind colleagues who helped me talk myself up in my CV, and my wonderful supervisor for supporting me in going for it.

9) Trivia

I love trivia, but what I mean this time is a trivia night. I’m involved in the social club at work, and we organised a trivia night in early July. We raised a lot of money and were able to donate more than $2000 to charity, thanks to the generosity of my colleagues and our sponsors.

Although I was too sick to go myself, the team I was rooting for (my team colleagues) absolutely killed it and took home first prize. Very proud.

10) Not dying in a car crash

Oddly specific, perhaps, but I have a reason. The last days of July were a bit wet, and on the way to work one day my car spun out on the wet road on a roundabout. I spun 270 degrees around and ended up facing the wrong way on the road. By some miracle there was no one else on the roundabout at the time, although some people were waiting to come on, so I didn’t hit anyone else or the signs around it. Some kind strangers stopped to check that I was ok, then stopped the rest of the traffic so I could get the car off the road. My mum came out and waited with me while the NRMA came to confirm that it was just the greasy road and not my somewhat elderly car having a senior moment. (It was just the wet road). I was shaken and very late for work, but thankfully totally unharmed otherwise. Here’s to safe driving and kind people!

What are you grateful for this month?

June Gratitude

Published on June 30, 2019 by Bubbles in the Brain1 Comment

I feel like I’ve prefaced every monthly gratitude post recently with a note that it’s been a hard month. Once again, though, it has been. My Prostap injections have stopped working – my doctor thinks this one was a dud – so I’ve been dealing with a solid month of pain accompanied by a really icky cold (lots of lovely mucus – yay!).

I think this makes it even more important that I take a moment to stop and think about the things this month that I am grateful for.

1) Cake!

I successfully baked three really nice cakes this month. One was a packet mix, so I can’t be too proud of it, but seriously, if you want a deliciously moist, rich, vegan chocolate cake, just add a can of Coke to the stuff in Betty Crocker’s Devil’s Food Cake and bake it, and voila, instant deliciousness.

I also made this funfetti cake from It Doesn’t Taste Like Chicken. Unfortunately, my sprinkles vanished into the cake and just left little blobs of yellow behind, but the cake itself was delicious, and I’m really proud of the rainbow icing. Sure, it has some holes in the bottom layer, but it’s the first time I’ve ever tried to get fancy with buttercream, so I’m proud of myself.

Rainbow Cake (2) — Image description: a violently rainbow cake with colours ranging from red at the bottom through the rainbow to purple at the top. It has rainbow sprinkles on top and is sitting on a silver plate in a fridge. Please excuse the shocking photography – the bright light in the fridge was the only place I could really capture the intense colour.

My third cake was for my mother’s birthday, and was the tastiest of the three. I used this incredible, zingy lemon cake recipe from Lazy Cat Kitchen. I cooked it slightly too long but it still turned out really well – very soft and fluffy on the inside and soaked in sweet lemony flavour. Definitely a “make again”.

2) Basketweaving

My workplace celebrated Reconciliation Day last month by holding Aboriginal basketweaving classes for employees, taught by an Aboriginal woman who travelled out on country to learn the techniques and is sharing them with us. It’s really relaxing and it’s nice to have something to do with my hands when I’m watching tv or listening to an audiobook. I’m trying to make a basket for Max, which is a little tricky because he is a) fat and b) prone to eating the materials I use, but I’m pushing through.

3) Max is ok

Image description: a fluffy ginger cat with green eyes and a slightly angry expression. That’s Max. He’s not actually angry, he just has a resting bitch face. He’s so chill that today he let me pull him down onto his side and rub his tummy for a good ten minutes. For many more Max pics follow my instagram – OffBalanceSpinningTop.

Last month I wrote about how Max had to have dental surgery. He’s all recovered from that now, but gave me a scare this month when I found blood in his urine. After a rushed vet visit and some medication, it turns out he probably just had sterile cystitis, and is back to peeing normally (i.e. not on all my nice blankets) and no longer in pain. That’s a huge relief.

4) A good boss

Chronic illness is terrifying, particularly when you love your job and want to earn the respect of colleagues you admire through hard work, but have to take off unreasonable amounts of time due to situations like my current Prostap issue. I am still super stressed about it, but less stressed than I would be if my amazing boss wasn’t so good about this whole poopy situation.

5) Fulfilling a goal

One of my three goals this year was to read the Old Testament. I have officially finished it. I’ll admit, it mostly wasn’t thrilling. The prophecy books (Isiah, anything after Jonah) are mighty confusing unless you have some reference material to explain what the heck they are talking about. Lots of doorways getting measured and people dying of famine and then everything getting better and people being happy again. I really enjoyed the books with strong female characters, though – Ruth, Esther, the early parts of Judges – and some of the books, like Lamentations, have some truly beautiful imagery. There’s a lot of good stuff in Psalms and Proverbs, too.

Anyway, I’m proud of finishing it. I’m on track to fulfil Goal 2 (getting SCUBA certified) next month, even if I’m doing really poorly with Goal 3 (learning Arabic).

6) Pretty dresses

Image result for review australia chateau floral — Image description: a beautiful brunette girl (not me, although I am also a beautiful brunette girl) in a burgundy dress with purple and pink flowers on it. This is Review’s Chateau Floral dress, and I love it. Photo by Review.

This month has been all about the comfort clothes. Maternity jeans, turtlenecks, flowing trousers. Today, I realised I haven’t worn an item of clothing just because I love it for a very long time, and that makes me sad. So, I made an effort, grabbed one of my absolute favourite dresses (pictured above), and wore it just because.

7) Clean water

It’s a simple thing to be grateful for, but it’s so important. Clean water is one of the greatest guarantees of health (in terms of freedom from things like cholera, anyway, if not from endo) and is vital to sustaining life. It also tastes good. If I’m thirsty, I can just turn on the tap. People in Flint in the USA still don’t have clean water after years of complaints, and that is in the very developed world. People in other parts of the world have to walk for miles to get water, and today I literally bathed in litres of it. A few weeks ago, I went for a swim in a 50m pool. That’s more water than some people will ever see. Even in Australia, animals and people suffer every time there is a drought. Clean water is something we cannot take for granted or be sufficiently thankful for. Clean water is life.

8) Assassin’s Creed

Image result for assassins creed 2 — Image description: the torso and head of a man in white Renaissance clothing with a red fancy sash and silver belt, a brown cloak and two knives sticking out of bracers on his wrists. The text says: Assassin’s Creed II

I finished the first Assassin’s Creed game some time last year after literally years of procrastinating, and I loved it. This month, after slightly less time, but still a lot of procrastinating, I finished the second one. The first one sees you play an Assassin in the Middle East during the Crusades; in the second, you are in Renaissance Italy. Both games are heaps of fun and absolutely stunning. Seriously, the detail that goes in to creating the huge cities that these games are set in makes them worth playing even if you don’t want to stab lots of bad guys and save innocents from corrupt guards. I so badly want to go it Italy now.

9) One year

I’ve been writing this blog for one whole year now. I’ve been up and down with it – it’s really hard when I’m not well, because my motivation and creativity take a big hit – but I have stuck to it. I have more than 100 followers, and I’m super grateful to each and every one of you. I can’t tell you how happy it makes me when I see someone like an article. Please keep on liking and sharing, and let me know in the comments if there is any particular content you want to see more of. I want to keep this blog relevant to the experiences of people with endo, adeno and chronic pain, and it really helps me to know what people want to read.

10) Today

Sundays are really difficult for me, because I spend a lot of time stressing about how I’m going to get through another week, and how exhausted I will be when I have to get up at 6am, and whether I’ll even be able to fit into my clothes tomorrow. Today I woke up especially depressed and I kept getting worse. However, I managed, largely thanks to my husband, to pull my socks up (actually I wore tights, but whatever), put on my pretty dress and do my face and hair, leave the house, breathe some fresh air, buy the vitamins I’ve been neglecting, and eat some good food and drink some delicious hot apple cider. It was really, really hard to actually do that, but I did. I’m proud of that.

What are you grateful for this month? Have you baked anything delicious lately? Share in the comments.

The Financial Impact of Endometriosis

Published on June 28, 2019June 28, 2019 by Bubbles in the Brain

Last year, the SBS programme Insight did a segment on endometriosis, estimating that it costs Australia at least $7.7 billion per year. Our problem uteruses (uteri?) are bad for the economy.

The impact at an individual level, though, is arguably far more devastating. Not in dollar amounts, perhaps – the idea that I would ever lose out on $7.7 billion dollars is estimating just a smidge high – but in terms of what it costs us as a percentage of our expenses. Now, as another financial year winds to a close, seems a perfect time to discuss that.

(I want to apologise if I’m slightly incoherent. I have another cold and I’m muddle-headed, dizzy, nauseated and slightly rambly, and my hands keeps trembling so I’m making some exciting typos.)

I don’t have super statistics about what endometriosis costs each sufferer. I can only really talk about how it effects me, and the anecdotes I hear from others in the community who mention missing work, having to quit jobs, etc.

For me, missing work is by far the biggest impact. I burn through any paid sick leave I have extremely quickly. If it isn’t endo pain, it’s an infection or illness because my overburdened immune system can’t stand up to even the most pathetic germs. That means that on days I don’t work, I don’t get paid. Currently, my Prostap injection has failed me, and I’m home sick yet again because I can barely stand up and I’m so swollen that clothes actually hurt. Also, the abovementioned cold. I’ve made it to work one day this week. That means I’m looking at another pay cycle at effectively half pay.

Of course, for sufferers who can’t work or can only work part-time or in casual roles, the financial impact is even worse. I’m very lucky to have a good job with a good wage. Many people can’t say the same. Some have the fight of their lives to try and get the Disability Support Pension, which is not much, and have to live off Newstart in the meantime, which I understand is considerably less and puts you below the poverty line.

Regardless of whether I get paid or not, the cost of my Prostap is $358 every six weeks. I’m fortunate enough to have private health insurance, so I get $100 back. (It’s worth noting that Prostap is on the PBS if you have prostate cancer, so it will only cost $48 then. If you have endo, no PBS benefits for you). Add to that the cost of the hormone replacement therapy, which is $50-$100 monthly depending on the pharmacy. I have actually stopped taking it because I didn’t find it that helpful, but it was an additional cost for several months.

Then, of course, there is the cost of surgery. If you pay privately, you are looking at thousands. If you go on the public waiting list, you could be waiting over a year depending where in Australia you are – more time with more pain and therefore more lost income and more money spent on pain management.

In between surgeries, there are multiple appointments with doctors and specialists. Bulk billing doctors are a treasure, but if you can’t get those and don’t have a healthcare card, it’s usually at least $40-$50 per visit after the Medicare rebate. If you need to keep going to the doctor to get medical certificates, new prescriptions or things like injections (such as Prostap or Zoladex) that adds up very quickly. I’ve put off doctor’s visits and even buying medications before because of the cost.

Tax time is generally the only time you get a break. My absences usually result in me being overtaxed and getting a bit back at tax time, but that’s one lump sum a year. If I get anything back this year, it will be going straight to paying off some debt, and anything left over I will spend on wild items like moisturiser, because I’m currently scraping dregs out of jars rather than spending out on something like that that I view as a luxury, even though my face might crack and fall off without it.

I do want to finish on a slightly more positive note, though. These are some methods I have used to try and minimise the impact on my savings. They won’t work for everyone – you have to a) have savings, and b) have enough to put into them – and I’m by no means a financial planner, so please don’t take them as gospel. I acknowledge my privilege here in that I am relatively well-off, and I beg you not to try and do things you can’t afford because of the idea that if you aren’t saving you’re a terrible adult. If you can’t afford it, you can’t afford it.

1) I budget by percentages and priorities, not dollar amounts

I carefully budget what my pay will go towards. However, because I can’t guarantee I’ll be getting the same amount each week, I allocate percentages rather than figures. If I say I have to put $500 towards savings a week (a pipe dream even at full pay) then I’m going to be struggling when I need to pay for petrol and groceries but only got paid $600.

My biggest percentage goes towards the mortgage, with smaller percentages for my savings account (to be touched only as a last resort), my emergency account (to be drained before I touch my savings but only if I have nothing left in my spending account), and charity (I can’t engage in much else in the way of service or activism, and giving to charity is a vital part of helping me feel like I’m making a difference despite that, so it’s non-negotiable). I budget a particular percentage for paying off debt, but since it is to my parents and they are Very Nice People they are happy for me to not repay them if something else comes up like a vet bill (thanks Max) or unexpected medication or a small pay, so I have a little leeway that fortnight.

2) I quarantine my savings

As described above, I have two savings accounts – one for actual savings, which gives me a higher interest rate as long as I make regular deposits and don’t remove money from it, and one for emergencies, which has lower interest but allows me to remove money as needed. I top both up at each pay with the same amount, but will always take from my emergency account first. If I don’t have to take from it, great, I’ll earn more interest than I would with the money in my spending account, but if I do, it’s there and not being spent on other stuff.

I have absolutely got to the point before where I’ve blasted through my spending account and my emergency account (usually when big bills coincide with big medical issues) and touched my savings before, but this helps minimise the chances of that happening.

Of course, if you don’t have the income to split like this, this may be a terrible idea. If I get paid a really small amount, I will skip putting stuff in the emergency account and put it in savings instead. If I get paid even less than that, neither account gets a dollar. You’ve got to be flexible with any system and put the money where it needs to go.

3) I pay attention to my super

I was lucky enough to attend a financial planning seminar for women in law last year, and one thing that was emphasised is that women, particularly young women, don’t pay enough attention to their super. One the poorest demographics in Australia currently are old women, who often have very little or no super and who have not taken an interest (or not been allowed to take an interest) in their own financial matters. You should always be in involved in your own finances.

In terms of super, the advice given was this – if you are with a solid super fund, which most industry funds tend to be, and you are many years away from retirement age, don’t be afraid to put some of your money (not all!) in the higher risk option for your super fund. The risk is relatively low, because it isn’t all your money and you are many years away from needing it, and the payoff can be high. As you get older, move it all into lower risk options. This will hopefully maximise the amount you get at retirement in a way that doesn’t expose you to unnecessary risk.

I stress that this was advice given to me by financial planners, not something I’m just saying. It is entirely at your own risk if you do this and I’m not personally advising it (or advising against it). It is something I do, however, because I want a good retirement to make up for the difficulties I’m having now. That’s when I imagine I’ll actually have the health to do fun stuff, and I’d like to have the wealth to back it up. Don’t sue me if doing this fails for you.

4) I do my best not to feel guilty when I can’t meet my financial goals

So, this one is no use as a savings tip, but it is super important. Financial pressures are real and they suck. Often we have to give up on things we want and abandon or delay savings goals in order to pay the bills or buy food. I avoid articles about “how I paid off all my student debt and owned seventeen houses by the time I was 25!” because they are usually a) written by someone with no idea how privileged they are and b) make me feel bad, not motivated. You really can only do your best.

How has endo affected your finances? How do you do your best to combat it? Let me know in the comments!

Save These For Future Use, Part 1

Published on April 27, 2019April 25, 2019 by Bubbles in the BrainLeave a comment

Last week I shared some quotable quotes I found on Pinterest about life with chronic illness. Visitors to my Pinterest board, however, will also see more than just funnies and sads. I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself. I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something. Because this post is very long, I’ve split it into two groups of 5.

Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is. Just skip the descriptions if you don’t need them.

1) A pain scale we can all understand

With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).

“10 – Unable to Move – I am in bed and can’t move due to my pain. I need someone to take me to the emergency room to get help for my pain.

9 – Severe – My pain is all that I can think about. I can barely talk or move because of the pain.

8 – Intense. My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.

7 – Unmanageable. I am in pain all the time. It keeps me from doing most activities.

6 – Distressing – I think about my pain all of the time. I give up many activities because of my pain.

5 – Distracting – I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.

4 – Moderate – I am constantly aware of my pain but I can continue most activities.

3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.

2 – Mild – I have a low level of pain. I am aware of my pain only when I pay attention to it.

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?” My 10 is not the same as another person’s 10. It doesn’t convey the actual effect of the pain on my body. It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale. And is the scale linear or logarithmic? HOW DOES IT WORK?

Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own. You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.

In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating. Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5. My face doesn’t crack, my posture doesn’t slump. I carry that through to hospital, where I am quiet and calm externally even though I can barely think. I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me. I can fall asleep despite really bad pain, because pain is very exhausting. I know that it consequently reads as me exaggerating when I say that my pain is an 8. Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.

Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?

2) What being able to work really means

A tumblr thread that reads:

mmmyoursquid: |People love to talk about whether or not disabled people can work

but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)

Dead silence. Nobody cares.”

eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.

Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

mmmyoursquid: “reblog bc the non activities thing seems really important words.”

I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person. On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering. Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it). If I’m having a period of real wellness, I will join my husband in a daily dog walk.

Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries. Basic household stuff. If I want to have a shower or bath, I’m definitely not walking the dog. The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards. I tend to only socialise on long weekends or when I’m having a really, really good week.

I am lucky. I have more “useable hours” than many people. However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed. It baffles me that other people use their after work hours for more than resting and watching Star Trek. Health and vigour seem like wonderful things. I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day. Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture. The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.

3) Changed lives

Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it. I was walking a specific path that got 130% re-routed when I got sick. And it feels like I’m in this bizarre, alternate, half baked version of my real life. And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led. Who would I have been? What could I have been? We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”

I think this is a really good way of explaining to people why chronic illness makes you sad. You are in mourning for the person you could have been, or thought you were going to be. I think it can be a tricky concept to explain.

I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong. It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year. Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy. Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take. Would I be making a name for myself as a good advocate? Would children still be a distant one-day? Would I have been able to travel the world like my husband and I wanted?

4) The in-between

Image reads: “A chronic illness phenomenon

I think there’s this weird phenomenon in life, specifically in the chronic illness community. It’s a place some of us get stuck in – the in between. A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world. You almost faint but you don’t. You’re always in pain it’s relatively tolerable. You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time. Your heart rate is too high to be normal but not high enough to be critical. Your BP is low but not THAT low. You try to find answers but seem relatively okay to doctors so they don’t want to run more tests. You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”

This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything. This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with. This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.

I’ve been in the in-between – I live there, I think – and it just sucks.

5) It is more than pain

Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.

Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this? I think this little post does it pretty well. I don’t think people get that it is sooo much more than just pain. I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function. Fatigue is the biggest one. I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late. I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being. I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed. Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas. I couldn’t go to court or see clients, of course.

Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it. In the meantime, I think this little tumblr post does a very good job.

I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.

Stay tuned for Part 2.

Working with Endo: What to Wear

Published on March 24, 2019March 25, 2019 by Bubbles in the BrainLeave a comment

CW: maternity, weight gain, gendered language

I’ve written before about the difficulties of holding down a job whilst living with endo. Re-reading that post is an interesting experience. I was still in litigation, and specifically said that my health might force a move into policy – an area that, at the time, I had no interest in. Well, that prediction sadly came true, in part. My health did force me to leave litigation, but it turns out policy is actually pretty fun.

I’ve also written before about clothes that are comfy yet not terrible for when you have endo. I want to revisit that topic today, but with a work focus. I’m concentrating on offices here, partly because that is what I know and partly because many non-office careers either come with uniforms, dress codes or special requirements (steel-toe boots, for example).

If you want to look at some more adventurous office ideas, I highly recommend Miss Louie’s various lookbooks (see here and here ). She has so many great ideas on professional yet interesting outfits. If you need to travel for work, head over to this post by Vintage Barbie. I’d also recommend her post on maintaining your own style in a corporate world.

So, without further ado, here are my five office staples for the office worker with endo belly:

1) The well-fitted knickers

Ok, so this applies to literally any outfit, officey or otherwise, but it is so important. Whether you have endo or not, you generally want to avoid the dreaded Visible Panty Line (not terribly professional). It’s not always easy in a world that seems to sell an inordinate amount of cheeky-cut undies that have their leg at that annoying mid-point that just cuts your buttock right in half. If you have been even slightly blessed in the booty, this tends to cause a slight dimple and becomes very obvious under even moderately tight clothing. I also find that they cause me to be making adjustments all day. If you really love a halfway-up-the-butt cut, go for seamless ones that just lie on the buttock rather than gripping and digging in. Cuts that simply won’t cause those lines are G-string, or my personal fave, the granny pants, that cover the entire buttock. In theory, boyleg undies shouldn’t do it either, but boyleg appears to mean different things to different brands and for many, still somehow results in a cheeky cut. If someone has a recommendation for boyleg undies, with, you know, actual legs, please let me know in the comments. I just want boxer briefs for people with nothing between the legs. They look so comfy!

In terms of fitting for endo, you want something that is gentle on the tum. For some, this means a very low cut that lands below the tummy. For others (like me), this means a high cut with a gentle waistband. I highly recommend keeping at least one pair of maternity knickers on hand for the really bad days. I’ve started wearing some maternity things and seriously, the comfort level is out of this world. Overall, my favourite brand has to be Bonds and their offshoot, Jockey, because they have a style for almost everyone.

Whatever style you choose, make sure you are getting the right size. Too big and you’ll be hoisting them up all day. Too small, and you’ll not only get VPL on both the legs and waistband, you’ll also be in a great deal of discomfort. Compression is the enemy of endo (another good reason to get fantastic knickers, as shapewear is not our friend). It is worth getting a few sizes if you often suffer endo-belly. A 12 is good for me most days, but on a flare day a 14 is just a bit more comfortable and accomodates that rapid expansion much better. Endo can also cause rapid weight changes – I’ve gained nearly two sizes in the past few months – so having bigger or smaller sizes on hand is an annoying necessity. If you gain weight, please don’t keep stuffing yourself into knickers that are too small. You’ll be horribly uncomfortable. It might be upsetting to have to accept that you have gained weight, but making yourself uncomfortable won’t help.

2) Elastic-waisted black trousers

Black trousers are a corporate essential. You can dress them down for casual Friday, but you can’t be caught short being insufficiently formal for a meeting or presentation. When I was in litigation I always had a pair of black trousers in my desk drawer just in case, after getting sent to court with very little warning wearing a skirt that was fine for a client-free day in the office but absolutely not ok for court.

I have multiple pairs of black trousers in a variety of styles – wide leg, boot cut, straight leg, high-waisted, etc – but the most important one in an endo-gal’s arsenal is a pair with an elastic waistband. They are so good on those days where a static waistband looks like Satan and you just want really just want comfort and a super easy outfit. I recently purchased this pair from Target, which don’t look superb in the website picture but look perfectly acceptable on and are very comfy. The only downside is that you can’t really tuck things into it, because the waistline does look a little cheap and, well, very obviously elasticised. That being said, I want another pair. One comment says that they are great for shorties, but they fit my 5’10” frame just fine as an ankle-grazing style. For $15, they are well worth it.

3) A stretch black pencil skirt

A black pencil skirt is, just like the black trousers, an office necessity. You can make it casual with a simple t-shirt and flats, or dressed up with a buttoned shirt or silky blouse. A pencil skirt is the most formal style of skirt, much as I love my flared midi-skirts. Thing is, of course, you don’t want just an elastic waist with such a clingy style – you want stretch EVERYWHERE. You don’t want it to be tight or compressing, either – you want one that just skims everything and sits comfortably. I recently got this one, also from Target, that fits the bill perfectly. It looks very smart, and doesn’t dig in at all. I wore it on a work trip to Melbourne that included flights, taxi rides, a seminar, walking all over the place, and Lord of the Fries. It doesn’t look terribly cheap, and it doesn’t look immediately like its a stretch fabric as opposed to an ordinary suit skirt. It’s a good length for me but would also be fine on a slightly shorter or taller person too.

4) Good tights

The holy grail of workwear for a skirt-wearing type. They hide a multitude of issues – dry patches or those little bits I miss when shaving – and just add a level of polish and sophistication. They also put a barrier between your foot and your shoe, which helps prolong the life of your shoes. They are required in many more conservative law firms if you wear a skirt, particularly if you appear in court.

They are a nuisance, though. Despite my extremely extensive wardrobe, I sometimes feel like I’ve spent more on tights than any other type of clothing. Thick ones are too warm in summer, but sheer ones rip at the drop of a hat. So many have built-in slimming, which is fun if you don’t have endo, I’m sure. I find those very painful.

However, there are tights out there that are both comfortable and not prone to laddering. I always look for tights that, when damaged, get holes rather than ladders. A hole just sits there. It doesn’t look great, but, unlike a ladder, it won’t start at your thigh and have ruined your entire leg by lunch time.

I also look for those with words like “comfort brief”, “wide waist-band” or “no dig”. If those fail me, maternity tights are always an option. I got a bunch of these Kayser tights on sale a few weeks ago, and they are saving my life (or at least my tum) at the moment. Very comfy, and they hole rather than ladder.

5) A slouchy blazer

I love a structured blazer. I feel amazing in a properly fitted suit jacket. Sometimes, though, everything hurts and you need to be able to flop in your chair and not feel constrained. For that, I love a looser, less structured blazer like Review’s Aries jacket, or a completely jersey blazer. I got one from Kmart that looks surprisingly professional when not covered in cat hair, but I can’t find it anywhere on their website.

This is less of a “must have” than the other things, but a jacket really does finish off an office outfit and is great for turning a casual outfit into an office-appropriate casual Friday outfit. Endo sufferers may not need a slouchy jacket, but I find that, when I’m having a really difficult day, pain-wise, being comfy everywhere makes a huge difference to my ability to tolerate it. A stiff jacket looks amazing but saps my spoons, so I feel that a relaxed blazer deserves a spot on this list.

Now, I realise this list sounds super boring. Basics usually are. To prove, though, that these pieces are important, I am going to do a week in the trousers and a week in the skirt, wearing them different ways, and including a slouchy jacket at least once in each week. As someone who spends 5 days a week in business or business casual, though, these basics are incredibly important to allowing me to get through the week with a minimum of pain and discomfort. I don’t need to rely on them every day, but having them there makes all the difference for those days when I am well enough to go to work, but only if everything else in my life is 100% easy and comfortable.

I’m planning a few more posts themes related to this. In addition to my proposed “comfy work clothes” lookbooks, I want to talk about about how I have coped with my sudden weight gain, and what I keep in my handbag and at my desk to make work easier for me when I’m struggling. Are there any other work, clothes or body-image-related posts you want to see?

January Gratitude

Published on January 27, 2019 by Bubbles in the Brain2 Comments

In the spirit of keeping some positivity in what could otherwise be a fairly gloomy blog, this year I want to commit to finishing each month with a post on things I am grateful for that month. I’m going to push myself to list ten things per month and to look for the silver lining even in the bad things.

Not every bad thing will have a silver lining, and some months will have far more good than bad, but I like being happy and I am trying to wire my brain to go to a happy place more than a sad place.

Before I begin, I want to note that I do not want the fact that I or other chronically ill bloggers do this as a stick to bludgeon those who don’t. Depression and anxiety can’t be cured simply by “choosing happiness,” and the realities of chronic illness are that happiness can be hard to find. It is not the duty of the ill to be positive.

This sickly sausage, however, is going to try. Without further ado, this is what I’m grateful for in January:

1) Three weeks of holiday

As readers will know, last year I made a very quick and terrifying decision to leave my old job and go into a different role. Between leaving the old and starting the new, I had about three weeks without work. This let me relax properly, let go of the tension that I had built up during the year, get on top of some outstanding domestic tasks, and really focus on my health. I was able to use the time to run, swim, sleep, play computer games, take mornings slowly. I was able to build some good habits around fitness, getting 5,000 steps a day and doing some form of exercise daily, even just walking the dog (who was delighted to have me home).

2) Beach time

After not having gone to the beach in ages, in January I got to go twice. I love being at the sea, swimming, diving, smelling the salt air and hunting for tiny fish to watch. My husband reintroduced me to boogie boarding, which I hadn’t done since I was a little girl. I’d forgotten how fun it is!

Image description: a man holding a lead with a corgi jumping on the end. They are at the beach, in the surf. This is my little corgi Pearl finding out that waves are wet and splashy, and bigger than her.

We also discovered that our dog hates the ocean, possibly because she is so stumpy.

3) My new job

Nice as my break was, paid employment is a privilege. Even more important than my income, however, is that my new job is interesting and challenging – I’ve never done anything like this before and I’m actually really enjoying it. Equally important is that my colleagues are truly lovely. I do miss my old work besties, but we still chat regularly on facebook and in the meantime, I’m building relationships with (mostly) women I already admire and respect.

4) My catio

One of my Christmas presents from my parents was some money to put towards an outdoor enclosure for my beautiful, noisy, pest of a cat. This 1.8m enclosure lets him feel the wind in his whiskers whilst staying safe from the various perils of cars, dogs, and other cats. It also stops him from terrorising the local wildlife. His favourite outdoor activity is eating the grass.

Image description: a ginger cat looking at the camera. He is lying on the top platform of a grey, multi-tiered cat tower. He is inside a large cage made of netting covered in a green shade cloth. There is a litter tray, a kennel and a pink chair in the cage, which is placed in the corner of two brick walls and floored half in grass, half in pebble-dash path. This is Max enjoying his outdoor time while I do some garden chores so we can hang our together outside.

I think its super cool and I can’t wait to deck it out with more stuff for him.

5) Thunderstorms

My dog may be scared of storms, but I love them. I love watching the horizon glow with sheet lightning, or see bolts flash and crackle across the sky. Summer thunderstorms here are brief but generally very impressive.

6) New Pathways

Some news that I haven’t yet shared on this blog is that I was recently given a tentative additional diagnosis of adenomyosis. I’ll blog more later on what that is and how it affects the sufferer, but for now I am focussing on this: my ongoing post-surgery pain has a possible explanation, and therefore a possible treatment pathway. I’m not just a weirdo and my surgery wasn’t a waste of money.

7) My parents’ lovely Czech neighbour

He gave them a whole bunch of plums from his garden, which is an act of sweet neighbourliness that I just love, and I profited because my parents passed some on to me.

8) My new diaries

I’ve talked previously about my cool new diary set from Leaders in Heels. I’ve really loved how they’ve worked for me throughout January to keep me motivated and organised, whilst still giving me space to doodle and journal.

Image description: four books in a stack; a black one with white writing, a pink one, a lilac one and a dark navy one. A ginger cat is lying behind them and his tail is flopped over them. The books and cat are on a blue checked bedspread with a red wall in the background. Max keeping me company on a flare day and looking after my diaries for me.

9) Fun hair

I bought a bunch of wigs recently. Some were purchased last year during my horrible experience with tramadol. Some were purchased in January when I realised I love wigs.

Image description: a head-and-shoulders shot of a twenty-something white woman against a cream wall. She has long grey hair in a half-up style and sparkly blue lipstick. She is wearing a blue cold-shoulder dress with white nautical symbols on it. I love this grey wig from Wig Is Fashion. My real hair will never be this long, and I’ve always loved the way grey hair looks but didn’t want to bleach my hair or commit to dying it. This wig finally let me have it and I feel like a witchy mermaid. It’s great.

It’s too hot at the moment to take advantage of them, but this year I’ll be able to change my hair up easily and without having to commit to a different style or colour. Exciting stuff.

10) How privileged this list is

The fact that I can celebrate these small, trivial things like wigs and plums is because I was born into and continue to live a white, middle-class life in a developed nation. When I turn a tap, I take it for granted that I will immediately see clean water. When I open the pantry, it might not have as much chocolate as I’d like, but it will certainly have food (usually 16 million tins of diced tomatoes, for reasons I don’t fully understand). I am highly educated, I have a stable job, and I am not persecuted for my gender, religion or anything else. My government may change PM more often than I change jackets, but we are unlikely to see coups or major bouts of civil unrest. I am safe.

What are you grateful for this month? Do you keep a gratitude diary or something similar?

The Lessons of 2018

Published on January 13, 2019January 12, 2019 by Bubbles in the Brain1 Comment

TW: depression, ableism, general unhappy stuff

2018 was a challenging and scary year. I once again defied my doctor by seeking a second opinion on whether further surgery was going to help, and then going for it. I left the organisation I’d worked at for five years. I adopted a dog and a cat. I endured massive amounts of pain and dealt with debilitating medication-induced depression. I also learned some things.

1) The world forgets the sick and disabled

Not the most cheerful starter, I’ll admit. It’s true, though. Healthy people (and I’m sure I was guilty of this prior to really suffering from endo) are massively prone to making sweeping statements that reveal that they simply do not factor in the sick and disabled. For example, “everyone should be able to change a tyre.” “Saying things are too expensive is just an excuse.” “There’s no reason not to do this thing.” They speak from the perspective of a totally healthy person and totally forget that actually, disability and illness are perfectly valid reasons why people can’t do the things they are talking about. Whether they mean to or not, it is really exclusionary language and it leaves a lot of disabled people sitting there thinking, “What about me? Why don’t I factor in here at all?” It’s a really isolating feeling. It makes you think that the world does not care. We’re an after-thought at best.

blur-close-up-dark-159333 — Image description: a hand pressed up against glass, touching its own reflection.

2) Some people actively hate the sick and disabled

It’s an attitude I honestly thought had gone the way of the third Reich, but there are real life people existing today that think disabled people are a drain on society, contribute nothing, and therefore have forfeited any right to assistance, and, on occasion, existence. It was shocking and horrifying for me to learn and I’m a bit ashamed I didn’t understand it fully until last year.

Image description: Scrabble tiles that spell out “Hi haters”

3) Spoon theory is so applicable

I’ve previously written about spoon theory, and it honestly is such a useful way to describe how I navigate a day. I became particularly aware of it over Christmas. We went to stay with my husband’s family in Adelaide, and there were a lot of people there. I was tired from the drive (it’s at least 12 hours from where we live in the east), my pain levels were quite high, it was hot, and the noise and pressure to socialise just wore my spoons down before I’d really done anything at all. I felt terrible, because my in-laws were so generous and hospitable, and I ended up spending a good chunk of Christmas Day in bed because it was all I could cope with. I was spoonless. Without spoons. Physically, emotionally and intellectually completely drained.

Image description: a row of rainbow spoons, ranging from pink to yellow to green to blue, in bubbly liquid

4) You have to make the most of the good times

If I have a good day, I need to grab it with both hands and exploit it for all its worth. That’s the day I need to text my friends and ask if they are free after work. It’s the day I need to go for a run, clean the house, shop for groceries, walk the dog and cook for the week ahead. Those days are limited and precious and you never know when they will stop happening, so you have to carpe the heck out of that diem.

Image description: a cheerful toy sheep next to an insulated coffee mug with a blue check pattern that says, “today is gonna be a good day”

On the flip side, of course…

5) Life as a spoonie is a gigantic series of compromises and gambles

If I do too much on a good day, I risk guaranteeing that my next day will be bad. On the other hand, there’s no guarantee that it won’t be bad anyway, so maybe I should just go for it. On the other other hand, tomorrow I do have this thing I’m supposed to do so perhaps I should be extra careful.

It’s a similar story with medication. The mirena is jam-packed with wonderful progesterone that should dramatically slow the growth of my endometriosis. However, it now turns out that it could be responsible for a whole bunch of my pain. Meanwhile, my Zoladex definitely reduces my pain but menopause is not exactly a party, and adjusting to it is seriously rough.

Image description: Five red translucent dice with white spots and two smalls stacks of grey and white poker chips

6) A doctor you can work with is worth their weight in gold

I have seen four specialists since my initial diagnosis in 2016. The first one performed the surgery that sent my endo spiralling downhill. The second refused to believe that I could possibly have endo in me four months after my initial surgery and seemed like he didn’t believe my pain because he couldn’t provide a reason for it. The third was great for a while but it felt like, after the second surgery and sticking me full of progesterone devices, that he kind of lost interest and was a bit annoyed that I wanted more relief than I was experiencing. When I met Dr Edi-Osagie, I finally felt like I had found a doctor who listened and genuinely cared. The difference that makes is literally making me tear up just thinking about it. It matters so much.

Image description: a hand holding a stethoscope against the chest/tummy of a white teddy bear

7) Sometimes hard and scary decisions are necessary

Quitting my job was terrifying. Committing to a third surgery that would cost a lot of money was terrifying. Every time I take a new medication it is scary because I have such terrible trouble with side-effects. The decisions we have to make can alter our lives and our bodies, sometimes irrevocably, and there are so many to make. I’m scared every time, but I’ve got a lot better at taking the plunge because I know I have to.

Image description: a grey wall with seven identical brown doors reflected in the shiny floor

8) Depression is harder than you can possibly explain

To someone who has never suffered that overwhelming apathy and bleakness it can sound silly, like something you should just be able to pull yourself out of with a little bit of gumption. You cannot. It’s like trying to sit up when a giant is stepping on your back. Even writing it out now I can’t actually convey what it feels like.

Image description: a person in a black hoodie and blue jeans sitting against a blue wall holding a square piece of red paper over their face. The paper has an unhappy face drawn on it.

9) You cannot overstate the importance of support

I actually can’t imagine what my life would look like if I didn’t have my husband and my parents. Ok, I can, but I don’t want to, because I would be very poor, living in a pigsty if I hadn’t been evicted for not paying rent, not eating properly, and probably not having the strength to challenge my previous doctors when they started to give up on me. I certainly wouldn’t have the wonderful life I have now – and it is still a wonderful life, even if the tone of this blog post may be making people question how I feel about it.

Image description: A circle of six people’s hands, each hand holding the wrist of the next person.

10) You are stronger than you think

Novels and movies tend to romanticise suffering somewhat, and so you grow up thinking, “yeah, I’m tough, I could suffer.” Then you do, and you realise that actually suffering really sucks and you can’t do it after all…but then you can. Every day that you are still here is another day you’ve kept fighting. I re-read the phrase, “while there’s life, there’s hope” today, and honestly, I have never appreciated that quote so much. One day this particular illness may outstrip my capacity to live through it. I don’t think it will, but it could. But not today. There’s hope.

Image description: a plastic purple dinosaur (maybe a T-Rex?) on a pink background, because dinosaurs are hecking strong and so are we.

Did you discover anything new in 2018, either about you or about the world in general? Let me know in the comments.

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