Life – Bubbles in the Brain

5 things to help you sleep

Published on December 5, 2021 by Bubbles in the BrainLeave a comment

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.

2020: Hopes for the Future

Published on January 15, 2020January 11, 2020 by Bubbles in the BrainLeave a comment

Buckle in, friends. This is a long one!

I’ve written before about how the new year is always a time of hope for me – even though it is really just a Tuesday turning to a Wednesday, divided by the fairly arbitrary line of 31 December and 1 January, it always feels like a clean slate. I’ve also written about the importance of people with endo being realistic in their goal-setting. Today, I want to talk about my goals for 2020, and hear yours.

First, a brief note on my 2019 goals. I achieved two of them. They were to improve my Arabic, get my scuba qualification, and read the Old Testament of the Bible. Well, I succeeded in my scuba qualification (a few months later than planned) and will be getting my advanced qualification later this year. I managed the Old Testament with time to spare, and I’ll crack on with the New Testament in 2020. As for Arabic – turns out that is really hard to learn yourself, because trying to get any two courses, youtubers or Arabic-speaking friends to agree on the way to say something is impossible. There are too many dialects, and trying to find a consistent source for Modern Standard Arabic was a wild goose chase. However, I did start Mandarin lessons, and I can now tell you ‘Wo mao feichang shuai,’ (my cat is very handsome), although apparently you should only say ‘shuai’ about people, not cats, even though Max is a very handsome cat indeed.

Image description: A ginger striped cat with green eyes is lying on his side on a concrete floor, looking just below the camera. There is a garage roller door behind him.

Ultimately, I think I took the lessons from my own post to heart, and the Arabic failure was because I lacked resources (which I should have researched more) rather than because my goal-setting process was flawed.

This year, my goals are a little different. I still want to finish off the Bible by reading the New Testament, which is fairly easy to plan out and achieve; it just requires a bit of commitment. My other two are more projects than goals.

Project 20 in 2020

My first project is very involved. Have you heard of the ’20 in 2020′ craze that’s sweeping the bullet-journalling community? Basically, you set 20 goals to complete in the year 2020 – bonus points if they somehow incorporate the number 20 (e.g. 20 days with no social media, 20 days of walking 20k steps or more, etc). Now, trying to do 20 sets of 20 things isn’t realistic for me, so some (most) of my goals are per month instead. I’ll be trying the following:

Publish 20 posts on this blog!
Reading 12 types of books I don’t normally read (e.g. I’m a fantasy/sci-fi girl, and rarely read autobiographies);
Reading 20 books by women (my first list was a little male-heavy; this list is also diverse in terms of ethnicity and genre);
Watching 12 movies I don’t normally watch (I’ve committed myself to such cinematic horrors as a gangster film and a sports film – two genres I would never normally touch);
Listen to 20 new artists (I felt like 20 works for this category as it is pretty easy to listen to music – please leave some recommendations in the comments!);
Go on 12 walks around the local region;
Go on 12 adventures (a coast trip, more scuba, a day at a museum, laser tag – anything fun and different);
Go on 12 dates with my husband;
Run 20km per month (or swim 4km, if running isn’t possible);
Go to the gym twice a week;
Save 20% of my income;
Write monthly emails or letters to my grandparents;
Write monthly notes to my sponsor child;
Bake 12 new things;
Cook 12 new meals;
Complete 12 art projects;
Do 12 pieces of calligraphy;
Complete 12 pages in my beautiful Citrus Book Bindery journal that my wonderful parents bought me for Christmas;
Get rid of 20 items of clothing (that is a net reduction – if I buy 20 new things and get rid of 20 old things, that doesn’t count – I’d have to get rid of 40 old things. Getting rid of can mean selling, donating, re-purposing, or binning only if it is beyond salvation, as a way of trying to live green).
Finish one computer game per quarter (I’m terrible for buying a bunch of games and then just not finishing them, unless they are Batman or Tomb Raider).

Now, this may be an epic failure, because on the face of it, it breaks a lot of the rules I set out in my goal-setting post. However, take this list with a pinch of salt, because it has two important rules.

My health comes first. If trying to complete these things starts to cause my health to decline, everything else takes a backburner, no guilt, until things are back where they should be.
Even if I remain in perfect health all year, this is a list to try, not a list I will berate myself for not completing. The aim of this list is to be open-minded, try new things, have adventures, and see if I can be a more well-rounded, better-educated person with more experiences at the end of it. I want it to make me into someone who doesn’t put things off for another day (which tends to result in them not getting done ever). If I manage that, this is a success, even if I don’t complete a single category on this list.

I want to do it all, but if I can’t, I’m not going to be unhappy with myself. I will only be unhappy with myself if I don’t even try.

You’ll notice I haven’t put traditional New Year’s guilt goals in there (lose 20 kilos, for example). This list is about making me better and happier through new experiences and good habits, not about guilt.

Project Better Life

My second project is to take control of my life again. Last year, my goals related to singular events that I wanted to achieve, and once achieved (or abandoned) I kind of just drifted along a bit. This year, my focus is broader.

What does reclaiming my life look like? Well, it involves the following:

Using my time productively: instead of mindlessly scrolling the internets or watching something on Netflix I’ve seen a hundred times before, I’m going to use the time in furtherance of my other goals. That might mean reading one of the books from the above list, using my commute to listen to Audible or a new artists,, spending time with my husband, or going to a gym class. My time is valuable and could be used for so many good things. I don’t want to waste it any more.
Follow the two-minute rule: if a task can be done in two minutes, do it. That means no more floordrobe, breakfasts prepped ahead of time, etc.
Being consistent and persevering until I have good habits: I’m going to set myself tasks and schedules(flexible and subject to illness) to see what sticks and what I can keep up with. For instance, I wake up earlier than my husband, so if I can get a load of laundry into the machine on Saturday mornings before he does, I’ll actually have my favourite undies clean and ready to go each week instead of having to resort to the Emergency Knickers (you know, the ones that aren’t that comfy and maybe give you a wedgie but you just can’t justify throwing them out so you shove them into the back of the drawer and wear them when the other ones aren’t available. I’m sure I’m not the only person with this sort of underpants division). Once things are automatic, they’ll be easier to keep up.
Acting mindfully, deliberately, in pursuit of my long- and short-term goals, and in support of my mental and physical health. I want the choices of what I eat, what I use my time for, what I do at work, to be deliberate and take me in a specific direction. I am going to check back in with my goals regularly to make sure I stay on track.

The reason for this project is simple: endo – any chronic illness, really – robs you of control. I already know that when I have a habit, it is easier to keep it up when I’m lacking in spoons and just want to collapse. I know I sound like a self-help book right now, but I’m feeling positive. I want to ride this wave of energy through the first quarter of the new year and into new, good habits. Once I hit the quarter-year crisis, hopefully I’ll be fore-armed and be able to keep things up on a more long-term basis.

You’ll notice none of the above relate to my endometriosis specifically. You just can’t plan for or control chronic illness. All you can do is deal with it as it happens and keep your mental health strong.

Once again, I’m using my Leaders in Heels ‘Make It Happen‘ planner as a goal-setting tool. I’m not sponsored by LIH or anything; I just really love this planner. It has a great layout and devotes a heap of space to breaking your goals down and referring back to them.

What are your goals and plans, dear readers? What do you want to change this year, if anything? Do you set goals? Once again, please drop recommendations for new music in the comments – new adventures too! I’d also love to hear your thoughts on what you want to see in Bubbles in the Brain this year. Do you have questions about endo you want answered? Topics you wish I’d write about? Let me know.

2019: Lessons Learned

Published on January 1, 2020December 31, 2019 by Bubbles in the BrainLeave a comment

It’s been a long time since I’ve posted anything. The reason is very simple: life got in the way, as it often does. In September I was so healthy I was too busy living life to blog; in October and November I was too sick. In December I was just too lazy.

Now, however, I am back, and with a goal of publishing 20 posts this year. Let’s see if I can stick to it – 20 posts for 2020. Expect something roughly every fortnight, barring disasters.

I hope, my dear readers, that you have been well and that endo has not kept you from having a peaceful, enjoyable Christmas break. I’ve been fortunate that mine has been behaving pretty well of late.

Today, I want to kick off the new year by looking back at the old one, and recapping some of the thing I learned during it. You can also read my lessons from 2018 here. Hopefully some of these lessons will also be useful to you. Some might be totally different for you – if your experiences are different to mine please leave a comment below.

1) Big decisions can bring big rewards

At this time last year, I had quit my old job as a litigation lawyer and was waiting to start my new one as a policy lawyer. In other words, I was moving out of the world of appearing in court and arguing about the law and into the world of writing and interpreting it. It was a huge and scary move, but it was so worthwhile. I love my new job; I have learned fantastic new skills, come to appreciate an area of law I never would have previously considered, and met amazing new people. Most of all, my health has benefited enormously. Away from the intense stress of family violence litigation and in a more disability-friendly workplace, my endo pain reduced and I was able to recover when I needed to without pressure or condemnation. If you are considering a similar move, I encourage you to read my post on making this kind of decision.

Another huge decision was coming off the depot shot. I wrote about what factors to consider in making a decision like this last year, and that it how I made this one. Remember that dropping meds may not be a success story for everyone, so think carefully before doing it.

I transitioned to the depot (aka leupron or leuprorolin) after my Zoladex went wildly wrong. Depot was pretty hit and miss for me – it worked well some months, and did nothing at all others, leaving me jumping in and out of menopause like a frog with hot flushes, causing my mood, sleep cycle and weight to go wacky. After it failed yet again in November, I threw my hands up and said, ‘enough is enough.’ I didn’t get my next shot. I was expecting disaster, but instead, things got better. My pain is massively decreased and my weight and sleep patterns are returning to normal. Combined with dietary measures, I’m feeling better than I have since my first operation. I don’t know if being on it gave my body the rest it needed or what, but I’m grateful.

Despite ongoing fears, I plan to keep making big decisions with courage over the next year.

2) There will always be people who refuse to understand

Whether they be doctors, family, annoying strangers, or even other members of the endo community, there are plenty of people who will steadfastly refuse to accept what they are being told about endometriosis if it contradicts their own experience or worldview. I see this constantly in the Australian endo community – sufferers regularly report their experiences with unsympathetic family, colleagues and medical practitioners. I’ve experienced it before too. Try and gently educate if you have the energy, but if it becomes clear that you are banging your head against a brick wall, just leave it. You can only hope that enough people saying the same thing as you will eventually change their minds. In the meantime, your precious energy is better spent elsewhere.

3) We can’t hold ourselves to the same standard as healthy people

By this, I’m not saying we have a license to be awful people. What I’m saying is that we can’t always manage the same activities, and that’s ok. We won’t always get the same results even if we do manage, and that’s ok too. We are not in competition. We can only try our best, seek balance between our health and the rest of our lives, and accept ourselves as enough. Giving our all may not look the same as a healthy person giving our all, and it may cost us much more to do so; don’t try and force yourself to keep up if you can’t.

4) There are so many other illnesses

I hadn’t realised the number of other chronic conditions that so many endo-warriors deal with in addition to endo – fibromyalgia, adenomyosis, chronic fatigue, vaginismus, interstitial cystitis, and polycystic ovarian syndrome, to name a few. We are sickly, sickly children.

We are also more likely than most to suffer the various reproductive cancers – particularly ovarian cancer – because the symptoms are so similar to those we already have that we often don’t seek a diagnosis until it is too late. I’m going to write more on the different reproductive cancers and some of the other secondary conditions I haven’t covered yet a bit later in the year; keep an eye out.

5) Just as people can be cruel or ignorant, they can also be very kind

Not everyone we meet will understand endo or be nice about it, but there are some absolute gems out there. You hear stories of people with endo collapsing at the shops and being helped by random women; of people getting caught short with unpredictable periods and angels with spare pads or tampons standing by; of sufferers with no family being hospitalised and visited by other endo-warriors bearing snacks and magazines. In my own life I have my family and friends, who will do anything to help me when they know things are getting bad.

When you see that kind of beautiful act, treasure it; do what you can to spread it further. The world can seem like a really dark and awful place sometimes, but those little moments bring hope and comfort. In the words of Cinderella: have courage and be kind.

So, those are the main lessons brought home to me in 2019. What did you learn, or have reinforced? 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.

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?

Integrity

Published on July 3, 2019 by Bubbles in the Brain1 Comment

To me, integrity is one of the most important things a person can have. All the values I’ve done monthly quote collations of are important, don’t get me wrong, but integrity is definitely near the top of the list. It often requires many of the other virtues to enact. In its simplest form, it is being true to yourself and doing the right thing, even when that is hard or detrimental.

It’s important to me in my personal life, but it’s also really important to me professionally. Believe it or not, lawyers have an incredibly strict code of ethics. One of my jobs is regulating practitioners who fall short or outright violate that code. The code makes it clear that our first duty is to the court, and our second to the client. Even if it hurts your client, you cannot mislead the court; even if it hurts you, you must serve your client to the best of your ability. So, despite what TV may suggest, a lawyer (in Australia, at least) cannot go in front of the court and argue that their client is innocent of a crime if the client has told the lawyer that they are guilty. If a client tells you one thing, you cannot tell the court another, and if your client insists that you must, you need to withdraw from the case, no matter how many dollarydoos you’ll get by staying in it.

There’s a whole bunch of other things in that code that we have to uphold – we have to be courteous, not bring the profession into disrepute, act in a timely manner, etc.

I’m really passionate about this, so it bothers me massively when I see people (particularly my fellow lawyers) breaching our ethical code, failing to uphold or enforce the law, or generally taking the easy way out just because the hard way is, well, hard. My family and colleagues have had to sit through several rants recently when I got outraged that someone was behaving in a way that I did not think demonstrated integrity. I hope I never do lose that outrage, even if it bores the people around me, because this is important.

As a result, this is a month I was really quite excited to do the quotes for.

Please excuse my cover picture of the doughnut, by the way. I use a free stock photo engine for my cover photos, and the only thing for “integrity” was a picture of circuit boards, so in the end I had to go with “goodness”, which offered me many pictures of attractive men and one of a doughnut. I’m pretty into doughnuts, so I figured that at least that would be true to myself, which is part of integrity…so, yes. A doughnut is now the symbol of integrity.

One final side-note: I’ve decided to start linking the author of the quote to a short thing about them in case you like a quote and want to find out more about the person who said it. Let me know in the comments if that is useful or just unnecessary and boring.

Anyway, the quotes.

“Supporting the truth, even when it is unpopular, shows the capacity for honesty and integrity.” – Steve Brunkhorst
“One of your most prized possessions is integrity; if this is you, then you should never compromise it.” – Byron Pulsifer
“Power really is a test of character. In the hands of a person of integrity, it is a tremendous benefit; in the hands of a tyrant, it causes terrible destruction.” – John Maxwell
“Make living your life with absolute integrity and kindness your first priority.” – Richard Carlson
“Live so that when your children think of fairness, caring and integrity, they think of you.” – H. Jackson Brown Jr
“Be impeccable with your word. Speak with integrity. Say only what you mean. Avoid using the word to speak against yourself or to gossip about others. Use the power of your word in the direction of truth and love.” – Miguel Angel Ruiz
“Admitting one’s own faults is the first step to changing them, and it is a demonstration of true bravery and integrity” – Philip Johnson (If I have correctly attributed this quote, I recognise the irony of quoting a Nazi sympathiser and possible Nazi agent who was utterly lacking in integrity, and I think it is important to acknowledge that there is absolutely no integrity in just paying lip service to the concept. If I’ve attributed this wrongly, then I apologise to the Philip Johnson who actually said it and sincerely hope he isn’t a Nazi.)
“The personal cost of keeping your own ethics sound and true may seem a bit of a burden at times but that is a minimal price to pay to be true to yourself. There is absolutely no advantage to changing or altering a set of ethics that portray a person of value and integrity.” – Byron Pulsifer
“When you make a commitment to yourself, do so with the clear understanding that you’re pledging your integrity.” – Stephen Covey
“A single lie destroys a whole reputation of integrity.” – Baltasar Gracian
“One of the truest tests of integrity is its blunt refusal to be compromised.” – Chinua Achebe
“Six eseential qualities that are the key to success: sincerity, personal integrity, humility, courtesy, wisdom, charity.” – Dr William Menninger
“Having a grateful disposition brings about other virtues, including generosity, compassion, humility, joy, wisdom, trust and integrity.” – Bree Miller
“We learned about honesty and integrity – that the truth matters…that you don’t take shortcuts or play by your own set of rules…and success doesn’t count unless you earn it fair and square.” – Michelle Obama
“Integrity is doing the right thing, even when no one is watching.” – C. S. Lewis
“A life lived with integrity – even if it lacks the trappings of fame and fortune – is a shining star in whose light others my follow in the years to come.” – Denis Waitley
“You can’t, in sound morals, condemn a man for taking care of his own integrity. It is his clear duty.” – Joseph Conrad
“Integrity is making sure that the things you do and the things you say are in alignment.” – Katrina Mayer
“With integrity, you have nothing to fear, since you have nothing to hide. With integrity, you will do the right thing, so you will have no guilt.” – Zig Ziglar
“Characterise people by their actions and you will never be fooled by their words.” – Anonymous
“Whoever is careless with the truth in small matters cannot be trusted with important matters .” – Albert Einstein
“Knowing what’s right doesn’t mean much unless you do what’s right.” – Franklin Roosevelt
“People may doubt what you say but they will always believe what you do.” – Anonymous
“Real integrity is doing the right thing, knowing that nobody is going to know whether you did it or not.” – Oprah Winfrey
“To know what is right and not do it is the worst cowardice.” – Confucius
“To thine own self be true, and it must follow, as the night the day, thou canst not then be false to any man.” – William Shakespeare
“What is left when honour is lost?” – Publilius Syrus
“No one can be happy who has been thurst outside the pale of turth. And there are two ways that one can be removed from this realm: by lying, or by being lied to.” – Seneca
“There are seven things that will destroy us: wealth without work; pleasure without conscience; knowledge without character; religion with sacrifice; politics without principle; science without humanity; business without ethics.” – Gandhi
“May integrity and uprightness guard me as I wait for you.” – Psalm 25:2

What is the most valuable virtue for you?

Nevertheless, She Persisted

Published on June 10, 2019June 10, 2019 by Bubbles in the BrainLeave a comment

Last month I shared my favourite quotes on the topic of consistency. Today I want to write about her cousin, persistence.

Like consistency, persistence is absurdly hard for the chronically ill. I swear, every time I get in the rhythm of something and think I’m finally achieving things, I get sick or have a flare or need a new dose of depot or something that throws everything out of wack. It can be really hard to claw your way back into life after a derailing like that. Other times, it can be hard to fight on through the black cloud of misery that attaches to the reality of the word “chronic.” But, by and large, we do. Nevertheless, they persisted.

Now, I have a lot of problems about the rhetoric chucked around about persistence. So much of it focuses on “success”, and seems to define success in a pretty narrow, business/entrepreneurial way. For me, I’ve succeeded if I’ve made it through the day upright and the kitchen is only mostly messy instead of buried under dirty dishes. I also don’t think that we should practice good qualities, like persistence, because they bring an inherent reward – we should do it because it is the right thing to do, and because being able to say “I persisted” is a reward in and of itself.

I also have some problems with quote #8, because I think, when the battle is so very hard, even a strong person can be beaten , so I’d ask people to take that one with a grain of salt. That being said, I do think persistence is a demonstration of strength, even if the strong don’t always succeed at it.

As always, I’ve tried to include quotes that look at different angles of the subject – most quotes on persistence are just variation on “persist and you’ll succeed!!!!” Sometimes, though, we need to know when persistence has just become stubbornness, and when it will hurt us rather than help. We also need to acknowledge that you can persist only so long without ceasing. Sometimes, persistence includes resting for a while before you pick your burden back up – it’s the getting back up that makes it persistence, not the notion of doing it constantly.

Regardless (or nevertheless), here are some quotes about persistence to get you through the next little while:-

“Persistence pays off.” – Jeffrey Dean Morgan
“Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.” – Hal Borland
“Nothing in this world will take the place of persistence. Talent will not: nothing is more common than unsuccessful men with talent. Genius will not: unrewarded genius is almost a proverb. Education will not: the world is full of educated derelicts. Persistence and determination alone are omnipotent.” – Calvin Coolidge
“We are made to persist…that’s how we find out who we are.” – Tobias Wolff
“Success is not the absence of failure; it’s the persistence through failure.” – Aisha Tyler
“Never let your persistence and passion turn into stubbornness and ignorance.” – Anthony J D’Angelo
“A little more persistence, a little more effort, and what seemed hopeless failure may turn to glorious success.” – Elbert Hubbard
“Permanence, perseverance and persistence in spite of all obstacles, discouragement and impossibilities: it is this, that in all things, distinguishes the strong soul from the weak.” – Thomas Carlyle
“Throughout human history, in any great endeavour requiring the common effort of many nations and men and women everywhere, we have learned – it is only through seriousness of purpose and persistence that we ultimately carry the day. We might liken it to riding a bicycle. You stay upright and move forward so long as you keep up the momentum.” – Ban Ki-Moon
“With patience and persistence, even the smallest act of discipleship or the tiniest ember of belief can become a blazing bonfire of a consecrated life. In fact, that’s how most bonfires begin – as a simple spark.” – Dieter F Uchtdorf
“Some people mistake grit for sheer persistence – charging up the same hill again and again. But that’s not quite what I mean by the word ‘grit’. You want to minimise friction and find the most efficient way forward. You might actually have more grit if you treat your energy as a precious commodity.” – Reid Holfman
“To make our way, we must have firm resolve, persistence, tenacity. We must gear ourselves to work hard all the way. We can never let up.” – Ralph Bunche
“Persistence is to the character of man as carbon is to steel.” – Napoleon Hill
“The real issue is not talent as an independent element, but talent in relationship to will, desire and persistence. Talent without these things vanishes and even modest talent with these characteristics grows.” – Milton Glaser
“In life, an abundance of confidence gives us higher motivation, persistence, and optimism and can allow us to accomplish things we otherwise might not have undertaken.” – Whitney Tilson
“Persistence and determination are incredibly important. But sometimes you need to analyse the situation and understand when you’re wrong. You need to be able to cop to being wrong, learn to change, and continue to grow as a human being.” – Sasha Grey
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” – Maya Angelou
“I will persist until I succeed. Always will I take another step. If that is of no avail I will take another, and yet another. In truth, one step at a time is not too difficult. I know that small attempts, repeated, will complete any undertaking.” – Og Mandino
“A failure is not always a mistake. It may simply be the best one can do under the circumstances. The real mistake is to stop trying.” – B F Skinner
“You go on. You set one foot in front of the other, and if a thin voice cries out, somewhere behind you, you pretend not to hear, and keep going.” – Geraldine Brooks
“If you won’t fly, then run; if you can’t run, then walk; if you can’t walk, then crawl, but whatever you do, you have to keep moving forward.” – Martin Luther King Jr
“If you are going through hell, keep going.” Winston Churchill
“Courage doesn’t always roar. Sometimes it is the quiet voice at the end of the day whispering, I will try again tomorrow.” – Mary Anne Radmacher
“It does not matter how slowly you go as long as you do not stop.” – Confucius
“My strength lies solely in my tenacity.” – Louis Pasteur
“as long as there is breath in you – persist.” – Bernard Kelvin Cline
“Perseverance is the hard work you do after you get tired of the hard work you already did.” – Newt Gingrich
“To persist with a goal, you must treasure the dream more than the costs of sacrifice to attain it.” – Richelle E Goodrich
“Life is made up of a series of tests, trials and great opportunities. Some are momentary, but most take endurance.” – Michael K Simpson
“In order to persist, you have to ensure that you surround yourself with positivity.” – R L Adams
“Character consists of what you do on the third and fourth try.” – James A Michener

Do you have a favourite quote that pushes you to keep going when you think you can’t take another step? What makes persistence a battle for you?

Next month I’ll be collecting quotes about integrity, so stay tuned.

April Gratitude

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

Another month has passed astonishingly fast, and it’s that time again – a monthly gratitude post.

Not going to lie, April has been super hard, and so finding things to be grateful about has been trickier than usual. I haven’t really had any spectacular lows, but it’s felt like I’ve been in a constant slump. I’ve had a number of sick days, and had a really bad experience with my last Prostap injection (a painful infection at the injection site and ongoing struggles with the side-effects). The ongoing pressure of the adenomyosis and the general malaise and lack of hope that comes with chronic pain has been exceptionally hard to deal with.

However, I made a commitment to be more grateful and positive this year, and these posts force me to consider the good things in my life, so let’s go.

1) Easter

Close-up Photo of Bunny Plush Toy — Image description: a grey felted rabbit holding a pink felted egg with white spots. It is standing on a next on a wooden board and there are some white flowers next to it.

I wrote about what Easter means to me as a chronically ill Christian, so I hope I’m not cheating by mentioning it again. There are plenty of reasons to be grateful for it, though. A four-day weekend (followed shortly by ANZAC Day), lots of chocolate, and, of course, the celebration of Jesus’ sacrifice that means an afterlife in paradise. That’s always good.

2) Girl’s night

I got a chance to spend the evening with my four best girls. We are a diverse group in both personalities and backgrounds, but we still have plenty in common – enough that we have stayed friends for ten years during the most turbulent times of our lives. Perhaps our greatest commonality is our love of great food, which we ate at tonne of. One of this fabulous group is from Bangladesh, and boy, does her mum create the most amazing feasts ever. I could LIVE off her dahl. Her spinach is mind-blowingly good. She is single-handedly responsible for making me like cauliflower.

Sure, it was incredibly high FODMAP and I was in agony the next day, and I accidentally ate a chilli, but it was entirely worth it. And now I’m craving her spinach. Damn it.

Also, the chance to see my four wonderful best friends is always so good. Everyone should have that friend or group of friends that they love and trust and always feel incredibly happy to see, even when life is hard or you don’t want to socialise. This is that group. There is no feeling in the world like spending time with my girls.

3) ANZAC Day

Red Petaled Flower in Macro Photography — Image Description: a red poppy on a field of grey grass.

I may be pretty anti-violence, but I am not against people standing up to invaders. I can also appreciate the courage, heroism and comradeship displayed by the ANZACS and the other soldiers of WW1. Can you imagine how terrifying it would be to suddenly see a tank coming over the horizon in a war where cavalry with swords were still in common usage? Can you imagine the mud, the blood, the terror, the cold in winter and the searing heat in summer, the disease, the privation and the utter uncertainty? I don’t think war is something to celebrate, but the qualities of the soldiers who fought are, and their deaths should be remembered and commemorated. I am grateful for what they did to ensure that we won the war.

4) An income

In the last month I’ve seen a lot of articles and the like on the difficulties of people with chronic illnesses who also have to deal with a low income or poverty. This one in particular tugged at my heartstrings. Australia has a good social security system compared to some countries, but as a lawyer I heard a lot of stories about people struggling with bureaucracy and a lack of understanding of the nuances of their condition. I am incredibly grateful that I don’t have to battle for Centrelink, or try and live on the amount dispensed. A stable income, having enough left in your pay after the necessities to save or give to charity – these are privileges that cannot be underestimated.

5) Changing leaves

Landscape Photography of Trees — Image description: a tree with golden and green leaves shades a green field to the left and a brown path to the right. The path has red and gold trees on the right that form a sort of tunnel. Glimpses of bright blue sky are visible at the top of the image.

As I wrote last month, I love autumn. I’m enjoying the cooler weather still, although I’m not thrilled with some of the very cold mornings. What I am loving this month is the beautiful autumn colours as the leaves change from green to shades of gold and red. Some of the older suburbs with the European trees are just incredibly beautiful in autumn. It was a particularly big shock for me when I took a week off sick at work to go from driving down the street my office is on and seeing it go from a green tunnel to suddenly almost bare, with the road covered in golden drifts of leaves. I also really love the smell of autumn leaves as they break down. It’s so earthy and rich.

6) Fitness

During April I took advantage of a Fernwood sale and bought myself a membership with some personal training. My PT, Emily, is really fun and works me within my limits, but doesn’t let me slack off. I’m really exciting to be getting my fitness back on track, and have been taking on some additional exercise as well (I swam a kilometre for fun the other day!). I’m doing almost an hour of warm-up before my sessions, and it is really, really relaxing for the brain. I can just focus on my body and making it work. It’s great mindfulness.

I also really enjoy feeling exhausted and sore for a good reason, as opposed to just feeling exhausted and sore because disease. It’s satisfying and makes me feel proud of my achievements. I’m not losing any obvious weight (thanks menopause!) but I am feeling my muscles harden up and I have a little bitty line on my biceps that looks like it could be a muscle.

7) Vegan smoked salmon

Since going vegan, people often ask me if I miss meat. Generally speaking, no. Sure, I enjoyed bacon and rissoles, but I never really got excited about steaks or chicken. I genuinely do enjoy the taste and texture of fake meats better in 99% of cases. However, I loved fish. I definitely didn’t give up eating fish because I hated the taste. Gardein Fishless Fillets filled a big gap for me, but I really, really missed smoked salmon. Thankfully, the Cruelty Free Shop has started carrying Sophie’s Kitchen Vegan Smoked Salmon. It’s not a perfect replica but it is very close and soooo tasty. I had so many slices of toast with Tofutti cream cheese and some chives. Heaven. Happy little vegan.

8) Macaron adventures

Three Assorted Flavor Breads — Image description: three macarons in a pile. The bottom is cream, the middle is pink and the top is brown.

Disclaimer: the macarons in the picture above are not mine. Mine only vaguely resembled macarons.

Image may contain: food — Image description: macarons with the insides exploded out.

Pictured above: attempts one and two. They tasted fine. I’ve never tasted macarons before, vegan or otherwise, so I have no point of reference, but these were nice, with a light marzipan flavour. I definitely need to have another crack and try and get them better, but I think eventually I’ll get it.

I baked them with my sister and it was a bit of a giggle. It took us HOURS and she managed to turn our sugar syrup into a solid rock, but I enjoyed it, even if it was incredibly frustrating to put in all that work and just get explosions.

This is the recipe I used. On my second batch I turned the oven down to 250F and it worked much better. I’ll keep playing and let you know if I ever manage it.

9) Love Nikki

If you play mobile games with pop-up ads you have probably seen some for Love Nikki. It’s basically like Pokemon but for fashion. Your character, Nikki, is inexplicably transported to another world with her cat, Momo, and ends up in a bunch of styling contests. The game has a bunch of content and paying players definitely have a big advantage, but even my cheap self who just plays the free version can get heaps out of it.

It may seem like a silly thing to be grateful for, but it’s another thing I can do for fun when I’m really sick and stuck in bed. Apps are great for the chronically ill. Plus, I really like anime and pretty clothes, so this ticks all the boxes. Let me know in the comments if you’d like a more in-depth review.

10) Sex Education

I don’t mean the school lessons – mine were patchy and weird at best. Highlights included being told repeatedly to just “keep your pants on!” in a strong US accent, and pictures of diseased genitalia. That’s a Christian school vs a public school for you, I suppose. Both freakish and not particular useful, just in very different ways.

What I am actually referring to is the Netflix show, Sex Education, starring Asa Butterfield (you may recognise him as the titular character of Ender’s Game). Whilst this show does have more sex scenes than I really want to see (probably unsurprising, given the name), it also deals really, really well with some very real issues – poverty, abandonment, over-protective parents, divorce, sexual trauma, abortion, vaginismus, slut-shaming, parental pressure, revenge porn, stigma against virginity, stalking, drugs, homosexuality (both repressed and flambouyant) and the attendant prejudice and danger, and a raft of others. The characters are engaging – some are deeply loveable, some are deeply tragic, and it is just incredibly well-written. If you don’t mind a whole bunch of nudity and want a show that really tugs the heart-strings, this is a good one for you. I was hooked. I am not kidding when I say I laughed, I cried, and I determined to teach my hypothetical future children strong lessons about their self-worth and ensure that they get proper sex education.

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.

Why Easter Matters to Me

Published on April 21, 2019April 20, 2019 by Bubbles in the Brain1 Comment

CW: It’s an Easter post. It inevitably talks about religion, suffering and death.

I’ve written before about my faith, but today I want to talk about why Easter specifically matters to me so much as a chronically ill person.

(Before I jump into it, a quick note on the cover photo for today, which is a person in a giant rabbit costume staring out over a shadowed landscape under a cloudy sky. I have absolutely no idea what possessed someone to take this photo. It is not quite the crosses-on-the-hill image I was looking for, but it is so strange I couldn’t help but use it. I love it. I have so many questions.)

To any of my readers who have somehow escaped hearing what Easter is in the Christian calendar, it is the celebration of Jesus’ death on the cross and his resurrection three days later. In Christian canon, Jesus is the sinless son of God in human form, with all human frailties and weaknesses, who experienced the full range of human emotion and physical pain. He began his ministry and around 30, and was eventually put on trial and killed after stirring up a whole lot of trouble amongst conservative Jewish elders, mostly by calling them hypocrites who cared more about the appearance of holiness than actual connection with God, and doing forbidden things like hanging out with prostitutes and healing people on the Sabbath. After being beaten, humiliated, whipped, crucified and stabbed, he died, was buried in a tomb with a big old rock in front of it, went to hell for a few days, then rose again and did some more preaching before ascending to heaven to sit at the right hand of God.

Here are some of the things from the Easter story that stick with me more than ever as a permanently sick person:

1) Jesus knows what I am going through

As noted above, the idea that Jesus became fully human means that he experienced hope, despair, exhaustion, frustration and disappointment just as I do. He also experienced fear, and a desire to not have to go through with more pain and suffering. In the garden at Gethsemane, when he was praying prior to his arrest, he begged the Lord to “take this cup away from me.” I know exactly what it is like to ask that question. I don’t know what is coming in my future as clearly as Jesus did, but I know that there is likely to be more bad stuff. Jesus has felt that and asked for it to be taken from him. There’s no shame in me doing it.

He also experienced unimaginable agony. Endometriosis has sometimes made me feel like there is a monster tearing my uterus apart from the inside, but I’ve never been whipped, starved (except for colonoscopies, but that is different), refused any liquid but vinegar, and hung on a cross for hours, which historians tell us is a truly horrific way to die. Jesus knew pain. He knew how it feels like it will never end, like you can’t go on, like there is nothing but that pain. He understands intimately how I feel when my pain is bad.

2) Jesus didn’t get better either

Ok, I know that sounds weird, but hear me out. Sure, Jesus may not have had a chronic illness, but from the moment his trial began and the pain started, there was no respite. He did not get a break from pain and privation. His pain ended only with his death (and then he went to hell, so he probably got a whole new kind of pain there).

Now, that may sound really bleak, but it is a lot less frustrating and a lot more realistic to me than people saying, “This too will pass.” The whole point of chronic pain is that it doesn’t pass. Sometimes, we just endure it until we die. However, when it doesn’t we sometimes feel as if we are doing something wrong, or worse, get treated as if we are. I’ve written before about how Christians will sometimes treat other Christians as if their ongoing illness is somehow evidence of sin. But there was no relief for Jesus, the man who never sinned, so I’m not doing something wrong by failing to be healed.

In this lifetime, it didn’t pass for Jesus, and it may not pass for me. But, that’s ok, because…

3) It does get better after that

This is probably where I’m losing the non-religious folks, because I can understand how anything “after death” can sound a bit wacky to people who believe you die and that’s it. The big promise of Easter, though, is that we don’t die and that’s it. We die and are reborn in heaven. We don’t suffer any more. We experience such incredible joy that it is as if we have never suffered. I used this CS Lewis quote in my last article, but I’m going to use it again here because it sums it up so well:

That is what mortals misunderstand. They say of some temporal suffering, “No future bliss can make up for it,” not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory. ..And that is why, at the end of all things, when the sun rises here…the Blessed will say “We have never lived anywhere except in Heaven.

Because of Jesus, my place in heaven is guaranteed and I will one day have healing that will make my pain-free days on earth look like poo. I will be healthy again. I will know peace and energy and absolute, perfect love.

4) I’m worthy as I am

Jesus wasn’t crucified alone. Two actual criminals – thieves – were hung on either side of him. One of them turned to Jesus and said, “remember me when you come into your kingdom.” Jesus replied, “Today you will be with me in paradise.”

Now, I’m no angel, but I don’t steal things. I’ve never been convicted of a crime. I’m not an adulterer. Jesus forgave people who were. He will and constantly does forgive me.

I’m being a little long-winded about this, but bear with me. In this world, we have to do a lot of things to be accepted – to be viewed as worthy. The chronically ill are often told that they aren’t good enough, or aren’t trying hard enough. Spiritually, though, none of us are – all have sinned and fallen short of the glory of God, after all – but Jesus doesn’t care. He loves me and thinks I am just as worthy as any more able-bodied person. His forgiveness grants me a place in heaven regardless of whether I meet society’s standards of what constitutes worthy or not.

Do any of my Christian readers have a different take on the Easter story, or get a different kind of comfort from it? For all my readers – join me in being so damn grateful for a four-day weekend, plus ANZAC Day later this week! I loved stacked public holidays.

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