Endo Belly – Bubbles in the Brain

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.

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?

Flying with Endometriosis Part 5: What I’ve Learned

Published on November 9, 2018 by Bubbles in the BrainLeave a comment

For many people, flying is already a nightmare. For people with endometriosis, there’s an added layer of difficulty. In this multi-part series, “Flying with Endometriosis”, I want to talk about some of things we can do to make travel a bit easier.

I’m back! I’m in Australia again, the jetlag is slowly dissipating, and I have a shiny new computer on which to write blog posts (just as well, because writing them on my phone is tricky and tedious). And on the way, I learned a couple of things that make me want to either reiterate, correct or edit things I’ve said previously.

1) Business is better

Like the bougie child I am, I flew business class this trip. No, I could not have afforded those tickets without financial help, and I am very lucky. However, I cannot overstate the difference it made to be able to lie flat – completely flat, even at 5’10” – rather than being sat up the entire flight. This is particularly so on the way back, when I was bloated, sore and touch-sensitive from the surgery. Having fewer people battling for the loos was also very important, as the surgery caused some interesting issues for my bladder and bowels.

If you are in a bracket where you can afford business class but are cringing at the unnecessary expense, I would encourage you to look at it less as a luxury and more of a way to avoid 24 hours of pain.

2) I should have packed differently

I needn’t have bothered with my Kindle as I ended up buying several fascinating books on my trip. I didn’t open my Kindle once.

I should have packed a second Divinity collection Maxi. Comfy as my leggings and my two-sizes-too-big jeans are, the flowing freedom of this dress was exactly what I needed, because on several days it got the point where I could not possibly wear something with a waistband. It was also too cold to wear my shorter knit dress from Review more than once. The longer dress helped cover my cold legs.

I should have remembered that Singapore Airlines Business Class is pretty luxe. I didn’t really need so many products as the airline had a bunch in the airplane loo. That being said, I would stand by bringing them in my carry-on if I had not been flying Business.

Overall, I think I packed pretty well. I wore everything I took and used pretty much everything except the Kindle. I did have a problem with buying too much in the UK and not having enough room for it all on the way back, though, so I had to use my poor mother as a shopping mule. Shopping in the UK is so much better than here.

3) I should have taken laxatives

Ok, so this one is a bit gross, but endo peeps will know what I’m talking about. Post-surgery you are in a LOT of pain at first, so they give you a number of serious painkillers. I had a morphine button – a button I could press any time I felt pain to get a shot of morphine – and morphine (plus the follow-up codeine) makes you as constipated as you can get. My surgery was Saturday. I didn’t poop until Wednesday (in a public toilet on an island full of squirrels, by the way), and I was chugging this weird liquid laxative they gave me (both gross and ineffective) and drinking prune juice like it was going out of style. I know the laxatives I buy normally work (they are only in case of emergency and they just shoot through you). I should have taken them and avoided three days of extra constipation pain, which I did not need.

4) I was 100% right to take my pillow and blanket

That pillow I mentioned that I took as carry-on was 100% the right call. It was more comfortable to use on the flight and it was vital post-surgery. I used it to:-

Protect my stomach from the seatbelt;
Prop up my knees to relieve tension on my back when shoulder-tip pain prevented me from sleeping on my side;
Tuck under one side of my distended tummy post-op so it didn’t flop awkwardly and painfully to one side
Hug to my torso as for comfort, cushioning and security;
Prop myself up in bed.

The blanket was great because I tend to get cold very easily after an operation, and the heating in my bedroom was all over the place. I only used it once on the flight but since it tucks easily into the pillowcase having it there was hardly an imposition.

5) Taking an extra three days off work was the right call

I arrived back in Australia late on Friday night. Originally I was supposed to go back to work on the Monday. Instead I arranged to return on the Thursday. Definitely a good idea. Jetlag + post-op pain does not a happy combination make, and those extra three days were really important in my recovery. I’m far from 100% yet, but I’d be far worse if I’d forged ahead with work on Monday.

6) I could not have done this alone

Having surgery unsupported is very difficult anyway. Having it unsupported in a country that you don’t normally live in, where you have to organise transport and accommodation, would have been overwhelming. If not for my family – particularly my mother – supporting me physically, emotionally and financially, I could not have managed the surgery. Recovery is hard and at times scary. I need someone with me, and I am so grateful I had that.

That pretty much concludes my series on flying with endometriosis. Over the next few weeks you can expect a lot of posts about the surgery and recovery, but also about the places I visited because England is amazing and I want to move back there. Hope you enjoy it!

Reframing Part III: Body Image

Published on August 25, 2018August 25, 2018 by Bubbles in the Brain1 Comment

I recently did a 3-part series on some of the common side-effects of endo, including UTIs, thrush and constipation. Now I want to do some on the emotional side-effects, beginning with guilt, and talk about reframing the way we think about things to combat these negative emotions. Please bear in mind I am not a psychologist or mental-health expert – these are just some strategies that I have employed to deal with my own feelings.

Today I want to talk about body image, which is something I struggle with all the time.

My pre-endo body was hot. I never would have phrased it so blatantly at the time but now she’s practically a different woman so I have no problem singing her praises. I was long and lean but still curvy – think a less muscular Xena. Just before my 25th birthday I was in really peak condition, working out almost daily, going for 5km runs and swinging kettlebells round my head.

Now my thighs are bigger, my tummy is chubbier, even when it isn’t distended, and I don’t fit into my fantastic red bootcut Cue trousers. I’m learning to deal with my heartbreak about the trousers but the grieving process is long. I’ve already discussed how I don’t like this body because it doesn’t feel like mine. For a while, though, I actually despised the fatness (it’s not very fat, it just felt that way) because this society really hammers into us that you can’t be pretty and fat. Even though we’ve made some strides towards body positivity by showcasing more fat models, they often don’t show “real” fat. They are the idealised fat, where everything is still a super smooth, cellulite-free curve, just on a larger, rounder scale. Real fat tends to be jiggly and has lumps rather than being a perfect curve. It’s not taut and smooth, and mine definitely isn’t sun-bronzed. If I go out in the sun and expose anything other than my face and hands people tend to be blinded by the whiteness.

So how did I learn to move past that and learn to accept my body even though it isn’t the one I want?

1) I was exhausted by hating it

It is a very tiring thing to wake up and look at your body and think, “I hate you,” every day. I already hate that it causes me so much pain and seems to be failing in its job to carry me from point A to B and sustain itself properly. Hating the way it looks is extra energy that I really don’t have.

2) I forced myself to confront it

These days I have to wear clothes that accommodate a painful, tender pelvis, so I stopped wearing a lot of the awesome trousers I used to have that would highlight my neat little waist and long legs. I still wear clothes that show off the bits I like, but a side-effect was that I was hiding the bits I didn’t like, which also meant I could hide from them. Unfortunately, pretending they weren’t there didn’t make them go away, so I forced myself not to rush into getting changed. I forced myself to look at my body without those comforting layers. And you know what? When I looked at it, really looked at it, it wasn’t actually as bad as I thought. Self-hatred has a tendency to magnify your flaws and downplay your assets, but when I made myself stare at myself and get reaquainted with parts I was avoiding, I could go, “Ok, so the thighs aren’t what they were, but I still have nice calves. My hips don’t fit into some of my clothes anymore but they don’t actually look any bigger. I still go in at the waist. My face is still pretty.”

It’s probably not that healthy because I was still looking for things in my body that conformed with the idealised standard of beauty that gets plastered over magazine covers. I’m told a healthier mindset might be to ditch all that and say, “my hands are dexterous, my legs let me stand, etc.” That kind of body positvity focused on functionality, though, doesn’t really work for people whose bodies aren’t functional but still don’t want to hate themselves. Am I supposed to look at my stomach and go, “Yeah, nothing inside this bad boy actually ever functions how it should, but it sure is great!” It’s a common tactic for encouraging self-love but it is unintentionally ableist.

I don’t really have a solution to how we navigate that line, given that bodies are really only “assessable”, for lack of a better word, based on looks and function. If anyone has a healthier approach to that, please let me know. I went with looks because I was hating my looks, so finding things about my looks that I did like was a good antidote for me.

3) I treated it well

The best thing I have every done to learn to love my body is treating as if it deserves love. If you treat something with care and respect, it is very hard to hate it; if you treat it like it doesn’t matter, it is very hard to love it.

So, I exercise when I can, not to get all slenderised, but to feel my muscles rebuild and protect myself. I eat well (mostly) because I like to think my body goes, “Ooh, nourishment.” I have a super elaborate skin-care ritual because if I pretend I deserve it (or my face does), I begin to believe that is true. So treat yo’self. Treat your body well. It may not give you anything in return when it is still riddled with disease, but it will help you shift your mindset into liking it again.

4) I gave myself a break

If I see my friends have a bit of a tummy, I don’t fixate on it and go, “ew.” If I see acne on someone’s face, I don’t recoil in disgust. So why do I put myself through that? Why can’t I love myself the way I love my friends? Also, if I feel that way about their bodies, chances are they feel that way about mine, and don’t notice my gradual expansion (except when I can’t shut up about it). I think they are beautiful, inside and out. I am fairly certain they believe that about me (they certainly say they do). So I can learn to believe it about myself.

5) I tried to change my thinking

Instead of seeing the weight gain as a symbol of a battle lost, I am trying to see it as a mark of a battle fought. It remind me that I have endo, yes, but it also reminds me that I am taking steps to fight it as much as I can. Today I had a third piece of plastic injected into me (into that wobbly little tum, of all places) to induce menopause at just 27 years of age. I’m going to great lengths to give my body back its health.

I also tried to see my body as an ally instead of the enemy. It hasn’t actually done anything wrong. It has been invaded by endometriosis and taken over. Endo is the enemy. My body is fighting back against it, and it can’t win every battle, but it is on my side and you can’t hate people who are on your side. Those are the rules.

One thing I haven’t talked about in this article is trying to get away from the notion that prettiness or looking a certain way determines your self-worth. I know it doesn’t. For me, the battle hasn’t been about self-worth. It’s been about self-love. I haven’t struggled to like my body because I think it devalues me as a person; I have struggled to like it because it wasn’t what I wanted. I don’t equate my value with how I look (mostly. I’m not totally over that. Is anyone?), but I do equate my happiness with it. My fight has not been to change my priorities, but the way I view my body.

Have you experienced a change in the way you feel about your body since having endometriosis? How have you dealt with that? Is it still a struggle for you? Please let me know in the comments.

Oh yes, it’s IBS!

Published on August 20, 2018August 20, 2018 by Bubbles in the BrainLeave a comment

Ah, IBS! The fun, the joy, the explosive diarrhoea! Aren’t you just quivering in excitement?

IBS, or Irritable Bowel Syndrome, is the medical term for “something is wrong with your digestive system but we aren’t really sure what.” It is not to be confused with IBD, or Inflammatory Bowel Disease, which is both more easily diagnosable because there are clear physical markers, and far more serious.

That’s not to say that IBS isn’t hellishly annoying and painful – it’s just unlikely to be fatal. What it will likely do is cause massive swelling, keep you on the hop between diarrhoea and constipation, possibly put some mucus in your poop, and make you unable to eat a wide variety of foods without horrific pain. Also, nausea. For no reason.

Doctors have never been able to nail down a cause of it and it seems like it has really become an umbrella term for digestive systems that are a bit delicate, sensitive, and easily upset. I apparently have it, but I also have a completely normal result for colonoscopies, endoscopies, and whatever-other-method-of-sticking-tubes-down-your-throat-and-up-your bottom-oscopies they can think of. For me, and for many in my position, the bowel difficulties are caused by endometriosis growing on or near the intestine, and doctors happily cover it with this wonderfully useful catch-all phrase – IBS.

Dealing with IBS

So, what to do if there is something like this going on in your piping? The first and best way it to look at changing your diet. I recommend the Low FODMAP diet, which I have discussed here, because it allows you to figure out what your main triggers are. Bear in mind, however, that it may not solve all your problems. I still manage to have plenty of stomach upsets even avoiding my trigger foods. What it will do is make sure that you aren’t suffering more than necessary by putting foods that will irritate your bowel straight into it.

In terms of dealing with the symptoms, I’ve discussed relief from constipation and bloating here. To my intense annoyance, there really isn’t much you can do about diarrhoea except ride it out. You can eat foods that you know will constipate you but then you have the risk that everything will swing the other way, and, let’s face it, most of what will constipate you is not healthy. If you are in serious pain and popping codeine for relief, you’ll probably find that swings you round into constipation territory too.

If you find that your poop is so liquid that you are suffering from faecal incontinence (i.e. you can’t hold it in or you don’t notice that little bits are slipping out), I recommend a good, thick panty liner such as the Tena brand. Designed specifically for incontinence rather than periods, they are long, thick and hold stacks of liquid. Importantly, they also hold in smells. They will hold the little brown demons off your clothes until you can get to a toilet. Keep a spare pair of clean undies and a pad in your bag as well (I’d recommend carrying those at all times with endo anyway). It may be embarrassing for you to buy and carry big old incontinence pads, but trust me, it is more embarrassing to poo your pants in public.

If you do suffer from faecal incontinence because of IBS, or for any other reason, you should not feel guilty or bad or embarrassed. I say this knowing that the few times it has happened to me I wanted to die of humiliation and no one even knew about it. It feels icky and you feel like a child who can’t even control their own bodily functions, but plenty of adults suffer from it and it is not something you can help or control. You are not gross or weak or pathetic – you are suffering from a disease and it is not your fault.

If you suffer from nausea, there are prescription medications like maxalon that can help deal with it. However, some of these can interact very badly with pain medications, so double-check before you dive in using them. Try ginger tablets or ginger chews to keep the sensation at bay, and double up with peppermint or lemon and ginger tea (peppermint reduces colon pain and lemon and ginger settles the stomach).

Finally, of course, consider what can be done to deal with the root cause, if you know what it is. If it is endometriosis, talk to your surgeon about whether there is any point attacking it surgically. There may not be. Like with endo anywhere else, removing it is no guarantee that it won’t just go back. Further, the intestine is such a delicate area that some surgeons prefer just to do a straight-up bowel resection than attempt to remove it, especially if it is small or deeply embedded. Either way, bowel surgery is risky, so you want to be fairly certain that there will be a tangible benefit before going in. It may be that sufficient medication can reduce the endo growth on the bowel enough to provide you relief from symptoms.

Of course, it may not, and IBS may become yet another unfortunate part of your reality when living with endometriosis. What fun, eh?

Do you suffer from bowel-related complications for your endo? Have you been officially diagnosed? What’s your best method of relieving the symptoms? Let me know in the comments.

A Vegan with Endo

Published on August 13, 2018August 12, 2018 by Bubbles in the Brain1 Comment

Trigger warning: diets and eating disorders

Yes, it’s your obligatory spot-the-vegan post. I’ve mentioned that I’m vegan before, I know, but today I want to explain why and how it gels with my endometriosis.

I’ve been vegan for just shy of four years, and was vegetarian for maybe two years before that. Veganism is a change that I would encourage everybody who possibly can to make. I know that not everyone can. For people will allergies or intolerances to common ingredients in fruits or vegetables, such as fructose, or someone with a thyroid problem exacerbated by certain plant foods, veganism may simply not provide the nutrients they need. Someone with an eating disorder may find that the limitations on their diet trigger a collapse back into incredibly restrictive, unhealthy meal management. Some people simply may not live in an area that allows them to obtain healthy vegan food. However, that leaves a vast number of people who can.

I have three main reasons for my veganism, and I’ll outline them below.

1) It is the healthiest diet for me

I’m not suggesting that a balanced omnivorous diet can never be healthy; quite the opposite. However, I have high cholesterol. Cholesterol levels are supposed to be a 5.5 to a 6.5 on the scale my doctor was measuring on. I was a 6.7 as an omnivore, and got up to 7.2 as a vegetarian (because I replaced my meat intake with cheese and eggs, which are both full of the stuff). As a vegan, my cholesterol is finally back down in a health range. A vegan diet is naturally cholesterol free, so that’s no longer an issue for me.

A plant-based diet also cuts out many of the things that are bad under both the endo diet and the low FODMAP diet (predominantly red meat and dairy), so it helps me manage my endo very easily from a diet perspective.

Finally, a vegan diet almost guarantees nice, regular bowel motions. Given that my bowel-endo can often result in constipation, this is a very good thing. Seriously, 1-3 times a day is quite normal for vegans. Try it. Your colon will be shocked.

2) It is the cleanest diet for the environment

Climate change remains a hot button issue today, with the vast majority of scientists agreeing that the climate is changing and that humans are a major contributor. It is estimated that livestock takes up about 18% of our emissions, according to a widely-cited 2006 study. Robert Goodland and Jeff Anhang estimate it actually accounts for around 50%. The Food and Agriculture Organisation of the United Nations also cites livestock as being responsible for massive amounts of deforestation, soil erosion and polluted run-off.

Our seas are also being rapidly overfished, with the heartbreaking problem of bycatch persisting in gill net, purse-seine, long-line and trawling methods. Sharks, dolphins and sea turtles are all victims of circumstance. Aquaculture is no better, with 1 tonne of farmed salmon taking the equivalent of 3-4 tonnes of wild-caught to feed.

Yes, plant-based agriculture still costs land, but if we are using it all to feed humans instead of billions of livestock each year, that will be a far more efficient use of it, and it will take less space overall. People like to say that overplanting soy is destroying the Amazon. It is, but who eats most of the soy? Cows, not vegans.

3) It is the kindest diet to animals

Yes, yes, I know that mice will sometimes get caught up in combine harvesters and eat pesticides, etc. However, as I said, the majority of plants are already being grown to feed to livestock, so that is happening anyway. By adopting a vegan lifestyle, you not only reduce the incidents of that, you avoid the animals that are being fed this mouse-bloodied plant matter from being killed as well.

This, I think, is the strongest point. As mentioned, you can eat a healthy non-vegan diet. You can fish and hunt sustainably to eat meat without relying on farming. You can raise your own chickens in a sustainable way. But the animals and their deaths are the core of veganism. You cannot eat meat without animals dying. You cannot use animal byproducts without taking something that is theirs.

To me, it doesn’t matter whether an animal is treated well in its life if it is going to be slaughtered a fraction of the way through it. This article outlines why “humane” raising and slaughter is not an ethically sustainable position far better than I ever could, and I’d encourage everyone to read it.

I arrived at veganism through the animal branch, and my reasons boiled down to essentially these two things:-

I do not believe that unnecessary harm is ethical. It is not necessary for me to eat animal products to survive. Therefore, harming animals is unnecessary. Therefore, it is unethical.
It would be incredibly selfish of me to take away an animal’s life – everything it has – for a couple of minutes of taste. I cannot think of a more selfish thing I could do. Even for things that could potentially be taken without harming the animal, such as eggs – I don’t need them, so why would I take something that isn’t mine? If chickens were humans we’d call it theft.

Things like dairy and eggs, that by their nature involve the exploitation of the female reproductive system, also don’t sit well with my position as a feminist. As a person with a grasp on logic, I also don’t love the weird disconnect between our treatment of domestic animals and livestock. The underlying attitude is just overwhelmingly one of entitlement towards the bodies of others. It’s an attitude I hate between humans, and I don’t like it any better between humans and non-humans.

These are my reasons at their most basic. For me it is a decision I don’t regret – I am still sometimes overwhelmed with sadness at the cruelty against animals in this world, and this is one way my battered old body can protest against it and not contribute to it.

Unfortunately, there are bad actors in the vegan community. There are those who thing animals are gods and humans are mud and will actively stamp on humans to help animals. There are those who don’t care about racism, ableism, sexism or classism, etc, either in their vegan advocacy or in their lives in general. There are those who think I must be veganning wrong because it hasn’t cured my endo, so I need to eat raw organic food only, or something. Like feminism, I strongly believe veganism must be intersectional. There is no point in fighting one sort of oppression if you don’t care about others – and after all, humans are animals too.

Are there any vegans amongst my readers? What were your reasons? Has your diet assisted your endo at all? Let me know in the comments.

10 Brilliant Quotes about Endometriosis

Published on July 31, 2018August 1, 2018 by Bubbles in the Brain1 Comment

I’d like to finish the month of July (my first month of serious blogging) with a lighter post. Well, lighter in the sense that it isn’t factual.

As I’ve mentioned previously, I’m a Pinterest addict. I don’t know what about it I enjoy so much, but I do. And I have a board specifically for endometriosis.

That board is partly tips, but mostly quotes about endo and chronic illness, ranging from sassy to depressing. I want to share ten of my favourites for this month below.

1) “It never occurred to me that one day I would wake up sick and never get better.”

This one hit me hard. Coming to terms with what “chronic illness” – that I have this for life and can literally never get rid of it – was one of the hardest aspects of my diagnosis. It’s really overwhelming, but this quote catches that shock and grief very simply.

2) “Yes, hello. I’d like a refund on my body. It’s kinda defective and really expensive.”

Gosh, yes. This is not the body I asked for! Sometimes it feels like it’s far more trouble than it’s worth.

3) “Sick Girl Problem #19: Feeling incredibly guilty about being sick & how it effects those around me.”

It can be really hard feeling like a burden on other people, and it really does create a lot of guilt. You can’t do it alone, but you really wish you could.

4) “Yeah, I’m hurting. But on goes the mascara and lipgloss. That’s right. I’ll be the prettiest wreck you’ve ever seen!”

Makeup isn’t for everyone, but for me it can be a real mood booster. When I’m sick, I tend to look it. When I see myself looking sick, I feel worse. Slap some makeup on and I not only feel like I made an effort and achieved something, but I like the way I look more and so I feel a bit better.

5) “If you don’t find a way to deal with your demons, your demons will find a way to deal with you.”

In other words, sink or swim. Fighting against endometriosis is incredibly hard, but you have to do it anyway.

6) “Endo Belly” (a picture of Violent Beauregard from the 1971 movie Willy Wonka and the Chocolate Factory blown up into a ball after eating faulty chewing gum).

I mean, yeah. That’s what it feels like.

7) “Sometimes suffering is just suffering. It doesn’t make you stronger. It doesn’t build character. It just hurts.”

This is really important. Too often pain is not something that builds you up or makes you better, particularly when it is inescapable and relentless as only chronic pain can be. Instead, it’s just grinding you down. You don’t have to be able to make a positive out of the negative. You can acknowledge that it just plain sucks.

8) “Tired of doctors. Tired of pain. Tired of pills. Tired of stress. Tired of suffering. Tired of fatigue. Tired of always being sick.”

Because endometriosis is tiring. Trying to deal with each day in an exercise in exhaustion.

9) “When I am resting because my body is weak, I need to remember that I’m not wasting the day doing nothing. I’m doing exactly what I need to do. I’m recovering.”

This is a really important reminder for me, because I HATE just lying around not doing anything. It’s boring and I feel like I’m a waste of space when I’m going it. I need to keep telling myself that I’m not, but if I keep pushing myself, I soon will be because I’ll be incapable of anything.

10) “Me: I need to do a thing. Body: You did a thing yesterday. That’s enough things.”

It’s so true. I made pancakes today, so I need a day off to recover from standing up to do it. It’s ridiculous, but unfortunately body is the boss.

What quotes have you seen that made you laugh, cry, or go, “Wow. True”? Share your favourites below. Also, drop your pinterest names or boards and I’ll follow you! You can follow mine here: https://www.pinterest.com.au/bubblesinthebrain/

Two Sizes Bigger in Two Hours: Dressing for Endo Without Compromising Style

Published on July 21, 2018July 20, 2018 by Bubbles in the Brain6 Comments

Massive trigger warning for pregnancy, infertility.

I’ve already explained the exciting phenomenon of endo belly in an earlier post, where you swell up for no good reason and look like you’re about to give birth. In the image at the top of the article, you can see my poor stretched out tum during a particularly bad episode of endo belly. Normally I’m a relatively slender size 10. Not so during a flare-up. Recently I’ve had two unrelated people just assume I was pregnant, and my endo belly wasn’t even that bad at the time. You can see why people assume it at the height of a flare, though – there is a very distinct, almost pointy shape to the belly that is clearly not just weight gain, and it is very localised. The rest of me looks as it always does. It can really suck for many people with endo, particularly those who feel strongly called to motherhood, because endometriosis can have a horrible impact on fertility. Endo belly is a very cruel, sad mockery of that.

On a lighter but still extremely annoying note, it makes it very hard to dress. Clothes that fit you some days of the week are suddenly two sizes two small the rest of the week. It’s a pain in the rear – many of us have work to go to wear pyjamas are not considered appropriate (I’m just trying to imagine a magistrate’s face if I asked to do an appearance in pjs!) and the rest of us would just like to be able to get dressed.

So I want to share some tips and some favourite brands/clothing items both for everyday wear and for work.

I apologise in advance: this is not a particularly gender neutral article. I am not a designer or even a particularly fashion-forward person and I don’t know enough about men’s bodies and clothes to give tips. If any men with endo would like to give me some hints, or even write a post for this blog, I would welcome you most warmly.

Shop Maternity

Yes, given what I’ve said above this is not going to be an easy tip for everyone because it really just rubs it in that you aren’t pregnant and that you’re wearing maternity clothes because your own body hates you. For those who don’t care so much about the pregnancy side of things, however, the maternity section can be a really good option. It offers sizes that accommodate a range of swelling, from minor to enormous, and because it is specifically designed for women with a bump, it can offer some really stylish, comfortable options, and comfort really is super important.

Maternity Jeggins.jpg — I quite like this look from Target’s maternity section. It is cheap to put together (relatively speaking) but still appropriate for a more casual office environment or a dressy-casual event. Swap out the trousers for maternity jeggings and you even get to sort of wear jeans. https://www.target.com.au/look/colour-block-fun/LOOK1215104

Another great thing about maternity clothes is that they cradle and support the bump without putting pressure on it, which tends to make everything worse.

The downside is, of course, that it does nothing to disguise the bump, if that’s your preference. It can also take a little getting used to. It’s a lovely thing to be shopping for maternity clothes when are pregnant, I assume, but it can feel strange and humiliating when you aren’t, not least because of the assumptions and explanations if you end up in conversation with a stranger there.

Avoid Shapewear

Beginners to the bump may think the best way to deal with it is to force it to comply by squeezing it into shapewear. That might slim it out, but you are probably putting yourself through untold agony for minimal gain. When you have endo belly, pressure over the pelvis is restricting blood flow and pressing on spots that are already inflamed and irritated, so the most likely outcome of shapewear is just pain.

If you need to squeeze yourself into tights or similar for work, go for something like these Bonds Comfy Tops. Yes, they say slimming, but they are some of the least restrictive tights I have found and tend to sit comfortably over the pelvis without squishing it. Alternatively, get some soft comfy leggings and pretend they are tights by hiding their footlessness in boots.

Embrace the Maxi

A shapeless maxi was something I would once have turned my nose up at. Now, I love them. Loose and flowing, they are perfect for avoiding the summer sweats, or for snuggling up into in winter. The key to making them look fun rather than like you are practically dying from pain and this was literally the only thing you could find is accessorising. This great Popsugar video shows 7 summery ways to dress up a shapeless maxi that shouldn’t take too much money or effort, but take you from swamp creature (my standard morning look) to chic (never my standard look).

This article from College Fashion has some cute ideas for winter. Short girls are often told they aren’t allowed to wear maxis because you will look short (which you are, so, shock) and that their only goal in life should be to look tall and slender (it should not be). My high-fashion tip is just embrace being short and stuff the height-shamers, but if it is a concern for you, try this article by Petite Dressing and this one by Coffee Beans and Bobby Pins for some tips on how to style a maxi without looking like you’re being swallowed up by it.

Search for Elastic Waists

More and more retailers are realising that women want comfort, regardless of their size and shape. One of my favourite Australian brands, Review, comes out with a couple of elastic-waisted skirts a year, which I live for. Their current offering is this pretty grey number.

Review skirt.jpg — Review’s Love Parade Skirt, $169.99

Past options have included black and navy. I’m hoping they give us a lot more of these. Thankfully, Review has a really good rewards programme and great sale, so endo-havers on a budget may still be able to snap up some nice pieces.

Trouser fans may enjoy this offering from Reformation, but beware of shipping costs and all prices being displayed in those wacky US dollars.

Larger View of Product — Reformation Joss Pants, $78USD

Land’s End offers a more conservative, work-friendly trouser for those of us in traditional office jobs. I’ve ordered a couple of swimsuits from Land’s End and they are lovely quality, so I’d imagine their trousers are pretty spiffy too.

Women's 7 Day Elastic Waist Pants — Land’s End 7-Day Elastic Waist Pants, $57.49

There are, of course, plenty of more budget-friendly options too, including these truly bizarre but very colourful ASOS culottes.

Target has a whole range of nice options, but won’t let me import any of their pictures, so I’ll just link you. This skirt is elastic-waisted and office appropriate, and costs only $25. Somehow they make these joggers look office-appropriate, but that might just be clever photography. They even have a pencil skirt for $30, and are trying out some bizarre trend called “Treggings” (trouser-leggings), although I’d be wary of these compressing the pelvis.

Check-out Menswear

If you are a man with endometriosis, you’re probably rolling your eyes at this super obvious tip, but for women with endo, it may not be territory you’ve explored before. Menswear is generally cheaper, stronger, has more pockets and is built far more for comfort that clothes aimed at women. It’s a great source of looser, lower-riding jeans and hoodies to snuggle up in. That being said, don’t discount styling menswear for more than just staying home: some women love it for work, going out, and even formalwear.

I hope this gives some hope for people with endo who still love their fashion and hate being relegated to pyjamas as much as I do. Don’t get my wrong, I love my pjs dearly, but sometimes I do actually want to go out into society and not get mocked.

What are your favourite pieces and brands for when you have endo belly? Any tips I’ve missed?

	The language of able… on The Perfect Disabled Pers…
	How to get a flat st… on I had Liposuction. Here’s…
	Simone JD on 2020: A Year in Books
	Bubbles in the Brain on Quick Update and Apology
	M J on Quick Update and Apology