Happy New Year: Change, Surrender and Big Decisions

TW: domestic violence, assault, sexual assault, child abuse, animal abuse

2018, like so many other years, has not been easy, but it has been big.  I spent around 3 months in total off sick. I had my third operation in two years.  I battled medically-induced depression, went into menopause twice, visited my homeland again, celebrated my second wedding anniversary and adopted two beautiful animals.  Most dramatically, though, I learned when to quit.  Literally.

I’ve worked in the same place, with one minor break, since January 2014.  I started as a volunteer paralegal.  In September that year I started as a part-time paid paralegal.  In July 2015 I finished my Masters of Law and my BA (Hons) and went full time.  In January 2016 I was promoted to a senior paralegal position and moved to a different section.  In August that year I become a solicitor.  I’ve never worked anywhere else as a lawyer.  I met my husband there.  I was instilled with a love of law there.  And, in the final work week of 2018, I quit.

This wasn’t a totally spur-of-the-moment decision.  A few months back I applied for a job elsewhere on something of a whim, and was moved into a merit pool.  I didn’t really expect anything to come of it.  However, the Friday just before that last week, I got a call offering me a position.  Two days later, I accepted it.

It was an incredibly difficult decision in many ways.  In my old job, I was a litigation lawyer.  I was in court at least three days a week, and meeting with clients or preparing for cases the rest.  Most days I would be appearing with less than an hour to prepare.  I was helping extremely vulnerable people.  I acted on behalf of domestic violence victims, the homeless and the mentally ill.  I got to argue points of law with magistrates who seemed hell-bent on confusing me, and work with angry clients who were not too far from assaulting me.  It was often incredibly rewarding, but, as I’m sure you can guess, extremely physically exhausting.

In addition to the time pressures that any legal job has – file this by 10am, send this letter out by 5pm, subpoena these documents by Wednesday – you also have a bunch of other unique stresses.  There is the belly-churning stage-fright you get before appearing in front of a magistrate, the pressure not to embarrass yourself in front of your colleagues, client and court by stuffing up.  There’s the emotional burden and vicarious trauma you take on by hearing stories of domestic violence – often involving serious physical and sexual assault, sometimes against children and animals – every day.  There’s the standards you hold yourself too to be the best lawyer possible, standards that are drilled into you irrevocably in the hyper-competitive environment of law school.

There’s also a hefty dose of physical exhaustion.  In addition to travel between the office and court (walking distance, in my case, so walking it is), there is an inordinate amount of running around involved in court work.  You have to chase around after a seemingly endless stream of clients, registrars, associates, other lawyers and even your colleagues, none of whom are ever where you need them to be.  There’s the inevitable last-minute change of courtroom because the lights aren’t working in courtroom 5, or because the magistrate that was hearing your application now has to do an emergency bail hearing instead.  There’s the frantic jack-in-a-box hopping up and down that a lawyer needs to do in the courtroom to demonstrate respect for the court.  All in all, combined with the mental and emotional stress, the job is incredibly exhausting, and I simply can’t do it any more.

I am extremely sad.  I love litigation.  I love the thrill of winning a point or getting a good outcome for a client.  I like the challenge and the test to my skills.  I love arguing (as my family will probably attest).  Not only that, but I’m moving away from some truly fantastic colleagues whom I will desperately miss.

Moreover, it’s a huge change in mindset for me.  Three years ago I knew beyond any shadow of a doubt that I wanted to be a family lawyer.  I would do five years of practice, then get accredited as an Independent Children’s Lawyer, maybe even a mediator, and after ten years I would do my specialist accreditation in family law.  Now I’m moving into a government organisation working in a policy role that has nothing to do with litigation, family law, or domestic violence.  I’ve had to give up an entire future because my body was wearing out faster than I could replenish it. I’ve had to hugely re-evaluate where my life is heading and what I want to do.

In all honesty, now I don’t know.  A lot hinges on 2019.  I may hate this job and scramble back into litigation and work until it breaks me beyond repair (I hope I’ll have more sense than that).  Alternatively, I may love it, and be happy to never go back.  I may change career several more times, as my generation apparently does.  Right now, I have no idea what the future holds.  It’s scary, but I’m ready.  I’ve got my positive brain engaged.  This is a new opportunity to discover what else I’m good at and see if I love other things too.  It’s a new workplace, next to a beautiful walking track and near to my sister.  It’s also (I sincerely hope) a physically easier job, that will give my poor body the chance to heal that it so desperately needs, so that I can actually get back to building a career (whatever that looks like).

I’m proud of myself for taking this step.  Yes, I quit.  I gave up.  Some might say I failed.  Whatever.  Sometimes, quitting is what you need to do.  It was the right decision for my health, and hopefully for my family too.  It was scary, but I had the courage to do it anyway.  2018 was a year for courage.  2019 is going to be a year for perseverance, as I stick to the scary decisions I have made and see them through to their end.  I’m ready.  I’m happy.  Bring it on.

I hope your 2019 is full of hope, happiness, and beautiful surprises.  I wish for strength, endurance, courage and beautiful, painless moments for all of you.

Gift Guide for Spoonies with Endometriosis

It’s that time of year where people start panicking about what to give other people for Christmas.  I want to give you some ideas about what to give your favourite sickie (or even just the one you got assigned in the office Secret Santa).

Now, don’t for a moment think that you have to get a chronically ill person something related to their illness.  Our illnesses don’t define us and we all have things we want outside of treatment.  The top, number one gift you can get a sick person is something they actually want but wouldn’t normally buy themselves.  The other top number one gifts are cash, because cash is excellent and sick people often don’t have much, and your time, sympathy and practical assistance.  However, if you don’t know them that well, or really want to get them something to assist with their fight with endometriosis, read on.

1)  A TENS Machine

There are plenty of options for TENS machines on the market these days, from the discreet (think Painmate or Livia) to the hardcore.  They range in price, too – a Painmate will set you back around $50 (or $0 if you win my Christmas giveaway!) whereas a Livia kit is on sale at $198 right now.  TENSMachinesAustralia sells a variety ranging from $100 to $200+.

2)  An upgraded heat pack

One thing that is common between most chronically ill people is that we tend to spend our spare disposable income on our illness, so when it comes to the necessities like heat packs we go for the utilitarian.  A novelty heat pack like this cat one,  or one of these exotic animals, is still a good shape for the pelvis whilst being a bit more fun and cute than your standard wheat bag.

Another nice alternative, if the person in question doesn’t have any issues with scents, is a scented one.  I have a lavender one that I just adore.

Another great option is an electric heat pad.  I can’t for the life of me find the one I use, which I nabbed in a large chemist one day.  Basically, they are like mini-electric blankets and are great, because the sick person doesn’t have to repeatedly go to the microwave to reheat the thing.

3)  An iTunes voucher or Netflix/HBO/Stan/Hulu subscription

People with a chronic illness are stuck at home a lot.  A iTunes voucher will let them buy another movie or TV show, some good music, or some fun apps.  This is a gift that can suit any budget, of course, because you get to choose the amount you give.  Alternatively, a subscription to a streaming service lets them have a month (or a few, depending on your budget) of a whole range of movies and tv shows to binge.

4)  Nice pyjamas, dressing gown or slippers

When I’m healthy, I generally dress to the nines.  When I’m sick, I will rarely wear anything more exciting than pyjamas.  They are comfy and comforting.  They grow with my poor sore belly and let me sleep whenever I need.  Whether it is a soft $10 flannelette pair of bottoms from Kmart or you splash out on some themed fun sets from Peter Alexander, bed clothes and accessories will never go amiss.

5) Tea 

Maybe this is just because I’m British, but tea is an incredibly comforting drink.  It comes in so many varieties, so there’s something for everything, and with the choice of cold infusions there’s an option for every season, too.  It’s often a better alternative than coffee because caffeine can make some people’s endometriosis go a bit wild.  Get together a box of really fancy tea bags, or a nice selection of loose leaf.  If they aren’t a tea person, maybe a nice hot chocolate would be more their style.

6)  A Weighted Blanket

Ok, these are pricey (around $150-$200+), so these are probably not good for a Secret Santa option.  However, they are incredibly comforting to some people with chronic pain because the weight is bizarrely relaxing.  It could just be me, but I find having something heavy on top of me forces me to relax effectively, and a weighted blanket achieves that without the heat of multiple covers.

7) An Audible Subscription

If you are stuck at home a lot but are too tired to hold a book up, or you are waiting in emergency rooms for hours at a time, audio books can be a great way to pass the time.  I love Audible (I have the UK subscription, not the Australian one) as it has so many books on there.  I effectively pay $14.50 (depending on the exchange rate) for a new book every month.  The books in my library range from a breezy 4 hours to a whopping 70 hours of entertainment each.  Some classics are free.  Consider buying someone a few months, and they can always cancel it if they don’t like it after that.

8)  A Subscription Box

The gifts that keep on giving, subscription boxes are great, particularly for someone stuck at home, because it is undeniably exciting to receive a little something every month or so.  There are subscription boxes for literally everything, from underwear to makeup to coffee to veganism to some specifically for chronic illness.  There really is something for everyone.  A particularly useful one for your spoonie friend may be a subscription to a meal delivery box, such as Soulara or Hello Fresh.  I cannot overstate how much of a chore meals can be when you are in pain and under pressure from your treating team to maintain a healthy diet.

9)  A Cleaning Service

Chores can be absurdly hard for people with chronic illness.  If you are happy to pay for a cleaner to come in and help your friend even just once a week or once a fortnight, that’s a huge burden off them.  It gives them the comfort of knowing that, even if they have a bad day (or several) and let things go, someone will be there to help them excavate a hole in the trash pile they may be forced to create.

10) A Hamper of Goodies

Bath salts, body butters, edible treats, magazines, puzzle books, actual books, scented candles, essential oils, fluffy socks – whatever you want to put in a hamper, you can.  You can make it tiny with just some chocolates and hair ties, if you are on a limited budget, or you can get wildly extravagant with a plush dressing gown and bed linen, if you are a millionaire who shopped the Sheridan sale last Black Friday.  This is a gift you can customise for any budget and any recipient, and would go down a treat with anyone I know.

 

I hope this is of some help for anyone out there shopping for a loved one (or an I’ve-met-them-a-couple-of-times-by-the-coffee-machine-one) this Christmas.  What have you bought for people with endo in the past?  People with endo, what would you really love to receive?  Let me know in the comments, and don’t forget to enter the Christmas giveaway!

Christmas Giveaway!

It’s finally December, which means it’s nearly Christmas!  I love Christmas.  It’s my favourite holiday of the year and I love the atmosphere of family, happiness and giving that I associate with it.  I want to share some of that with my readers, so I am very excited to announce the first big event for this blog: a Christmas Giveaway!  I foreshadowed this and I am really hoping that it benefits the winner.

But the important question is: what do you win?

My friends, you win a Painmate, valued at $50.

PAINmate TENS Machine
Image description: Painmate, a portable TENS device.

I’ve mentioned this little trooper before.  It’s a battery-powered, stick-on TENS device that you can wear under your clothes.  It’s very discreet and has a whole range of power settings, from barely-even-tickles to I-can’t-feel-my-legs.

The next important question is: how do you win it?

My friends, you win it in three simple steps:

  1. Follow this blog;
  2. Follow Bubbles in the Brain on facebook;
  3. Comment on this post with your facebook name so I can verify that you have done both.

The winner will be drawn randomly through the very sophisticated method of putting all your names in a bowl and picking one with my eyes closed on 15 December. I will then contact the winner to organise delivery of your prize!

Is there a catch?  Yes, there is.  This giveaway is only open to people in Australia (sorry!) due to exorbitant international shipping.  I’m hoping that future giveaways will be able to be open to all, but go easy on me, it’s my first one.  This will be a nice change for Australians, as typically we don’t get to participate in things for the same reason.

Tip for the Painmate: whilst you will need to buy spare battery packs to get new sticky pads, the batteries run out faster than the pads.  If you just need a new battery, buy a cheap packet of watch batteries from the supermarket in the right size.  They are far cheaper and last longer.

Happy nearly-Christmas!

 

Fighting Fatigue

Sometimes I think the single worst enemy of the chronically ill, aside from the actual illness, is fatigue.  It’s pervasive.  It’s debilitating.  It lingers, and it won’t go.  It lowers your immune system, makes you more susceptible to pain, slows your thought process and just makes it nigh-on impossible to exist like a normal human being.  

It’s particularly bad when you start your week exhausted.  Those who read my last post will know that I was up until around 4am on Sunday night (well, Monday morning by that time) accidentally tripping my face off on tramadol.  Do not recommend.  The net result, for a girl whose alarm goes off shortly after 6am, was very little sleep.  I went in late to work so I could catch up on some extra rest (and wait for the horrific weakness and shaking to pass), but it wasn’t enough.  

The other thing about fatigue is that it is cumulative.  Each day of legal work, no matter how exciting, is tiring.  Your brain is doing a million things, you never have enough time to finish all the things you’d like to, and if you work in litigation, you are probably on the go between courtrooms, offices and the local corner shop for chocolate several times a day.  My spoons, never high at the best of time, were seriously depleted by Sunday night; each day took away a little more.  On Friday, I had literally none left.  I woke up so exhausted I could barely move.  The toilet door, all of two feet from my bed, seemed like a million miles.  Moving my arms to my phone to email work took everything I had.

This may seem like a lazy millennial exaggeration (not a stereotype I appreciate, by the way).  “Ugh, I’m soooo tired.”  Other spoonies know.  It’s exhaustion beyond the point of comprehension.  Literally, I was so tired I couldn’t understand it.  You feel pressed down by a physical weight.  It’s not like you’re underwater, it’s like you’re under mud.  Thick, quagmire, sucking-you-down type mud.  

Of course, because I was tired, I had no reserves to deal with the post-op pain.  Whether it was objectively worse than usual or I simply felt it to be worse, I’m not sure (although it felt pretty bad).  I also had a blocked nose, with a headache and sinus pain and a croaky throat.  Thankfully they have mostly passed.  I was convinced I was getting another interminable cold.  In any case, there was only one possible solution for this kind of exhaustion – to go back to sleep.

That’s the big problem with trying to fight fatigue.  You might be able to stave off the sleep debt for a few days, snatching extra hours where you can and chugging caffeinated beverages where you can’t.  Ultimately, though, it will always build to the point where it becomes so big a monster that you can’t fight it off any more and it simply overwhelms you.  I’m disappointed it got me on Friday, and that I couldn’t hold out one more day, but that’s the reality of chronic illness – you can’t always go the distance and you always have to pay the price for trying to.  

Pills and Thrills

CW: drug use

Does anyone else get really really annoyed at the number of side-effects doctors expect us to tolerate?  

I warn you now, this is a rant and not a useful post.

On Sunday night I was in bad pain.  I don’t really know why or what was causing it, but I knew it hurt more than I could cope with and that I needed to be at work the next day.  So I did what I have been told to do when the pain gets really bad, and took some tramadol.  

I haven’t taken tramadol in a long time because it has a habit of making me a bit whacked out.  I avoid endone for much the same reason.  Both make me spacey and sleepy but send my mind racing at a million miles an hour, leaving my super-active brain stuck in a body that feels like it is suffering sleep paralysis.  I also don’t feel that they have much of an impact on my pain levels.  The next day I feel weak and shaky.  I don’t really like either of them.  Also, they both make you constipated.

Sunday night took things to a new level.  I took my tramadol at around 9pm.  I was fine at first in terms of side-effects and went to bed with a heatpack to wait the pain out. Half an hour later I was genuinely concerned that the doctors had replaced my innocent painkillers with hardcore hallucinogens.  

I’ll preface the rest of my experience by saying I’ve never taken illicit drugs of any kind.  I’ve never even been drunk.  I have no interest in perception-altering substances, so drug users out there may read this and go, “ah, you innocent child, thinking this is bad.”  I don’t know.  My poor little mind was bending.  

By midnight I was still not asleep.  My brain had carried out a really, really detailed mediation between my cat and my dog.  I could talk to animals, you see.  I forced myself to get up and go to the loo and was swaying like a drunk woman.  I could feel the world tilting, melting and floating around me, like my foothold on the earth was tenuous at best.  

When I got back to bed, I started crying because I felt like my arms were melting into one another, and I couldn’t tell my elbows apart.  I felt like my hands were on backwards.  I was being eaten by the bed.  I couldn’t move.  I could just about articulate to my husband what was happening, and I know I sounded pathetic and barely coherent.  

I was awake, my mind racing and my body distorting, until around 4am.  It was nightmarish.  I felt like I was living the Coraline movie.  

When I woke up the next morning, my body was wracked by tremors and I was so weak I could barely hold my phone to send an email to work saying I’d be late.  I was dizzy and nauseous.  The whole day I was tired and weak, couldn’t eat properly until mid-afternoon, and was really struggling to articulate my thoughts.  I would just lose the ability to say things halfway through the sentence, even though my brain was making the right pictures.

The only thing that made my pain reduce?  Time.  And quite frankly, even if the tramadol had worked, I’m not sure it would be worth the hassle.  

I know that I’m far from the only person to experience problems with the pills meant to relieve pain.  I’m far from the only person to have horrible side-effects with something as fundamental to the treatment of endometriosis as hormonal birth control.  I consider the issues I get – bloating, abdominal pain, tender breasts, mood swings, weird cravings, reduced energy – to be relatively minor, because we are told they are common and not really worth troubling a doctor about.  

Why are we expected to have to deal with this?  Why must sick people choose between pain and suffering from their illness and pain and suffering from their treatment?  Why am I in the situation where I’m forced to call in sick, not because I am ill, but because I attempted to use my prescribed medication?  Why, if I go to the emergency department, will I be offered endone as my only option, and be kicked out as soon as I take it?  What else can I possibly do?

Gosh, I hate endo.  

Total Pelvic Peritoneal Excision: One Month On

One month ago today I had the surgery I desperately wanted.  Regular readers will know that, sick of incredibly debilitating pain and sick of being told to wait it out, I contacted Dr Edi-Osagie in England and asked him to undertake a surgery I couldn’t get an Australian doctor to do: Total Pelvic Peritoneal Excision (TPPE).  Today I want to share with you my experience of this surgery and my recovery over the past month.

Unlike a normal excision, which simply digs individual lesions out of the peritoneum, or lining, of the organs and pelvic wall, TPPE also removes the peritoneum so that endo has nothing to grow back on.  In my case, the good doctor did this to the back of my uterus and my urethra, which was where the endometriosis was growing in my case.  

I much preferred the preparation for the surgery than what we have in Australia.  In Australia, you have to drink a variety of icky liquids that give you appalling diarrhoea, and not eat for a day. For this surgery, I simply fasted overnight and had an enema.  Embarrassing?  A little.  But honestly, I’d rather have a nice professional nurse sticking whatever it was up my bottom than drink litres of glop so foul-tasting that it’s even odds as to whether you expel your insides through your mouth or your backside.  For those who’ve never had surgery, I cannot properly convey how bad that stuff tastes, particularly when you haven’t been able to eat all day, and have been on “white foods” only before that.

The day before the surgery I had all my testing and whatnot, and the day of I met a whole reel of nurses, my anaesthetist, and finally, Dr Edi-Osagie. Due to distance, we’d only chatted on Skype before this.  He is as lovely in person as he seemed on the computer, and was very careful to ensure that I understood what was going on and had no fears about it.  He was very thorough in his post-surgery explanation too, taking me through all the photos of my innards (which I got to keep!) and, unlike many surgeons, waiting until I was awake and functional before speaking to me. I’ve had previous surgeons explain to me while I’m still drifting in and out of an anaesthetic haze, and by the time I woke up properly, I would only retain about 1/10th of what they were saying.  By waiting til the next day, Dr Edi-Osagie ensured I actually would remember and understand what he said.  

Initial recovery from was painful, although no worse than my last excision.  As with last time, I woke up in recovery with the shakes.  Jury is out on whether this is pain or cold or both, but an extra warm blanket and having control of my own morphine supply sorted it out.  I remained fairly dependant on the morphine until mid-afternoon, but after that did not need to use it again.  By the evening I was sitting up and had my catheter removed so I could use the toilet independently.  By mid-morning the next day, I was ready to go home. 

A note for vegans: the hospital I was in did not have any vegan options for dinner.  Bring something.  

The biggest problem initially in my recovery was the shoulder-tip pain. When you have laparoscopic surgery they blow up your abdomen with gas so that they have room to work inside your pelvis.  Not all of that gas comes out immediately, and it can bounce around your diaphragm and up into your shoulders, leaving agonising pain in its wake.  It’s kind of like having a stitch, but 100x worse.  The only thing you can do is try to move to a different position, use heatpacks, and drink lots of peppermint tea.  

Once the shoulder pain started to reduce, I became aware of a new problem: constipation.  The trouble with morphine, codeine and tramadol, all of which I used post-surgery, is that they constipate you terribly.  I’m normally a 2-3 times a day type of girl.  My surgery was on Sunday, and I did not poop again until Wednesday.  When I did, I was stuck in the loo for about 20 minutes because things were so slow-moving.  My poor insides felt so bruised.  

Lately I have also been experiencing bladder pain.  Urination has been uncomfortable since the surgery due to my urethra being stripped all the way back, but a week ago my bladder or uterus or something in there was in agony when I peed.  It is calmer now, but still uncomfortable. It isn’t a UTI – there’s no burning and I’ve had it tested just in case – but boy, it’s not fun.

Overall, recovery from the actual surgery has been remarkably good.  I have four little incisions, which have all healed beautifully. My peritoneum is about 3/4 regrown now, apparently.  I did about a 5km walk less than two weeks after the surgery without too much trouble. Walking wasn’t really a problem at all after about a  week or so, although standing still remains an issue, so I used a wheelchair for things like shopping or going to museums, where you walk and then stop, walk and then stop.  

One month on and I’m fairly certain that all my remaining issues are attributable to my new mirena.  I find the adjustment period for the mirena really rough, and I’ve had ongoing spates of bleeding and period pain (not necessarily related to each other) for the past two weeks. If those aren’t gone soon, I’m going to talk to someone about having the mirena removed and see how I go without it.  

It is really nice not having endo pain in the way I have come to know it.  If I can get rid of the mirena pain I’ll be a happy little chappy.  At the moment, I’d definitely rate the surgery as a positive experience.  I hope to know properly by the new year whether it has really worked or not, and I will keep you all updated.  

A Canberra Adventure: Floriade and Living Green

I want to take a moment out of the travel series but still in the theme to talk a little about our nation’s capital. I have a great deal of affection for Canberra, but it is often dismissed as a boring city full of public servants with nothing to do or see. Granted, it’s not a cultural hotspot like Sydney or Melbourne. It lacks the historic beauty of Adelaide, the tropical temperatures of Darwin or Brisbane, or the stunning natural beauty of Perth or Hobart. However, I think it has it’s own special something, particularly in October.  I acknowledge it is now well into November and I am very late posting this.  Blame my computer troubles.

Anyway, why October? Well, in October there are two festivals that are a wonderful celebration of my favourite season, spring.

The first is Floriade. Floriade runs from the middle of September to the middle of October each year, and is basically a big celebration of pretty flowers planted in themed gardens. The theme for 2018 was pop culture. There were displays of superheroes, including Wonder Woman, Batman and Buffy the Vampire Slayer, which made me incredibly happy. There were emoji flower beds, a Where’s Wally, Marilyn Monroe, Elvis, and Pikachu. There were multiple tubs painted as minions.

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Whatever floats Floriade’s boat, I suppose.  [Imagine description: three tyres stacked on top of each other and painted to look like a Minion from Despicable Me, with flowers growing out of the top tyre.]
I have to admit that 2017 was kind of “meh” in terms of the display. I don’t actually remember the theme, which is an indictment in itself. This year, though, I thought was stunning. The colours were intense, the displays were riotously beautiful, and the scent of those massed flowers was delicate and glorious. Canberra is apparently having a nicely warm spring this year too, so the weather was gorgeous.

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Tulips are always the most-used Floriade flower.  [Image description: lots of flowers, mostly tulips, in pink, white and yellow].
The best way to really get an idea of what the flower bed designs are is to catch a ride on the ferris wheel. It can be a bit hard to see some of the designs from ground level, which is a shame, because the gardeners work incredibly hard to come up with clever, legible designs. From on high, you get to see their work properly. Tickets for individuals cost $9 and you get around 3 or 4 passes at the top.

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It’s much easier to tell that this is supposed be Wally of “Where’s Wally?” fame from above.  [Image description: a flower bed planted to look like a portrait of Wally from “Where’s Wally?”, surrounded by people.]
Floriade also has a number of stalls from small businesses in and around the Canberra region. My luxury-loving sister never fails to get a silky soft merino pashmina from Opal Merino. My mum recommends the nut stall for cashews, almonds, macadamias and walnuts coated in chilli or sugar. My dad enjoys the local craft beers from Bent Spoke Brewery and Capital Brewing Co. I’m a fan of some of the hand-made soaps and also the big curly potatoes on sticks.

Food can be a little tricky for vegans at Floriade, although there are generally some accidentally vegan options. Canberra is a pretty hipster city, so you’ll also sometimes be able to scrounge a deliberately vegan but overpriced buddha bowl or something from one of the food carts. There is also live music and the occasional wondering entertainer on stilts or in costume.

There are also activities, games and stalls for children, as well as activities that you can book in advance. Alternatively, if you want a more structured night for adults, check out Nightfest. The flowers get illuminated with hundreds of lights and there are generally special displays as well as comedy, musical and theatrical acts. Just be aware that Nightfest has a cost for entry whereas daytime Floriade is free.

Floriade by its nature involves a fair amount of walking. Parking can be a nightmare to get close, and the displays themselves are fairly sprawling. If your endo keeps you from walking easily, you may want to not do it all in one go. Alternatively, wheelchair hire is available for $12. Just be aware that some of the paths are pretty rough. We hired a chair for me and while I definitely needed it, there were times I wished it came with a seatbelt. Some areas of ground were quite hard for my mum to push me over. I definitely recommend going early in the day, too, as Floriade draws huge crowds that are not always alert to the needs of wheelchair users.

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It’s worth taking some time at each bed.  The displays en masse are beautiful but there are also some stunning individuals hiding in the crowds.  [Image description: a close up of a red flower with a black centre, and some smaller purple and yellow flowers below.]
If you tire of the flowers and the vistas over Lake Burley Griffin, or if you are a hungry vegan who wants more than nuts, popcorn and potatoes, take yourself across the lake to Albert Hall and the Living Green Markets.

Although far smaller and less spectacular than Floriade due to its rather niche nature, Living Green still makes for a great time out. With a focus on veganism and environmental friendliness, the main draw for me is the food. Canberra Magic Kitchen, Veganarchy (still no idea how to pronounce that), and Rainbow Nourishments are just a few of the stalls that set up with curries, soups, pies, sushi, sausage rolls, cakes (cheese, cup and full-size varieties!), chocolate, ice-cream and snacks. This year I indulged in a Magic Breakfast from Magic Kitchen, which involved the creamiest spinach and tofu scramble I’ve ever had. My non-vegan husband agreed – 10/10 delicious. It also had some sort of veggie patty and a flourless bread that were unlike anything I’ve tried before. Now I want nothing else for meals ever again. I also had a peppermint Belgian hot chocolate from Dream, which is one of the best hot chocolates I’ve ever had – sweet but not overly, no obvious soy taste, and none of that nasty sludge at the bottom. For dessert I tried the rainbow pear and chai cake from Rainbow Nourishments. You’ve heard me rave about her cookbook before, but trying her products in person is even better.

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Yes, it looked this amazing.  It tasted fantastic too, although the slices were very generous and I felt overstuffed afterwards.  The buttercream to cake ratio was perfect.  [Image description: a cake covered in pink,blue, green and purple slices of pear}.  Photo courtesy of Rainbow Nourishments.
There are also stalls to raise funds and awareness for all manner of great environmental and animal-related causes, including Little Oak Sanctuary, the Animal Defender’s Office, Australian Rescue and Foster, and the MAWA Trust. You can buy vegan candles, handbags, wallets, make up, hats, cookbooks, advocacy books, and all manner of treats both savoury and sweet.  There is live music of variable quality but always a lot of passion.

Living Green has a sense of happiness and bustle as a multitude of vegans and environmental activists gathered to shop, mingle and (mostly) eat. If you visit Floriade on the first Sunday of October (Living Green’s usual date), I highly recommend taking a detour over to Living Green as well.  If you miss out in October but think you’ll find yourself in Canberra on the first of December, there’s another chance to sample the Living Green Market then.

Parking is a bit closer for Living Green and the ground is flatter, but the more cramped conditions may give wheelchair users some trouble.

Note for both events: bring cash! Although many stalls at Floriade accept cards, some don’t, and most at Living Green are cash-only.

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One more picture of a flower, because they were so pretty.  [Image description: a pink flower with a black centre and squiggly yellow stamen.]
Have you ever been to Canberra or attended either of these events? Please feel free to share your photos in the comments!

Flying with Endometriosis Part 5: What I’ve Learned

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!

Flying with Endometriosis Part 3: What to Wear

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.

What is the first priority on a plane (except from arriving at your destination, of course)?  Comfort!  Planes are not the most comfortable, particularly if you are crammed into economy.  With endometriosis, it’s even less comfortable.  You’re stuck in pretty much one position for hours at a time and you have to line up for ages to use the toilet.  Then you have to walk around a heap in the airports.  Enduring all that, you can bet your [insert noun here] I want to be comfy.  Trouble is, I also want to look good, partly because I am vain and shallow and partly because it makes me feel more confident, alert and prepared.

I’ve already discussed how to dress an endo belly, but when you are travelling you really have to take comfort to the next level.  If you are more of a video person, I highly recommend checking out Miss Louie, who is one of my favourite youtubers.  She’s done this video and this one with a whole bunch of easy-to-wear travel outfits.  There’s something for everyone.

However, if you prefer a written list or simply can’t see Miss Louie’s options working for you, read on for a more general discussion.

In choosing an outfit, I think there are some questions you should ask yourself:-

  1. Does this press on my pelvis when sitting, standing or lying?
  2. Does it press on my pelvis if I swell up?
  3. Does this press on any other joints that tend to get sore or swollen?

These three are the most important, because that is ultimately what will dictate if an outfit is going to be comfy for a person with endo.  Anyone who suffers from flareups knows that something digging into your pelvis when it is sore and swollen if just horrific.  For some people, this may mean that any pants at all are off the table and you need to look at a dress instead.  For others, leggings or even super stretchy jeans or an elastic-waisted skirt will be fine.

The remaining questions are more general and probably less of a deal-breaker than the above three, but still worth thinking of:-

  1. Are there any buttons, zips, or other decorative things that will dig into you?
  2. Is it comfy enough to sleep in?
  3. Will it ride up and flash things it shouldn’t?
  4. Will it give you a wedgie?
  5. Will it wrinkle easily/does it look bad wrinkly?
  6. Can you take layers off if you get too hot or add layers if you get too cold?
  7. Do your shoes slip off easily for going through security?

If it will dig in, isn’t comfy, rides up, wrinkles, can’t layer and your shoes require a lot of lacing or other fiddling, don’t wear it.  It will be a hassle.  It will be uncomfortable, you will not sleep as well and you will get to the other end looking and feeling less than stellar.

My go-to for flights is this combination.

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All of these items are from Modcloth, except the boots which are from Betts.  (Yes, I used Stylebook to put this together).  They are a few years old so I doubt anyone dying of envy about my incredible stylishness will be able to get those exact items, however.  From the bottom up:

  1. Knee-high riding boots might not be as easy to slip in and out of as a pair of slip-on trainers, ballet flats, or ankle boots, but I know that I will wear them a lot in the UK so if I don’t wear them, I’d have to pack them anyway.  As they are my heaviest shoes, it makes sense to carry them on my feet rather than haul them all over the airport in my suitcase.  They do still come on and off easily, and look good with my leggings.
  2. Under my boots I’ll be wearing a pair of compression socks, to avoid DVT, or Deep Vein Thrombosis, which is a blood clot that forms in the leg.  You won’t necessarily get it if you don’t wear them, but if you do, it can be super dangerous.  It’s very easy for DVT to become life-threatening in a very short space of time.  I’ll also use the compression socks in hospital after my operation, so they are good investment, if not the comfiest.  As I wrote earlier, I’ll have cosy socks to wear over them on the flight, because I kick my boots off as soon as the seatbelt sign goes off.
  3. I love these leggings because they have actual function pockets that can hold a lip balm or spare change.  They are a little small for my phone, but having pockets at all is great.  They are thick and warm but not too hard on the old pelvis.
  4. Underneath the top I’ll be wearing this singlet from Boody.  Incredibly soft and comfy (with the added bonus of being ethically made and environmentally friendly), the singlet will just provide an extra layer of warmth, help preserve modesty if something happens with my top, and let me take a top layer off if somehow my flight gets stranded in Dubai with no air-conditioning again.  Seriously not fun.  I nearly passed out.
  5. The top itself is just loose, soft and very comfy, but a bit fun with the patterned sleeves.  It helps make it just a little less basic.
  6. The cardigan is loose and voluminous so I can wrap it around me.  It has a deep hood so I can cover my face in case I loose my eye mask for the flight, and hide the fact that I’ve got a sheet mask on or suchlike.  It looks a little more dressy than, say, my Batman hoodie, but it is still comfy and casual.

I’ve flown with this outfit before and it was comfortable and practical.  Post-surgery the leggings might be a little tight or irritate the incision sites – if that happens, I’ll switch to a long-sleeved maxi dress from Divinity collection.  It’s not quite as ideal as they are incredibly long so they do drag on the floor and do wrinkle a bit.  However, it is very comfy, will keep my covered when I lie down, and is an easy canvas to accessorise.  My pelvis will be totally free to do its thing and I will be warm, my modesty will be protected, and I should still look pretty acceptable when I stumble into my husband’s arms when I arrive back in Australia.  I’ll be taking both my black and my burgundy ones in my suitcase in any event.

Do you have a go-to travel outfit?  What do you look for in travelling clothes, either generally or to protect yourself from endo pain?  Let me know in the comments!

Flying with Endometriosis Part 2: Carry-On

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.

In my last post I talked about some of the things people with endometriosis can do before they travel to make the journey a little easier. But what should you take on the flight with you to help once you are in the air?

I’m going to list all the things I’ll be packing in my carry-on and why. It won’t all be endo-stuff, so hopefully this will be useful to everyone, but there will be plenty of endo-specific items on there.

Although I do want to try travelling with only a carry-on in future, that’s not feasible this time round as I’ll be having surgery and will need more items than I can fit in a carry-on. This post is therefore going to assume people are travelling with both a carry-on and checked luggage.

My carry-on bag is the Deluxe Handbag of Holding from ThinkGeek (unfortunately discontinued). It has lots of pockets, is comfy to carry and holds heaps of stuff. It also slides neatly into the overhead lockers, or, better yet, under the seat in front. For that reason I prefer it to a backpack, which can be more three-dimensionally bulky than a messenger bag.

Deluxe Handbag of Holding
Deluxe Handbag of Holding.  Note the many handy pockets.  

I’ll divide the contents up into “themes” within the back, using the different pockets and some clear makeup bags to corral all the different bits and make them easy to find.

Now, onto my list.  Buckle up, because it’s a long one!

ENTERTAINMENT

– A book. Kindles and e-readers are great, but we have a family tradition of treating ourselves to a new book when we go on a long-haul flight. It is nice to read something new and to give my eyes a break from the screen.

– A kindle, because I read quickly and there is no way one book will be enough, particularly whilst I’m recovering from surgery. It is easier on the eyeballs than a backlit screen and holds a charge for a million years.

– My phone. Music, books, movies, my blog, the internet, app games, and a useful tool all in one. To maximise its use I will also be taking my earbuds and a portable recharger pack, because iphones are battery-guzzlers and I use mine a lot.

– A puzzle book. I love sudoku, killer sudoku, kakuro and grid-based logic puzzles. These booklets are usually thin and light, but doing something on a hard copy is a nice change from electronic entertainment and helps stimulate my brain by giving it something different and a little challenging to work on.

– My journal and pencil case.  I’ll be able to write, doodle, plan, play noughts and crosses or hangman, and pass immature notes to my sister.

COMFORT

– Cosy socks. I’ll be wearing compression socks to reduce the chance of DVT (more on that later), but they aren’t very warm, planes are chilly and I have poor circulation. A pair of warm socks makes for a happy me.

– A blindfold and earplugs. Most airlines will provide these and they are really helpful in getting some shut-eye on the plane, especially if you, like me, sleep with a blindfold anyway.

– A travel pillow. For economy/premium economy, a neck/shoulder pillow that makes it possible to sleep in an upright position, as it will support your head from lolling uncomfortably to the side. There’s bucketloads of different styles out there, but I’ve chosen this one as I like how high it keeps my head and the fact that it doesn’t go behind the neck or across the throat. Although I may not need it on the flight it will be very useful on the trip to hospital. For people in business or first, you may not need a pillow at all, but I have used this one before and really liked it. It can also help bolster the slightly sad pillows they give you to sleep on.

– A blanket or shawl. I opt for the blanket in the above pillow/blanket combination. It’s thin and light but very warm. I get cold absurdly easily and get too cold on flights even with the blankets they provide, so an extra blanket is a must for me. I choose a blanket rather than a shawl as it covers all of me, but a shawl is more versatile as you can wear it and not look like a ninny.

Berocca. I love this stuff. For those not familiar with it, it is a multivitamin that dissolves fizzily in water. It comes in a few flavours (only berry and orange are readily available in Australia) and it is very refreshing. It perks me up far more easily than caffeine without the crash when it wears off. It’s healthier than coffee and has the added bonus of helping prop up your immune system with easily-absorbed vitamins.

– Painkillers of varying strengths. I will be taking everything from panadol and De-Gas to endone, just in case. If you are planning on taking the strong stuff, it is a good idea to have a letter from your doctor explaining that you have a legitimate reason to be carrying a small pharmacy of opioids.

– Heat patches. You can’t really take a microwaveable heat pack on a plane, but stick-on heat patches can give the same relief for a fraction of the room and don’t require external heating. Carry plenty. I’ll be wearing one on my lower back as a matter of course and carrying spares for my pelvis.

– Nasal drops and nasal spray. I get a very dry nose on flights because they are so dehydrating and I live in dread of that turning into (yet another) sinus infection. Nasal drops help get rid of congestion and the spray helps rehydrate those sore passages.

– Lozenges. Again, dry air, insufficient water – a sore throat is a strong possibility.

– A water bottle. You do get water on planes, but it comes in very small disposables cups or bottles. It simply isn’t enough to keep you hydrated. Taking a water bottle lets you have more water at a time without bothering the cabin crew every thirty seconds.

– Knee pillow. This isn’t something everyone will need, but I’m a side-sleeper and I need something between my knees to alleviate pressure on my back. I have a very old, very floppy pillow I use for this and I’m going to be terribly extravagant and take it with me. I can also use it as lumbar support, cushioning between my pelvis and a seatbelt, or just for clutching to my stomach as a comforting thing during a flare. It’s not for everyone, but for me it’s a must.

– A hair tie and hair brush.  I’ll be braiding my hair out of the way anyway, but hairties snap and get lost exactly when you need them not to, and it is always nice to have brushed hair.  Makes you feel a little more human when you stagger off the plane.

SKIN

– Face and body wipes. Air travel is exhausting and it is easy to end up clammy and gross-feeling. Being able to clean up either at a stopover or in the airport loo can make you feel so refreshed and more awake.

– Mist toner. Whenever I wash my face I always follow up with a toner. I’ll be taking my Skinstitut mist, which is not only a toner but can also be used as a refreshing spray under or over makeup and smells divine. A little spritz can help wake you up and help you stay feeling fresh in between washes or stops.

– Night cream.  Because it is heavier than a day moisturiser it is better at standing up to the beating your skin takes on a long flight.  I’ll be taking this one from ELF as my normal Sukin one, whilst amazing, is in a big heavy tub.

– Lip balm.  Again, airline = dehydration = chapped lips.  I’ll be using a tinted one from Hurraw to add a little colour to otherwise uniform pasty white of my face.

– Sheet masks.  Yes, it’s a bit extra, but I’m going to be on those planes for a long time and a little extra moisture and luxury never goes astray.  I am determined not to look the way I normally do when I stumble off a long flight – like an ashen, pasty-faced zombie.  I will have glowing skin, darn it!

– Eye roller.  I just use this little doodad from ELF, which instantly refreshes and cools my puffy eye bags.  It’s just really nice and takes up basically no room, so for me it is totally worth it.

– Concealer and brow powder.  The only makeup I’m taking.  I just want to be able to cover the inevitable enormous pimple that will arise during the flight and fill my brows in, because that makes me feel a little more put together and with it when I land, which in turn makes me feel more awake, confident and ready to deal with the jetlag.

– Hand sanitiser.  Planes are filthy and you don’t necesarily want to wait in a queue to wash your hands before your food comes, especially if you get trapped by the food trolley and have to wait ten million years to get back to your seat.

– Hand cream.  Dehydration, etc etc.

– Deodorant.  For the sake of your fellow passengers, please.

– Toothbrush and toothpaste.  Some airlines give it out, some don’t.  I want to take my own toothpaste in any case, so I know that it is vegan, cruelty-free, low-abrasion and contains fluoride.

MISCELLANEOUS

– Spare undies, because when you have endo you never know what your body will surprise you with.  Also, luggage can get lost.

– A spare top and leggings.  I’ll be taking these leggings and this long-sleeved top from Boody.  These items are incredibly thin and lightweight and take up very little room, but they are warm, soft and incredibly comfortable.  The leggings I won’t wear without something covering my bottom as they are a touch see-through, but these will double as a change of clothes in an emergency, and will function as pjs if my luggage goes AWOL for a while.  They are also great for an extra layer of warmth if I get even colder than anticipated on the plane or when we land.  I plan to buy several more of those tops.

– Sanitary pads.  See above re underpants.  Also, it’s nice to be able to have one to hand if another person finds themselves in period-related difficulties without adequate supplies.  Tampon or cup users will want to bring those instead.

– Passport, tickets and wallet (duh).

I think that more or less covers it!  I will no doubt think of extra things I want to take, forget to pack something, or change my mind at the last minute, but this is my list as it currently stands.  Anything you would add to it?  Anything that you have found really helps your endometriosis travel a little easier?  Anywhere you think I’m being totally OTT?  Let me know!