June Gratitude

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

IMG_7842.jpg
Image description: a fluffy ginger cat with green eyes and a slightly angry expression.  That’s Max.  He’s not actually angry, he just has a resting bitch face.  He’s so chill that today he let me pull him down onto his side and rub his tummy for a good ten minutes.  For many more Max pics follow my instagram – OffBalanceSpinningTop.  

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

4)  A good boss

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

5) Fulfilling a goal

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

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

6) Pretty dresses

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

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

7) Clean water

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

8) Assassin’s Creed

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

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

9) One year

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

10)  Today

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

 

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

The Financial Impact of Endometriosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2) I quarantine my savings

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

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

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

3)  I pay attention to my super

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

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

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

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

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

 

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

 

Save These For Future Use, Part 1

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

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

1)  A pain scale we can all understand

Chronic Pain Scale

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

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

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

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

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

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

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

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

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

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

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

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

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

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

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

2) What being able to work really means

A tumblr thread that reads:

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

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

Dead silence.  Nobody cares.”

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

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

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

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

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

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

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

3) Changed lives

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

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

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

4) The in-between

it sucks too because nobody believes you. you are so alone and you have no peace no relief. At some point you even consider  suicide as your way to peace.

Image reads: “A chronic illness phenomenon

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

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

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

5) It is more than pain

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

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

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

 

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

Stay tuned for Part 2.

Working with Endo: What to Wear

CW: maternity, weight gain, gendered language

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

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

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

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

1) The well-fitted knickers

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

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

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

2) Elastic-waisted black trousers

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

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

3) A stretch black pencil skirt

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

4) Good tights

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

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

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

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

5) A slouchy blazer

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

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

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

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

 

January Gratitude

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

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

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

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

1) Three weeks of holiday

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

2) Beach time

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

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

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

3) My new job

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

4) My catio

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

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

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

5) Thunderstorms

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

6) New Pathways

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

7) My parents’ lovely Czech neighbour

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

8) My new diaries

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

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

9) Fun hair

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

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

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

10) How privileged this list is

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

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

The Lessons of 2018

TW: depression, ableism, general unhappy stuff

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

 

1)  The world forgets the sick and disabled

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

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Image description: a hand pressed up against glass, touching its own reflection.  

 

2)  Some people actively hate the sick and disabled

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

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

 

3)  Spoon theory is so applicable

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

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

 

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

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

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

On the flip side, of course…

 

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

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

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

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

 

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

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

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

 

7) Sometimes hard and scary decisions are necessary

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

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

 

8)  Depression is harder than you can possibly explain

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

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

 

9) You cannot overstate the importance of support

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

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

 

10) You are stronger than you think

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

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

 

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

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.

Spoon Theory

Have you heard people say, “I just don’t have the spoons for this?” and wondered what it means?  Well, let me explain.

Spoon Theory is a way of explaining the effort of living with a chronic illness.  Created by Christine Miserandino during a meal in a restaurant, it goes like this:

Imagine that you start a day with a bunch of spoons.  These represent your total energy for the day.  Now, if you are a healthy person, that bunch is probably quite large.  If you have a chronic illness, it’s not going to be as big.

Now, take yourself through your day.  If you are healthy, getting up, getting dressed and getting to work might just take one spoon away from you.  Let’s say you started with 24.  Now you have 23.  If you have a chronic illness, each of these tasks might take one or two spoons.  Let’s say four total, because getting ready requires a number of smaller tasks.  If you started with just 12, now you’re down to 8, and you haven’t even started work yet.

Now let’s go through what would be a typical day for me.  Let’s say I’m at the court in the morning giving duty advice.  I have a three hour shift there.  That shift by itself costs me one spoon.  Add in an exceptionally difficult customer and that’s another spoon gone.  Let’s say it’s a particularly mad week and I’ve got to go into court for someone – another spoon.

So if that three-hour shift took 2 or 3 spoons, I’m down to just 5 or 6 left for the rest of the day.

I have my lunch break.  A healthy person might gain a spoon from some food and a break.  I don’t.  I need it just to maintain my spoons at their current level.

In the afternoon I see a client (another spoon), do some follow-up work from the morning (another spoon), deal with the inevitable crisis, because there is always one (another spoon), and review my files (another spoon).  That’s four spoons.  I’ve just got one or two left, and I still need to get home, eat, shower, feed the cat and go to bed.  If my husband is away, I’ve also got to walk the dog and cook myself dinner (he is my wonderful chef most nights).  As you can see, there aren’t enough spoons in the drawer for that.  That’s how I can end a day without having done much at all and still be totally and utterly wiped out.  I certainly can’t do what other people can do after work – go to a class or the gym, or spend time with friends.  If I do that I won’t have enough spoons left to do what needs to be done.

Now, some days I might have more spoons than others, and sometimes I’ll gain a spoon during the day if my pain suddenly vanishes or my meds kick in and give me a burst of energy.  On the other hand, if I forget my vitamins or suffer a flare-up, or even just have a cold, I’ll have even fewer spoons.  Right now I have the flu, a sinus infection and gastro (thank you, depressed immune system), so my spoon count is pretty low.

Some spoon-raising factors include good self care, such as getting a good night’s sleep, eating three good meals, staying hydrated, sitting in the sun for a few minutes and just enjoying life, taking all my vitamins, and waking up pain free.

Spoon-reducing factors include flare-ups, sickness, waking up in pain even if it later goes away, failure to look after myself, a late night or early morning, a bad dream, difficult people or conversations, and stress.  The longer a flare-up goes on, the fewer spoons I will have each day as exhaustion, prolonged pain and depression eat away at them.

One consequence of this is that chronically ill people have to be super aware of our spoons.  I am not always very good at this and frequently overestimate my own abilities, leaving me without the physical resources to be useful in the latter part of the day.  Generally speaking, though, I am aware that I live life in a series of trade-offs – if I do X, I can’t do Y.

Up until this little flue debacle, things were going relatively well – last week I had sufficient spoons to do something after work every night of the week, whether it be walking the dog, writing a blog post or driving thirty minutes to see my parents.  Sure, some nights I was cutting it extremely close to the wire and had to massively overcompensate with caffeine on Friday which led to terrible pain on Saturday (see?  Trade-offs) but overall I was pretty well supplied with spoons compared to how I had been just two weeks earlier.  This week, not so much.

Have you heard of spoon theory before?  Do you ever use it when explaining your illness to others, or do you have other methods you prefer?  Share in the comments below.

Great Hair When You Don’t Care

Yesterday I talked about getting rid of unwanted hair.  Today I want to talk about what to do with the stuff on top of the head.

Given the effort I put into cleaning my face, you’d be forgiven for suspecting that my hair routine is equally extensive.  It isn’t.  I love my hair but I hate dealing with it.  I wash it once a week, if that, and it does usually get brushed if I’m going to work.  There’s maybe a 30% chance of it getting brushed on a sick day or weekend.  It’s generally the first thing to get neglected when I’m really struggling.

For that reason, I have a series of go-to hairstyles for when I am sick, tired, or can’t be bothered but still need to look professional for court or like I made some sort of effort.  It helps me look better, which helps me feel better, and making the effort sets my day up in the right way.  That being said, I don’t want to actually have to make a big effort, I just want to look like I have.  Thus, here is a list of hairstyles I use.  Bear in mind that my hair is medium to long, so these styles may not work for shorter hair.  My hair is also very thick, so people with very thin or fine hair may need hairspray or some sort of product to increase volume (that being said, I still try styles designed for people with much thinner hair and just pin them to death).  Having very ordinary white girl hair, this post probably won’t be of much assistance to my black sisters.

None of these tutorials are mine, of course.  I don’t have the skills.  These are just tutorials that I love and keep handy for my low-effort days.  I have worn each and every one and I can confirm that they are both easy and fancy, perfect for those days when you really need to be lying in bed crying but still have to drag yourself into work.

1) Upgraded ponytail

A basic ponytail is a great thing, but just a little bit of extra work can make it into something just a little more put-together and voluminous, which I think makes a person look more energetic and gives the impression of someone who really has their act together.  The beautiful Kaylee Melissa (I’ve been a die-hard fan for years) does this great tutorial on some really easy ways to take your ponytail to the next level. I find her tutorials very easy to follow and she just has such a lovely vibe.  Follow this link to the original video.

2) The Textured Sock Bun

Everyone knows of the sock bun, but I particularly love Emily’s (the Freckled Fox) version because it doesn’t even require me to tidy my hair first and it still looks super professional.  It’s corporate but not boring and it takes so little effort.  I wore a slightly more embellished version today, but I use one of the dark brown foam forms you can pick up in Woollies rather than a sock.

3) Tucked Half-Updo

Tuck and Cover Half 2

I love a pretty half-up style, and this one from Missy Sue is both easy and beautiful.  I think it looks best on curly hair, but it is doable on any texture.  It gets the hair out of your face and is office appropriate as long as your headband isn’t too wild.  I actually worse a similar style (full updo, though) at my wedding, and I can confirm that it is pretty quick and easy but looks so dressy.

4) Knotty Updo

Lulus How-To: Knotty Updo Hair Tutorial at LuLus.com!

If you do need an office-appropriate updo but don’t want to do a bun, this knotty style is a gorgeous alternative.  If you can tie a knot, you can do this.  I’ve worn it in court and it looks professional, intricate and like I actually really tried.

5) Candy Floss Bun

Hair Tutorial: Cotton Candy Bun

I can’t finish without this super cute bun.  It’s not one I’d wear to court but I just love it so much.  It’s so fun and voluminous!  Admittedly combing it out the next day can be a pain, but that is a problem for tomorrow me.  It’s incredibly easy, and because I’m a cheapskate who doesn’t like washing her hair I don’t use any product in it (it still stays fine).  It’s great for casual Friday or a day I’m not in court.  You can also do the style a bit further down the back of your head for a slightly more professional look.

Thus concludes my round-up of work-appropriate styles for when you are struggling and can’t devote much time or energy to hair.  There will always be days when you can’t do even these simple styles and your hair should consider itself lucky if it is brushed and moderately clean. but hopefully these will give you some go-to styles for days when you have some energy, just not very much.

If there is interest, I’ll do a similar round-up of quick and easy formal dos.  Also, if any short-haired peeps or curly girls want to do a round-up of endo-friendly hairstyles for different hair lengths and types, please let me know – I’d love some guest posts on that sort of thing.

Have you tried one of these styles?  How did it go?  Any others that should be on this list?  Let me know in the comments.

Dealing with Discrimination

I’ve mentioned previously that dealing with discrimination at work is a risk for anyone with a chronic illness.  In a way, I get it – what employer wants to pay for someone who can’t always perform at high capacity, and who will take far more sick days that your average employee?  On the other hand, it’s hard to be sympathetic when it’s your livelihood at stake.  Got to love capitalism.

But discrimination is a reality for people with chronic illness, so what can we do about it?

The law

I’m a lawyer, so the first thing I want to talk about in this post is the law.  However, I’m not an employment lawyer or a discrimination/human rights lawyer, so my understanding of the legislation is comparatively simplistic.  That may not be a bad thing, though, because I don’t want to bore you to tears.

The two key pieces of legislation that any endo-sufferer should know the names of are the Fair Work Act 2009 (Cth) and the Disability Discrimination Act 1992 (Cth).  That Cth in brackets means that it is Commonwealth legislation, so applies Australia-wide.  There may be additional Acts in your jurisdiction that supplement the framework created by these two.

The Fair Work Act (“FWA”) is basically an outline of all the rights and responsibilities of employers and employees.  Be wary – the protections for unfair dismissal, which are of most concern for us, don’t kick in until you’ve been in a position for 6 months, or 12 months if you work for a small business (less than 15 employees).  s385 of the FWA covers unfair dismissal.  Basically, it’s unfair if it is harsh, unjust or unreasonable.  It can also be unfair dismissal if you were told you were being made redundant, but you actually weren’t and the organisation was just looking for a sneaky way to fire you.

s340 of the FWA also protects you from an employer taking some sort of action against you, such as cutting pay or hours, because you exercised (or chose not to exercise) a workplace right, such as taking sick leave or complaining about another staff member.  s342 sets out a whole bunch of things that may be adverse actions in detail.  Under s343, employers also aren’t allowed to bully you into an action, and s344 prevents them from exerting undue pressure on you to change your working arrangements.

The FWA also has in-built anti-discrimination conditions.  s352 means they can’t discriminate against you for temporary absence due to illness or injury.  s351 means that they cannot take adverse action against you because of a disability.  HOWEVER, that does not protect you if you simply are not capable of meeting the requirements of the job.  If your endometriosis becomes so bad that you cannot carry out a key function of the job, changing your job or even firing you may not be illegal or discriminatory.

The Disability Discrimination Act (“DDA”) focuses on discrimination generally due to disability, including in areas such as education or access to premises.  It differentiates between direct discrimination (treating someone with a disability differently) and indirect discrimination (requiring someone with a disability to comply with a requirement that they cannot comply with where reasonable adjustments could be made to allow them to comply).

s15 of the DDA focuses on discrimination at work.  It makes it illegal to take the disability into account when determining if someone should have a job or what the conditions (pay, hours etc) of that job should be, to deny them access to training, promotions or transfers, to dismiss them, or to in any other way subject them to a detriment because of their disability.

Workplaces will generally also have their own enterprise agreements or awards that may also cover some of these things.

All of this raises the question, of course, of whether endometriosis is a disability.

Is Endometriosis a Disability?

Officially?  No.  The Department of Social Services does not list it as one for eligibility for a carer, but that list is very small anyway and you have extremely low day-to-day function to qualify.  It doesn’t appear that we qualify for the National Disability Advocacy Programme either.  I think there is some scope to argue that it may be a disability for the purposes of the National Disability Services, based on their definition of “conditions that are attributable to a physical cause or impact on the ability to perform physical activities”.  However, the sporadic and irregular nature of the flare-ups may disqualify many of us.  Those in constant, extreme pain are more likely to be able to mount a successful argument there.

However, those lists are about access to services.  The relevant legislation, the DDA, includes us.  s4 defines disability as including “the presence in the body of organisms causing disease or illness”.  So we are arguably protected from discrimination based on our endometriosis under that Act.  Importantly, the FWA doesn’t require a disability to activate most of its protections anyway -non-disabled people are protected from unfair dismissal too.  Given that these pieces of legislation are more important than the things mentioned above in terms of protecting us at work, I think that’s a win.  In the face of unemployment, it’s certainly an argument I’d give a whirl.

What can you do?

But what do you do if you experience discrimination at work?  It’s all very well for me to say, “That’s illegal!”, but how does that help you?  You have a few different avenues to go down in terms of seeking a remedy for the wrong that’s been done to you.

The first step is almost always to attempt to resolve the matter internally.  Speak to your boss, to HR, to your boss’ boss, whoever you need to to get things moving.

However, if a matter can’t be resolved internally, you have to take it elsewhere.

If you have been unfairly dismissed, you have an incredibly tight time limit to lodge an unfair dismissal application with the Fair Work Commission – just 21 days.  That’s real days, including weekends and holidays, not business days, so get it lodged ASAP.  The site has a load of detail on unfair dismissal and making the application here.  Even if you aren’t feeling too certain and want to wait for legal advice but can’t get in with a lawyer before the 21 days are up, just lodge it.  You can always amend it with a lawyer’s help later, so just give it your best shot and get it in.

If your application is upheld, you can get one of two things – compensation or reinstatement.  Most people don’t want unhappy jobs back and go with compensation.  The FWC can also force the former employer to give you a good reference so they can’t take revenge on you for winning.

If you haven’t been dismissed but are having other issues at work such as forced reduction of pay or hours, a change of position or being denied access to promotion, you can make a General Protections Application.  You can also make one of these if you are dismissed but it doesn’t amount to an unfair dismissal (although usually you’d just make the unfair dismissal application).  If the GP application is about dismissal, that tight 21 day limit still applies.  If it’s about other stuff, relax, you’ve got six years to lodge.  It’s always better to lodge sooner, though, where witnesses’ memories are fresh and the evidence is easily reached.  Here’s some great information sheets on GPs.

You can also make an application to the Human Rights Commission about workplace discrimination under the DDA.  You can either apply through the Australian HRC or your state or territory HRC.  The process is pretty similar for both – you have a conciliation, at which the HRC tries to get you to come to an agreement.  If you do, your employer may offer an apology, compensation, reinstatement or systemic changes in the workplace through training and education.  If you don’t…I find that the process tends to fizzle out a bit there, in my limited experience with clients with HRC complaints.  Generally I push people more towards the FWC.  That being said, there’s no harm in doing both.

Where can you get help?

Being a lawyer, I have a pretty good handle on what they charge, and they aren’t cheap.  I would always start by calling the Legal Aid helpline for your state or territory.  If they do employment law and you are eligible for their assistance, they will get you to fill out an application form to have a lawyer represent you.  Just beware – the assessment process for some states can take a very long time.  Last I heard from NSW, it was taking 6 weeks.  Smaller jurisdictions may be quicker.  The point is, if it is an unfair dismissal application, start it yourself and don’t wait for Legal Aid.

However, even if Legal Aid can’t represent you, they can at least give you some information over the phone to point you in the right direction.

TAS – 1300 366 611

VIC – 1300 792 387

NSW – 1300 888 529

ACT – 1300 654 314

QLD – 1300 651 188

NT – 1800 019 343

WA – 1300 650 579

SA – 1300 366 424

If they can’t assist you enough, call the Law Society for your state or territory.  They are obligated to give you a referral to a law firm.  Ask specifically for lawyers who do a no-win no-fee arrangement.  That way, if you aren’t successful, you won’t end up whacked with a big legal bill on top of no job.  If you do win, they’ll simply take their fee out of your compensation (if you are compensated).  It’s also worth asking the Law Society about pro bono help.  That’s where private law firms help you out for free, usually because you can’t afford them but still have a good case.  It’s a good option if you earn too much or have too many assets to qualify for ongoing help but can’t afford a lawyer (which is the vast majority of people, to be quite honest).

 

I hope that’s a not-too complicated summary of what the law says and what you can do if you experience discrimination at work because of your endometriosis.  Has anyone been through the legal system for something similar?  Have you been discriminated against because of your illness?