Tag: Changes

Decisions, Decisions, Part I: Employment

Published on by Bubbles in the Brain1 Comment

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

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

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

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

First, and most obviously:

1) Can you physically do it?

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

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

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

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

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

Please note that the above is not legal advice.

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

3) Can you afford it?

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

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

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

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

What are your other options?

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

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

 

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

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

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The Biggest Difference Between Adenomyosis and Endometriosis – It’s Not What You Think

Published on by Bubbles in the Brain1 Comment

Massive CW for fertility, pregnancy, hysterectomy.

Brace yourselves, kids.  This one’s getting personal.

As you may know from recent posts, my formerly tentative diagnosis of adenomyosis is now officially confirmed.  Unlike my endo, which showed up on precisely no scans ever, my adeno showed up loud and proud at the top of my uterus on an MRI.

I’ve talked before about what adenomyosis is and how it differs from endometriosis.  The biggest difference for many is that adenomyosis can be cured by a hysterectomy, which endometriosis cannot.  That’s kind of what I’m getting at with this post, but also not.  It’s the results of that dissimilarity that has been the biggest difference for me.  For the first time, I’ve had to think really seriously about what I want from my future.

I’ve flirted with the idea of children before.  I mean, I am married, and in my late twenties, so it is something that many people would assume is the next natural step for me.  I’ve kind of always assumed I would end up with children, because it’s what you do, right?  You grow up, you meet a nice boy, you get married, you have two and a half children and a white picket fence.  The circle of life, etc.  At the same time, however, I have never been overly maternal.  I don’t get clucky when I see a baby.  I’m not all get-it-away-from-me – I can hold them competently enough, and I can entertain children for a few hours (it literally used to be my job, after all), but I never really felt the need to have one myself.  Add to that the fact that there are so many children in need of a good home, that our planet’s population is increasing at a rapid pace, that I could potentially pass these awful diseases onto a daughter, and that I really resent the idea of taking yet another hit to my career and to my body when both have already had to endure a great deal, and children just never became an immediate priority.

There’s also the fact that I’m terrified of pregnancy and childbirth.  It looks hard.  It makes your ribcage expand.  All these awful words like “episiotomy” and “tearing” get tossed around.  The thought of losing bowel control in front of a bunch of strangers, and worse, in front of my husband, also doesn’t appeal.  It’s undignified and painful, and I’ve had enough of both.

But now I have adeno.

As long as I had endometriosis I knew that I would have to make a decision on the topic at some point, because endometriosis *may* have an impact on my fertility.  My original plan of leaving it to my thirties was not one that various doctors have encouraged.  Still, I assumed I had time, and that at some point down the track some sort of maternal instinct might kick in, or I might at least feel a bit ready.  It hasn’t to date.

With adeno, however, suddenly the possibility of an outright cure is being dangled in front of my nose like a very shiny carrot.  One operation – albiet a serious one – and my pain could be gone.  My endometriosis is being managed so well by Dr Edi-Osagie that for the first time in years, the prospect of a fully pain-free life seems within my grasp.

Of course, if I have a hysterectomy, then it is bye-bye to the prospect of biological children.  Yes, adoption is an option, but let’s not pretend that it is easy, cheap or inevitable (multiple chronic illnesses tend to count against you in the assessment process, I do believe).  So now I have yet another of those awful choices that endo and adeno leave you with – do I endure the pain for longer, and potentially experience more when my contraceptive devices are removed, in the hope of conceiving a child, or do I jump at the chance of a cure right now and lose the choice forever?

If I chose the first option, how long do I wait?  I always wanted to be financially stable before bringing a child into the world, and I’m not badly off, but I’m not where I would ideally like to be.  I wanted to be further into my career.  I wanted to have travelled more.  I wanted to do a lot of things that endo has prevented me from doing, but that a child will also make more difficult.  I wanted to feel more ready, more sure.  It’s such a big decision – is it fair for me to be making it with even the slightest doubt in mind?  What do you do when you have doubts about either option?

Is it fair of me to put my husband through this?  I’m already a bit of a burden at times (many times).  My pregnancy could be really difficult and make it even harder on him.  He’s self-employed where as I have a stable income – there’ll be an additional financial pressure on him.  If I do successfully carry to term – let’s not forget that miscarriage is a heightened risk for women with endo – will I be able to recover from the birth easily, or will my health struggle like it does with everything else?

What if I’m a terrible mother and my child grows up to be an incel or something?

Ok, I’m less worried about that last one.

On the flip side, I don’t know if I’m ready to lose that choice.  When I bake a cake or read a great book or see a fantastic movie, I think, “I want to share this with a child someday.  I want this to change them the way it has changed me.”  I want to share these things with a younger generation, and it’s at the moment it’s not likely I’ll get to do that in a “cool aunt” capacity.

Either way, it is a huge decision, and I’m wrestling massively.  I think I have decided, but I keep flip-flopping.  Whatever I end up doing, though, I resent the adenomyosis for forcing me to make this decision before I am ready.  I resent the endometriosis for stealing away my chance of doing all the things I wanted to do as a young married couple before I had children.  I resent that being a chronically ill woman is littered with such awfully difficult choices.

Have any of my readers faced this decision?  Were you ambivalent about children?  What were your thought processes?  I am so keen to hear from anyone in a similar situation.

The Lessons of 2018

Published on by Bubbles in the Brain1 Comment

TW: depression, ableism, general unhappy stuff

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

 

1)  The world forgets the sick and disabled

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

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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

Published on by Bubbles in the Brain3 Comments

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.

Various Announcements

Published on by Bubbles in the Brain1 Comment

Look at all these cheerful people announcing things!  Stock pictures are great.

I want to announce a couple of exciting changes.

  1. I have added some menus and an “about” page.  If you go to the home page and take a peek at the right-hand side, you should see my posts about endometriosis collated in one menu, and my posts for tips and tricks on living with endo collated just beneath that.  I’m hoping this will make these posts more accessible, particularly given that they are the primary point of this blog.
  2. I’m dropping my frequency of posting from daily to every second day for now.  I think I’ve built up a decent amount of content now that should keep new readers entertained for a while.  As I’m getting better at the moment thanks to being in false menopause (post on that coming soon!) I’m back at work and have less time to write posts, so generating seven over the weekend for the coming week is a bit of a challenge.  I haven’t lost my drive to maintain this blog, but I am now much more lacking in time than when I was home sick three-five days each week.  Reducing my posts to every other day will let me produce better quality content as I’ll have more time and energy to devote to it, and stop me having to do those apology posts that I’ve been doing recently (sorry!).
  3. I’m travelling to the UK next month, so that may also affect my ability to post.  I will try and prepare a bunch to release whilst I’m away but I may not have as many as I’d like, and I want to spend my time in the UK with my family, so for three weeks this blog will take a backseat.  It will be up and running again as normal in November, though!  Expect some posts on travelling with endometriosis and travelling generally, including packing lists and must-see places in the UK.
  4. Finally and most excitingly, my surgery has been confirmed!  Dr Edi-Osagie will start with an exploratory operation, and if he confirms the presence of endometriosis he will perform a total pelvic peritoneal excision.  I’m terrified but full of hope.  I’ll do a more fulsome post on this as well in the near future.

So, these are the exciting things going on in my life right now.  Big changes, hopefully for the better.

I just want to finish on a quote I heard in the current audiobook I’m listening to (I use Audible and I cannot recommend it enough), which is Oathbringer by Brandon Sanderson.  It says this:

Accept the pain, but do not accept that it is your fault.

That really resonated with me, for fairly obvious reasons, and I keep coming back to it.  Accepting the pain that is part of our lives is so important, and feeling guilty for having it is an incredibly important trap to fall into, but it is something we need to fight against.  This quote just reminds me of that.

Are there any things you would like to see posts on in the coming months?  I’m still working on a Christmas giveaway or competition as well, so I’d love to hear your thoughts on a good prize and whether a giveaway or competition is preferable.  Let me know in the comments!