The Perfect Disabled Person

Hi everyone.  Sorry that it’s been so long since my last post – particularly unfortunate given that it is Endometriosis Awareness Month.  I was struck down with a bout of gastro and writing was the last thing on my mind.

As part of Endometriosis Awareness Month, Buzzfeed has been running a series of articles raising awareness about endo.  One of them is “Things You Shouldn’t Say to People with Endometriosis.”  I’ve written on this before here, here and here, and given some suggestions about things to say instead here, so it’s always interesting to hear things other people are sick of hearing.

The Buzzfeed article, written by Lara Parker, is fairly tongue-in-cheek.  She gives some brief explanations about why you shouldn’t say these things, but she also writes how she would like to respond when these questions are asked.  It made me snicker.

Unfortunately, the responses on Buzzfeed’s facebook page and on the article were deeply disappointing, mostly from people who obviously do not get it and can’t be bothered to try, and even some from people with endo who apparently forget that we are allowed to be a little bit upset and annoyed about this horrific disease and people being arses about it.

People of colour in majority white societies have often noted the pressure to be the “perfect minority” – the model for all their race.  If they do a wrong thing, it just goes to show that “all people of X race are like that”.  I think there is a similar-but-different pressure on disabled and chronically ill people.  Whilst we aren’t required to represent the whole demographic the way people of colour are, there is a pressure to be this “ideal” disabled person.

What does the ideal look like?  Basically, inspiration porn.  Preferably, they were able-bodied and had a promising future, but they lost something – usually their ability to walk – in a horrific accident.  Doctors said they would never move again, but they regained use of their arms and took up Olympic paragliding, spouting mantras such as “the only disability is a bad attitude!”  They overcome every obstacle that a world built for able-bodied people creates for them rather than asking that maybe the world undergo some reasonable adjustments.  They are an inspiration to disabled people everywhere!  They teach lessons about the power of positivity!

They are a stick used to beat disabled people who are tired, cranky, depressed, or whom able-bodied people don’t think are trying hard enough.  “If they can do it, why can’t you?” And if a disabled person suggests that perhaps that isn’t actually the best attitude, we are rude, unhelpful, and bitter.

Here’s some examples of comments on the article:

So you don’t want us to try and relate to you, or feel sorry for you? After what you wish we didn’t say, maybe add something saying what we SHOULD say. This is such a negative post.

 

This is a tad aggressive. I understand that it is frustrating to live with a chronic illness that has no cure and limited treatment options, but I think people suggesting options to help your pain is clearly out of trying to help ease your pain and out of caring. If you’re going to get that upset every time someone tries to offer you a helpful suggestion (even if it might not be helping) than you must have a terrible attitude. Especially regarding the questions of “can you have children with this condition?” I think it’s safe to say a person asking you this is probably trying to understand your condition and the implications of it. Sounds like the person who put this article together needs a therapist.

 

What a bitter way to look at the wolrd, I think a lot of times its our instinct to try and help people we care for. So even if I’m sure it’s been suggested to you, you have to look at it from positive angle, this person is suggesting something because they care about you and wants to help you. I have endo and while I know our journey is different, I can relate to all the suggestions but every time someone gives me one, as silly as it is, I can see in their eyes that all they want is to figure out how to make you feel better. How can you be so upset about that.

 

A tad aggressive…. I have a few unseen conditions too and if people offer some advice I simply say thank you or thanks I’ll look into it. No more no less….”

 

Here’s a thought…. If you don’t want anyone to comment on your illness / problem, don’t bring it up to begin with. If you just keep it to yourself, like most people do with their health problems, others won’t have any reason to comment or suggest anything. Rather than get on here and bitch that people are suggesting things, just shut up all the way around and it will solve all your problems before they even have a chance to start.”

 

Here’s what I think able-bodied people who say this kind of thing don’t get: most of it.  Possibly all of it.  But specifically:

  • That relating to us or feeling sorry for us is all well and good, but it doesn’t come in the form of suggesting we try yet another fad diet, or that we should be fine if we have this treatment because it worked for their cousin’s girlfriend.
  • That sometimes we get sick of people making unsolicited suggestions and rude comments, or asking really personal questions, and we are allowed to be frustrated that people actually seem to think that this is ok.
  • That this is not the same as aggression.  Passive-aggression, perhaps, but like most people, we really have to be pushed to breaking point before we morph into some sort of were-beast and start tearing faces off.
  • That the questions and comments stack up.  We might be hurt or frustrated by a single question that, however well-intentioned, is invasive, rude or dismissive, but that when you get them all the time, it is hard to stay calm and patient.
  • That intention is not the same as impact.  Someone could care deeply about me and my pain, but if they are asking a string of really personal questions or insisting that I would be fine if I tried the keto diet, their intention doesn’t matter as much as the impact it is having.  And surely, if they care, they would care about my feeling on the subject too?
  • That we educate people about this all the time.  We are generally happy to explain what endo is, if it is the right time and place.  That doesn’t mean that we don’t get sick of having to do it again and again and again, or when someone starts demanding answers that a quick google search would provide when we just want to get on with our days.
  • That we don’t tend to bring our problems up out of context, and when we do, we are either looking for a specific solution, should as flexible work hours, or explaining why we can’t do a thing.  That doesn’t mean we want to be told to have a baby or a hysterectomy.  Also, we can’t shut up and take opportunities to educate people.
  • That endometriosis is utterly exhausting, physically and emotionally, and we cannot always be happy, positive, and polite.  There are some days I can’t even speak to people without literally feeling the conversation draining me of energy, however much I love the other person and enjoy the topic of conversation.

What I’d really ask people to do this March is to listen to us.  Listen when we say that things hurt or upset us, and listen to why.  Even if you don’t get it, please respect it, and understand that it’s not an attack on your freedoms or your character.  We’re just asking for a little bit of shush, or perhaps for you to say, “oh, that sounds awful,” and give us a hug or a nice cup of tea.

And don’t tell us to be more positive.

February Gratitude

CW: pregnancy, body image

As I mentioned in January, one post I really want to try and commit to each month this year is a list of things I am grateful for.  It is actually quite challenging.  Although I’m generally a positive person who lives life at a level I would call “content”, and only occasionally swing into bouts of terror and sadness, this is quite a challenge for me, particularly since I want to put my animals and my family on every list and I have set myself the challenge to be grateful for new things every month.  Anything that stretches my ability to be grateful, however, I suspect is a good challenge.  Practice, after all, makes perfect.

1)  fLash Lash

This may sound terribly superficial, but since we’ve already established that I am I’m going to plough right ahead anyway.  My friend put me on to this lash serum.  I was really sceptical at first because the idea of a lash serum just sounds really gimmicky to me.  However, I’ve been using it for about a month now, and it works!  My lashes are actually longer.  I tried to take a before and after, but unfortunately my before is really blurry so it’s extremely hard to see any sort of difference.  The difference isn’t huge – certainly nothing as dramatic as the pictures on the website –  but it is noticeable, and I love it.  I will definitely be repurchasing this one.  (And no, sadly this is not a sponsored post and I do not get any money from spruiking the wonders of fLash Lash).

2) Maternity jeans

I’m not pregnant, but I am now a sworn devotee of maternity jeans.  I’ve never actually tried them before, although I have written about them as I know other endo-warriors who wear them.  Now I’m not sure I ever want to wear anything else.  I tried on this pair yesterday and was blown away.

A1308027
Image description: a pair of legs wearing black skinny jeans with a rip on each knee standing in a Scandi-style room with a white crib.  There is a wooden window seat next to the legs with a cream cushion and a grey throw.

They look like jeans, but they feel like leggings and they are so soft and comfy on the belly.  They are actually quite flattering, and I say this as someone who has always felt very self-conscious about the width of her hips in leggings and skinny jeans.  With a pair of biker boots they are positively badass.  Badass comfort – what more could you possibly want?  You could fight crime and look cool in these things.

3)  New friends

Whilst I still miss my friends from my old workplace, particularly my fLash Lash friend and another lovely woman who left a few months before I did, I am delighted to have found such incredible people at my new job.  They are mostly women, and they are all wonderful – friendly, helpful, chatty, hardworking, collaborative, and always up for a jaunt to the local coffee shop or grocer.  They’ve made me feel so at home.  Great colleagues make for a great job even when the work isn’t tops, and I love the work too, so it’s great all round.

4)  My employer’s attitude to disability

Although I have thankfully not had to put it to the test in a “I’ve only worked three hours in the last month” sort of way, my employer so far seems really pro-disability and supportive of disabled staff.  We get personalised desk assessments (everyone, disabled or otherwise) and if you have a pre-existing condition they get in a physio or other specialist to do it.  Mine has resulted in a better chair and an extra plug so I can have my electric heat pack plugged in at my desk.  This means no more awkward trips to and from the kitchen every forty minutes juggling a piping hot wheat bag that will be painfully hot at first and then cool down annoyingly quickly.  This hugely increases my ability to stay at my desk working.  It makes such a difference.

5)  Cool weather

I don’t do terribly well in the heat.  I am too white for days much above 30 degrees.  I like a gentle cool breeze on a warm 27-28 degree day.  English summers are largely perfect, in my eyes.  Summers here are dry and baking and seem to parch the moisture right out of you, except when it is stormy in which case they are hot and sweaty but still leave you really thirsty and dry on the inside.  Thankfully, February has largely seen a move to more gentle temperatures.  As I write this, we’re expecting a top of 24.  Perfect.  Love it.  I know I’ll be having the opposite feeling come winter, but right now I’m happy as the proverbial clam.

6)  Nice hair

It’s not always nice, but yesterday I got a haircut and now it’s just spiffy.  It’s great while it lasts and it makes me happy.  It smells nice, too.

7)  Adventurous tomatoes

I didn’t plant any tomatoes this year.  My plants just ran riot last year and I had more tomatoes than I could comprehend, so I thought I’d give them a miss this year.  Despite this, I have four or five tomato plants sprouting in the garden, including one that is growing in the cracks of the pavement again.  They are plucky and determined plants, and I’m actually pretty excited because I do like tomatoes.  I also have a single brave chili growing in my Vegepod.  I’d forgotten I even planted chillis (did I plant chillis?  Is it even a chilli?  We’ll find out when I cut it open, I suppose).

IMG_3818
Image description: my hand, holding six slightly oval little tomatoes.  One has a green stem on it.  There is dirt on some of them and on my fingers because they are fresh from the garden.

8)  Valentine’s Day

Like most people, I’m not a huge fan of the commercialism that inevitably springs up around days like this.  However, I am a fan of the idea of love persevering, and a brave man helping couples marry in secret.  I also like the reminder it brings to have a special date with my husband and take an evening to really cherish our relationship.  We’ve endured a lot together and it’s really important for us to make happy memories too.

9)  The Done app

As you may know from my previous mention of my dairies, I’ve switched from a bullet journal to a more traditional (but also very fullsome) planner this year.  One other thing I’ve done is make my habit tracker digital.  There’s an app called Done which allows you to track 5 habits for free, or as many as you like for $6.99.  I paid for the full suite.  I’m sticking to tracking my habits far more effectively when it’s on my phone, and it is actually easier to view trends there.

Image result for done app
Image description: text that reads, “Track any goal or Habit.  Track an activity multiple times a day, week, month or year.”  Beneath that is a grey silhouette of a phone.  On the screen it says, “Done”.  Beneath that are five bars.  A partially-filled yellow one says “Wake Up Early: 3.  This week, 03/04 mornings”.  A partially filled red one says “Workout: 5.  This month: 08/10 sessions.”  A partially-filled bright blue one says “Drink Water: 3.  Today: 04/08 glasses.”  A partially-filled lilac one says, “Meditation: 3.  Weekly: 02/03 sessions.”  A fully-filled blue one says, “Less coffee: 5.  Today: 00/02 cups max.”

When you have reached your goal for the day/week/month/whatever, the bar fully fills up.  The number on the right refers to your streak of how many days/weeks/months in a row you’ve managed the habit.  It’s quite motivating and really quick to do.

10) Finally getting over this cold (I hope)

This darn cold is dragging on and on and on, as they always do when you have an immune system as useful as the male nipple.  However, I think it might finally be going away.  I can feel something almost like energy waving a tentative hand in my direction, and my headache is only dizzying instead of catastrophic.  Progress!

 

 

How Christians Can Respond to the Chronically Ill

One of my favourite stories in the Bible, probably for obvious reasons, is when the woman with chronic menstrual issues pushes through a throng of people surrounding Jesus, saying to herself, “if I can just touch the hem of his cloak, I’ll be healed.” She was desperate for healing, which resonates with me deeply. She was also incredibly brave – as she couldn’t stop menstruating, she was ritually unclean and was forbidden from mingling with society, let alone touching a rabbi. So she was also socially isolated and, I suspect, depressed and taking quite the hit to her self-esteem. Uniquely (to my admittedly less-than-professional biblical knowledge), she doesn’t ask Jesus for healing. She touches him, filled with unshakeable faith, and his power flows out of him and heals her. Her courage and faith heal her. It’s a story that thrills and inspires me, because I can so strongly imagine what she felt, and I can aspire to have her conviction.

What I mean to say with my long-winded introduction is that the Bible, and Jesus (who commends the woman) have a place for the chronically ill and the beaten down. Unfortunately, sometimes the church doesn’t. It almost always comes from a place of goodwill, but it still hurts when they get it wrong.  I’ve been mostly lucky in my church – things that have hurt me have been things said by well-meaning people in general conversation, rather than directed to me, but I draw from the experience of many people in writing this, and they have all been wounded by it. That’s why I want to talk about how churches and Christians in general can be more welcoming to the chronically ill.  Below I offer three don’ts and three dos as to how Christians can achieve that goal.

1) Don’t resort to platitudes

This is a good tip for anyone when responding to the chronically ill (or anyone enduring any sort of suffering, from anxiety to grief), but I think Christians are the worst at it because we have an entire book of handy phrases neatly packaged up in the form of the Bible.  Many of those verses are great, but they all have a time and a context, and usually they aren’t appropriate to say to us.  Here’s some examples that I don’t think are helpful:-

  • Verses about God’s ways being higher than our ways so we can’t know the meaning of things;
  • Verses about there being a time and a season;
  • Verses about God’s healing;
  • Verses about how suffering is to teach lessons.

There are probably others, but those are the main culprits.  The reasons that these aren’t helpful is that we know God’s ways are higher than our ways.  Telling us that is not comforting.  I adore the poetry of Ecclesiastes,  but telling us that there is a time and a season is not helpful to the chronically ill because our whole lives are going to be the time and the season.  We know the verses about God’s healing, but the healing itself is not being shared with us right now.  Finally, the idea that we might learn something from our intense pain does nothing to counteract the, you know, intense pain.  It would have to be a truly mind-blowing lesson to be anything close to worth it.

2) Don’t tell us that we are Christianing wrong 

Some Christians take the view that either:-

  • We sick because we sinned; or
  • We aren’t getting better because we aren’t praying hard enough.

Wrong.  Wrong and unbiblical.  Just as we aren’t matyrs who suffer to learn great spiritual truth, we’re also no worse than anyone else.  We all sin.  We don’t all have chronic illnesses.  Job was one of the most righteous men in the bible, and he lost his home, his family, his wealth, his friends, and his health in two devastating attacks.  In John 9, Jesus specifically said that the man born blind was not blind because of any sin he or his family had committed.  Bad things happen to good people and vice versa.  We are not cursed or unclean or any more sinful than you.  We’re just sick.

Likewise, God doesn’t necessarily hand out a free healing to those who get enough stamps on their loyalty prayer card.  Paul writes in 2 Corinthians 12 that he begged the Lord to heal “the thorn in his flesh,” and the Lord refused.  Is anyone honestly going to suggest it was because Paul, possibly the most influential Christian in history, lacked faith?  Sometimes – often – God doesn’t heal.  I don’t know why, but I do know that it isn’t the fault of the person begging for healing.

Saying these kind of things isn’t just unhelpful and inaccurate, it’s damaging.  If people believe you when you say this, they are going to feel inadequate, rejected by the church and by God, and you will deal a horrible blow to their faith.  Stop it.

3) Don’t publicly pray for us unless we request it, or force us into group prayer sessions

It is nice to be remembered in people’s prayers, but please don’t pray for us in the congregational prayer without at least checking with us that it’s ok.  Some people aren’t “out” about their chronic illness.  Some people just don’t want to be the centre of attention, or have unnecessary attention drawn to their illness.  It can lead to embarrassing and intrusive questions at the end of the service that we may not want to field.

Likewise, being drawn into a group prayer session, or even a one-on-one prayer for healing can be embarrassing.  It creates this expectation of healing, and if it doesn’t work, you run the risk of people doing something from point 2.  If the sick person is fine with it, go for it, but please make sure that they are actually fine with it and don’t feel pressured into it.  If they say no, or seem uneasy, please drop it and ask if you can just pray for them on your own.

4) Do make church accessible (not just for the chronically ill)

Have an ambulant toilet (near the other toilets, not down a corridor, through an office and behind a locked door that you need an elder to open).  Have spaces for wheelchairs.  Have nice cushy seats for people with pain.  Have braille on the toilet door.  See if a church member speaks Auslan and is willing to interpret, or project the points the pastor is making onto a screen.  Make your church camps, getaways, meetups and breakfasts at times and locations that sick people can attend.

For me, the biggest thing is good seats.  I cannot sit on the usual school chairs and benches most churches provide without a lot of pain after a very short time.  Having some comfier chairs at the back of the church – not out in the foyer so I have to watch through the doors! – can make the difference between me being able to go to church and not.

5) Do offer practical assistance

It’s all well and good to pray for someone.  Indeed, God commands it.  He also praises people engaging in practical acts of service.  Perhaps you could cook them a couple of freezer meals, or ask if they need any help around the house, or check if they need a lift to and from church on Sundays.  Those are all small things that could make a huge difference.  Just don’t make a big deal out of it – treat your sick fellows like everyone else in the church.  We should all be serving each other in whatever way we can.

6) Do represent the sick and disabled

Whether by having sick/disabled people on the ministry team or praising them for their courage and strength in sermons, represent us in the church.  Don’t glorify us or turn us into inspiration porn, but preach on that woman with the menstruation problems.  Preach on the lepers and the blind.  Show that Jesus loved the sick and disabled too, and show that we are people, not just parables.  Keep us human, and keep us involved.

 

That’s my list of quick tips for the inclusive Christian.  Do you agree with these points?  What do you wish your church would do to make it a more inclusive space?  What good things is it already doing?  Do any of my readers from other religions or groups have similar experiences?  Let me know in the comments.

A Collation of Hope

Early in January I talked about a number of quotes about hope that I’d been writing down.  It’s a practice I’ve continued throughout January and intend to keep up all year with various themes that seem applicable and relevant to my life.  Next month will be courage.

This isn’t really a proper post so much as a list, but I thought I’d put all 31 of my quotes for the month here in case anyone needed some inspiration.  For completeness sake I will also include the quotes from my last post.  I won’t explain my thoughts on them all this time: this is just for reference in case you need a quick little soundbite of hope.

All of these quotes represent, to me, an important aspect of hope.  Hope warms, it empowers, it pushes you on.  It is really hard to do.  It can spark revolutions or just make a hard day a little easier.  It is something we have the power to share.

  1. “I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re doing something.” – Neil Gaiman
  2. “Hope smiles from the threshold of the year to come, whispering, “it will be better.”” – Alfred, Lord Tennyson
  3. ““Hope” is the thing with feathers –
    That perches in the soul –
    And sings the tune without the words –
    And never stops – at all –

    And sweetest – in the Gale – is heard –
    And sore must be the storm –
    That could abash the little Bird
    That kept so many warm –

    I’ve heard it in the chillest land –
    And on the strangest Sea –
    Yet – never – in Extremity,
    It asked a crumb – of me.”
    – Emily Dickinson

  4. “Hope is being able to see that there is light despite all of the darkness.”  – Desmond Tutu

  5. “We must accept finite disappointment, but never lose infinite hope.”  – Martin Luther King Jr.

  6. “There never was a night or a problem that could defeat sunrise or hope.”  – Bernard Williams
  7. “Though hope is frail, it’s hard to kill.”  – When You Believe, The Prince of Egypt
  8. “Optimism is the faith that leads to achievement.  Nothing can be done without hope and confidence.”  – Helen Keller
  9. “Fairytales are more than true – not because they tell us dragons exist, but because they tell tell us dragons can be defeated.”  – Neil Gaiman, misquoting C K Chesterton
  10. “I believe that imagination is stronger than knowledge.  That myth is more potent than history.   That dreams are more powerful than facts.  That hope always triumphs over experience.  That laughter is the only cure for grief.  And I believe that love is stronger than death.” – Robert Fulghum
  11. “While there is life, there is hope.”  – Marcus Tullius Cicero
  12. “I don’t think of all the misery, but of the beauty that still remains.”  – Anne Frank
  13. “Everything that is done in this world is done by hope.” – Martin Luther
  14. “We must free ourselves of the hope that the seas will ever rest.  We must learn to sail in high winds.” – Aristotle Onassis
  15. “There is nothing like a dream to create the future.” – Victor Hugo
  16. “Carve a tunnel of hope through the dark mountain of disappointment.”  – Martin Luther King Jr.
  17. “Hope means hoping when things are hopeless, or it is no virtue at all…As long as matters are really hopeful, hope is mere flattery or platitude; it is only when everything is hopeless that hope begins to be a strength.”  – C K Chesterton
  18. “Far away there in the sunshine are my highest aspirations.  I may not reach them, but I can look up and see their beauty, believe in them, and try to follow them.” – Louisa May Alcott
  19. “May your choices reflect your hopes, not your fears.” – Nelson Mandela
  20. “I dwell in possibility.” – Emily Dickinson
  21. “When I’m stuck with a day that’s grey and lonely, I just stick out my chin and grin and say: the sun’ll come out tomorrow, so you’ve got to hang on til tomorrow, come what may!  Tomorrow, tomorrow, I love ya, tomorrow, you’re always a day away.”  – Annie
  22. “Hope is passion for what is possible.” – Soren Kierkegaard
  23. “If you lose hope, somehow you lose the vitality that keeps moving, you lose the courage to be, that quality that helps you go on in spite of it all.  And so today, I still have a dream.” – Martin Luther King Jr.
  24. “This new day is too dear, with its hopes and invitations, to waste a moment on the yesterdays.” – Ralph Waldo Emerson
  25. “A leader is a dealer in hope.” – Napoleon Bonaparte
  26. “Hope is like the sun, which, as we journey towards it, casts the shadow of our burden behind us.” – Samuel Smiles
  27. “Learn from yesterday, live for today, hope for tomorrow.  The important thing is not to stop questioning.” – Albert Einstein
  28. “You are not here merely to make a living.  You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement.  You are here to enrich the world, and you impoverish yourself if you forget the errand.” – Woodrow Wilson
  29. “Where there’s tea there’s hope.” – Arthur Wing Pinero
  30. “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other form a million different centres of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.” – Robert Kennedy
  31. “You may not always have a comfortable life and you will not always be able to solve all the world’s problems at once, but don’t ever underestimate the importance you can have, because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama

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?

Living with Incontinence

CW: Pregnancy

I know my blog has a far-reaching reputation as a bastion of glamour, elegance, and good taste, so I thought I should bolster that further with yet another fun post on bodily functions.

Despite attempts by brands like Tena to normalise incontinence, it remains a deeply embarrassing thing to suffer from. I think society associates it with either children, and therefore childishness, or age, and therefore senility. When people do give serious thought to it, the discussion tends to focus almost entirely on people who have recently given birth and suffer incontinence as a result. In reality, however, people of all ages and biological makeup suffer incontinence.

Broadly speaking, there are two types: stress and urge. Stress incontinence is where it happens as a result of some sort of trigger to the bladder – sneezing, coughing, laughing, running, lifting something etc. Urge incontinence is where you can’t control your bladder’s urges and it just goes, regardless of the inconvenience to you. I speak from the perspective of someone who has suffered both since I was around five years old. I’ve lost bladder control from almost every conceivable action. I wet the bed relatively regularly all through childhood, and with gradually decreasing regularity into early adulthood. I lost control and wet myself at school, at church, on excursions, at the beach, in shopping centres – anywhere I went there was a chance it could happen.

Now I’m in my late twenties and the situation has improved dramatically, without any sort of useful medical intervention. I had a multitude of tests as a child, none of which resulted in anything other than a diagnosis of urinary incontinence and some horrible-tasting and useless medications. It isn’t related to my endo, although I do have endo on the urethra, and many people with endo do report incontinence as a symptom.

What I want to share with you are some useful tips I’ve learnt over twenty years of dealing with this pesky condition.

1) Pads and protection

This may seem super basic, but honestly, just giving up and wearing pads or undies designed with built-in protection (such as Icon, my preferred brand – good for light leakage only, though!) made such a difference. I used to be a Tena devotee and I think they are probably still the better brand for really big problems. However, as things have improved for me I’ve been able to move to the thinner, cheaper Poise. Importantly, these items are all able to deal with a period as well, but have better wicking and odour-disguising properties.

For those with issues at night, Tena and Poise both offer thicker pads or nappy-type options, but I’ve never found those terribly comfortable. A better option for me was a washable waterproof pad by Slumberdry that I could slip into bed and would protect my sheets if things went wrong. When you’re half asleep and exhausted, you don’t want to have to deal with a full bed change – these pads are great because you just whip out the wet one, chuck a clean one on and go back to sleep. Whilst I no longer used one, these were amazingly helpful when my overnight issues were at their worst.  They are marketed for children (once again, a false impression about incontinence) but there is no reason adults can’t use them.  The only downside for couples is you might find they protrude onto your partner’s side of the bed. These are also a great, discreet-ish option for travel that fold easily into a suitcase and save you the embarrassment of having an issue on hotel bedding.

2) Keeping supplies on hand

Throughout all my school years, my mum made me take a little bag with spare undies and a plastic bag for the dirty knickers in it to school just in case I had an accident. It was deeply embarrassing but also extremely necessary. It’s not a bad idea as an adult, either. There are a myriad of situations in which spare underpants are useful – maybe it was a hot day and you had to run to catch the work bus and by the time you get in you are just so sweaty, or a sister gets her period unexpectedly, or you spill coffee all over your trousers, or you get hospitalised and there’s no one in town to bring you an overnight bag. Clean undies are just really useful things to have. I carry a little bag of Poise, too, just in case.

3) Make knowing the location of the loos a priority

If you are going somewhere for the first time, take note of public loos. On long road trips, mark of petrol stations for regular, pre-emptive bladder strikes. Walking through a shopping centre, note any and all signs that point to the water closet. Preparation Prevents Piddling all over yourself, as the saying goes.

4) Don’t wear jumpsuits, playsuits or rompers

Just don’t. They are cute and all, but getting caught short by your own clothing isn’t cool. Been there and very much done that.

5) Tell people you can trust

It is embarrassing as all heck to tell someone you have poor bladder control, but having a stalwart sidekick who will watch your back, hustle you to the toilet, or sacrifice a jumper to tie around your waist if things don’t go according to plan is such a valuable and heart-warming thing. They’ll be the one to raise the issue of toilet stops on a road trip to hide the fact that it’s always you who needs to pee, double check that you packed enough underwear, and translate that panicked look you get when you laugh too hard and feel something let go.

These are all good tips for parents whose children suffer incontinence, too. Keep them well supplied and give them the tools they need to be able to handle a quick bed change at night – you’ll get more sleep that way too. Check toilet locations, and give them easy-to-escape from clothing. With their permission, tell their teachers so they don’t get refused permission to go to the toilet at school, or get detention for being late to class because they had to pee again. Most of all, build their confidence. Don’t let them feel dirty, defective or unworthy, because other children will do that plenty if their secret comes out.

Anyone else have any tips or tricks? What have your experiences with incontinence been?

Dear Ella: What I Wish You Knew

It was June 2016 that I was first diagnosed with endometriosis. Since then I have learned a lot of things that I desperately wish I could go back and tell that young woman. If I could, these are some of the things I’d really want her to know. Some of them are personal to me, but most of them have fairly general applicability.

1) Don’t go to that doctor

I had no idea back then that there were different types of gynaecological specialities. I thought it was all much of a muchness. I was originally diagnosed and operated on by a fertility specialist. Whilst she knew about endometriosis, as any gynaecologist should, endometriosis was not her primary area. I don’t know if my increase in suffering after that operation was due to a lack of knowledge and skill on her part, her preference for surgery rather than attempting to manage the condition with medication first, or simply something that would have happened regardless of who I saw. Whichever, I wish I’d seen someone else, because when the problems arose, she was stumped and essentially told me she had no idea how to help me. Which leads me to…

2) Don’t have the surgery

I honestly thought I’d tried every medication I could to reduce my period pain and that surgery was the only option open to me now (an illusion that the abovementioned doctor did nothing to dispel). Whilst surgery is incredibly useful for many people, it was devastating for me and I wish I had been given other alternatives to at least try.

3) Find a doctor that you can trust

I don’t know if I could have done anything about this sooner than I did, because it took a while for me to realise each medical relationship wasn’t working, but I wish I had been with Dr Edi-Osagie from the start. I have yet to present a problem that he hasn’t been willing to try and beat or said something he hasn’t listened to. Previous doctors have either been stumped by my issues or decided that they’ve given me sufficient quality of life and I just need to be satisfied with that. I’m not, and neither is Dr Edi-Osagie. I trust him, and that’s a big deal.

4) Trust yourself more

Endometriosis is one of those diseases that plays tricks on your mind. There’s few visible symptoms, and people around you question and downplay your pain. This makes it very easy to doubt what you are feeling and convince yourself that you are wrong about the severity of your pain and the appropriateness of your reaction to it. The gaslighting effect is horrible and I think it causes delays in getting effective treatment. If I had had more trust in myself, I may not have had a better medical outcome, but I would have been a lot happier.

5) Be prepared for physical changes

I’ve been really struggling with body image (again) lately. Being in menopause has me putting on weight even though I’m exercising regularly and eating well (and yes, my caloric output exceeds my input by a decent margin). Between that and the swelling, I feel a bit like a pig, only without their body confidence and contentment. I wish I could brace my old self for those changes and revel in the body I had while I had it. Not just for looks, too – I’d take it for more runs just to feel the power in my legs, and lift more weights to experience that satisfying burn in my arms.

6) Do your research in the right places

Scouring WebMD for the clinical definition of endo doesn’t prepare you for what it is actually like. Even the list of symptoms is not exhaustive, and some website actually provide complete misinformation (the most common being that pregnancy or hysterectomy will cure you). The best source of information I have ever found is my local endo support group. I have learned so much from them and I should have joined and engaged the second I was diagnosed, checked if I was seeing the right doctor and being given accurate advice, and built connections with women who could help me.

7) Do better record-keeping

This is still something I could improve upon. Record-keeping on both a micro and macro level is really useful. By macro I mean having all your medical records collated and a timeline of major events (diagnoses, procedures, dates of starting and stopping medication). This makes it super easy for you and your doctors to review your history at a glance. By micro, I mean tracking your food, sleep, stress, exercise, mood and pain. This helps alert you to trends and triggers, which teaches you how to help yourself better by avoiding stuff that hurts and engaging in stuff that helps.

8) Understand that your life will change

The biggest thing I was unprepared for was how much I wouldn’t be able to do. I took it for granted that I could sit at a desk for hours at a time, walk 5km and then eat a garlicky meal with onions and beans. I took it for granted that I could shower at the end of a long day. Never did I think I’d become an occasional wheelchair user. I thought I’d be diagnosed, cured, and that was that. In fact…

9) Realise that a diagnosis is just the beginning

If you get a diagnosis and if that diagnosis is confirmed, that is not the beginning of the end. It is not as simple, sadly, as problem then solution. It is problem then several attempts at solutions and then many sub-problems, all requiring different solutions, some of which are in conflict with each other. It is not a simple journey, and while a diagnosis offers some hope, it is not a fait accompli from thereon out. I want to go back and seriously manage 25-year-old me’s expectations.

However…

10) A diagnosis is not the end

I cried the day I was diagnosed. It is scary being told that you have a disease that you didn’t know was there, even if you expected it. It is even scarier realising that you have it for life. I cannot properly convey the enormity of that. It’s not the end, though. Life may be very, very different after a diagnosis, and it may well be harder, but you also learn a lot of things about love, true friendship, your own abilities and limits, and weird medical facts. You have to change your life in a hundred annoying ways, but it does become the new normal and you learn to live with the differences. Endo is chronic but not terminal. While there’s life, there’s hope.

What do you wish you could say to your younger, pre-diagnosis self? Would you do anything differently?

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.

blur-close-up-dark-159333
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.

alphabet-board-game-conceptual-944743.jpg
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.

air-bubbles-art-background-531643.jpg
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.

cheerful-close-up-coffee-208165.jpg
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.

chip-cube-dice-187333.jpg
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.

care-check-up-checking-1516648.jpg
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.

change-choices-choose-277615.jpg
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.

adult-art-conceptual-278312.jpg
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.

collaboration-community-cooperation-461049.jpg
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.

aerial-ancient-animal-1050310.jpg
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.