Secondary Conditions: Polycystic Ovarian Syndrome

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s polycystic ovarian syndrome, aka PCOS.

What is PCOS? Well, it’s a condition whereby the ovaries become enlarged and prone to cysts. Tiny little follicles grow on the ovaries, containing partially formed eggs that rarely grow to maturity or become fertile. The body produces too much insulin and androgen (a male hormone).

PCOS can cause weight gain, excessive hair growth on the body, hair loss on the scalp, depression, sleep apnea, acne, pain, infertility , increased likelihood of diabetes, and irregular periods.  It’s a nasty disease and the side effects (wrongly) carry a lot of social stigma.

Like adeno and endo, no one is really 100% sure what causes PCOS. It does appear to run in families and is more likely to effect women who are overweight, but neither of these is a guarantee of getting it, nor are slender people with no family history automatically exempt. What we do know is estimates suggest it could effect as many as 20% of people with ovaries of reproductive age, and often goes undiagnosed.

As with any disease where weight increase is both a symptom and increases the risk of either contracting the disease or exacerbating the symptoms, doctors will urge sufferers to make healthy lifestyle choices, particularly around diet and exercise. Not for a moment will I pretend this is a bad idea.  Sufferers can achieve significant relief from symptoms with only a small amount of weight loss (which sounds a lot easier than it is when your own body is fighting you every step of the way).  However, I do urge people not to allow doctors to attribute everything to their weight and offer no other assistance. Hormonal treatments can also be an important part of dealing with PCOS, both to block and to raise different hormones.

It’s also a good idea to have a mental health professional as part of your treating team. Dealing with difficult symptoms that our society wrongly but consistently perceives as “gross” or symbolic of laziness is hard enough. Dealing with a disease that also can cause depression is an extra battle you shouldn’t have to fight alone.

Before you can start to be effectively treated, however, you need to be diagnosed. There is no 100% guaranteed method of diagnosis. Scans may show cysts on your ovaries, but you can have ovarian cysts without having PCOS. Likewise, you can have PCOS but not have anything visible on scans. You can also have blood tests that will look at hormone levels in your blood to see what, if anything, is elevated.  Like endo, though, it can just be a lot of guesswork and diagnoses are often based purely of reported symptoms.

Endometriosis and PCOS, unfortunately, often travel in packs, and it is relatively common to have both.  However, plenty of people only deal with one or the other.  I’m lucky enough not to have had to deal with PCOS. I have friends, acquaintances and possibly family members with it, and their experiences have ranged from annoying to devastating. Have any of my readers experienced PCOS? What was your path to diagnosis?  If anyone wants to write a guest post about how PCOS really feels on a day to day basis, I’d love to publish it.

Secondary Conditions: Adenomyosis

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s endometriosis’ sister, adenomyosis.  

A week ago I mentioned that I have a tentative diagnosis of adenomyosis. My doctor suggested this after surgery has failed to resolve my pain and swelling despite all endometriosis having been removed and nerve pain being largely ruled out. He is the first to suggest that adenomyosis may be mucking around in my uterus.

But what is adenomyosis, aka adeno?

Well, you know how endo is when endometrium-like material grows wherever it wants instead of where it should? Adenomyosis is where it grows inside the uterine wall. Not inside the uterus, where it could be handily dug out, but inside the muscle wall itself.

Image result for adenomyosis
Image description: a diagram of a normal uterus next to a uterus with adenomyosis in the uterine wall.  Image credit: https://step2.medbullets.com/gynecology/120209/adenomyosis

I’m told it’s in the name – adeno (gland), myo (muscle) and osis (condition).

Like endo, adeno can only properly be diagnosed through surgery, although symptoms, transvaginal ultrasounds and MRIs can all offer diagnostic clues.

Symptoms are similar to those of endo – bleeding, pain, swelling. The usual culprits. It usually appears hand in hand with endo, but not always. You can have just one or the other. It can also be masked by the presence of endometriosis. The possibility of me having it wasn’t even raised by doctors until we were sure all my endo was gone and I was still having pain.

Unfortunately, the fact that it is buried inside the wall of an organ is problematic when it comes to treatment. Endo, at least, only requires the sufferer to have some holes bored in their abdomen so surgeons can get into the pelvic cavity. On the plus side, adeno can be cured by a hysterectomy, unlike endo. Other treatments include IUDs, menopause, and keyhole surgery.

Surgery itself comes in a variety of forms for adeno. As mentioned, there’s a full-blown hysterectomy (typically a last resort). Another option is uterine artery embolisation, or UAE, which blocks the two main arteries supplying blood to the uterus. With these blocked, bloodflow is significantly reduced (although not totally inhibited) and the adeno is also starved of blood. It’s not a cure and it may require repeat surgeries.

The other option is myometrium resection, or adenomyoma resection, which focuses on the removal of large clumps of adeno, known as adenomyoma. Unfortunately, it targets only those clumps and won’t get tiny bits scattered across the uterus. It can improve pain and fertility, but also carries the risk of the uterine muscle being torn or weakened, and may increase the risk of miscarriage. As usual, all our treatment options are an exercise in trade-offs.

What causes it? Well, like endo, that is something of a mystery. Current wisdom indicates that some type of trauma to the uterus, such a childbirth or surgery (such as removal of endometriosis) can encourage it. Isn’t that a fun piece of irony?

All in all, there’s a lot of similarities with endometriosis, and not in a good way. To most endometriosis sufferers, I suspect being told they also have adenomyosis will just feel like another hurdle in a very long and bumpy road rather than a new road altogether. For others, it will be devastating news – here’s another lifelong illness.  I’ll admit I shed some tears.

For me, the next step is to get my pain more under control and confirm the diagnosis so we can respond as effectively as possible. I’ll keep the blog updated on how things go.

Do any of my readers also suffer adeno, or suffer it without endo? What have your experiences been? I’d love to learn more as I’m very new to this.

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?

Movie Review: The Meg

Warning: contains lots of spoilers

It’s been quite some time since I shared a terrible movie with you, dear readers, so I’m going to do it again. This is one you really need to know about.

First, watch this trailer. Admire how the vibe goes from “sinister, terrifying ocean monster” to “giant shark comedy!”

The movie itself is a bit like that, although it isn’t quite so starkly divided down the middle.

I originally watched The Meg on the flight back from the UK in November last year. I also watched A Quiet Place and Get Out because I was trying to do a little horror/thriller fest. Boy, did I misjudge things with The Meg.

I thought it would be terrifying. I have thalassaphobia, so the thought of deep water with low visibility petrifies me, as do giant squid drifting through the gloom. Whilst I’m not scared of sharks in the same way, I do have a healthy respect for them, and the only time I met a shark in the actual ocean I did literally pee myself out of fear. I was under water, though, so I think the impact was lessened. I found Jaws to be scary. I’m also scared of prehistoric sea creatures, like the liopleurodon, and yes, the megalodon. Anyway, I thought that this movie had a really promising combination of things that terrify me. On paper, it was my worst nightmare.

Image description: liopleurodon, which kind of looks like a green slug with a crocodiles head and four flippers.  Kind of cute until you remember it’s 7 metres long and weighs more than 1.5 tonnes.  Image credit: wikipedia

In practice, not so much. The bottom of the ocean was charmingly illuminated by phosphorescent wiggly things and submarine lights, and because nothing could really come up from underneath them (my biggest fear about the ocean is things being beneath you) the first part of the movie lost some punch for me. There was also the utter implausability of the whole “how the megaladon survived” theory. The first death was touching but there was no terror. There was no submarine sneaking through the dark. It was just a “mysterious” large creature smacking into things and causing mechanical failures for a very long time, twice.

Enter the grizzled hero (Jason Statham) and the absurdly pretty Li Bingbing as his love interest and badass marine biologist. She does an impulsive thing, probably because WOMEN don’t listen to MEN and nearly gets eaten by a squid but then she learns that THE MAN is right and a tender romance blossoms, because nothing is hotter than being told you’re wrong and then being saved from a squid (notably by the megalodon, not Jason).

Image result for the meg jonas and suyin
Image description: Lee Bingbing and Jason Statham sitting on a boat in wetsuits looking serious.  Image credit: Screen Daily

There’s this whole backstory about how several years ago, Jason Statham was on a rescue mission for a submarine which had been attacked by the meg, which nobody except him believed, and he had to leave some people to die, and the doctor who certified him as mentally ill after that is now on the deep sea research station that discovers this megaladon . Other people continue to contradict or not believe Jason Statham, and the movie sort of ends up as a weird giant-shark-infested parable about why you should always believe Jason Statham, even when he’s positing that prehistoric giant sharks are attacking submarines.

Things get a little scarier in the next part of the movie when the folks move back onto the partially-submerged hi-tech deep-sea research station and the shark nearly kills Li Bingbing’s daughter (in addition to her other badassery, she’s a single mother). Then a couple of whales get eaten and I cried a little. Lots of whales die in this movie.

The crew the resolve to rid the earth of this giant shark. There are some boat-based shenanigans, then some shark-cage shenanigans where Li Bingbing shoots the shark in the mouth then nearly gets eaten, then Jason Statham swims around and snatches her from the Jaws of death (see what I did there?), the shark dies from the poison on Li BingBing’s shooty spear, and everyone celebrates.

Image result for the meg
Image description: shark cage shenanigans.  Li Bingbing in a clear Plexiglas shark cage in the jaws of the megalodon.  Image credit: Bloody Disgusting.

Then another megaladon leaps from the ocean and eats the carcass of the first one.

Not joking.

Meg 2 smashes the boat the matchwood, kills or seriously injures a number of people, including Li BingBing’s father, then swims to a Chinese holiday resort, crashes a wedding and tries to eat some tourists.

Image result for the meg
Image description: top down view of Meg 2 drifting underneath a bunch of Chinese tourists on paddleboards, her fin just breaking the water.  Image credit: Study Breaks Magazine

At this point, the billionaire who owns the station tells the scientist and crew, who for some reason include Ruby Rose smouldering her vaguely androgynous way through the complexities of deep sea computer systems, to evacuate, and that he’s told the Chinese navy and they’ll fix it. He then sneaks off in the middle of the night, having done no such thing, blows up a whale he thinks is the megalodon, and in a very slapsticky sequence gets eaten himself. The megalodon carries on sharking.

Image result for the meg ruby rose
Image description: Ruby Rose pulling a quirky yet very attractive face at someone off-screen.  Image credit: Bloody Disgusting

The team back aboard the station then twig that the billionaire is an arsehole and that they need to do this shark hunt themselves.

Thankfully, Statham and Co have another boat, two submarines and a recording of whale song, so they are able to lure Meg 2 away from the tourists and into their fiendish trap. Their fiendish trap seems to mostly involve barely functional torpedoes. When the torpedoes inevitably fail, Jason Statham drives a twisty bit of metal poking off his damaged sub through the Megalodon’s belly, jams another poison needle in its eye (because apparently a massive gut wound is only a minor inconvenience to a shark), and a bunch of ickle great whites, hammerheads and other more usual sharks spring forth and eat it. The Chinese wedding is able to continue and the dog we all thought got eaten turns out to be fine.

Let’s be totally clear about something. This is not a thriller in the same way that Jaws was. There’s no sense of suspense or terror. There’s a couple of moments where you tense up, but generally its because you can see exactly what’s about to happen. It’s not scary. It’s an action movie with some shark slapstick.  The only real suspense comes when you realise that the directors are going to let anyone but Statham and Li get eaten, so you don’t know who is on the menu next.

That being said, I thoroughly enjoyed it. The movie takes itself sooo seriously, which is really funny. The acting is actually quite good given what the cast have to work with. The CGI could be a lot worse. The shark is actually properly huge, unlike in the computer game Stranded Deep, where the megalodon is not much bigger than your standard great white. If you are willing to suspend quite a lot of disbelief and ignore all the massive holes in their sciencey theories, it is a very fun, action-packed movie with some light bits of comedy and genuinely likeable (and some hateable) characters. If you find yourself with 130 minutes of nothing to do, they would not be wasted if you filled the void with this.

Image result for stranded deep megalodon
Image description: a poorly rendered megalodon leaping from the sea.  There is a poorly rendered dead whale underneath it and a poorly rendered shipwreck behind it.  Image credit: NOGAMEdoesPC on youtube

10/10 would watch again.

Have you seen it?  What did you think?

The Lessons of 2018

TW: depression, ableism, general unhappy stuff

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

 

1)  The world forgets the sick and disabled

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

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

 

2)  Some people actively hate the sick and disabled

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

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.

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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.

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.

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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.

Setting Goals

It can be really hard to set goals when you are chronically ill.  You never know if your illness will get in the way of you achieving them, so sometimes you wonder, “why even bother?”  It’s particularly hard at this time of year with all the instagramspirational quotes that start floating around, about how the only barrier is your mindset and all that nonsense.

I still think it is worth it, though.  Without goals, the year ahead can stretch away like the road across the Hay Plains on a hot day – empty, tedious, and exhausting.

Hay Plains - Highway
Image description: A road in the Hay Plains.  A plain tarmac road in very flat, dry country stretching off under a big blue sky.  A single “kangaroo crossing” sign.  https://travelista.club/guides/australia-the-hay-plains/

I find setting goals helps add something to the landscape.  It lets me feel accomplished when I achieve them and gives me something a little closer that endless horizon to rest my eyes on.

There’s a couple of tricks to it, though, in order to prevent you from feeling hopeless or overwhelmed.  Here are mine:-

1.  Use the S.M.A.R.T. method

If it is a big goal, like that favourite of new year resolutions, losing weight, don’t just have that general concept floating around.  The SMART method says that goals should be Specific, Measurable, Attainable, Relevant and Timely.  In other words:-

  • Don’t make your goals too vague.  If you can’t say what success will look like, how will you know when you’ve achieved it?  A generally vague goal, like, “be a better person” is only going to be useful if you can qualify exactly what you mean by that.  Being specific about your steps to achieving that goal is also really useful.  For instance, one of my goals this year is to finish reading the Old Testament.  I have set out specific milestones of when exactly I want to finish each book, and how much I need to read each day to achieve that.
  • To quote lifestyle website YourCoach, “Measurable goals means that you identify exactly what it is you will see, hear and feel when you reach your goal.”  In other words, what will success look like?  Sometimes it’s really obvious – I’ll know when I’ve reached my goal of qualifying as a SCUBA diver when I get my qualification.  In others, it’s a little harder.  For example, I’ll know that I’ve reached my goal of improving my Arabic when I can read any word, even if I can’t translate it, and have a basic conversation about specific subjects.
  • Attainable is the most important one for spoonies.  If you can’t walk 1km without pain, don’t set your sights on climbing Mt Everest this year.  Kosciuszko is probably out of reach too.  I’m not saying you shouldn’t aim high, but aiming high should also be within reality.  “Improve my fitness” and setting smaller, more defined goals might be a more successful choice.  If you set the bar way too high and consistently fail to reach it, your goals will feel like a burden rather than a motivation, and you’ll feel like a failure.  That’s not the point of having goals.
  • Relevant is the “why” for your goal.  Why do you want to achieve the thing?  I want to speak Arabic because I love learning new languages and it’s a handy one to have.  I want to learn to SCUBA dive because I tried it once and it was amazing and I want to be able to do it regularly and safely.  I want to finish the Old Testament because it is important to me to know the Bible so I can better understand my own faith.  I also think goals shouldn’t be too burdensome.  If you are dragging your way through a Goodreads classic reading list because you feel like you have to in order to be a better person but you actually hate classic literature, then drop it.  Find a goal that you won’t hate.  I love classic literature but reading it won’t make you a better person, particularly if you hate every second of it.
  • The original timeliness aspect of SMART planning suggests deadlines, because motivate people into action.  That’s good if those deadlines are going to be achievable, but for spoonies I feel like timelines might be better than deadlines.  It is really hard for us to commit to things with 100% certainty, and deadlines are no different.  Timelines are more suggestions than hard and fast “it must be done by now or else”.  We need still need timeframes for motivation and to make our goals realistic, but we also need flexibility.

On that note…

2.  Be flexible

If you don’t achieve your goal within the specified timeframe, it is not the end of the world (unless your goal is to save the world and there’s some sort of ticking clock I don’t know about, in which case, please don’t be flexible).  I’ve set what I think are realistic goals.  Ideally, I’d like to qualify as a diver by early March, but I may have yet more unforeseen medical expenses or bouts of unpaid sick leave which mean I simply can’t do it financially.  If it can’t happen then, that’s fine.  I can learn to be a mermaid some other time.  Our lives are made up of constant compromises, and sometimes even our big goals have to take a back seat.  That’s totally ok, and you shouldn’t feel like a failure or berate yourself if that happens.  Timeframes may change.  An entire goal may become impossible.  Chances are, it’s not your fault.

That being said…

3.  Hold yourself accountable

This is one of those hard ones where you have to strike a balance between not letting your illness become an excuse not to do something you actually could do, and forgiving yourself when it prevents you from doing something you wanted to.  If you are having a good day, use it (but don’t overdo it).  If you are having a bad day, do what you can but don’t force yourself past your own limits.  Allow yourself time to rest and recover, but don’t let it turn into laziness and slacking off.  Of course, this needs to be set by your standards and your body, not society’s standards in general.  They may think time you need for recovery is slacking off.  It is not.  Don’t buy into that.

So, those are my top three.  I also want to share the planner I’m using this year, because it is absolutely great for goal setting.  I realised I was running out of time, energy and motivation to keep up with a bullet journal and I needed to sacrifice the flexibility it offered me in favour of something pre-planned.  For Christmas my parents gave me this beautiful set from Leaders in Heels.

Make It Happen Bundle
Image Description: a pink notebook with “Nevertheless, She Persisted” on the front, a dark blue note book with, “Think Big, Dream Bigger, Set Goals, Make it Happen – Daily Planner” on the front, and a lilac note book with “Make It Happen – The Leaders in Heels Planner” on the front.  

Whilst it is a little heavy on inspirational quotes and a very shallow, marketable form of  feminism, it does have all the functions I need.  The weekly planner in particular has a big focus on goal-setting using the SMART method, with room for three primary goals (a sensible number, I think).  It has annual, quarterly and monthly reviews, which really encourage reflection and accountability.  The daily planner also has three daily goals.  So far, I’ve had a very productive year.  Normally I flounder a lot when I’m off work because I have no schedule, no clear goals and no accountability.  Sitting down at the beginning of the day and writing down what I want to achieve gives me focus and drive, and it is sooooo satisfying when I achieve all the things on my list.  The third book is just a notebook so I can still do bullet journalling things like make a lot of lists.  9.5/10.  I take half a point off because the weekly planner smooshes Saturday and Sunday together, which I hate.

 

What are your goals for this year?  Do you have plans on how to achieve them?  Will you be rewarding yourself if you get there?  Let me know in the comments.  I also invite my readers to keep me accountable on my goals and nag me throughout the year about achieving them.