Endometriosis, Uncategorized

All the cutlery in the cutlery drawer.

Fatigue.

Not just sleepiness, but exhaustion to the point of nodding off at your desk. On the train. On the loo. In an important meeting. At the traffic lights.

Some days, I feel so tired, that I literally have to hold my eyes open and try to force my way through what looks like a fog in front of my eyes.

I can sleep 15, 16, 17 hours, and still wake up utterly shagged. And not the good type of shagged. The type of shagged where you rock up to work looking like this:

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And thankfully, I am not alone. As the Endometriosis Foundation of America describes, “The main cause of endometriosis-related fatigue is the body’s effort to eliminate the diseased tissue. While the immune system attempts to combat endometriosis, cytokines, also known as inflammatory toxins, are secreted by the tissue. What patients feel to be fatigue is the result of these internal chemicals.”

Ah. So basically, my body is working over time to heal itself, and its literally shit itself into exhaustion. I once had a gyno (a rare fave of mine) describe whats constantly going on in my body, as I have nerve damage after all of my years of pain.

She said: “You know how, if you go and put your hand on a hot plate, your body automatically reacts by flinging it away, as fast as possible so as to stop it from burning you? Well, inside your body, the hotplate is on, and the hand can’t move fast enough. It just stays there, and your body is fighting extra, extra hard to lift it, but there are so many damaged nerves, that it just works itself into overdrive all the while, burning your fingers off. And that’s where a lot of your exhaustion comes from.”

The worst part about all of this, is majority of outsiders who are just trying to be helpful come up with hints and tricks, or just suggest the following to rationalize your zombie like status:

-just get a good nights sleep (you mean, on top of the rest of the 7-10 hours a night I’m getting, and yet struggling to function still?)
-maybe you shouldn’t stay up so late (ahem, I’m generally asleep by 9pm)
-eat healthy (I don’t eat Maccas on the regular. I don’t gorge myself on chips and chocolate)
-drink less alcohol (Well. *cough* I’m kind of sprung here. This, I am trying to do less of)
-get some exercise (If I could run myself into a state of having energy, I would, the only thing is, that just leads to more exhaustion in the days after).
– have a nice bath (and fall asleep)
-drink coffee (yeah, no thanks)
-do less (If I did any less, I would be a hermit)
-you can’t be that tired, its impossible, maybe you’re sleeping too much. (This is a personal favourite of mine. Walk a mile in my shoes buddy. I dare you.)

I absolutely agree, going for regular walks and getting fresh air is helpful. But there are days, when it actually takes every ounce of energy I have, to just get myself out of bed. I saw a fantastic example of what its like to live with a chronic illness, using ‘The Spoon Theory’ created by Christine Miserandino. The below image relates this to Dysautonomia, however it can be used for Endometriosis, Lupus, Diabetes etc. 

Spoon-theory

If you were to calculate your spoons today, what would you have used?

For me today:

Get out of bed – 1
Get dressed – 1
Take pills – 1
Have a shower – 2
Read (attempted this, but fell asleep against the train window on the way to work) – 2
Socialize (seeing friends tonight) – 3
Go to work – 4
Go shopping – 4

Total= 18 spoons. Well, shit. 

It’s not even 4:00pm! I’m already over by 6 spoons. And this, is a normal day for me. If I don’t shower for work, I may as well look like the chick in the Gif above. If I don’t take pills, I am in pain and suffer. If I don’t get out of bed, I don’t get to work, and if I don’t work, I don’t have money for medication, surgeries, LIFE.
If I don’t read, my brain goes into overdrive stressing – reading is my outlet.
If I don’t go shopping, I won’t have the basics I require like food for me, and my cat.
If I don’t socialize, my depression and anxiety skyrocket.

Where can I save my spoons? Where can I get extra spoons? See, its all a catch-22.

In all seriousness though, the next time you see me (or your buddy who is struggling with fatigue), count your lucky cutlery you don’t have to worry about spoons.

It’s just as well I like to fork.

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Uncategorized

My people.

Here’s to the ‘emotional ones’. The ones who feel all the feelings. The one’s who are labelled ‘crazy’ and ‘unhinged’ and ‘full on’.

I have always been challenged by outsiders, who see my tears as weakness. Who see my emotions as a flaw, something to be fixed, or that I have to get a handle on.

Yes, I cry at the drop of a hat, and display my emotions on my sleeve- or on my chest as a stress rash; or in my erratic body language; in the tone and volume of my voice; the many, many words I speak; the sometimes pleading desperation I can show.

I also love harder than most, see the best in everyone, give amazing hugs, am able to show support and relate to so much and feel empathy for those around me.

How lucky I am, that I get to experience every colour in the rainbow. Every feeling in the book. Every emotion there is. I get to practice. I get to feel my way through things, and discover what my limitations are.

Yet I am drawn to those people, who are afraid to open up. Who are afraid to let me in. And these people can leave me clawing at the gates, pleading to just let me show them how amazing life could be, if they lived in technicolour, not just black and white.

I feel sad for those who don’t daydream. For those who don’t imagine what their life could hold. Who they could become if they just let themselves feel into the possibilities.

I will never know what living in greyscale looks like. And maybe the people on the other side of the gate don’t need me to show them my side. They like the simplicity. They like the ease. They like the logic, and the structure and the predictability.

Here’s to the people who hang dream catchers. Who have seven thousand colourful throw pillows. Who wear rainbow nail polish. Who dare to throw their hearts on the line, time and time again for that dream they have. Who know what their ‘crying music’ is. Those people, are my people. The people who are brave enough to be their true, emotional self, no apologies required.

 

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Endometriosis, sexual health

Resilience and Pessimism.

 

I attended a lunchtime seminar this week, in which I learned about how to remain resilient when life throws its sh*t storms at you. And what happens if you are pessimistic about everything that comes your way.

Have you ever heard of the three P’s? I hadn’t. When something goes wrong, our brain can immediately do three things, if we don’t catch it fast enough.

Lets say, you break your arm in a game of netball.

First it gets personal. Our brain tells us, that “it’s all my fault. If I hadn’t done X, Y  or Z, this wouldn’t have happened”. A person with resilience, and a few extra calming seconds might think: “This was beyond my control. I am not wholly responsible.”

Secondly, our brain decides that its permanent“It’s never going to heal, and it’s never going to get better. I’ll never play netball again!”. If we are more resilient, apparently we can trick or convince our brains to think “this too shall pass” or remember that “it’s just a broken arm, not a broken neck”.

Thirdly, when we are still freshly processing the bad thing that has happened, our brain can then decide that the event is pervasive, meaning it has “ruined my whole life for eternity and nothing can fix it”,  or that “it’s always happening to me and nobody else- WHY ME!”. Yep. You got hit by a feisty Goal Keeper, and you slammed into the post and broke your arm. It happens to lots of people, and they have survived. You will survive too.  

So, according to this seminar, if we let these three things take hold of us on the regular, when things go to sh*t, we develop “learned helplessness” and pessimism. Now, I don’t know about you, but if you have Endo, you’ll know that life sure throws its sh*t balls at you, directly to your face, when you are least expecting it, and trying to be an optimist in these times can be hard. Challenging. Feels near on impossible.

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So, what are we supposed to do?

When you get told that you are going to be in chronic pain for the rest of the foreseeable future? How do you find a positive spin on it?

When you are told your chances of having children are slim to none without the supports of IVF etc- how can there be light at the end of that tunnel?

When you wake up in pain, day after day, how can you tell yourself that it’s not permanent, and isn’t ruining your life forever?

When your relationships fail; friendships end; work stops; finances increase;  mental health issues develop; physical health deteriorates; your body changes; your life changes – what can be done to remain a ray of sunshine?

One thing I have been learning, is to own these big feelings. I think it’s so important to remember the positives, but it’s also equally OK to feel those deep, hurting, heartbreaking feelings. What I am really trying, is to not automatically put on rose coloured glasses, because I think that just ends up leaving you in the shit when reality strikes (again). It’s important to remain as logical as possible, and to take your time feeling the feels, and thinking through processes and outcomes. This then helps lead you to some more positive outlooks. And positivity, has to be the key.

“Accumulating research suggests that the positive emotions (happiness, contentment, joy, etc.) are associated with healthy immune system functioning. Conversely, the negative emotions are associated with weaker immune function, greater production of stress hormones such as Cortisol, and greater incidence of illnesses.” 

Because what do we know about Endo? It’s triggered by inflammation. And what triggers inflammation? Stress (among other things). And what is stress? A negative feeling that can be triggered by negative emotions.

According to Science Daily: “Stress wreaks havoc on the mind and body. Until now, it has not been clear exactly how stress influences disease and health. Now researchers have found that chronic psychological stress is associated with the body losing its ability to regulate the inflammatory response. The research shows for the first time that the effects of psychological stress on the body’s ability to regulate inflammation can promote the development and progression of disease.”

When it comes to Endo, I am learning to tell myself the following things, in order to minimize this “learned helplessness” and stops me wallowing in self pity and negativity:

  • I am not alone in this. I am supported.
  • I have besties and family members who get what is going on.
  • I am connected to so many  people on social media platforms who have been through what I am going through.
  • I am not being punished. This isn’t karma. It’s just what it is.
  • I am lucky to live in Australia, where health care is amazing.
  • A nice Voltaren suppository will fix my pain if all else fails. (Gross, but true.)
  • I am loved and cared for.
  • I have time.
  • I am not dying. (Drastic, but also true).
  • I am so lucky to be able to connect, learn and investigate alternative therapies and options.
  • There is this spectacular invention called Champagne. not great for bloating, but sharing a glass of this with a sister can heal many wounds.
  • I have come this far, and I can keep going.

I know, I know. *insert motivational poster here*.

motivation.jpg

I guess at the end of the day, I am still learning. But if a little bit of optimism helps, I am willing to do whatever it takes to regroup, and come back to that place.

Feel free to get in touch if you need a little bit of optimism, or, you can google, “people who are having a way worse day than you“. It always helps to put things in perspective.

x G

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Endometriosis

Inflammation frustration

I don’t want to forget how crap I feel right now.

Why?

Because when you forget, you get complacent. You shrug it off. You hide your feelings for the sake of making life easy. And that gets us nowhere.

As I sit here, with deep heat patches stuck to my back, surrounded by pillows, oil diffuser, pain meds, tissues, chocolate, and all of the comfy bedding I own, I can’t get past the aching that is in my body. The heaviness. That familiar feeling of defeat.

And its all because of one, single word: inflammation.

Well F inflammation and what it does to me, and everyone who suffers Endo.

I’d like to take inflammation out on a nice dinner date to ask it a few things, and then sneak up on it at dessert and treat it how it treats me.

……..

Two days ago, I was busy minding my own business at my desk when all of a sudden, I took a deep breath and got a shot of searing pain in my right chest. Now, at the time, I didn’t think much of it, maybe a stitch, or maybe indigestion. When it was still there with every deep breath, 12 hours later, and I was lying awake in pain, I still didn’t think that much except how tired I was going to be the next day. Fast forward another 8 hours to yet another GP telling me: “it’s probably nothing, don’t worry about it”. Well, when she saw me almost faint when I stood up, she changed her mind and sent me straight to the ER.

Off I shuttled, book in hand, ready for the waiting game.

I was X-rayed. I was prodded. Poked. Zapped. Injected. Fed some godalmighty horrid “food”.

It wasn’t my heart they said.

What about Endo? I said.

I highly doubt it they said.

With a chuckle and a brush off they were gone, leaving a doctor’s certificate, and instructions to take some Panadol.

Apparently while my heart shows no cardiac issues, my lung lining was inflamed.
Now. I am no stranger to inflammation I tried to explain this to the doctors and nurses, who barely gave me a second glance as soon as the E word was brought up.

My brain went into overdrive. Why is it so impossible that the two are linked? Why am I the crazy one? I have had doctors up the wazoo tell me “it’s probably nothing” and it turn out to be so much worse, all because they didn’t know enough about it to believe it, or that because it doesn’t show up on an X-Ray it mustn’t be real. When doctors train to be doctors, aren’t the taught about all kinds of illnesses and diseases and viruses and infections? If there is a disease that affects TEN PER CENT OF THE POPULATION of women, why then is it still such a mystery?img_3197.jpg

Why are the people with Endo the ones fighting this battle and not the doctors treating them?

(Note to doctors who are on our team– I do not mean you. You ladies and gents are the bomb.)

It’s already hard enough that our friends and family (who aren’t trained medical professionals) find the concept of Endo difficult and confusing, but it felt like a slap in the face that a doctor in Emergency didn’t want to even consider the possibilities.

Today, as I hobble out of bed to get my dose of pain meds and strap on another coat of armour, I am furious.

Pleurisy.  That’s what I was ‘diagnosed’ with. Well, a quick google of ‘Pleurisy and Endometriosis’ comes up with the following:

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So, hang on. I totally understand that doing a Dr Google search is generally a no-no, but hear me out. If it’s so impossible, then why are there so many links and information? Maybe, the doctors are right. Maybe it’s just coincidental. And if so, then so be it.

But- just do me a favour and hear out patients with Endo when they have concerns. Shout out to Bloomin Uterus who even has a page dedicated to Endo and the Lungs. It’s worth a read.

At this point, I feel like I may as well be trying to convince doctors that Endo is as real as a unicorn riding a mermaid.

I am wiped out. Sore. Sad. Heavy. And I am just one person. There are so many of us out there who go through this and so much more every single day.

I can not wait for the day when I do not feel so defeated.

If you do one thing today, share this. Or share something about Endo. Its Endometriosis Awareness Month. It needs to be talked about. If not for me, then for your friends. Family. Mothers. Sisters. Aunts. Teachers. Doctors. Daughters. Nieces. Granddaughters.

We might be 1 in 10, but we can certainly make some noise.

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Endometriosis

March into Yellow

This month you may see more women (and men) out and about dressed as brightly as the sun. Well. At least I will be, along with thousands of fellow Endo sufferers, as this month is Endometriosis Awareness month!

I will post weekly about my outfits from that week, and aim to wear something yellow every single day. Now, I may be colourful to most people I know, but as a general rule, the one colour I generally steer clear of is- you guessed it- YELLOW. But, I managed to rustle up some mustard, got gifted a few yellow tops (thanks Ruth king, Queen of Midwives!) and found some beauties in some op shops.

yellow

Literally all I have (so far) to get me through this month.

Id love to see your photos, and you can see more of mine if you follow my instagram- @gene_ie_e and feel free to hashtag the crap out of it.

#1in10

#marchintoyellow

#endometriosis

#endo

#endoawarenessmonth

#endometriosisawareness

#yellow

#fuckendo

#alltheyellow

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Endometriosis, sexual health, Wisdom Wednesday's

Wisdom Wednesday

This week’s Wisdom Wednesday is a must do.

So, last night I went for a walk to the chemist, to collect my Endo nerve pain/anxiety medication. During this walk, I was listening to one of my favourite Podcasts, the Melissa Ambrosini Show. Her guest this week was the incredible Dr Lara Briden, and they talked all things periods, cycles, contraception, Endo, PCOS, fertility etc.

It was AMAZING.

You can listen to the podcast here…

To give you an outline, this is what the blurb is, straight from Melissa’s page:

Missing periods, PCOS, endometriosis and PMS… odds are, either you or someone you love struggles with one (or more) of these painful conditions every month. But your cycle does NOT have to be a cause of pain, frustration or moodiness, and today’s podcast guest — Dr. Lara Briden — is going to tell us why.

Dr. Lara Briden is a naturopathic doctor and ‘period revolutionary’ — leading the change to better periods for all women. Informed by a strong science background and more than 20 years experience with patients, Lara is a passionate communicator about women’s health and alternatives to hormonal birth control. Her book Period Repair Manual is a manifesto for woman who want to reimagine their cycle and provides practical solutions using nutrition, supplements, and natural hormones. Now in its second edition, the book has been an underground sensation and has worked to quietly change the lives of tens of thousands of women across the globe.

Everyone — and I mean both men and women — NEED to listen to this wide-ranging conversation, especially if you want to make a baby, re-establish regular periods, discover the most reliable methods of natural non hormonal contraception methods, and heal your PCOS, endometriosis, or PMS.

In this episode we chat about:

  • What the pill is actually doing to our bodies (03:58)
  • Why period pain is not normal (06:29)
  • Dr Lara’s top 3 non-conventional ways to combat period pain (good GODDESS I wish I’d known about these back in the day!) (12:06)
  • Why our periods go missing and how to get them back (14:23)
  • The top 5 non-hormonal natural contraception methods (18:55)
  • How long you need to wait after you come off the pill before you make a baby (26:30)
  • Why making a baby is a team sport and why men are just as responsible as women (29:19)
  • What men can do to make sure they have super sperm (31:45)
  • Plus so much more!”

 

If I could get this played in every high school sex ed class across the country, I would. until that magical time occurs, please keep talking about it!

xx

G

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sexual health, Wisdom Wednesday's

Ruth King, Queen of Midwives.

In my first interview on Finding Fortitude, I wanted to dive straight into the nitty gritty and cut through the uncomfortable wall. I have interviewed the best Midwife I know, and one of the best mothers I know- Ruth King. Ruth is the Midwifery Advisor for the Education Unit at Australian College of Midwives. She knows her stuff, and isn’t afraid to put it all on the table (or floor, or birthing pool).

Ruth

Ruth King (right) with a future interviewee, Claire Byrt of Project Work Life (left).

Can you tell me a little bit about yourself?

I am a daughter, sister, aunty, wife, mother and midwife.  I am just over 40 and I have 2 children (13 and 5), a great husband, a dog, 2 cats a fish and a turtle (as well as a huge and loving extended family).

Why Midwifery?

When I was living in London I was working in Project Management when I was pregnant/had my 1st child.  At the time there was a great show on the TV called William and Mary.  It was about a community midwife (Mary) and her husband who was a funeral director (William).  Essentially a show about birth and death and the way we perceive it in our society which resonated with me – probably because I was pregnant.  Plus there was just something about the role of Mary that got under my skin.  I think it was because she reminded me so much of my Aunty from back home who was also a community midwife and whom I had always admired.  Plus her job looked amazing – working with women (like me at the time) to have a pregnancy and birth the way they wanted (and where – she did lots of home-births) and then being there for the women in the postnatal period.

My pregnancy was great and I had nice midwives but not a community midwife as my local service did not offer that.  The birth though left me feeling like it could have been better – that the random midwives that I had did not make an impression on me – that I felt they spent most of their time in the corner making notes and checking machines…

I remember having a conversation with my mum (whilst getting breastfeeding tips) about a new course that was on offer in SA for a direct entry course (no nursing required).  My interest was piqued, but my focus was distracted by our impending return to Australia and all that entailed (my hubby is from the UK so it was a huge endeavour with lots of tears as we said goodbye to family and friends and left our jobs and our home.  However I clearly talked enough about it to warrant my husband advising me (after we had arrived in SA, and with University entries closing within the month) that I had best enroll in a university course (Bachelor Midwifery) or I’d need to go back to work at the start of the following year.  I applied and I have never looked back!

Can you tell me a little bit about your history as a Midwife?

After I completed my studies I went to work at one of the 3 tertiary hospitals in Adelaide, to start with as a general midwife rotating around the wards but then I moved to Midwifery Group Practice (MGP).  This is where a women will know her midwife through pregnancy, birth and post-natally.  She will have support form a backup midwife or team (generally who is part of a team) in case her primary midwife is not available for appointments, enquiries or the birth.  This is the optimal care for women during & after their pregnancy with research showing better outcomes for women and babies when they receive this type of care (known as continuity of care).  Really ALL women should have this care, or at least access to a midwife as their primary carer, however there are currently not enough midwifery models or care around Australia, and our community really doesn’t know the value of midwives (potentially because we still don’t make a big enough song and dance about how amazing we are and why we are so important – such as getting the GP referring women to a midwife rather than an obstetrician when they 1st find out they are pregnant).   I digress…

I would say this was my favourite time working as a Clinical Midwife.  Every day was different.  Every woman special.  It was a time of intense learning and joy (and some tears and sleepless nights) and my children still ask me when I am going to be going back to that job…

A few years after graduating and working in MGP I had my second child (and I completed my Honours in Midwifery – note to self never do that again! Both need full attention).  After my maternity leave I did return to MGP for a short while, but then I saw my current job advertised and I thought… hmmm  I can do that! I can incorporate my skills form my pre-midwifery career, with my midwifery knowledge and passion… and so here I am… managing the Education Unit for the Australian College of Midwives, the peak professional body for Midwives in Australia.  I still do clinical work as I miss working with women and sharing information and ideas with them as well as their journey… so I work on weekends via an agency, and I go where I am needed.  It keeps me current and energised about Midwifery!

You have a young teenage daughter, does she feel comfortable talking to you about
puberty/menstruation (*eep*) /vaginas (*double*eeep*) because you are comfortable, or do you think it makes her more hesitant to talk?

Haha NO!  I raise it with her and she is all ‘shrug shoulders, shy away’. But she is getting better.  And she is getting used to me being open and upfront and asking her about it all – even in front of her dad!

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The normal reaction when teenagers have to talk ‘sex’ with the parentals.

Both of my kids know about periods, what they are and why we get them as they have been asking questions since whenever they used to accompany me to the toilet – and I am not inclined to make up a story, so that I think is a good start.

And then for my daughter I found out about a Celebration Day for Girls here in SA that we went to.  This was an event for girls and their mums to go to, to learn about menstruation and how it fits into the cycle of daily living and life’s journey and also the cycle of womanhood.  I know she had a good time, but also that there were bits that were embarrassing and grossed her out… but when it came time to get her period, we were prepared with pads, spare knickers, heat packs, oils, massage, quiet time – and no fear!!

Do you know much about Endo? If so, can you share your experience?

From a personal experience, no not really, although I learn more every time I talk to my sister and every article or blog I read.

As I learn more I look back on my childhood and remember cousins and friends that were holed up in their room every month, in pain!  Back then I thought – “cor another day off school.. lucky chick!”  Now it means more to me and I rather think – “oh wow you poor girls that must have been horrible!”  Back then it (the pain) was just accepted (although it was known not to affect everyone) and (if you had pain) you just got on with life (after you got over the pain of course).

I’d like to say that this expectation has changed, but really I don’t think it has.  I think it is still a common experience for many girls and women… and that makes me sad.  But at the same time I see all the amazing work going on, the new funding, the awareness days and promotion and I think there is a beautiful communal garden of knowledge being grown and shared such that our future generations will be well informed. Well before the issues of Endo first make an appearance, young girls and women might have a chance to nip it in the bud (so to speak) or at last know where to go to and what to do, rather than just quietly accept what they are going through as the norm (and do nothing until it is too late and it has affected every aspect of their life).

What do you wish more women (of all ages) knew about their bodies and their ‘lady garden’ health?

I wish that all girls (and boys) were taught that this was a wonderful and natural life cycle and that it should be embraced and celebrated rather than shunned and hidden.  If we made this a positive experience for girls and women then maybe they would be more open to talking about it and not be ashamed when their period cycle begins.

I think it is important that boys and girls dot get separated out to have those types of talks as they are all affected by what happens to the other sex, be it now or in the future and so it is important to understand both sides. And for girls particularly id want them to know/understand that  a period that has you hiding in bed, unable to move and in pain is not in fact normal and that the sooner it is checked out the better.
(You can read more about my thoughts on this in my post, SexEd: more like ShamEd)

For health professionals, I’d ask them to start listening to the girls and women who come in and stop dismissing them as just having their period.  No one really goes to the doctor on a whim… they make the time to make an appointment, sit in a waiting room for a few hours, surrounded by people who are potentially infectious because there is something wrong and they need help.  It is time for change.

You can learn more about the Australian College of Midwives and the wonderful work they do here.

A ginormous thanks to Ruth for contributing and giving such beautiful and honest responses to questions that a lot of people would be too scared to talk about!

I agree. It is time for change.

x G

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