“You don’t look like you’re in pain…”

That’s interesting. What exactly is the right way to look like I’m in pain? Do I need to limp? Have bruising to actually SHOW the pain? Moan and groan all day? Complain constantly?

Would that make you more comfortable or make it more believable?

Unfortunately, that’s not quite how it works. I think you’ll find that if you pay attention to the little things, you really will see the coping mechanisms so many people use while in pain, and that sharing that pain with the world isn’t really all that easy. Here’s a few of my own coping mechanisms…

Heat – while at work, I sometimes put the little fan heater on under my desk, no matter how hot it is outside. That direct heat to my legs can be a life saver for joint and muscle pain.

Tea – you’ll notice I switch from normal black tea to herbal tea when I feel a migraine coming on.

Movement – I often get up from my desk to clean the kitchen and other little things around the office when I’m in pain. Sometimes sitting still just makes me crazy in that situation.

Rest – that’s an obvious one, but one you wouldn’t ever see. I often can’t sleep from the pain, but I can’t do anything else either. So I lie in bed with my eyes closed, sometimes just hugging a hot water bottle.

Now those are just a few of my own, but you don’t really realise the strength in people until you realise that they’re not showing their pain, no matter how debilitating it feels. However, the sad truth is, they often feel scared to show it when they really need to. Will I be judged? Am I being annoying?

It’s interesting and sad to me that even through that pain that so many people with chronic illness feel on a daily basis, they feel the need to hide it for other people’s sakes. Why? But then when you finally reach the point of needing to say something when it gets too bad, you’re then judged for not looking like you’re in enough pain. It’s really a lose lose situation.

That’s not something I can be angry about though. It’s very hard to empathise with something if you’ve never experienced it, and we’ve all been guilty of that.

A little more compassion, a little more understanding, and a little more awareness would go a long way 💫

Post Surgery – The Facts

So often people tell me that they’re jealous when I ‘get to’ have two weeks off after a surgery. Like I just get to chill out and relax, have a little me time, you know? Incorrect.

Let me share with you my last experience with surgery, which was in December last year for the latest occurrence of Endometriosis.

I’ll start in the recovery room. I wake up in excruciating pain, not from the incisions, but from every part of my abdominal and pelvic region that they scraped, poked, and prodded during the surgery. I’m in so much pain that I’m crying and vomiting, until they give me just enough morphine to dull the pain (along with a happy button that allows me to access pain killers as I need through the night through the IV.)

The night in hospital isn’t so bad thanks to the extra strong pain killers. But I can never sleep properly after surgery. I lie awake watching TV, while lightly sleeping now and then. Luckily (and unluckily) for me, I have a catheter in so I don’t have to move from bed. Uncomfortable – but convenient!

The next day the real struggle starts. They’ve switched me from morphine to Nurofen (until I can get home and actually use the good pain killers that the doctor left me,) so the pain is starting to get real again. That along with the fact I now have to pee a certain amount before they let me go home, makes life slightly annoying.

Then I get home to my boyfriend’s house, and the stairs… They kill me on even my best days, let alone after surgery! But it’s all okay once I’m tucked in bed binge watching Netflix with my Husky and boyfriend by my side.

Or so you’d think…

It doesn’t sound so bad when you put it like that. But the reality is, a few hours after I arrived home from hospital, not only was I in pain but I was also struck with feeling incredibly ill. In the spirit of honestly, I didn’t know if I wanted to throw up, pass out or shit myself… Not a great combination.

So here I am, begging my boyfriend to help me get to the bathroom. Very very slowly (after sitting down a couple of times because I’m going to pass out,) we made it there. Once there, all I can do is lie down on the floor. I tell my boyfriend to get out and then yell at him to come back. This happens several times. Poor guy didn’t know which way he was going!

As I lie there on the bathroom floor, I contemplate two things. One – when was the last time this floor was cleaned, and two – maybe I should just let myself pass out so I don’t have to suffer the humiliation of shitting myself on my boyfriends bathroom floor.

However, it was the panic after I realised I would never live it down if he found me lying unconscious in my own poop and/or vomit, that gave me the strength to drag myself off the floor, quickly use the toilet and then lie back down on the floor again, awaiting rescue from Aiden to take my back to bed. Phew! Nothing like a little humiliation to get your ass into gear (no pun intended.)

Things didn’t improve from there at all for about a week. I was in constant pain, forever lethargic and still feeling incredibly ill. There were many nights on the bathroom floor almost exactly as described above. But after a week, as my body started to recover from the ordeal, I noticed something else troubling.

Anxiety. Anxiety that turned into panic attacks. Daily, undeniable, debilitating panic attacks.

That’s the thing about something as traumatic as surgery, it doesn’t just affect your body. It also affects your mind. More often than not, people suffer mood changes, depression, and anxiety in the weeks or months after a big surgery. The impact is huge in EVERY way.

So the next time you start to think someone is ‘lucky’ for getting time off to recover after surgery… Catch yourself and remember the truth.

Waiting Room

I’m sitting here waiting to see yet another specialist. What number is this? Probably at least my tenth since last year. These days, doctor shopping is necessary. After all, they’re only human, they can’t know it all!

As I sit here waiting, I feel a few things. One is exhaustion – I had a horrible sleep last night as usual from pain and anxiety about today’s pending appointment. Which brings me to the next thing I’m feeling – anxious. Every time I sit in a waiting room my palms sweat, my heart races, and I get lightheaded. I feel pure dread for what’s to come. Answering the same questions over and over again, explaining my symptoms to yet another doctor that may not have any answers, that may send me on my merry way with a good old “sorry I couldn’t help. Hope you feel better soon!”…Really?!

Dismissal – it’s not something any of us like to feel. Let alone those of us who are chronically ill and seeking help from the only people in the world with the ability to do so… And quite often even they can’t do that.

So how do we deal with this time and time again? It’s simple – we just do. I don’t want to toot my own horn, but it takes a hell of a lot of strength to do this over and over again on your own, and I say that for everyone who’s been through this. To be rejected so many times. To be made to feel crazy simply because they can’t explain your mystery illness and symptoms. I don’t fit into the text book definition of anything, and that’s the unfortunate truth for so many others.

I’m scared and exhausted from this entire process. And yet, that final thing I always feel while sitting here in the waiting room, is hope. Hope that this doctor will be the one that can crack the mystery, that can confidently say they’ve seen this before and know exactly what’s going on and how to help me.

Now from my point of view, I think I have it pretty easy compared to so many others. And I have to say, I admire all of you who are struggling through, so so much! You deserve all the credit in the world, and more.

Another day, another waiting room. Keep fighting peeps, we’re with you.

Dear Doctor

Dear Doctor,

Two years ago I came to you for help. I sat in front of you, a desperate and broken woman in unbearable pain, and you broke me down further. You hammered me into the ground until I truly doubted myself. Am I crazy? Is this all in my head?

When I saw you that day, my UTI had gotten so bad that I was peeing straight blood. I was ill, I was hurting, and I knew in my gut exactly what was going on… My Endometriosis has returned only one year after you performed your last surgery. You believed in your own skills so much that you didn’t believe me. You took my concerns about my health as a swift kick to your balls, because somehow this was about you.

You sat there and laughed at me. You told me it was most likely psychological because I was just ‘used to’ being in pain. You told me I probably had back problems. You were grasping at straws for any explanations that weren’t that my body was growing Endometriosis at an insane rate, because that simply didn’t fit in with your text book information.

But in the end, you knew that I wasn’t leaving that office until you agreed to perform surgery the next week. I wasn’t going anywhere until I got help, even if it was from someone like you.

The day I had surgery, you still tried to convince me that you wouldn’t find anything. That there wouldn’t be Endometriosis on my bladder like I suspected, because it’s “SO rare” that it causes UTI’s, almost impossible. You smiled condescendingly at me while you patted my hand and told me this was all pointless.

You made me feel like I was being violated, because you had become the last person in the world I trusted to perform my surgery. But I was desperate, I knew in my heart that I needed surgery, and I needed it now.

When I woke up in my hospital bed, you visited me. And with a polite smile you said that you had found small amounts of Endometriosis throughout my pelvic region, as well as on my bladder. Dear Doctor, am I allowed to say I told you so?

A few months later I went for a follow up appointment, but not with you. I found a new gynecologist down the hall from you, one with more skill, understanding of complex Endometriosis, and above all, empathy. She told me that my surgery with you had absolutely shown substantial amounts of Endometriosis and that, though rare, it definitely could (and in this case did) cause UTI’s. You lied to me to save your pride, and you should be ashamed of yourself.

Dear Doctor, you’re a fantastic surgeon, but your bed side manner sucks to say the least. Next time, with your next patient, do better.

Kind regards,

Your Ex Patient

“Chaos cannot claim everything, you know…”

It’s surprisingly VERY rare that I read a line in a book that speaks to me (especially since I mostly read fantasy novels.) But I finally found one!

“Chaos cannot claim everything, you know – there are always objects and points of stability in the worst of it.”

I think this is an important one to note. Not just for those who suffer from chronic illness, but for everyone. We all have chaos causing havoc in our lives – we all struggle from time to time. But there’s always that point of stability in the worst of it, if you just look in the right places.

My points of stability aren’t hard to find. They’re in my life every single day. Making me smile even when I don’t feel like it, making me laugh, making everything else feel small in comparison. Making life so beautiful despite all the shit in it, in all of our lives.

Like most people, right from the get go things haven’t always been simple for me. I was born with collapsed lungs, so already not off to a great start! I suffered viral meningitis as a young child, needed my first surgery when I was 4 and my second when I was 9. Things steadied out a bit as a teenager, though I did suffer PTSD and anxiety.

It was turning 19 that really started to cause the most health issues, when I had my first ovarian cyst. It was a huge one, causing endless pain until I finally had surgery. After that, at age 21, I had surgery for appendicitis – it was chronic and came on slow, over 2 months. Don’t let them tell you that isn’t possible! Then came my Endometriosis diagnosis at age 23, A very complex form that has required surgery almost every year since. THEN, in 2018, arrived my mystery illness, still undiagnosed but looking more and more like a mild form of Lupus.

Yes, none of that has been easy. But all of that made me who I am, and taught me one vital lesson… Appreciation. Appreciation for every simple and beautiful moment that brings a smile or a sense of peace and hope. Appreciation for every moment I have with those I love. Appreciation for every time a friend checks up on how I am, or my boyfriend cuddles me until I fall asleep when I’m not feeling well.

Just little things – little things that add up to a very full heart and a life full with joy. My people always have been, and always will be, my points of stability.

The Infamous White Coat Syndrome

In 2018 I started suffering severe sudden dizziness, headaches and panic attacks – several a day in fact! A standard visit to my GP’s office showed an abnormally high blood pressure reading, especially for a young woman. This continued to be the case over a few visits.

Despite years of having consistent near perfect blood pressure, most doctors would have just written it off as anxiety. But my GP chose to look into it further and organised a 24 hour blood pressure monitor. This showed consistently high blood pressure. Even while sleeping, my BP was reaching stage 2 – stage 3 hypertension.

A few weeks later this landed me in the emergency room with chest pain and a dangerously high BP. But still no body could explain this sudden and concerning change in my body, except for one genius ER doctor. After talking to me for a few seconds, she casually turned to my father and muttered the six words I’ll never forget…

“Maybe she has White Coat Syndrome.”

Now let me start by saying that I’m generally a very patient person, I’d even go as far as to say I’m very level headed and reasonable in most circumstances. But if looks could kill, this woman would have been dead twenty times over.

Not only was her behaviour completely disrespectful and condescending by talking to my father like I wasn’t there or I was a five year old child, but that one sentence could be so scarring and stop anyone from seeking urgent medical help when they actually need it.

The look on her face when I informed her for the second time that my hypertension had been confirmed by a GP and specialist along with a 24 hour BP monitor was pretty priceless, but still didn’t make me confident that she wouldn’t make that same mistake again.

This really concerns me. Heart health, all health for that matter, is extremely important. And you’re always better off being safe than sorry. Now I completely understand that ER’s have so many people every single day that turn up for simple things that could have been dealt with at a medical center, and are wasting valuable time and resources for those who actually need urgent care. But why should that ruin it for the rest of us? Why should I have been dismissed so quickly?

I’m certainly not a hypochondriac, I’m certainly not a wuss when it comes to sickness or pain, not after years of suffering from Endometriosis before these other health issues popped up. My threshold is higher than you’d think. But how would they know that, they never asked. They just continued to talk at me.

Nevertheless, I think the flaw in our health system lies with not giving someone who walks through those doors the benefit of the doubt. It lies in not seeing everyone as individuals, in lumping us all as the same people who go to the ER for a cold or a hangover.

My second ER visit had medical students on my case, who were much more thorough and caring, and did find some abnormalities in my ECG (what a shocker.) However, having my boyfriend not believe me on that second trip was a whole other scarring experience, but that’s another story for another time 😉

Trust what your body is telling you guys, you are the only person who can fight for it!

“It’s just a T-shirt”

I’m not proud of this moment. In fact, I cringe when I think about it. There’s no eloquent way to tell this story, in fact I was told not to tell it because it’s ‘irrelevant’. But I disagree. So I’m going to give it a crack.

Pictured with my sister-in-law and my other brother’s girlfriend, having the best time at the South Coast Food & Wine Festival. I’d been very ill on the Thursday night and Friday morning leading up to it, with a flare up of intense migraine, body pain, muscle weakness and nausea. But despite that, I was determined to make the best of my time at this festival that my family and myself had been so looking forward to.

The day started well, with a quick 2 minute drive to Berry Showgrounds. We all piled into my brother’s car, and with 6 of us we had to stuff my poor boyfriend, Aiden in the boot. At 6ft something, it wasn’t easy or comfortable for the poor bugger, but it made for some real giggles for all of us and my favourite memory of the day. The look on three girls’ faces when we opened the boot and Aiden (not realising that there were people behind the car) had his ass out while yelling out “help me!”… Absolutely priceless! (Where’s a laughing emoji when you need one?!)

As the day went by, I genuinely had a great time. I like to think there’s nothing a glass of wine or seven can’t fix, if only temporarily…

Lingering in the back of my mind was the fatigue that was trying to draw my attention to it. Annoying, but bearable at this point. Until we got back to the house…

I could feel it, my body practically screaming at me to rest. That migraine starting up as a pressure building in my head. My irritation building. That’s when it happened.

My drunk brother chewed on one of those Allen’s pineapple lollies and threw it at my boyfriend (who’s lap I was sitting on.) Aiden then proceeded to grab the lolly and wipe his fingers off on my new t-shirt. *Insert gasp here*

Now while that’s pretty gross, it definitely doesn’t warrant a full on hissy fit. As I type I picture Aiden’s confused face (because I basically never go off at him,) and I think of how ‘crazy’ I sounded. “You owe me $24!!!” Yep… *Face palm*

I’m fully aware that sudden mood change is quite common with an oncoming migraine, and that irritation and mood swings are also common with chronic pain, but I wasn’t exactly feeling rational at the time to be able to put that into perspective. Now, however, I do feel just a tad bit silly, to say the least.

However, humour at my reaction aside, I think these changes are important to note in a person suffering from chronic pain. They may need a little understanding at that moment, a little bit of patience. Basically, both their body and mind are done pushing through for the day.

I share this, so that if you’ve experienced something similar, you don’t stress over it. We’ve all been there, chronically ill or not. It’s not crazy, it’s perfectly normal (albeit embarrassing.) Let us bask in our embarrassing reactions, own it, and move on.

Grueling Peak Hour

Imagine this. You have just worked all day with a growing migraine and your whole body aches like you have the flu, except you don’t. You’d prefer to have the flu, at least that would end at some point!

It’s peak hour. You jump on the train with only room to stand. It’s winter, which means the heater is ramped up on the train and you’re dressed in your winter warmers.

Each stop adds more passengers and it becomes harder to move or breathe. You suffer tachycardia so your heart rate speeds up with the heat and from standing. You’re aware you’re vaguely lightheaded so move closer to the door to gain a few precious seconds of fresh air when the door opens.

But after those doors close, the next few stops are in a tunnel and adding more and more people finishing work. You’re now sweating, shaking, weak and definitely dizzy. But you’re almost there.

You convince yourself only a few more minutes. One more stop. It’s going to be okay. You can do this!

You finally reach your destination to change trains and gratefully jump off. And then you realise… It’s even hotter and even more crowded in the station. You don’t feel any better. You feel worse.

You wait on the platform, feeling weaker by the second. Your illness has caused panic attacks in the past and you feel it coming on.

You just need to get on the next train and sit down. Then you’ll be okay. Just 2 more minutes.

Your train arrives and you grab a seat in the vestibule. Relief, pure relief. You still feel lousy, but it’s more bearable being able to sit and have some water.

Two stops later an elderly lady gets on the train. You realise out of the 6 people sitting in this area, you’re the youngest and everyone is looking at you, expecting you to move.

They have no idea. No idea that simply standing up could leave you unconscious on the floor. What do you do?

I know what I did at this moment. I stayed seated while one of the other worker women stood up and then proceeded to bitch loudly about the fact I didn’t stand up, while everyone else stared at me. Despite the fact that all these other workers had been sitting all day, I’m the youngest so I should be respectful and stand, right?

Wrong. Please don’t judge me if I need a seat on the train. I’m 29, and I look healthy. But I’m not.

Never judge by what you can see, there’s always more to the story…

Give with Heart Day

Today is Give with Heart Day – For 24 hours your donation to The Heart Foundation will quadrupled. Donate now and help them fight for young Australian hearts!

Did you know that cardiac arrest can happen at any age and sometimes without warning and is largely unexplained? It usually occurs abruptly, during sleep or rest (that one was a real shocker to me!)

Now I’m a bit late in the game, but if you donate today, all donations will be quadrupled by other generous donors!

Together we actually can make a real difference. It is imperative that we raise awareness about the health of our hearts, as it’s so widely misunderstood.

So if you want to help by giving generously, go to heartfoundation.org.au.

Make an impact!

18.09.10 – Paying the price!

Today I write to you from bed… And not in a good way.

Last night I went out to dinner with my boyfriend’s family, and I managed to stay out past 8pm. *Insert gasp here*

Now, while that is perfectly normal for anybody with a nice healthy body not intent on screwing them over on a daily basis, for me that is inconceivable! My nightly migraines over the last 2 months have made it quite impossible to stay out past 6pm, and have even made people concerned for my mental health.

I mean hey, if your brain was throbbing against your skull and every little noise made your eyeball feel like an ice pick was going through it, I think you may be slightly irritable and in need of peace and quiet also… Not meaning to be captain obvious, but just saying!

So here I am, at 2:41 on a Wednesday afternoon, just having woken up after a 2.5 hour nap. Wanna know why? Because one hour of Pilates was too much for me after such a HUGE night of partying. *Rolls eyes*

I mean seriously, who nearly falls asleep doing ab curls? They’re not exactly what you call ‘easy’ or ‘relaxing’. But my body was experiencing that bone deep exhaustion and was ready for a nap, and it certainly wasn’t going to wait for anyone!

Okay, so why am I sharing this with you? It may be a boring day in the life of Laura, but it is an unfortunately common one. A reality that has forced me to suddenly take a few weeks off work just to cope with the pain and fatigue that plagues me. I am simply sharing this with you, so that you see me in real life, so that you see all who are struggling!

To those of you fighting to get through the day without a coma-nap… I see you, empathise with you, and I give a f**k. It’s okay to take a moment to rest, it’s okay to allow yourself time to heal.

Until next time!