Unexpected Loss

All those years in school, no one really prepares you for what it’s going to be like when you have your heart broken. And I don’t mean 16 year old, “I just broke up with my boyfriend of 3 months,” kind of heartbreak. I mean the kind that leaves a profound impact on your soul. A mark that will never quite go away.

Now, my relationship wasn’t perfect. I don’t actually know why that word exists; nothing is perfect. But it was real. It was best friends who had fallen in love. It was trust, understanding, respect, support, and unconditional love… Or so I’d thought.

You never really see it coming. That humiliation you feel when the things you thought were what made your relationship indestructible, were all in your head. That utter disappointment in the person you had so carefully trusted with your heart. That rejection.

The blow to your self esteem hits the hardest. Knowing that your life situation, your very being, doesn’t tick all the boxes for that person. Knowing that the unconditional love and support you so consistently offered… Simply wasn’t enough.

It leaves you thinking… What else is there? If I gave my everything and it wasn’t enough… What then?

Unloveable. Pathetic. Those are the feelings that crush the soul and leave an inexplicable darkness in your heart that was never there before. Even through all the trials you’d overcome in life, this hits home the hardest. And now you’re trapped behind a facade of strength and rationality, all the while feeling utterly broken intside.

The worst part – you can’t even hate them. They’re not actually a bad person, they simply didn’t want you. But there are three words you can’t seem to vocalise to anyone, because the humiliation and loss is too raw.

“I miss him.” Pure. Simple. Gut wrenching. Three words that wake you up at night with a physical ache. Three words that make you want to lash out and tear your room apart.

I do. I miss him. And no one, nothing, could have prepared me for that.

Pressing Pause

Hi guys,

I’m writing to you to let you know that, due to personal circumstances, I will be taking a short break from my blog.

I started this blog to genuinely help people who have dealt with similar situations to me, and it breaks my heart to say that this situation is one of the reasons that my partner of six years chose to break things off with me this week.

Chronic illness is hard on everyone, it doesn’t just effect the person suffering through it. It becomes a burden that everyone in that persons life must carry. For some people, that burden is too much, and I understand that.

That being said, I want to say something loud and clear. As a person, you are not a burden. I am currently suffering from a huge loss of self esteem and strength that I had spent years accumulating, and reminding myself that I am not a burden and not defective is almost impossible at the moment. I feel broken. But logically, I know that I’m not. I know that none of you are. You’re just stuck in a situation that you had no choice over.

So for now, I will be focusing on myself and on healing my incredibly shattered soul. But I will be back in no time, to continue sharing my stories and experiences in the hopes of helping someone out there who is suffering and needs a little bit of hope and knowledge that they are not alone in it.

Wishing everyone all the best until then. Xx

The Unexpected Side Effect of Chronic Illness

We often hear about the symptoms of chronic illness and chronic pain. Muscle fatigue, muscle pain, joint pain, headaches, nausea, stomach & bowel disturbances, skin issues, chest pain, fatigue, malaise, and many many more.

But what’s often not mentioned is the emotional toll any chronic illness takes on every person who suffers. In particular, the guilt that comes with it.

It seems strange to say – I mean, why would you feel guilty for something you had no say in? But it’s an unfortunate and common side effect of chronic illness or pain.

No one actually wants to be a burden. No one wants to hold other people back. So we do exactly what we shouldn’t do – we spend all day apologising to others for our illnesses and our limitations. For the reason we can’t work full time, or work at all. For the reason we need extra rest. For the reason we can’t do too many physical activities. For the reason we can’t get out of bed that day. Our illness, that we can’t help or control, makes us feel invalid and like we’ve lost all value – and ultimately makes us feel guilty.

Did we do something to deserve this? Could we have taken better care of our bodies before this happened? Is there something more we could be doing to feel better – to be better? Should we listen to all that unsolicited advice, spending every extra penny we have on controversial treatments and natural methods that may or may not work?

What’s the right answer for this predicament we didn’t see coming, the ‘sure thing’ cure we haven’t tried yet. I swear, if you just tell me what it is, I will do it!

But that desperation for an answer to ‘fix’ our bodies does nothing to ease our mind of the guilt, or the fear that maybe it really is all in our heads. We still feel bad every single time we have to cancel any social plans. We still feel bad when friends just start forgetting to invite you, because you rarely show up anyway. We still feel bad when we’re on date night and have to leave early when our bodies start to fail us, or planning a 5pm early bird dinner just so you can be in bed by 8pm. We still feel bad about all the limitations that come with any outing. We still feel bad making plans at all, knowing we may have to cancel. We still feel bad for all the extra responsibilities other people have to take on at work in our absence.

Our limitations, become their limitations.

I still feel bad when my close friends and family, or my boyfriend, says “it’s okay,” when I cancel or pull out of plans. And they mean it. It really is okay, they understand my reasons, they sympathise. So why does that just make me feel worse? More guilty. Like maybe I’m taking advantage of their love for me. Like I’m hurting these people that care for me so much that they have unlimited patience when it comes to my struggle for my health. I’ve just wasted their time and ruined their plans for the day, but somehow it’s okay. But it’s not okay… Not to me. Never to me.

Guilt. All consuming, occasionally debilitating, and most of all, unexplainable… And the symptom we often don’t talk about. But it’s there, devouring us from the inside and causing more conflict in our minds than we care to admit. Do we put our health first, or do we just push through that activity that we know will just cause us more harm afterwards? Am I being selfish for choosing rest when I need it?

I can answer that, confidently and surely…. No, you are not being selfish for looking after your health. I know that, yet I still question it daily. Maybe it’s time to stop apologising for something that we cannot help, that we did not ask for, and that we are doing everything and giving everything to try to fix. Maybe over time, that guilt will be a light shadow in the background of our minds, rather than consuming it. But most of all, the moment we stop apologising, is the moment we show others that we don’t care what they think. That we know we didn’t ask for this or want it, and that we will not continue to say sorry simply for being sick.

…Easier said than done, right?

Unrelenting Unkindness

What is kindness?

According to the online dictionary, kindness is defined as “the quality of being friendly, generous, and considerate.” But to me, it’s a lot more than that.

In Australia, we are currently in a state of emergency from the ever growing bush fires that are plaguing many of our states. I would say now, more than ever, is a time for us to band together. To simply be kind, lend a helping hand and show support as much as possible.

But I find myself reading anger and hate messages as I scroll through Facebook. Mostly about the Prime Minister going away for a week with his family during this tragic natural disaster that is not only taking human lives and homes, but thousands of our animals lives as well. Over 2000 Koala’s lives lost so far – enduring a death I wouldn’t wish on my worst enemy.

But despite the fact that we are going through this ongoing tragedy, why does it matter that this one person was on holidays? Aren’t so many others also on holidays this time of year? Isn’t he still a human being with a family? Doesn’t he have a huge team of people to cover for him while he’s gone? Is he meant to put on a firefighter suit and physically fight the fires himself? And if that’s the case, shouldn’t we all be doing the same?

Where do these double standards come from? Where does this hate and anger come from? Where we should we using all our energy to support our firefighters in any way we can, and support those of us afflicted by the fires, we simply look for someone to blame. And sadly, that’s the way it’s always been. When we’re afraid or angry, it’s easier to blame someone than to admit that everything that’s happening is completely out of our control.

This is just one current situation that I can think of in our country, where hate and blame is rearing it’s ugly head in the face of tragedy – but I can think of many little occurrences on any given day.

I can see judgement and cruelty from one person to another, in little comments, in bitchy looks between women, in coward punches between men, in people putting each other down just to make themselves feel a little better.

But why? What is the purpose of this?

I mean hey, I’m no saint. I’ve made mistakes and unintentionally hurt people, but I regret every single time and learnt my lesson each time. To me, kindness should be easy, it shouldn’t be an effort. But the sad fact is that it is on some occasions. Sometimes we need someone to actually point out that we’re being nasty, that we need to put more effort into being kind.

But the truth is, we have NO idea what someone is going through behind closed doors. We have no idea what their life is really like. You may stand there having a conversation with a friend, maybe even judging what they’re saying because you think you know them so well, but you don’t. You can never know everything about someone.

One of my best friends read the first chapter of my book the other day, and said she never realised that there is so much she never knew about my past. And that came from a best friend who I told SO much back in the day about that exact situation. And yet, she still only saw the tip of the iceberg.

So, that’s where kindness becomes important… Because a simple act or a simple comment can make or break someone’s day, depending on what they’re going through. I have no doubt that those comments to the Prime Minister would have affected him greatly, and in reality we have no idea what his personal life is like.

Every day has been a battle for me for a while, and because women can occasionally be bitchy, I’ve had those days made much much worse on occasions. And that’s just me. I have no doubt that it has happened to every single one of us on more than one occasion.

What about the Vegas shooting in America in 2017? Weapons weren’t allowed into that concert, and many people commented that if they’d been allowed their guns that day, maybe things would have turned out differently. But how did they intend to shoot back at a rifleman on the 40th level of a building? It’s quite possible it would have done more harm than good, and hurt more innocent people. Why are we fighting fire with fire? Violence with violence? Hate with hate? … Are we just making matters worse?

The short answer is yes, we are. Fear can bring out a lot of ugly emotions and reactions in people, and it’s just the way of the world. It’s just part of being human.

But practice makes perfect. So practice kindness every day. Bypass that bitchy comment you were about to make, overlook how her shoes don’t match her handbag, think before you throw that punch, have some empathy before you toss blame around. We’re all going through something, so have courage, and be kind. ❤

Thirty-one Needles

Are you afraid of needles? Well, so am I. Not so much afraid of the needles themselves, but more of the pain they inflict when they’re stabbed into your skin.

Yes, I am a wuss when it comes to anything sharp and prickly. Especially when what’s being injected happens to have it’s own painful effect.

So, it may surprise all of you, including myself, to hear that I had 31 needles of Botox injected into my forehead, head, neck and shoulders today. I’m still in a state of ‘WTF just happened?!’

When I left the house today to go to my second appointment with my neurologist, I knew we would discuss the possibility of Botox, since she had mentioned in my first appointment that I was eligible early due to the severity and consistency of my migraines. So, I had planned to tell her that yes, I would very much be interested and discussing Botox further, as I would sick of using so many medications to stabilise my condition.

I walked into her office and told her how my migraines and headaches have both improved on the medications, but that I was still somewhat afflicted. She told me that I was sweet, and she could see that I’m smiling through it, but that my answers were pointing towards too much of a problem, that it was her job to do better.

Let’s all just take a second to thank whatever god we all believe in that there are doctors with as much compassion and empathy as her in this world. She restored my hope, that’s for sure. She had no intention to give up on me or my unexplained pain.

But, what she said next had my palms sweating instantly. “Well, you came on a good day, I can do the Botox right now if you like.”

The look on my face told her exactly what I was feeling. “You’re not good with needles are you?” No Doctor, I most certainly am not. That being said, I’ve had enough blood tests in the past 2 years to not even blink when I get them done… But 31 needles into my head is a whole other kettle of fish.

My response surprised both of us. “I have this gut feeling that I should just man up and do it right now before I change my mind.”

So, she didn’t waste any time in getting the injections ready while I laid down on the table, holding a little purple stress ball in the shape of a brain, to help me relax (and prevent me from passing the fuck out!)

Then began the torture. One needle at a time, each a different degree of pain, each making me stress more than the last – all while my doctor tried to make jokes to calm me down. She didn’t do too bad either I must say. She had me giggling through the pain, and told me I’d done the best she’s seen so far, not one swear word left my mouth!

I left the office with my head feeling like it was on fire. ‘Stingy’, which is how she described it, is an understatement. Knowing that in 12 weeks I will have to do it all over again, and again, and again, and may not notice a difference until the second of third treatment (lord help me.)

I also happen to have a very delayed response when it comes to the whole ‘passing out’ thing. So I felt like I was in another world and like I would fall down any second as I started the very long and torturous one and a half hour train ride home. On a 40 degree day I might add.

I felt very sore and sorry for myself by the end of that day. I felt emotionally exhausted. Another painful treatment, another $300, another doctors visit that I went through alone with no one to hold my hand other than a purple brain for a stress ball and the stranger that is my doctor (no matter how lovely she is.)

I feel like a test subject on any given day, still waiting for answers and having no idea what is causing these painful and debilitating symptoms. Enduring judgement and unsolicited advice left, right, and center. Everyone telling me what’s best for my health and trying to make important life decisions for me. Losing friends because I simply can’t do what I used to, and some people can’t understand that. Looking healthy, but feeling broken.

Thirty-one needles – a treatment for chronic migraines but a symbol for the ongoing painful treatments for a condition that can’t be explained, and the isolation that comes with that.

New Year’s Resolutions

What is a New Year’s resolution? Is it a goal to eat healthier, keep the house cleaner, spend more time with family?

Oxford Dictionary defines New Year’s resolutions as “a firm decision made on New Year’s Eve or New Year’s Day to do or refrain from doing something over the course of the coming year.”

But I think it’s more than that. It may sound cheesy, but I’ve never made a new years resolution unless it’s really going to mean something, possibly even change my life or give me an amazing experience I would have missed out on otherwise.

For the first time in years, I’ve made a resolution for 2020. My blog, my readers, and my friends & family have inspired me to write a book – a memoir of sorts. Something to raise awareness for something I’ve always believed is worth fighting for… Mental health.

The new year doesn’t mean anything to a lot of people, maybe just a chance to party. But for some, it’s a chance for change. A chance to start over. A chance to either put a crappy year behind them, or celebrate the amazing accomplishments from that year.

My health struggled to the point where I had to resign from a job and company I love this year. That wasn’t so good. But I still feel the need to celebrate this year. For the chance for change and growth. If I still worked in that job, I probably wouldn’t have the goal to write a book next year. I probably wouldn’t have found my passion for writing and sharing peices of myself in the hopes of helping others. I found my true passion this year, and I found hope and strength. To me, that is most definately worth celebrating.

So what did 2019 bring you? Even if it felt like a horrible year, think about the positives, think about what you gained, and spend your New Year’s eve putting the bad behind you, to wake up fresh and ready for change on New Year’s day.

Maybe it’s just like any other day. But you can choose to let it be a symbol, to be a trigger for change.

I have a goal that I’m going to make happen in 2020 – what about you?

How Do You Feel?

  • “Are your migraines gone yet? Maybe you’re just tense.
  • “Oh your struggling with fatigue? Man I’m tired too, it’s been a busy week!”
  • “Muscle pain? Probably from lack of exercise.”
  • “Have you tried NOT taking all those medications? Maybe they’re the issue.”
  • “How are you… Are you better yet?”
  • “Are you depressed?”

I hear a lot of questions in my day to day life that are based around my currently chronically ill body – some often accompanied by unsolicited advice. But I was asked a question today that really took be by surprise.

My doctor asked “how do you feel?” Yes, that’s a reasonably normal question to ask someone who is chronically sick, especially for a doctor. So I answered my standard “same old. Migraines have improved but still have good days and bad days health wise in general.”

“No, no. How do you FEEL? As in, how does all of this make you feel… Emotionally.”

Oh.

Well…

That’s actually a tough one to answer. I’m often asked how I feel, but physically, and usually followed by unsolicited and unhelpful advice or judgement. Like they’re asking out more out of habit than actually caring to hear the same thing day after day.

Is “I don’t know” a sufficient answer? If I think too hard about my actual feelings around my illness, my brain literally empties itself of all memories, knowledge and feelings. POOF! Gone.

I mean, for the last 10 years I’ve suffered chronic pain to some degree or another because of Endometriosis, while enduring 6 surgeries and countless traumatic treatments that were unsuccessful, all while having people ask me if I really NEED all those surgeries (because hey, I’m just doing it for fun right?) And then there’s the mystery illness that has taken over my life over the last two years that I like to call the WTF disease – which has caused no end of pain in probably every place on my body at some stage, caused fatigue so bad that I sometimes can’t even think past a brain full of fairy floss, hospitalised me in the ER twice because of suspected heart attack or stroke due to dangerously high blood pressure, caused me to have to resign from a job and a company that I loved… Oh and basically made me hate my body and everyone around me that asked stupid questions follow by useless and unsolicited advice.

So, I guess if you wanted me to really sum it up… I’d say I was pretty darn pissed off. And yet, also somehow grateful for the changes it has made in me.

Now there’s a mind-f**k for you!

But back to the point. My doctor bought about a very important issue that I constantly keep allowing myself to forget… my emotions and my mental health. I may not be mentally ill, but that doesn’t mean I should neglect my emotions and allow myself to become that way. But more than that, that not only myself, but also everyone around me, continue to overlook the profound effect these kinds of chronic illnesses can have on a person. After all, I’m not Super Woman… As much as I’d like to tell people that I am.

A person should always be viewed holistically – as a whole. Mind, body, and *insert your belief here*. I may be physically and chronically sick, but should I only be viewed that way? No, I really shouldn’t. And yet, I’m just as guilty of it. Sometimes when you’re drowning in one issue, and allowing everyone around you to drown in it with you, you forget to view someone as an entire human being.

I’m not just my pain or my illness, I am also my mind, my personality, my feelings. And having someone not only see that, but genuinely care about it, meant the world to me. I needed to be asked that, more than I often realise. People often tell me they’re frustrated for me, but don’t actually ask or realise that I am exactly ten million, five hundred sixty two thousand, seven hundred and one times MORE frustrated than they are… Because I’m the one living it.

I’m a happy, bubbly and always-smiling-too-much girl (to the point where I’ve got early onset crows feet,) but that doesn’t mean I’m not feeling other emotions on a deeper level, I just don’t always show it.

So, it’s time to be real. How do you feel?

The Importance of Sharing Your Story

Being open about your life isn’t easy, especially if there’s a stigma involved. However, it’s necessary. How else do you break a stigma, if not fearlessly sharing the parts of your life that you’ve been taught by society to keep hidden?

You may be wondering what the point is. If some people don’t understand, don’t care, or simply judge, why would you want to share that part of your life? Whether it be your struggle with mental illness or physical illness, the battle is equally harsh and personal.

Well… There’s a reason a lot of people have a huge lack of understanding about so many illnesses, and it’s because WE are scared to speak out about it. Yes, some people will judge. Yes, some people will get tired of you complaining. But, to put it simply… Fuck what they think! The world isn’t meant to be all light all the time. We are not only valuable when we smile or when everything is going well.

If you ask those people who are judging, those people who are getting ‘tired’ of hearing you complain, I bet you any amount of money that they’re spending their days complaining about their own issues, that are simply different from yours. Therefore, they can’t understand. That is not your issue, it’s theirs. That shouldn’t stop us from trying to raise awareness, trying to build understanding in a society where there is very little.

So many of my blog stories have been hard for me to write, and I have no doubt they have received quiet judgement. But more than any judgement I’ve received has been some amazing feedback from people saying how much they needed to hear what I’ve written about. And those comments, knowing I’ve helped someone in a similar situation, means everything. It’s the whole reason I’m doing this.

I had one friend share her story about diabetes. She was worried at first and wasn’t sure if she wanted to put her name to the story, but then overcame her fear and did it anyway. She said what a release it was. And because of that, not only has she possibly helped other people, but she also helped herself.

So I’m putting a call out to everyone who has struggled with a chronic physical or mental illness to come forward and share your story on my blog. Anonymity is completely fine and completely understandable if you prefer. But share your raw story for the world to hear, for the people who have had similar experiences to you. So they know, and you know, that we are not alone in it.

Help me to raise awareness and break the stigma. ❤

How Am I Supposed To Love A Body Like This?

If you want to include both my battle with endometriosis and with an autoimmune condition, I have been fighting my body, and medical professionals, for ten long years. Ten years of chronic pain, chronic illness, and chronic anger towards my body for never giving me any relief.

With Endometriosis comes not only extremely painful periods, but also back pain, urinary tract infections, diarrhea, constipation, nausea, extreme mood swings, pelvic pain all month long, fatigue, general malaise – and the list goes on and on.

With my autoimmune condition comes chronic fatigue & malaise, severe chest pain & palpitations (occasionally landing me in the ER,) tachycardia, panic attacks, muscle pain, joint pain, chronic migraines, brain fog, muscle weakness, rashes, and just a general lack of discomfort and feeling like shit to be honest.

So, how does one love their body, when their body only ever causes them distress and discomfort on a daily basis? It’s not easy – it usually feels impossible. I spend so much time pushing through the pain and illness every day, that I’m left feeling extremely pissed off and frustrated with my body. Why can’t you be pain free for just one day? Why can’t you let me live my life? Why do you have to take everything from me? Why can’t you give me a break?

One day it occurred to me, as I looked at myself in the mirror, that I had started feeling separate from my body because I spent all of my time fighting it. It was no longer a part of myself, but instead a monster that I had to slay. That one thought shocked me. This sounds ridiculous, but I stood there and had to touch my arms, my face, my neck, my stomach, and my legs, just to feel connected to my own body again. To remind myself that it’s a part of me and that I still need to love and care for it.

So started my self care regime. Pilates twice a week, higher quality skin and hair care, meditation, walking every day, and most importantly, attending each doctors appointment with the goal to fight FOR my body, rather than against it.

It’s not really enough just to dutifully take our medications, just to push through pain and deal with the frustration and anger, to let ourselves hate the very part of us that keeps us alive and who we are. Our broken bodies aren’t actually stopping us from living our lives – they’re giving us the ability to keep living it, even if limited.

So keep caring for your body, no matter how broken it may seem. Stay connected to it and keep loving it. Nobody can love and fight for our bodies like we can. ❤

The Social Anxiety that comes with Chronic Illness

I don’t trust my body – not even a little bit. I don’t know how I’m going to feel at any given moment. It’s unpredictable, to say the least.

Now, you might be thinking, “isn’t that the same for everyone?” To some extent yes, but not like this. I’m sick every single day to some degree. Maybe it will just be mild fatigue and a lingering headache, maybe my chest pain will get so bad I’ll end up in hospital, maybe my fatigue will leave me bed ridden… I have absolutely no idea.

I can’t make plans, not really. I accept plans with the usual “but it all depends on how I’m feeling on the day.” Because, let’s be real, I have NO idea if I’ll be able to make those plans or not. In fact, I’d say it’s more likely that I’ll have to cancel. Which fills me with no end of anxiety and guilt.

I love my friends, I love my family, I love my boyfriend. I WANT to spend time with them – and yet, my body doesn’t always let me. My Pilates instructor even took me off weekly lists, and assumes I’ll just turn up when I’m able.

This is frustrating for everyone, including myself. ESPECIALLY myself. I’ve seen friends distance themselves, stop inviting me anywhere, and just lost friends in general. They’re not bad people, they just didn’t understand and took my flakiness for not caring, and I don’t blame them one bit. I understand that chronic illnesses are hard for people to understand unless you’ve been through it, I really do. BUT, it doesn’t make it hurt any less.

This is the social battle every person with a chronic illness must go through at some stage. Do we go to that social event, knowing that we will pay for it tomorrow, and probably for days to come? How do we pick and choose which social engagements to go to each week, how can we spread them out? Why, oh why, can I not just have my body back so that I can go to ALL social engagements and not have to lose sleep over this petty shit anymore?

It really goes beyond that though. It becomes a deep fear to even leave the house. You start thinking about things no one else would. Like – how can I leave at any given moment if I need to without drawing attention? How far from home is this plan, if I get a migraine how long will it take me to rush home? If I go to that persons house, will my stomach rebel against me and leave me in a deeply embarrassing situation? Do I have all my medications, comfy clothing, water bottle? Then if we do end up going, it’s rare we even have fun because we’re too busy worrying or pushing through whatever symptoms we’re dealing with that day.

It is so damn EXHAUSTING!

And so, we stop planning anything. We stop even accepting plans that are further than a half hour drive from home, or any plans that might be over night. We simply stop making plans.

How lonely is that?