Exercise – The Miracle Cure

Exercise is great, isn’t it? It can relieve and prevent all matters of ailments, especially stress.

Have you ever been feeling emotions so wild and confusing that the only way to relieve them is through exercise? Go for a jog, a long vigorous walk, beat up the punching bag, get the endorphins pumping through your veins.

I admit, I used to be a sucker for it myself. There is no better and healthier way to relieve stress and help yourself to feel better. It truly is amazing.

So what if, for some reason, you couldn’t do that anymore? You’re frustrated or anxious, but you can’t run it off. You’re angry, furious even, but you can’t just punch the bag for a while. Is that a whole other kind of torture, or what?

Well… Welcome to my life, and the lives of so many others with chronic illnesses.

I often hear “maybe you should exercise more,” and man that hurts. A) if exercise could cure me, I’d be be spending every day doing exactly that. And B) anyone who’s ever suffered this kind of illness would know that exercise can quite often make matters worse.

Last night I was feeling the frustration of this. I was having one of those days where I felt down, I felt anxious, I felt angry, I felt a whole lot of things relating to the burden of feeling sick every day. I felt the weight of pushing through normal every day life when all my body wants to do is hide away and rest.

And you know what I REALLY wanted to do? I wanted to punch a punching bag or a good hour while I blast some music. Or go for a long run that makes you feel exhausted in the good kind of way. But the sad fact is, the only ‘sporting’ activities I can do at the moment are Pilates, Archery and short walks. I’ve found a real release in Pilates, it does take my mind off a lot and allows me to care for and strengthen my body, rather than fight it every second of every day. And Archery is also a great distraction, plus shooting an arrow at a target can release some pent up anger 😛

But it’s not really the same. Not for the tumultuous emotions you can feel at any given moment when every moment out of bed is a physical effort, and when you feel isolated and maybe even a little judged.

I just want to go for a run, but it will hurt later. It will cause the next few days to be worse than they need to be. To put it simply, fatigue will be kicking my ass, and those physical symptoms that were causing my stormy emotions in the first place will be ten times worse. So what’s the point?

That being said, exercise is great for so many health conditions, mental and physical, including your heart health and relieving anxiety. I used to walk every single day before all of this, and I loved it. If you can exercise, you most definitely be doing it! But also try to have a little bit of empathy for those of us that can’t at the moment. We’re not being lazy, we’re just struggling more than you can see.

Photo by Fitsum Admasu on Unsplash

The ‘C’ Word

It feels a bit strange to be writing this on my way to work. Like something so terrifying deserves a different setting. But when is the right time to talk about a cancer scare? I suppose there isn’t one.

So here goes nothing!

Just over a year ago I had my first real cancer scare. I didn’t tell anyone at the time, except my boyfriend. Not until after I knew it definitely wasn’t cancer. And even then I didn’t let him in on how scared I was or what I was really going through.

After a visit with my Endocrinologist, she suggested I take a 24 hour urine sample. Yes, it’s as gross as it sounds. The hospital gave me a giant bottle filled with a little bit of acid, and for 24 hours straight I had to collect my urine every time I used the bathroom. I used an old (but clean) ice-cream container before pouring it into the main bottle filled with acid. It even requires you to follow a certain strict diet so that you don’t accidentally get a false positive, which wasn’t hard for me since it was mostly to avoid citrus and tomatoes, neither of which I like.

About a week later I got the call from my Endocrinologist – my results were positive for a very rare but aggressive tumour. Neither of us saw that one coming! She said she didn’t want to go ahead with further testing and scans until we had repeated the 24 hour urine test to be sure. Good lordy, it was even worse the second time because I had to do it at work without anyone noticing.

And so began my week of torture. I had actually planned a little 4 day trip down the coast by myself, just to rest and relax, have some me time. I did still have a great time, but waiting for those results while I was away was agonising! I was surprised by my feelings, I couldn’t figure out what I wanted more. To get a negative result, or a positive… As crazy as that sounds.

I’d already gone through 12 months of being poked and prodded by every kind of specialist, and by then so many doctors had seen my boobs (from ECG’s and Echo’s) that I felt like I could walk down the street topless and not give a shit. I’d had 2 trips to the emergency room, and officially got over my fear of blood tests after having them weekly.

I was beyond ready for answers.

Is that so much to ask? I’d gotten to the point where I didn’t care what that answer was, I just wanted it. Whether it be cancer or a skin eating bacterial infection, just figure it out. But that sane part of my brain still REALLY didn’t want it to be a tumour. A tumour that not only usually gets caught late, but is also hard to find. I was in two minds, and spent an entire week arguing with myself like a loony person.

And then I got that second call from the doctor that I had been waiting for. My test had thankfully come back negative. What did I do differently the second time? I stopped taking my vitamins for the test, just in case. And guess what? Something in one of them was causing a false positive in my results. My doctors exact words “I’m so glad. You really didn’t want to have that kind of tumour!” Phew!

So I was tumour free. How did I feel about that? Equal parts elated, and disappointed. I was back to square one, there was no longer anything this particular specialist could do for me. I was someone else’s problem now. I do have to give her credit though, she was very sorry she couldn’t help me. She said that she hoped I wouldn’t give up, and I thank her for that.

I learnt something that week. I’ve heard so many times “at least it’s not cancer,” yeah that’s definitely a plus. But I’ve had many people with chronic illnesses say to me that some things are worse than cancer… And I agree with them.

Did you know that chemo is used to treat other illnesses as well, such as Lupus? Some people with Lupus have to have chemo for the rest of their lives just to stay alive, there’s never an end or a remission, there’s just pain and sickness every day for the rest of their lives. Yes, cancer is so bad, but I don’t think it’s the worst thing.

Sometimes being sick and not knowing why can be just as scary. I’m terrified of the dark and have been my whole life, I literally still sleep with a night light (don’t judge.) I hate the dark because I hate not being able to see what’s going on, it’s a fear of the unknown. That’s my worst fear. I sometimes wonder if I’d rather battle cancer than go through this not knowing what’s going on.

That being said, I don’t ever wish the feeling of thinking you have cancer, let alone the disease itself, on anyone.

So that’s the story of my very real cancer scare at the age of 28. Let’s face it, in this day and age, it definitely won’t be my last. I just know that next time, I won’t shut people out and deal with it on my own. Sickness can be so isolating, but it doesn’t have to be ❤

I’m Just Being Me

I’ve had a few people ask if I’m okay, or check in with my family to make sure I’m not depressed. Apparantly my stories make me sound that way.

I assure you, that is not my intention and that definitely is not the case in the slightest. I mean hey, I’ve definitely had my low points. But who of us hasn’t?

I started this blog because I am happy and confident in who I am. I’m not afraid to be an open book and share my story if it means I could be helping someone else, to help them feel less isolated in their own journey if nothing else, or to help someone who hasn’t experienced these things understand them better. I started this blog to be undeniably real. Yes, my health issues have been a battle and a half, and I’d be lying if I said it hadn’t felt depressed at times. But right at this very moment, and in general, I’m far from it.

I’ve experienced a lot in my 29 short years on earth, mostly from a young age. But really I think that’s only made me more resilient. When my health went downhill, that opened up a whole different can of worms for me, and I didn’t really know how to deal. My first instinct was to aggressively and persistently fight to find answers, even to the point where I was fighting against my friends and family, and isolating myself because that was my sole focus. After that came hopelessness and I’d say a bit of grief too. I’ve even gone through the stage of anger. But then came acceptance, and along with that, freedom.

I’d even hazard to say that I’ve never felt more free in my entire life. I’ve never felt more alive, and I’ve never felt more in tune with the world around me. Physically I am weighed down and limited to what my body will allow me to do on any given day, and that’s hard. But mentally, I’m all good!

I’m not who I was two years ago, that’s for sure. But that’s a good thing. I’ve learnt to fight for myself, against everyone and everything if necessary. I’ve learnt that I am my best advocate, but that I could also use my voice to advocate for others. I’ve learnt to appreciate each good day and each good moment that I get, because I may be abrubtly bedridden again at any given moment. I’ve learnt to be kind, and how the simplest act of kindness can impact someone else profoundly. Most of all I’ve learnt to love myself first, and be patient with any limitations I may have, and just be happy with who I am.

I mean yeah, if you call that depressed, count me in! 😜 But in reality, I’m just being me!

Chronic Fatigue vs Tiredness

This morning I woke up and called in sick because I was too tired. That’s right, I was too tired. The actual term I used was fatigue, but when people don’t know the difference, it just sounds exactly like I’m saying “I’m too tired.”

With this lack of understanding in mind, I could have chosen to lie and make up another reason. But that’s just not who I am, I’m not going to do that to a manager and a company that trusts me, regardless of how it makes me look. Lucky for me, my manager is very understanding of my current situation.

Unlucky for me… Many other people are not. This is what the Mayo Clinic has to say about chronic fatigue.

“Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.

Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn’t relieved by rest. It’s a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too.”

This is what I have to say about chronic fatigue.

I’ve been struggling with this as a part of my condition for about 2 years. How does it make me feel? A bit sleepy, a bit lazy? No, it makes me feel bone crushingly exhausted. This morning when I woke up to attempt to get ready for work, taking a mere shower felt like the most physically grueling thing that I’d ever had to do. I was breathless, hunched over, and mentally forcing myself to make it through washing my hair. Good lordy, talk about a battle and a half. I would have plopped down on the shower floor if I could remember the last time I’d cleaned it!

I proceeded to crawl back into bed and try to convince myself to finish getting ready for work. It wasn’t happening. I proceeded to message my manager and go back to sleep… Which resulted in a 17 hour sleep if you include my night time sleep. Would you say requiring 17 hours of sleep is simply being tired? I literally slept for the amount of time that most people spend awake, after a reasonably chilled and relaxing weekend. That’s not ‘just tired’.

There are times when I’m walking somewhere with Aiden, a nice casual stroll, and I’m gripping and dragging down his hand as I struggle to get from A to B. His hand becomes my life line, and he is left dragging extra weight around. There are also often times that it affects my cognitive function, where I find it difficult to think or sometimes even speak. That is called brain fog (as explained in a previous post.) Sometimes it hits me so hard and fast that I barely know what’s happening.

Just last Wednesday I was hit so hard with fatigue and debilitating sudden sleepiness, that I couldn’t stand up during Pilates. Driving home from that sessions was borderline dangerous… Actually, not even borderline, it WAS so dangerous! Driving, a simple every day task that we’re all used to, could get me killed because of my fatigue. I find that genuinely terrifying to the point where I generally refuse to drive anywhere over half an hour away.

Occasionally my fatigue makes it hard for me to even eat, no matter how hungry I am. I could feel starving, but the second I put food near my mouth, my stomach and entire body revolts against me. How can it be too much effort to chew and swallow food?!

So please understand why I get irritable, please understand why it’s hard to hear “I’m tired too” when I’m struggling with that. Don’t get me wrong, being tired actually does suck in any situation, but it’s still not the same thing as being chronically fatigued.

I would also like to point out that this is just my experience with chronic fatigue as a secondary symptom of another illness. In other cases, chronic fatigue itself can be because of it’s own syndrome actually known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis (ME/CFS.) Fatigue in so many of these cases can be SO much worse than what I’m describing. I truly feel for anyone battling with that ❤

The Pharmacy Handbag

Okay, let’s be real for a second. My handbag doesn’t ACTUALLY carry the entire contents of a pharmacy… But it’s pretty darn close!

My handbag is probably a drug addicts dream (not trying to be insensitive, just blatantly honest.) The sad part is, it doesn’t even carry all my medications… Yep, living the dream!

While people often joke about how many medications I carry around, I’m not sure they realise that it’s purely out of necessity. I won’t give the full list, but here’s a quick run down on what I carry on any given day.

Five different pain killers, each different and each stronger than the one before. The milder ones are for my joint pain, but when I get a migraine I’m meant to start on the milder and work my way up until one is effective. This sometimes leaves me quite drugged up during a bad migraine, but c’est la vie! If you’ve ever had a migraine, you’d understand it’s not something you can just push through, these medications definitely are necessary. Along with that is an anti-nausea medication to prevent sickness during migraines.

Moving on to my crazy heart rate and the nightmarish symptoms I get along with that. I carry beta blockers to help control that and my chest pain, as well as Valium in case my heart rate is out of control and causing panic attacks. So what are we up to? Eight different medications so far?

I’m just rummaging through my handbag as I type this, and it’s a little bit terrifying. There are also the medications that I carry in case I get side effects from the medications treating everything else. This includes antacids, Buscopan, allergy tablets (this time of year is a killer for a lot of us, so that’s pretty normal!) And then I carry a little container with the medications and vitamins I need to take regularly.

Oh… And a bottle of water to take any of the above mentioned medications. *Face palm*

How exhausting to have to pack and carry and remember so many medications every day. How exhausting to have people look at you like you’re a hypochondriac or simply carrying around prescription medication for the fun of it. How exhausting to have people think you’re just a wuss and can’t handle pain.

I experience pain daily, I live in pain. I can handle it, because I’m used to it. Pain for me is like blinking for you, normal and a part of your every day life. When you see me taking medication for the pain, it’s getting real bad. When you see me taking medication for it, I’m usually at work or somewhere else far from the comfort of my bed, and I’m slightly terrified of letting it get so bad that I can’t even make it home. Trust me, it’s almost come to that many times before.

I often watch people on TV, see them doing things that everyone else does on a daily basis, see them planning multiple activities in one day without fear of any repercussions, fear of extra pain and debilitating fatigue. I see them staying awake past 8pm without feeling exhausted and wonder what that’s like. Even on holidays in Fiji, or planning any kind of relaxing holiday, I have to always be thinking about my health and putting that first. You want the truth? I’m as positive as I can be every day, but being completely honest, I hate that. I HATE being sick, because in a lot of ways, it’s preventing me from fully being me.

My personality is still full of energy, but my body is not.

So yes, I carry a pharmacy worth of medication in my handbag, and it is kind of funny. But it’s also for a very good reason.

Our Mistake? We both put him First

I’ve been putting off writing this one. Partly because it’s one of those pivotal moments in life… The moments that you only get a few of, the kind that changes you in literally the most profound way. That’s pretty darn personal! But also because it paints my boyfriend, Aiden, in a negative way. Though let’s be real for a second, he was definitely acting like an ass on this particular day! (Sorry Aiden)

I’ll start with this, before any judgments are made. For months leading up to this event, Aiden had been working insane hours. I mean 7am – 1am kind of hours. He had also experienced the loss of his grandfather. He was stressed, he was exhausted, and what he really needed was a day to just wind down and forget everything else. I, unavoidably and not by choice, almost took that day from him.

It was Anzac Day last year. We both had separate plans. Mine were to catch up with a friend I’d lost touch with, his were to go to the local pub with his best friend, eat, drink, and just relax.

My body had other plans.

We woke up early to take our husky for our usual morning walk. But a few minutes into that walk, I experienced sudden crushing head and chest pain, trouble breathing and debilitating fatigue. In Aiden’s defense I should point out that I am no stranger to pain or illness, so masking it has become quite easy for me, especially when I’m scared. And man, was I scared! However, I think my struggle was still somewhat obvious. Especially when I called a nurses hotline when we arrived home to find out the best course of action. That’s not something I do on any given day for no reason at all, so really should have tipped him off!

I stood on his balcony while he played a game on his phone, and I spoke to a nurse about my symptoms. I explained that I had been experiencing hypertension for the last few months, and then explained what I was feeling right in that moment. She calmly explained to me that I needed to go straight to the nearest emergency department, and that if I had no one to take me, she would organise an ambulance. I cried while talking to her, I very rarely cry. When I got off the phone, I took an extra couple of minutes to calm myself and walk back into Aiden’s room, the mask of composure.

What happened next actually is kind of funny in a ridiculous way. To this day, we do laugh about it.

When I walked back into Aiden’s room, I asked him to take me to hospital. His response wasn’t exactly what you would expect… He told me he had to “take a quick shit first.”

Okay, I’ll roll with this. Let him do his business and then we’ll head to the hospital, no problem! So I calmly got dressed and waited. And waited. And waited. Forty minutes later he came back into the room and asked me how long we’d be at the hospital for and if he could take a shower. At this point I just stared at him. I mean, really?!

He got the hint. No shower. Off to the hospital we go! When we arrived at the ED, I was quickly sent to the fast track section, which Aiden kept pointing out was the ‘it’s all in your head’ section. I swear he just jokes a lot, he’s not actually that much of an asshole… However, on this day, it did get on my nerves. I was sent to that section because I had been in the ED a couple of months before for a similar reason. Basically they just needed to make sure I wasn’t dying of stroke or heart attack, and send me on my way.

Here’s the weird part. As I lay there, getting bloods taken, strapped up to an ECG machine and a blood pressure monitor, I wasn’t thinking of myself at all. I was doing what I was told by going to hospital, but I wasn’t really thinking about me. I was thinking about Aiden. I was worrying, stressing, that I was ruining his day off to relax. The ENTIRE time. That’s insane isn’t it? I’m lying there getting tests done on my heart to check for any abnormalities causing this sudden crushing pain, and I was thinking about him.

I was overwhelmed, and I could see him getting agitated as the time passed. That’s not normal for him, he’s normally so patient and supportive. So that really worried me, and I HATED that I was aggravating his stress.

And then the moment came. The doctor came back and said my blood test to check for heart attack had come back normal. He explained that occasionally that could happen and that sometimes it doesn’t show until some time had passed, and asked if I wanted to test again just in case, in the unlikely event, I was having a heart attack. In my overwhelmed and anxious state, I missed the part about it being unlikely and really didn’t know exactly what he was asking. I was also mostly focused on Aiden as he stood in the corner and looked at the ground. He was pissed off at the situation before I had even answered. I said yes to the blood test anyway, for my own peace of mind. And you know what, he would have done exactly the same if it was his health on the line. I looked to him for help before I answered but he was looking at the ground, thinking about himself. So I made the decision that I knew he would if the roles were reversed.

After the doctor left, I asked Aiden if he was angry, and he said no (bullshit answer.) He then said the one comment that snapped something in me. He said “I do think the 2nd blood test is overkill though.”

… … … … REALLY?!

And that was the moment. I’m VERY patient, I rarely go off at anyone. But in that moment, I did the only thing I could do. I told him to “fuck off.” I told him to fuck off and that I’d call my mum to come get me, and then asked him how much I owed him for parking because I wanted to owe him nothing for that day. I was furious, I was hurt, and I was profoundly changed. I realised in that moment that I was putting the wrong person first.

The funny thing is, Aiden is the one who has been trying to drill into me for years that I need to put my needs before anyone else’s. That no one would look out for me like I could. He’d been trying to instill that in me, and he was the one who’s actions forced me to put that into practice. Since then, I put myself first, and I realise now that it’s not actually selfish to do that… It’s imperative.

As soon as he left the hospital I cried, and the whole next day I continued. A dam had broken. I barely spoke to Aiden for 2 days after, and when I did talk to him I told him he would never ever treat me that way again. That I wouldn’t be forgiving the next time, and that if the roles had been reversed, the situation would have played out VERY differently. I refused to tell him the conclusion of my hospital visit. If he’d really cared to know, he would have been there. He’d lost that right, and I made sure he knew that. From that moment on, I went to every doctors visit and test alone. I became my rock.

That moment changed him too. He realised how his work had been affecting him, and that his actions and emotions were now hurting me too. So he quickly got his act together, and he has been insanely supportive and patient ever since. He’s shown nothing but pure unconditional love for me, and stuck by me through a hell of a lot! But while I have forgiven, I will never forget that day. That he went to the pub while I laid in the ED crying because I’d had to tell him to fuck off when I needed him the most. I’m going to be honest, that memory haunts me. If I need to go to the ED again, I’ll be going alone.

No one should ever be treated that way in that situation. Chronic illness, no matter how invisible, is valid and not only demands attention, but deserves it. But I do have to say that I am eternally thankful for that moment, because it did change me for the better. It awoke a fight in me that has pushed me through this health journey.

Self care isn’t selfish. Putting your needs first isn’t selfish. You can care for others too, but no one can care for you or fight for you like you can.

Aiden and I both made mistakes that day… We both put him first.

Brain Fog Fury

Brain fog is a fickle and complicated symptom of many diseases. I don’t have dementia, so why can’t I remember why I entered this room? I’m 29 years old, why can’t I remember that person’s name?

Now, let’s be real, those things have happened to all of us. But imagine being in a Pilates class, and not actually FEELING like you’re in a Pilates class. Trippy, right? Let me tell you from experience, NOT a fun feeling.

Brain fog can mimic some mental disorders including Depression, ADHD, or Dissociation. It’s like being trapped, trying to grasp at something that should be so easy but just falling short.

This week has been a bad one for me. A three day migraine, constant chest discomfort, UNBEARABLE sleepiness, generally just feeling like aids (sorry for my lack of descriptive abilities at the moment,) and the real fear that these feelings may not pass. But the worst part of all, I’ve had several people ask me “what do you mean?” when I’m trying to have a conversation with them. It’s not their fault, I simply can’t focus enough to explain anything properly because I’m suffering from brain fog along with my other symptoms. Luckily for all of us, as I write this, I’m the most lucid I’ve been in days. Hallelujah! (…I should probably hire an editor.)

I’m definitely not used to people being confused by what I’m trying to say to them so many times within a few days. I make sense to my own addled brain, and I just can’t grasp another way to explain what I’m trying to say. Sound frustrating? That’s because IT IS! The worst part is, I can’t explain to anyone what I’m feeling without sounding looney, so I just go about my day looking and sounding completely spaced out and incompetent.

Brain fog is scary as hell. I want to be able to go through my normal every day life without forgetting what I’m doing. I don’t want to feel embarrassed when I can’t remember someone’s name, someone who I’ve known for 3 years. I don’t want to be constantly reminded that “you’ve already told me that, a few times”. I don’t want to be in Pilates having to mentally push myself like I’m Michelle Bridges from The Biggest Loser, just to get into position for a simple stretch! All because I’m suffering temporary migraine induced dissociation.

I don’t want to feel like I’m sleep walking through my life. Bad health has taken over my body, does it have to take over my mind too? Big events, special memories, they could all pass by in a literal blur, and there’s nothing I’d be able to do about it. I don’t get to choose when a flare up happens, or when that flare up will affect my cognitive function.

You know what? I hate that. I’m positive on most days despite my health battles, but today I get to hate it. Today I choose not to fight it, but to go home and rest. And that’s totally okay, because even superheroes need rest! 🤷‍♀️ 🦸‍♀️

My Mum is Mentally Ill

Back in the day, that would have been a hard thing for me to admit. If I’m being completely honest, it still doesn’t feel easy to say. Why’s that? Because I grew up in a time where mental illness was stigmatised. These days, it’s interesting to see that it’s become glamourised. How did that happen?! You blink, and everything changes. Suddenly, someone feels sad or stressed, and they instantly self diagnose with depression… What the f*ck?!

I was ten years old when my mum became ill. It still seems crazy to me that I was one of the first to notice what was going on. That’s right, the kid knew what was going on before the adults did! It took an extra year before they figured out what was going on and she was diagnosed with mental illness.

Now, to this day I still cannot tell you exactly what she was diagnosed with, it was a mixture of illnesses really. But I guess the easiest to explain is depression, as it’s the most well known.

While I was in high school, dealing with the usual high school shit, dealing with my mother going in and out of hospital, I received a hell of a lot of judgement. Because guess what? My mum is mentally ill. If she was physically ill, it would have been easier for everyone to understand. But at that age, how could I expect any more of them?

However, it still made me angry. I understood what was going on, so why couldn’t they? Why couldn’t they be more understanding and supportive? Because mental illness was still misunderstood in general and frowned upon. There were even a few parents that wouldn’t allow their kids to come over to my house anymore, that’s how bad it was.

I grew up very angry as a teenager. Majority of the time it was just my Dad and my two older brothers living in the house, while Mum was quite often in hospital. I was downright angry, lost, confused, anxious and quite often sad. I was a teenage girl growing up without her mother, and without the support she needed. There was a lot expected of me, it was my job to look after my mother. MY job to look after MY MOTHER. Now what sounds wrong about that statement?

My mum was ill, none of what happened was her fault. If someone with a stomach bug vomited, you wouldn’t blame them for something that they couldn’t help, would you? It took me a long time, and many sessions with a psychologist, to understand this. But what about the other adults? Why did they expect me to look after my mentally ill mother, and forget to support me or my brothers who were all teenage children? Because, again, all of this was misunderstood. The adults in my life did the best they could with what knowledge they had. That also took me a long time to understand. It also took me a long time to stop blaming myself. That was, by far, the toughest part.

So after all that, all that pain and heartache, how did mental illness become glamourised? How did it somehow become cool to boast about the self diagnosis you came up with when you cried last night? Is that depression? Not even close.

It took just 15 short years for me to see mental illness go from stigmatised, to glamourised. Well let me explain something, mental illness is not beautiful, it’s a bitch. It’s debilitating and paralysing for the person, and it’s terrifying for the people around them. In raising awareness, it’s important to know the difference between mental illness, and normal emotions. It’s clinical, it can’t be self diagnosed or self treated.

“Depression is a clinical illness. It’s been scientifically proven and documented that depression has a literal, physical effect on your brain. No ifs, ands or buts.”

There is a lot of confusion on where the line is drawn between sadness and depression, between stress and an anxiety disorder. But once you’ve seen it or experienced it, the line is obvious.
Suicide is in the top ten causes of death in Australia, and almost impossible to understand. I myself used to be guilty of seeing it as a selfish act. But it’s not, it’s an effect of an illness, and a serious one at that. One that affects way too many people. I’d say most of us know of someone who has died by suicide.

My hope is that some day everyone will start to see it for what it really is. Not beautiful, not cool, not a choice and not situational or fleeting. And most of all, see that it is just as important as our physical health. Stop stigmatising it, stop glamourising it. Just see it for what it is… Misunderstood, unavoidable, debilitating, terrifying. Even just as valid as cancer, and just as dangerous.

My mum is mentally ill. Take it from someone who knows.

Life of the Party

Once upon a time, I was definitely considered a party girl, even occasionally the life of the party. When I started at my current job, which is a construction company, that’s definitely how I was viewed. My first night out at the pub with the guys had me keeping up with them doing shots, and asleep on the train home. I’ve even been known to dance on table tops, and there was an occasion with body shots when out with some old work colleagues. It was all in good fun.

I could honestly say that I’d go out every single weekend to a pub or party, or a club on occasions – though I was definitely more of a pub or house party girl. I LOVED it, I loved dancing and I loved being lively and social.

So what happened? My health went down the crapper – to put it simply. I still don’t have an official diagnosis, but they’re looking at Lupus and/or Postural Tachycardia Syndrome. This all started at the beginning of 2018, and since then my party days have gone way down hill. It happened gradually, but surely. Now, even a few glasses of wine will leave me with a feeling of hangover the next day. More than that will take days to recover. Socialising alone is a lot more tiring than you’d expect, especially while you’re in pain, so I often have to avoid it. And dancing? My god, one song leaves me exhausted. Not that it stops me from trying, dancing like an idiot while singing loudly will always be in my blood!

I now often hear “oh man, you used to be the life of the party. Look at you now!” Yes… Thanks for rubbing that in. Much appreciated!

Getting sick with a chronic illness changes everything, you lose your sense of self. You grieve your old self. I wish with all my heart that things were different, that things hadn’t changed like they had. But this life, this chronic sickness, has become so normal to me. Though still not easy in the slightest.

But what have I learnt from it? Appreciation. I didn’t know what I had, when I had it. If I’d known then what I know now, everything would have been different. I honestly never ever would have thought that I’d be this sick girl, getting home to go to bed by 5pm, working part time and spending my days off in bed sleeping. Carrying a pharmacy worth of medication in my handbag. I don’t like any of these things, but I do like what I’ve learnt.

Never again will I take my body for granted. Never again will I take the people in my life for granted. Never again will I doubt what my gut is telling me when I feel that something is wrong. Never again will I judge someone else for something that I don’t understand. Never again will I give a shit what other people think, or get caught up in petty gossip and drama – because really, in the scheme of things, none of that matters in the slightest.

I’ve learnt who my true friends are, I’ve found passions I didn’t know I had, and I’ve learnt to see the beauty in every little moment that brings you peace. I may not be the life of the party anymore, or be a whole lot of fun all the time, but I’m living life to the max with a whole new outlook.

Love what you have, while you have it.

Migraine vs Headache

I’m going to paint a picture for you. It’s 7am on my day off, but realistically I’ve been awake for hours after a night of tossing and turning. This may be poorly written, and I will explain why. It all started around lunch time yesterday at work, when I felt some head pain coming on.

Like a good girl, I did exactly what my Neurologist told me to do – on top of my daily treatments, I tried Voltaren first. I waited, and waited, but things were only getting worse. The nausea started to kick in and so I did the next thing my doctor suggested, I took Maxalon for the nausea and Imagran (a specific migraine medication) for the pain. Again, I waited. My head was starting to become blurry and I decided it’s time to take a small break. So, I trudged into the kitchen to make a tea, realising the entire time I was simultaneously trying not to vomit and pass out. It was time for the last resort, the Panadeine Forte.

Yes, Panadeine Forte definately helped the pain, but it didn’t prevent the rest of the symptoms from making my life a living hell. After a couple of hours of medicating and pushing through, I had reached my limit.

Then comes the train home. Again, the entire time I was trying not to vomit, pass out or simply fall asleep from all the pain meds, and that hour long trip suddenly felt like 20 hours.

I then laid in bed for hours in the dark hoping to fall asleep but never quite getting there. Tossing, turning, and generally feeling like I’d drunk 5 bottles of wine to myself and then walked out onto the street and been hit by a truck. Have you ever felt so sick that you can feel it in your entire body and nothing will relieve it, even sleep? Yep, that’s a migraine for you. Every little sound in the house was making my brain vibrate and my eyes feel like they were being poked with ice picks.

Everything hurt, everything felt heavy and ill. It still does.

So why do I HATE when people say they have a migraine when they really have a headache? Because when people who suffer from chronic migraines ACTUALLY have a migraine, everyone else thinks it’s not that big of a deal, that your body hasn’t turned into a volcano waiting to erupt, that a Nurofen or Panadol will ease it so you can get back to work.

No.

Don’t get me wrong, headaches SUCK! But they’re not the same thing. They require different treatment, and they’re often not even close to being as debilitating.

So what’s the difference? According to Healthline.com, hadaches are unpleasant pains in your head that can cause pressure and aching. The pain can range from mild to severe, and they usually occur on both sides of your head. Some specific areas where headaches can occur include the forehead, temples, and back of the neck. A headache can last anywhere from 30 minutes to a week. The most common headache type is a tension headache.

What about migraines? Migraines are intense or severe and include other symptoms other than head pain. Such as;

  • nausea
  • pain behind one eye or ear
  • pain in the temples
  • seeing spots or flashing lights
  • sensitivity to light and/or sound
  • temporary vision loss
  • vomiting
  • feeling less mentally alert or having trouble thinking
  • seeing flashing lights or unusual lines
  • feeling tingling or numbness in the face or hands
  • having an unusual sense of smell, taste, or touch.

When compared with a tension headache, migraines are generally a lot more severe and often leave you bedridden. Some people even seek help in emergency. Treatment is complicated and sometimes ineffective, ranging from pain killers to Botox treatment – which I recently found out I qualify early for. Kind of a scary thought since I hate needles, let alone needles in my head!

Basically, comparing a headache to a migraine is akin to comparing a cold to the flu, or being sad to having depression. Not only is it not helpful to everyone else in understanding these conditions, but it’s also vaguely insulting.

Simply put, conditions such as chronic migraines shouldn’t be lessened, they should be shared and understood.

Do you suffer from chronic migraines and keen to share your story? I’d love to hear from you! contactlaura@laurainreallife.blog.