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! πŸ€·β€β™€οΈ πŸ¦Έβ€β™€οΈ

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.

Endo Facts

Recently I received feedback that my messages were great, but that I still hadn’t explained much about Endometriosis. And I thought holy crap, it’s time to get down to the point!

So here it is. What is Endometriosis? Endometriosis is defined as a condition resulting from the appearance of endometrial tissue (which usually hangs out inside the uterus where it’s meant to be) outside the uterus and causing pelvic pain, especially associated with menstruation.

To explain that further, this means that when a woman with Endometriosis menstruates, endometrial tissue sheds and grows in the pelvic region (like the bladder, bowel, ovaries and rectum. Or very rarely the abdomen, lungs or brain.) In short, it causes a whole lot of shitty widespread symptoms and pain, occasionally all month long if you’re really unlucky, like myself. In the later stages, it can cause infertility due to internal damage. It’s basically your body attacking itself during what should be a natural and harmless process for a woman.

I don’t know many people that are actually aware of Endometriosis, even women. Which surprises me because 1 in 10 women suffer from it, and that’s just confirmed cases! So many still go undiagnosed because women are brought up to believe that severe pain with their period is normal, or that they’re just bunging it on. Guess what, it’s NOT normal! And most definitely should not be tolerated.

There are 4 stages of Endometriosis. I myself suffer from stage 2, which is considered a mild form. It has spread far and wide, but hasn’t caused damage to any of the organs, but the implants are deeper into the tissue than stage 1. However, I do also suffer from scar tissue forming from the 5 surgeries I’ve gone through to treat the Endometriosis, which is also quite common. Guess how you fix that? More surgery! Fix one problem, cause another. *Face palm*

I’ll move on to stage 4. This is the most widespread. There are many deep implants and thick adhesions. There are also large cysts on one or both ovaries. In many cases, this takes a few invasive surgeries in one go to treat, and is likely to cause infertility without treatment. On many occasions, women with stage 4 Endometriosis don’t actually experience many symptoms apart from some period pain, so never realise they have it until they have difficulty having children. Whereas stage 1 & 2 Endometriosis could result in severe and debilitating symptoms. Who would have thought?!

Unfortunately, there is no cure for Endometriosis. Some doctors say having kids will rid you of the disease, while for some people, having kids brings on the disease. There is no rhyme or reason to how Endo acts or what brings it on and the symptoms are different in each and every person, so even doctors are still confused by this common condition. This causes huge delay in treatment. Which brings me to my next point…

Treatment for this disease is different in everyone. Some people fair quite well on the contraceptive pill, while others only respond to surgery. Some women even have one surgery and never have any problems with it again. In my experience, every hormonal treatment has caused nightmarish symptoms, including almost having a stroke. For now, surgery is my only go to – and because of the complexity of my condition, this happens almost yearly. For the future, after children, a hysterectomy has been placed on the table as the next form of treatment.

In conclusion, Endometriosis is a hellish condition that turns a woman’s life into a living nightmare simply from menstruation. I hope that sums it up well enough! Try to have compassion for a woman with this disease, they may be struggling more than they let on ❀

The Depo Darkness

I often hear men and women alike joke about women’s hormones. She’s angry, so she must have PMS. That’s hilarious, right?

It’s not often lately that I get really bad PMS, mostly I just get extra jittery and anxious. But now and then it really hits me, and I spend the better part of a day crying or just feeling really low. I don’t really see that as funny. Emotions are all valid regardless of the cause. More than anything, it makes me really feel for the women that deal with that monthly, or the women suffering through menopause.

That brings me to my Depo Provera disaster.

Approximately 5 years ago I was prescribed a treatment for Endometriosis after a surgery, in the form of a Depo Provera injection. This is a reasonably common form of birth control that get’s injected into your butt cheek (hehe), and lasts for 3 months. The main ingredient of this injection is Progestin, which effectively stops ovulation. This in turn also prevents Endometriosis from growing outside your uterine wall.

However, what my gynecologist at the time forgot to take into consideration was my sensitivity to medications, especially the hormonal kind. Within a week of getting this injection, I was too depressed to even make it into work. And guess what… There are no medications to counteract an injection that stays in your body for at least 3 months.

I proceeded to spend the next few months with severe insomnia – sleeping a maximum of 2 hours a night. Spending the rest of the night either tossing and turning or simply crying and wondering how I was going to get through this. Of course, I didn’t actually realise at first that it was this injection causing my sudden depression, no one had explained to me that it was a possible side effect. I was only 6 months into dating my boyfriend, Aiden, and we both started to believe that it was my relationship with him that was giving me grief. This caused a tremendous strain on our new relationship, and left a few of his friends that I’d just met thinking I was an emotional wreck, and rightly so! Let’s face it, that’s exactly what I was.

So what happened after 3 months? Well… turns out that emotional side effects caused by this injection actually get worse before they get better. And so, I spent the better part of a year severely depressed . Not even being able to work most of the time – and when I did work I spend most of the day counting the minutes until I could curl up in bed and hide again.

I kept everyone in that dark about all of this. My parents saw the severe anxiety and panic attacks it caused in the beginning, but no one knew the true extent of my depression until I broke down crying in front of my mum in a cafe.

I would like to take a second to point out that I very rarely cry, and I basically never cry in front of anyone else. It’s not because I’m emotionally unstable, it’s just generally not what I do. So my mum seeing me cry for the first time in probably 15 years… Well it really kind of freaked her out, to say the least. She finally saw what I was going through. But despite that, I still felt embarrassed to share this with anyone else. I often laid awake and cried while Aiden slept without saying a word to him about it, and I never let my friends in on the whole truth. No one saw the real darkness that was caused by one simple hormonal ‘treatment’.

Do you still think it’s funny when a woman is being hormonal?

Mental illness is no joke. When it’s caused by or coupled with hormones, to put it plainly, you feel like you’re losing your god damn mind! Imagine feeling perfectly fine one day, and losing all control of your emotions the next. This is a lot more prominent in women with conditions such as Endometriosis or Polycystic Ovarian Syndrome, but no one seems to talk about it. It’s a very real side effect, especially to so many of the treatments for these conditions. Do you see why I can’t see the funny side to that?

I’m not laughing, and neither should you. The seriousness of this needs to be recognised. Next time a woman is “just being hormonal,” stop and think for a second. That thought, that realisation, could save your wife’s, sister’s, mother’s or daughter’s life.

To all the women out there struggling, please believe there is light at the end of the tunnel. Speak out, get help and support. It’s 100% okay to need that πŸ’™

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

The Burden of Endometriosis

Now this is a hard one for me, especially posting that feature image. Everyone who knows me know that I’m not the type of girl to flaunt my body every chance I get. In fact, wearing a bikini makes me self conscious because of my surgery scarring. I’ve actually been asked before if I was stabbed. Well… Technically yes! But being vulnerable is important in raising awareness. So let’s do this!

Now these scars are very hard to see in the photo. But I have 4 scars for every laparoscopy. So that’s 20 scars on my stomach alone. While they are small and unassuming, each surgery comes with more and more unbearable pain.

I have stage 2 Endometriosis, which is considered a ‘mild’ form and I have had 5 surgeries for it since I was 19, with talk of hysterectomy mentioned for after I have kids.

And that is just for stage 2! My pain starts quickly and all month long, along with a whole list of other nightmarish and occasionally embarrassing symptoms. Now, in the spirit of being honest and vulnerable, here are some examples…

The last time Endometriosis grew on my bowel, I had diarrhea every single day. That was a fun one. Or there was the time that it was affecting my bladder quite badly. That caused almost constant UTI’s, and one time when I actually wet the bed in my sleep. Yep… That happened. Not my finest moment to say the least!

The saddest part, that’s just the tip of the iceberg.

Here’s another fun fact. Some women with stage 4, the most aggressive form of Endometriosis, don’t even realise they have it until they find out they’re infertile or they have further (possibly permanent) damage requiring several aggressive surgeries.

At least 1 in 10 women suffer from this debilitating disease to some degree. So why are we so afraid to talk about it? Why is it so unacceptable to miss work because the pain is just too much to bear that day? Why are we considered ‘weak’ by even other women because our symptoms don’t match their own common period symptoms?

More than that, why is this disease so misunderstood even by those in the medical field, just because it can’t be seen by the naked eye and because some parts of it can’t be explained?

Why should we isolate the women in our lives who are suffering, simply because we don’t understand? Well… Compassion doesn’t actually require understanding. Nor does support or kindness ❀