Feeding the Stigma

This is entirely my fault. For two years I have been suffering with health issues and chronic widespread pain, spending thousands of dollars on appointments, tests, medications, hospital visits and surgery. Unable to work full time or have a normal social life.

And apparantly unable to let my own family in on this huge life changing illness. Whoops! 🤦‍♀️

I made an assumption. A stupid one. You know what they say when you assume, right? I did that. I made an ass out of u & me. Or them and me, if you want to get technical.

My mum and dad knew most of the details, so I had just assumed they would have let everyone else know. I kept the details close to my heart, not wanting anyone to know how much I was really struggling, but hoping my parents would give them the general gist.

Apparently they didn’t. And so, two years after this all started, my brother and sister-in-law asked me why I had resigned from my job and what was going on with my health. When I mentioned my migraines, my possible Lupus diagnosis, my brother asked if that’s the reason I go to bed insanely early, like a light bulb just went off in his brain and everything suddenly made sense. Because guess what? Everything suddenly DID make sense! When you actually explain the facts to people, first hand, everything falls into place. Funny that!

Now, after that conversation, I realise that I’m guilty of exactly what I’ve been ‘preaching’ against! Not talking openly to my own family for fear of judgement and simply hoping someone else would do my dirty work hasn’t done me, or them, any favours. Sure, judgement is a part of life. So why are we so scared of it? I think that’s a hard one, because we don’t want to know the people we love the most don’t understand what we’re going through. That’s so damn isolating!

But they didn’t judge, even if they didn’t fully empathise with my situation. They just wanted to know, to understand. Because they’re my family, and they love and care for me. It seems so crazy to me now that I didn’t trust in that.

I’ve heard people say there’s no stigma with chronic illness, only with mental illness. But I disagree. There is a stigma, if there wasn’t I wouldn’t have been so scared of judgement. That fear had come from somewhere, and it caused me to hide what I should have been sharing as abundantly as possible. The stigma is based around chronic, invisible, undiagnosed illnesses. Am I making it up? Bunging it on?

Every time someone asks me how I am, genuinely wanting to know if I’m okay, my response is always “I’m okay. Same old.” I kick myself every time. What does that even mean?! Same old? REALLY? Just tell them the truth, that I’m struggling with migraines and I’m tired of pushing through. That I’m desperate for a break. That I’m trapped in a body that’s constantly in pain and all I want to do is live my life. That I HATE that I had to quit my job.

THAT’S the truth I should be telling. So why is it so difficult? My fear is damaging not only to myself, but to everyone else.

I’ve been totally honest with all these strangers via my blog – but not with my own flesh and blood. Maybe it’s easier to face being judged by strangers, than by those we love. Maybe it’s less scary – less hurtful. But I am causing harm nonetheless. I am unintentionally feeding a stigma.

Well… No more. I AM SICK. I am a barely functionally, chronically sick person. I go to bed at 5pm because I’m bone achingly tired and I’m trying to beat my migraine by going to bed before the pain gets too bad. I avoid social outings because I’m scared I’ll have to leave early which either forces my boyfriend to have to leave early with me or forces me to either explain the truth to everyone or make up a lie. I’m not sure which is worse. I can’t work full time because I’m physically and mentally exhausted from having to push through daily pain. I’m terrified of doctors visits because I’m tired of being told that they can’t figure out exactly what’s wrong, and I’m embarrassed every time I have to explain that fact to everyone else waiting to hear my diagnosis. I’m dead broke, partly because I can’t work enough and partly because doctors, medications and tests are SO expensive. I hide my pain and fatigue until it’s really bad simply because I’m tired of complaining. I hide pain from my own boyfriend who just recently said “how come you don’t get migraines on weekends?” Ha! Well, I do. I just medicate more and push through it more so that he won’t see the full extent of how broken his girlfriend is. Even though I know he’d understand, I’m scared that maybe one day he won’t anymore. I work every day to protect myself both physically and mentally.

I’m a sister, a girlfriend, a daughter, a friend. I’m a person – and I’m chronically ill. Welcome to Laura in real life.

The Importance of Mental Health in Chronic Illness

For most people with a chronic illness, there comes with it a care plan that includes multiple specialists. One of these specialists is a psychologist. This makes complete sense, given the toll it takes on the person, body and mind.

However, I hadn’t really been thinking much about it lately, just going along with the flow. Going to each doctors visit and every specialist like a good little patient, without really thinking about what each of them means in my care plan. I hadn’t received the answers I needed from any of them, so I stopped expecting anything from them, and in turn stopped reaping any benefits.

I just kept going to the appointments, adjusting my medications as instructed, doing whatever else they told me, in a numb like zombie state. I thought I had simply accepted my lack of diagnosis and was going on with life, but really I was avoiding feeling that constant frustration, disappointment and guilt.

With my health condition (which may or may not be Lupus) comes many symptoms and many obstacles – the latest being chronic (almost daily) migraines. Even if I don’t have a full blown migraine, I do have some degree of head pain or malaise. If you have never had a migraine, imagine something that caused you horrible pain… Like menstrual cramps or being kicked in the balls (sorry boys.) Now imagine feeling that pain on varying levels daily… It would become kind of hard to think about anything else, right?

That’s what I realised was happening to me as I sat in front of my psychologist after not having seen her for 3 months. I realised in all my effort to look after my physical health, I had actually forgotten something just as important – my mental health.

Now imagine this – I’m sitting in front of a highly experienced clinical psychologist, with 24 years of experience and a PhD. After approximately 40 minutes of her trying to find out what’s been going on in my life and how I’d been feeling, she actually laughed at how difficult it was to get an answer. She was so stumped that she actually laughed, in a very awkward way. I’d once been told many years ago by a different psychologist that getting information from me was like getting blood from a stone. In this moment, I finally understood her frustration.

Now, let me be clear, I wasn’t intentionally being difficult. I’m a very honest person. If I had known how I’d been feeling lately, I most definitely would have shared it with her. But the thing is, I hadn’t thought about it much. When she asked me how I’d been feeling, the only answer that came to mind was physical pain – which wasn’t actually what she was asking about. But when I tried to think about emotions in regards to any situation we had just been talking about, my mind actually went completely blank!

We did get somewhere in the end, she managed to get one emotion out of me and we managed to get to the root of it. All in the last 5 minutes – proving what a skilled doctor she is! But the entire session did actually highlight one major issue to me, and probably to her. That I was not looking after my mental health in the slightest. I was… I AM, so consumed by my physical health, and in my chronic pain, that I completely overlooked my mental health.

That is an incredible mistake – one I’ve never made before. I was genuinely shocked by this revelation.

This highlighted for me the importance of managing your mental health, even while in the midst of a physical health debacle – ESPECIALLY while in the midst of a physical health debacle. Both physical and mental health go hand in hand, and one most certainly can affect the other.

This brings me briefly to the topic of trauma. One would expect trauma to come in the form of a car accident or abuse – but it can also come in the form of an illness. During or after a trauma, people can experience a kind of ‘numbing’ effect (I don’t know the exact clinical term.) This is something I’ve experienced in the past, so I was deeply surprised that I had slipped up and forgotten to focus on something so important.

This is something that should be remembered not only for those suffering from any kind of chronic illness, but also for their loved ones. There is a VERY good reason why psychology plays a part in our care plans, and it’s not something we should be taking a part in just for the sake of it. If you’re going to look after your health, look after ALL of it. If you’re going to check in on someone suffering from a chronic illness, ask them how they’re feeling emotionally also. It may just be the reminder they need.

I don’t want to complain…

I don’t like complaining, and I don’t want to complain anymore. I really don’t. I don’t like seeing the looks on people’s faces thinking “she’s complaining yet again.” Seeing the looks of frustration and simply being ‘over’ hearing about my health issues. But guess what, feeling sick every day has become my life at the moment, and I didn’t choose it, nor do I enjoy it. And sometimes, I just need to vent and complain. Because it downright sucks!

Feeling sick or being in pain every day isn’t something I EVER wanted. It’s exhausting and frustrating to say the least. Especially when all I want to do is live my life, to be the bubbly and energetic girl I used to be. I’m a ball of energy trapped inside a failing body. I suspect this is a lot what prison feels like, an actual life sentence.

All that being said, let me rephrase my earlier statement. I don’t want to HAVE to complain anymore. You’re tired of hearing me complain? That’s NOTHING compared to the frustration I feel on a daily basis.

I can see it when people ask me how I am. They sound sincere when they ask, and I’m simply a really honest person, an open book really. So I answer them. “I’ve been better. I had a migraine all night.” And I see their eyes glaze over. They don’t want to hear that, they wanted me to say the perfunctory “I’m good thanks, how are you?” They want me to pretend so we can move on to more interesting topics of conversation, like hair and nails and which party they went to on the weekend.

So I started doing that. I started saying “I’m okay,” even when I’m not. Even when I’m home, achingly exhausted, dizzy, overcome with nausea and trying desperately to push through this migraine. I’m still “okay.” Every day that I work is a struggle. Staring at a computer screen all day under constant fluorescent lighting, struggling through fatigue and fighting off the pain with medication that is only going to cause worse side effects later on. But I still answer “I’m okay.” When I finally complain, it means I’ve really hit that wall of not being able to even pretend anymore.

But this tactic is damaging. It isolates those of us suffering with any kind of chronic illness, whether it be physical or mental. Anxiety or migraines. Depression or Chronic Fatigue. It applies to all illnesses. The less we talk about it, the more the stigma grows, the more people think we’re just bunging it on. It’s not good for us, and it’s not good for them. How can they understand better, how can they gain any awareness, if we’re constantly holding back what we’re going through?

That being said, we have good reason to hold back. Because of those people who don’t actually care to hear how we’re going, those people that instilled that fear in us.

You think I like the attention? Here’s the truth, I would give ANYTHING to not be sick anymore. If I wanted attention, I’d just run down the street in the nude, I wouldn’t need to be ill to get it. I’ve had to quit my job, a job that I loved that had become like a home and second family to me. I quit, purely so I could focus on my health and attempt to get it back on track. So that I could go back to living my life. It was not an easy decision, or a happy one.

If I just wanted attention, do you really think I would have done something so drastic? My complaints are annoying for you, but the reason I’m complaining is a LOT more ‘annoying’ for me. So remember that the next time my need to vent is a drain on your day. Remember that any time ANYONE with an illness of any kind is needing to vent. They’re struggling hard, the least you can do is endure listening to them, and maybe, just maybe, giving them some semblance of relief because you ACTUALLY cared. It’s not hard to be kind, especially if you just put yourself in someone else’s shoes for 5 minutes. Especially if you step out of your bubble and see the pain that surrounds so many people in the world.

Let’s be real. Speak up more when you’re struggling, break the stigma. Complain whenever you feel the need to complain. Vent, get it all out. Force people to hear you and to see the truth. Help them understand. If they get bored, if they don’t care… Well, fuck em! From here on out, I make no apologies for voicing my pain.

“If you gain 3 kilos, all your problems will go away.”

“I truly believe that if you gain 3 kilos, all your problems will go away.”

That’s not something I EVER expected to hear from a doctor. Especially a very experienced professor in Endocrinology, highly recommended by a few of my other specialists. Especially after I had explained in detail over the course of an hour that I had always been this shape and that the rest of my family was the same.

I’ve always been a skinny girl, and trust me, it’s not from lack of trying to gain weight. My diet has consisted of carbs and chocolate since I was a little girl. Pasta, bread, potatoes, bagels, rice, they’re all my favourite things! I’ll choose a burger or a pizza over a salad any day! And yet, here I stand, 172cm and 52 kilos.

Growing up I had several doctors ask me if I eat. And that ALWAYS confused me so much. Of course I eat, what a ridiculous question! In fact, I never stop eating! I graze all day long, and that’s never changed. Though when I look back at photos, I do see why they were concerned at the time. I was VERY thin.

But looking at myself now, I don’t think I look sickly skinny to the point where a doctor would blame all my health issues on a measly 3 kilos!

When my health first took a turn for the worst, I lost 6 kilos. I dropped down from 54 to 48 kilos. It was noticeable to everyone and I often heard people talking about how thin I’d become. But there wasn’t much I could do about that. My GP told me to eat whatever I feel like whenever I feel like it to try put the weight back on until I could yet my appetite back.

And I did. I became a huge fan of cheesecake, and relished in the idea of being able to eat it all day guilt free. And I put 4 kilos back on. Back to an average weight for myself. Awesome! Now if I could gain those extra 2 kilos back, it was really just a bonus, but no biggie for the moment.

So when I finally saw this professor, back at my normal weight, and explained all this, hearing him tell me that all my health issues would go away if I gained an extra 3 kilos brought up a lot of questions for me.

Why 3 kilos? If I’ve always been this weight but been healthy previously, why is my weight an issue now? Are you really allowed to promise me such a thing? Are you dense?

All those questions and more were running through my head. It was absurd to me! And yet, when I got home and mentioned this seemingly crazy doctors prognosis to a few people, they agreed with him.

WTF?!

Suddenly everyone around me was telling to me gain weight and then I’d feel all better, watching what I ate and telling me to eat more. Like I hadn’t spent years trying to gain weight with no success, like I could just force myself to shovel in more food, like my metabolism would just change in an instant. Had everyone lost their god damn minds?! I couldn’t figure out what on earth was going on.

But later on I realised. These people care about me, and saw me go from a healthy and energetic 28 year old, to a sick girl who barely had the energy to go to work, kept ending up in emergency, had shed 6 kilos in no time at all, and suddenly had a whole other list of issues that no one could understand or explain. And they hear me come home and tell them that a doctor gave me an answer, and they clung to it. I understand that.

What I don’t understand is a highly experience professor making false promises to a woman with health issues simply because it would hurt his ego to admit he couldn’t figure out what was going on. What’s more is that it’s dangerous for a someone in his position to ever do that without the relevant tests to back up that claim, and to rule out anything sinister.

Guess what Dr Dense, I went to Fiji and gained those 3 kilos, and not one thing changed (shocker.) If anything, my health has deteriorated in the last year since I’ve seen you.

It truly scares me that he dismissed me so carelessly. How many other people has he done this to? With a reputation like his, I like to hope it’s very few. But with a reputation like his, it makes it all the more dangerous if he was saying this to other people. Other people who might believe him and not look further into their health.

There’s two things I took from that experience. Doctors are human and make mistakes too, and second opinions are not only acceptable, but crucial.

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 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! 🤷‍♀️ 🦸‍♀️

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.