What Am I Truly Worth?

We all ask ourselves this from time to time, right? What am I, as a person, truly worth?

I think it’s something those of us with a chronic illness ask ourselves a lot more frequently, especially when those around us continue to place our value on what our bodies can do on any given day.

This past 12 months, since the breakdown of my last long term relationship, I’ve been on a lot of dates. No one could accuse me of not playing the field, of not going in search of that right person for me. I’ve grown through each person that I’ve met, become more confident and realised more and more that my value is most certainly not based on my illness. I’ve realised I don’t need someone to see me as valuable for me to have value. I’ve realised I don’t want someone like that in my life.

I have also realised, that someone can in fact love me for everything that I am, illness and all!

When my health was brought up as one of the reasons for that breakup, it shook me to my core. Being sick was not something that I could help, and it simply told me that me, as a person, was not enough.

Ha! How backwards is that?!

We don’t actually have a choice in what happens to our bodies. Whether it be chronic migraines, Endometriosis, Cancer, chronic fatigue… We’re all at risk of it. And there’s something to be said about that whole ‘in sickness and in health’ thing. There’s a reason it’s in wedding vowels. Because everyone, at some point in their lives, will become ill or get injured.

Does that change your worth?

No, it does not.

And if that person can’t stick by your through it, they don’t deserve to be in your life. They’re not throwing you out like broken trash… They’re actually setting you free from some shackles that you didn’t even realise were dragging you down. I stuck by someone when they couldn’t stick by me, and that’s simply no life to live.

As a person, I am genuine, kind, creative, patient… I’m loyal, honest, and I put my whole heart into every relationship I have. As a person, I’m worth a hell of a lot, and I don’t say that in a bragging way. I just know my worth now, even where others couldn’t see it.

What did I do about my illness? I took time off work, I took time to look after myself and rest. And then I built a life for myself around my illness, a life that has brought me more happiness than any one person, any other career, ever could.

My illness brought me a resilience and strength that a lot of people never find in their lifetime. As humans, we’re adaptable. So, I adapted.

That’s all we can do. Work with what we have, and continue to adapt.

If you’re sick, if you’re going through a flare up, just rest. It’s okay. You’re still so important as a human being, you still bring something amazing to this world.

You bring your heart, your one-of-a-kind soul that can never be replicated. That, in itself, is worth everything.

What you do, what you have done with the situation that has been dealt to you in this life, makes your worth grow above and beyond those who would judge you for it. Hold on to that resilience, hold it close… Because that, my dear, is the rarest diamond of all.

Fly Free

It happened gradually. So gradually, that I didn’t even realise it was happening until I was unwittingly set free.

Cages – used to keep animals and people controlled. These days you can find beautiful ornate bird cages, with intricate detailing so beautiful that you forget its original purpose.

That’s the kind of cage I imagine that I was in. It seemed so beautiful from the outside, that I barely knew it for what it really was.

I used to be a dreamer… I wanted so much from the world. I wanted to try everything, do everything, go everywhere. I wanted to travel to ancient and foreign lands, have hundreds of different careers, move to the other side of the country – I wanted to continue to learn and grow. I wanted to experience everything that this beautiful world had to offer.

So, why couldn’t I follow my whims?

I’ll start with a broader reason… Relationships. Now, before I go on, I’d like to point out that I’m not saying “I hate my ex – he trapped me in a bubble.” Not in the slightest. This isn’t a reflection on any one person, but a simple fact that relationships mean your decisions need to be made with consideration of another person…Duh! So, all those possibilities become smaller, especially for me as someone who has always put my partner first. I’m not sure that I’ll ever grow out of that. I would sacrifice what I wanted if I knew it would make them happy. I wouldn’t speak up – and that was the beginning of my gilded cage, a beautiful cage I built for myself. I got myself to a stage that I hardly even knew what I wanted.

Friendships – a lot more freedom there than in a relationship, but your happiness in said friendships is based solely on who you actually decide to become friends with. “Friends are the family we choose.” Clique, but oh so true! I had toxic friendships for years… They were clipping my wings and caging me in, and I didn’t even know it. Meeting my ex was a blessing in more ways than one, because he taught me the importance of standing up for one’s self, and the importance of cutting people out of your life who are a type of poison for you. Cutting out those people (as harsh as it sounds,) cut out some of the bars to my cage.

The next reason is money. Yep, so many problems in the world are caused by money. But I never grew up to put value on it. Money is to live, nothing more. At my first job, I watched my boss (a small business owner) place his happiness on how much money he made that day. I saw his darker moods, his scary temper, but I also saw his kindness and generosity when things were going well. His moods affected all of ours. It made us feel anxious, like we were walking on eggshells. If we didn’t sell enough that day, his mood would visibly sour.

And I didn’t understand, not at all. I mean, to a certain extent I would understand the stress of running a small business and the worry that can cause, especially during times as difficult as these. But not when every dollar and cent defined your happiness. If any of my friends or family came up to me right now, struggling and desperate for money, I would give everything I could to them, every cent if I had to. Because those people are what I value most, not money. This became an issue in my previous relationship, right from the very beginning. His ambition was inspiring to me, I was always proud of that – but his value on money didn’t align with mine. And I found myself feeling smaller and smaller, actually shrinking and using my cage to hide the pain that I felt like I was only worth the money in my bank account.

Now, that’s a terrifying thought. What’s even more terrifying is that I let it happen. I got in my cage and shut the door, because that’s where I felt safe.

I always felt the need to apologise, often laid awake at night anxious about money – anxious that my partner would stop loving me if I didn’t earn enough. But the greatest and heaviest expectations came from myself, from my own insecurities. I can’t blame anyone but me. I jumped into my half-built cage and hid there willingly. Not wanting to voice my opinion, not wanting to cause confrontation… Simply not wanting to lose him. For that, I would have done anything.

The next issue became my health… This is probably the biggest reason, hence being the reason for this blog. Feeling trapped in my own body, like a bird being shoved into a shoe box. I couldn’t breathe, I was scared to move, for fear I’d hurt myself or make things worse. I was flailing in the dark, having no idea what was happening on when things would get better. At one stage, I even got a false positive for a rare type of tumour – a test that took an extra two weeks to complete to find out that it really was false. That was the longest and loneliest two weeks of my life – because I made it that way. I didn’t lean on those who cared about me the way I should have. I caged them out, at the same time as caging myself in.

My health has been a trip! What started as what seemed like a panic disorder, turned out to be dangerously high blood pressure and tachycardia. It developed from there – fatigue, muscle pain, joint pain, chronic daily migraines, dizziness, malaise. I would work all week and sleep all weekend. My world shrunk further, and my health continued to build my cage towards completion. What I could do on any given day, relied solely on how my body felt. That thought was utterly suffocating. I craved answers, I craved my choices back, I craved understanding. What I found was loneliness. The kind of loneliness I’d never experienced before – I believed this was my fight… Me against my body, me against the world. So, I shut out the world. I let my fatigue drag me down, let me physical capabilities define me, let me value diminish based on the lack of income I had coming in.

The next is mental health. This is a big one for many people, especially at the moment. Our mental well-being is so important, and so complicated, that it has a way of grabbing hold of us with both hands and not letting go. Feeling good, feeling happy, has it’s own way of making us feel free. But when we’re struggling, we’re trapped in the M5 tunnel at peak hour – seeing no light at the end and feeling like we’re moving in slow motion. That’s exactly how my anxiety makes me feel, and I know a hell of a lot of people could related to that. My anxiety hit me hardest with my health. Approximately six panic attacks a day – yep. That panic had gripped my heart and I never seemed to feel any relief.

The day that my doctors discovered that my then-current panic attacks were caused by a physiological response rather than psychological… Well, it was somewhat a relief – and yet, somehow made me feel even more caged in. I felt even more trapped in what my body was doing to me – because not only was it affecting me physically, but it had now gripped my mind too.

The final bar to my cage was the concept of moving out. I always thought I’d move to WA, live with my friend. Go where I wanted, when I wanted. But being in a relationship changes your priorities, means having to compromise (which I was more than happy to do! Not forced to.) However, I wasn’t the one fronting the money in our goal to move out – which I felt strongly limited my opinion in the matter. So, I shut down further. Stopped speaking up, went with the flow, pushed my unhappiness and claustrophobia in the situation way down until I didn’t feel a thing.

My cage was finished – complete with a beautiful brass padlock. And I couldn’t blame anyone but myself.

Now, this isn’t meant to make me sound like a victim, this isn’t meant to say that I wasn’t happy in my relationships or friendships, or in my career, or in life. This isn’t meant to say that I have any regrets. Because I don’t – not one.

It’s meant to be about choice.

We all have it, whether we choose to admit it. We have freedom – we just need to actively choose to fly towards it, not hide in our seemingly beautiful cages. That’s where I went wrong – my choices, or rather ignoring my choices, had ultimately locked me away.

This year has been a shit storm – for everyone in the world. But during this time, I’ve found strength in sorrow, forgiveness in anger, empathy in pain. Most importantly, I found my freedom again. Because, ironic as this sounds, choice was forced on me. I was put in a situation where I actually HAD to think about what I wanted, for the first time in a long time. I was forced to drop my own expectations of myself, step back, and see what I really wanted, where I was really meant to be, all along. This year I became a dreamer again. I became a bird soaring through the sky instead of hiding in a cage.

In loss, I found myself. Self-love, putting yourself first, isn’t ugly – it certainly isn’t selfish. It’s necessary. I know that now. I built a cage for myself, and I’ve spent the last year tearing down my beautiful self-made prison.

My final statement is this – the reason my self-built cage was so ‘beautiful…’ That’s easy – it was beautiful because I was still happy. Blissfully unaware, as they say, but never truly content.

And now…? Those obstacles are still there, but not holding me back.

Now I feel like I’m really starting to soar.

Photo by Guillaume TECHER on Unsplash

We Need to Talk

Let’s talk about chronic pain. I mean, big whoop… Man up, right?

NO!

Let’s go for some empathy here… Ladies – imagine having bad period cramps all month long. Guys – imagine being kicked in the balls and being told that lingering pain is going to stick with you every day for the rest of your life. Ever broken a bone? That pain is here to stay! Got a bikini wax? Yep, you guessed it, that pain becomes chronic.

Now, that’s not reality (praise Jesus!) But let’s just think about a pain that we get, and then imagine it never going away… Ever.

Enter stage left – chronic pain! Enter stage right – medication overuse syndrome, causing even more chronic pain. A vicious cycle of pain.

Pain, pain, pain.

… Did I mention pain? 😉

It’s something so easy to overlook. I even did it myself for many many years, before the universe kicked me in the ass and said “Dear Laura, we think you could use some daily pain. Please see attached. Kind regards, The Universe.”

Slowly, but surely, I started to understand. And regretted every single day that I lived in ignorance, that I scoffed at people ‘complaining’ about their pain. Well, I got my comeuppance for that, let me tell you!

But in all seriousness, the affect that chronic pain has on all aspect of a person’s quality of life, as well as mental health, is a really freaking huge issue. It SUCKS! 

I’m a happy, positive, and bubbly human. But when that pain hits… BAM! I’m irritable, down in the dumps, and straight up pissed off. Not to mention the anxiety and panic attacks! Because being able to do everything I used to do on a daily basis would be pretty darn sweet, but apparently too much to ask.  *Face palm*

The frustration is real, it’s constant, it’s debilitating and confusing. Do I stay in bed and rest? Do I try walk it off? Do some stretches? Heat therapy? Magnesium oil? Pain killers…? All of the above (most likely?)

Let’s talk about loss. Every little thing that you stop being able to do, or stop being able to do as often. Loss of jobs, ability to exercise, ability to socialise, ability to drink a bottle of wine and not pay for it for a whole week… Let’s talk about relationships – the ones who have stayed and the ones who have left. The friends and family that patiently sit on the sidelines, trying to be supportive, while also incredibly frustrated.
And I feel for them – because we all want so desperately to have someone to blame, but lacking that element. Wanting to point a finger and scream at someone until all that frustration is out and you feel SO much better. They wish they could blame me, but know very well that it’s not my fault. I often wonder if I’d feel better if they did blame me – if that would ease the inexplicable and unrelenting guilt I feel.

What about all the times that I wish to God that I could work off my frustration and anger during a flare up by going for a jog or bashing the crap out of my boxing bag, but my pain prevents me… LOL – universe kicking us in the balls again, am I right?!

So, you lie there, resting, using any type of therapy possible to get through the pain, while suffocating in a plastic bubble of frustration and anxiety. You literally can’t breathe, can’t think, can’t focus, can’t even verbalise how you’re feeling to your loved ones – because you’re being thrown around in a huge dumping wave, thrashing, trapped in a reality that not only isn’t fair, but should never have been yours to begin with.

I’m in pain almost every single night when I’m trying to sleep – did you know that? My hips, my knees, my legs in general… Occasionally my elbows and/or my head. My medications make the day time pain less of an issue, but it’s always there. Simply being repressed by medicine.

Does that sound restful? Let me answer that for you… It’s not.

Guys, how are your balls feeling? Ladies, picturing that bikini wax? I hope you’ve kept that in mind while reading this. I hope it’s given you even a small amount of understanding for what chronic pain sufferers deal with almost every single day of their lives – all while attempting to act normal, for fear that everyone will abandon you if they knew the truth.

Because those people? They’re what keeps them going. Don’t forget that.

Fight, Flight, or Freeze?

Survival is an interesting thing. When faced with danger, do you fight, flight, or freeze? (Previously known as the fight or flight response.)

I’d say that I freeze, but a very surprising few people actually say fight. We usually think we either flee or freeze. But you’d be surprised just how often we fight.

My Dad said to me over lunch “If I had to go through that again, I’m not sure that I could.” And I told him “Of course you could. We do what we have to.”

“We do what we have to.”

Okay, let me just say, I was super surprised by how wise that sounded when it came out of my mouth. #superproud!

But there’s a lot of truth in it. We are faced with danger, with battles, an unfortunate amount in our lives. And what else is there to do, but to fight?

People with chronic illnesses call themselves warriors. It actually took me today to realise fully what that meant (I’m still surprised by my own ignorance, and I even have a chronic illness! Whoops!) It isn’t meant to sound arrogant, it simply defines how we have to fight every single day of our lives – fight against our own bodies, and occasionally the people in charge of our care. There is literally no room to choose flight or freeze – there is no option to run away, to freeze and do nothing about it. We are forced to continue fighting. Because if we don’t, who will?

So yes, people with chronic illnesses are absolutely warriors! I’ve witnessed a lot of people that have it a thousand times worse than me, but I never see weakness in them. All I see is an incredible amount of strength. They are never without some level of pain, never without fatigue. Always pushing through to live the life that they were given, and to create a life that they deserve.

What about mothers? Women who literally tear their bodies apart to give birth to their children, then spend the rest of the years of their lives fighting sleepless nights and constant worry. If that’s you – yep, you’re a fighter too.

Look at this year! This year we’re all warriors. We are all fighting for survival against a pandemic – against the stress and trauma that it is inflicting on us, on our economy, on our lives. So don’t tell yourself that you’re not a fighter, because you are. We’re made for survival, our brains are wired for it. And guess what… So are our hearts. Ever heard the saying “what doesn’t kill you makes you stronger?” (You’ve been living under a rock if you haven’t, just saying!) I truly believe that. Every loss, every heartbreak, every illness, every trauma, every accident… They all one have thing in common – they make us fight and they make us stronger.

We do what we have to.

Mic Drop: Obama Cracked On Everyone Applying For His Job - YouTube

Crossroad

Today, I find myself at a crossroad.

A year ago I started this blog with the genuine intention to help others in similar situations – to help them to feel less isolated. But also to help raise awareness for everyone else, to help them better understand the people in their lives suffering from chronic illnesses.

My intentions were pure, my goal simple. But honesty has a price, one I have paid many times over.

So, here I am. Still unemployed and using this time to focus entirely on getting my health to an at least manageable state before I jump back into work – so that I can give 100% of myself and my performance to my next employer.

I am a good worker, an ethical worker – but I am also a good person. I’m not bragging, just being real. After all, that is exactly what this blog is about.

Yesterday I received an email from WordPress, stating that my premium plan for my blog would expire in 30 days, and that I should renew before it causes any interruptions to my service. So now I find myself sitting here weighing up the risks of continuing, and the risks of not.

I think I lost a part of myself this year. I lost my good health, I lost people, I simply lost my way. But I also found freedom, independence, and strength. But I still find myself extremely fearful to continue losing, and what that could cost me as a person.

My blog is public, it’s well known. Potential employers could openly read it, as could potential new partners. Would anyone want to hire the sick girl? Would anyone want to spend their life with her? I always thought giving everything of myself was enough, that putting others best interests first and showing unconditional love was enough – but alas, it is not… Not in the real world. No matter how much we give, we’re still susceptible to loss and abandonment… To grief. We are all, after all, only human.

So, do I want to continue this blog, continue with my mission to help others, continue to feed my passion for the truth… And do I want to open myself up to more loss? Or do I stop things here, give myself a chance to gain instead of lose, or would that simply ring false?

I am sick, right now that’s my reality. Is there any point pretending otherwise? Is there any point trying to prove my worth despite my illness? Or should I simply prove my worth with my illness?

My confusion is genuine – I am stuck in two minds, as I have constantly found myself battling ambivalence over the past couple of years.

Where do I go from here? Do I continue being Laura in Real Life, or simply be Laura?

“I felt like I disappeared. Tired – like I wasn’t alive.”

Tonight I watched a movie on Netflix called ‘Brain on Fire,’ which is a movie based on a true story. A story that was written as a memoir by the girl herself.

Now, don’t get the wrong idea – this is not a movie review. This is about finding something that both terrified and intrigued me… Worse than that, something that made sense to me.

This is a movie about that fine line between a psychological and physiological disease. About doctors seeing a young patient, using the all-too-common line of “it’s all in their head,” and assuming it’s stress related, assuming it’s a mental health condition. Because young people never get sick, right? Because it’s normal to have seizures, right?

I have lost a lot from my own illness. The main one being that I lost who I was as a person – the energetic and bubbly woman in her late 20’s, living life while always assuming there was a tomorrow to live it again.

“I felt like I disappeared. Tired – like I wasn’t alive.”

Now, I’ve never experienced something so extreme like in this movie, not even close. In fact, aside from the chronic migraines, my brain is not an issue. But I think I can speak for a lot of people with chronic illnesses when I say that in that simple description was a sum of all our feelings about our illnesses.

“The tests are showing us that she is a healthy young woman.” Ha – we’ve all heard that before, right?

“I thought of all people, you doctors would be able to give us some hope. I mean, that’s your job, right?”

I couldn’t have said it better myself. However, doctors aren’t gods. They’re human beings, just like the rest of us. But, as human beings just like the rest of us, I’d expect a little more compassion when simple test results say one thing and that person sitting right in front of them is saying another.

All you need is one person, one doctor, that believes in you and sees through the test results, sees the true illness and beyond – to the person you were and can be again someday if they can find that answer and treat it.

The conclusion – the girl was suffering an autoimmune disease that targets her brain receptors called Anti-NMDA-Receptor Encephalitis. One doctor found it, by looking closer. By finding her.

“I’m the lucky one, because in a system that’s designed to lose people like me, thanks to that doctor, I was found. He found me.”

This was a powerful story to watch play out. One that truly touched me more than any movie ever has. Not in the way you blubber like a baby when a chick flick has a happy ending, but in a way that told me that movie had touched my soul – that I felt a little spark of hope that I haven’t felt in a long time.

I see myself as a burden, I truly do. But when I watched her friends and family, how they never gave up on her, I saw the truth. I saw how I would act if someone I loved was in that position, or in my position, and for the first time I truly saw and appreciated the people who have stuck my my side through it all.

I watched a story with similarities to my own from a different perspective. And many people without illnesses would benefit just as much, if in a different way, by watching the same story.

Pressing Pause

Hi guys,

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

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

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

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

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

Wishing everyone all the best until then. Xx

The Unexpected Side Effect of Chronic Illness

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

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

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

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

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

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

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

Our limitations, become their limitations.

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

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

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

…Easier said than done, right?

Thirty-one Needles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How Do You Feel?

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

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

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

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

Oh.

Well…

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

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

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

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

Now there’s a mind-f**k for you!

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

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

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

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

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