ADHD: None of the D’s stand for “dichotomy” [poetry slam style]

I know I’ve made this point before, but it’s not getting through.

Surely everyone subscribes to the idea that most illnesses are suffered at some degree of badness.

Severity.

You get a cold.

Sometimes, it’s the scratchy throat and sniffly nose version.

Other times, it knocks you for Netflix ‘n’ chills for a week.

Sometimes, you can’t even decide if you’re sick- have you ever had this?!

Wake up in the morning, slightmaybeperhaps off feeling in the tonsil region…

“Perhaps I just slept with my mouth open.”

“I hope Chris didn’t see.”

Fight off a headache or two. Feel a little more weary than usual. Think, “Ergh, s’pose I’d better rest or this thing will envelop me.”

It passes and you move on with your life. (Or you ignore your own advice because you’re an insane workaholic and next minute you can’t pronounce words with “m” or “n” in them.)

Take a moment now to ponder the “was that a cold or just stress or maybe allergies I don’t even know” equivalent of a chronic illness.

They exist – why would they exist any less than their acute counterparts?

But for some reason we don’t acknowledge this exists-necessarily-by-the-laws-of-statistics phenomenon.

People either have a chronic condition or they don’t.

My entire life (because of course, this is about me)

I have loved books, but hated reading.

I have identified as a space cadet,

a forgetful ditz,

a hopelessly disorganised victim of, “my GOD for a smart girl you couldn’t manage time to save your life.”

Yes, those things are part of my personality and labels won’t do anything to change that.

But now, I have this really cool avalanche of information at my fingertips to explain why I love and buy and hold and flip through and smell and display in my home books that I can’t read

like a diabetic collector of sweets.

Why I desperately love law and English and history and literature and Shakespeare even though

I am a fraud.

Because I finally figured out the source of a life-long tickle in the throat.

A niggling… of ADHD.

Nothing that will ever stop me appearing as though I function as well as anyone.

Not quite enough for special consideration or to get extensions or appear to others as though I am disabled.

But I sit here and I listen to the lecture three times.

Four times.

I read the book and the audiobook because the more ways you cram it in the more likely it is something will get through.

I sit here at 4:30am because to reach my full potential I had to take so many stimulants yesterday I’m still dosed up to the eyeballs.

But I unlocked what I knew I was capable of all along.

For a smart girl I did manage time I actually kicked time right up the clacker because that assignment took everyone else six weeks and it took me fourteen hours but it took me six weeks just to attempt to get into the zone.

To try and read and read again,

read again,

read again…

Six weeks of tears and tantrums and frustration and torn hair because my GOD the information in my brain is a miner

trapped

miles below the surface through systems of intertwining tunnels and the only hope of retrieval is a complex and unlikely aligning of the planets:

The moons of soy mocha,

the rings of dexamphetamine,

the asteroid belt of good mental and physical health,

the Gods of extensions and understanding family and friends and just the god prayed and begged for hope that nothing else went on that morning that took my focus for a moment because it won’t come back…

and finally

it comes together.

It’s stressful and it’s unpredictable and it’s worth it because the miner brings the diamonds to the surface

created under the pressure it’s a high distinction.

And it’s worth it because that mine is good for nothing else its purpose and strength and love is to produce that diamond.

And it’s there perhaps that the metaphor becomes less glorious.

But just when you thought it couldn’t get any more melodramatic,

this isn’t the only tickle in my throat.

I was blessed with a myriad of niggles.

A little bit of a heart condition.

A mild pain disorder.

Some food intolerance.

A weakness here, a tendency there.

I am like the Jack of All Invisible Chronic Illnesses!

The master of absolutely none, which is great.

So it’s never enough to call in sick or complain to your colleagues,

just enough to make it that little bit of a struggle.

Which is not so bad for a week but day after day I do have to say it will give you the shits.

Not literally, I actually have the opposite problem.

My entire life is a week of ooh I’m a little queasy does my ear hurt I think I was just dizzy I’m a little tired just a mild headache it’s fine better take it easy lie down don’t do extra work that burning you get when you think you feel a UTI coming on and you quickly try to catch it with eight litres of cranberry juice.

I’m allergic to cranberry juice.

 

So I don’t know, do I have ADHD?

I like to say

I am

(a bit)

ADHD.

No, I don’t have trouble holding down a job.

I don’t shout inappropriate things uncontrollably (only by choice.)

I don’t struggle with impulse control to such an extent as to alienate everyone around me.

Even those who love me most.

But there exists a potential framework for understanding the quirks and intricacies of my brain

and it helps me understand that it’s not because I’m lazy

or crazy

or the procrastinator from hell.

I just want

you

(everyone)

to understand that too.

ADHD: Why “labels” are good

Ah-hhheeeem.

[Epic movie trailer deep voice-over voice]

THIS WEEK on another riveting instalment of “Is this Real, or is this Hypercondria?”, poster girl Janie continues her journey right up the borderline between “functional human” and “certifiably disabled” as she discovers the potential real issue behind her studying struggles. Was she put on this planet to spout awareness about an array of unrelated and widely misunderstood medical conditions, or is this yet another doctor’s 15-minute answer to a mystery that no one… will EVER truly solve? STAY TUNED.

[Cue return normal voice]

Okay, even I wouldn’t watch that show.

Until now, no one, including myself and many many doctors of many breeds, has been able to explain why the dorkface with the OP2 has taken four years to complete one year worth of university study. This is a struggle that I’ve whined about a lot. The one thing that the professional opinions did seem to agree on was that I struggle with study more than I should. When the motivation was there in abundance, but the barriers were just too real, one of my GP’s decided that it was time to investigate possible deeper cognitive issues.

She referred me to a psychiatrist. He was the most stereotypical psychiatrist I have ever seen: stuffy, old, and extremely to-the-point. In all these years of bouncing from doctor to doctor across every specialty from paediatrics to endocrinology, never have I ever heard one phrase their diagnosis as a certainty. It has always been, “it seems you might have..,” “the symptoms suggest..,” “let’s try treating you for…”. But after no more than 15 minutes of speaking to me, very little of which was actually about my struggles with university study, Stuffy McCertainpants turned to me and said, “Your problem is Attention Deficit. Adult ADHD. I’ll give you a prescription for Ritalin, and you will feel the difference straight away. Your brain will turn on like a switch.”

I was stunned. “I’ll be able to read a book?” was all I could muster.
“You’ll be able to read a book,” he said. Without a shadow of a doubt.

There really is no sarcastic retort for how I felt in that moment. There I was, an angsty 22-year-old dork in an identity crisis because I was sure my most valued characteristic had been taken away from me (my brain), and 15 minutes after meeting me, this man was telling me that one pill would fix it all.

It did start to make sense. I’m stupidly indecisive, have poor time management, work best under pressure, and I’ve never been able to concentrate long enough to enjoy a book or read at all. I got through high school by cutting corners and relying on my ‘gift of the gab’ wherever possible. But the thing that shocked me the most is that the condition has been right under my nose all my life: my brother has ADHD, and I work with students with the condition for a living! How had my obsessive self-diagnosing processes skimmed straight over this one? Because, I concluded, even to someone with as much exposure to ADHD as me, I don’t fit the stereotype that goes with the label.

But that doesn’t mean that labels are bad.

When someone says ADHD, most people do think of the delinquent thirteen-year-old boy forever in trouble at school because he can’t stop talking to no one in particular while tapping his pen on the desk and forgetting what he was saying midway through a sentence. As a largely well-behaved adult female with a strong academic record (at least prior to university), I don’t exactly fit the bill. But a quick Google will show you that I’m far from alone. ADHD is not only alive and well in adult females, but is widely misdiagnosed – often, as just having a “flighty” or disorganised personality.

But all those misconceptions are a result of people being narrow- and/or simple-minded about labels and what they mean, not a result of labels existing altogether. So, the solution is to fight the misconception that labels are prescribed criteria set in stone only for indicating negatives in a person, rather than to hate on labels as a concept. I see many parents of students I work with who seem to operate under this fear – refusing to have their child seen to or formally recognised as having a particular “disorder”. Worse, I see adults, people I love, operate under this terrified state of refusal, of closing their eyes tight and shaking their heads and blocking out all talk of naming a condition for fear of the perception that there is something “wrong” with them.

This is the misconception that we have to address. Let’s contemplate why we have developed labels for medical conditions. Why must we give a name to certain combinations of symptoms? Why do we have to lump people with similar, but never identical struggles together as though they are not unique in any way? One word: understanding. We came up with a word for a cold so that we know what’s happening when our nose starts to run, and we know how to treat it. In the same way, we label ADHD and Anxiety and Depression and Bipolar Disorder and Mad Cow Disease all so that we can have some understanding of these people’s lives. How could we “raise awareness” without labels? And why do we raise awareness? To promote understanding. And understanding is critical to people who have any one (or more) of these conditions’ not wanting to strangle themselves every moment of every day.

I understand people’s contention with labels: that they don’t want to be defined by the condition as though it is all there is to them, that they restrict understanding to misconceptions and stereotypes, blah blah blah. All outweighed by the whole understanding issue outlined above. The real contention is the perception that anyone with a label has something “wrong” with them. But the issue there is with society, not with the concept of labels. Labels re necessary, people being ass hats is not. How to not be an ass hat, 101: recognise that characteristics of a person that also happen to be symptoms of a condition that has a label are no more or less a part of that person than anything else, and no more right or wrong than anything else. That is to say that my indecision, my inability to walk long distances, my mouse-brown coloured hair, my loud voice, my palpitating heart, my slow reading, my left-handedness, my food allergies, my warped sense of humour and my angsty-af approach to life are all equally a part of who I am, and equally unashamedly so. The fact that some of those fall under a label and some don’t is only relevant as far as it helps me explain who I am. I have ADHD in the same way that I am an extrovert. I have POTS as much as I am a Scorpio, an optimist, a “yellow” personality, an attention-seeker, a neeeeeerd, and a couch potato. Plenty of positives, plenty of negatives, plenty of could-go-either-ways; all me.

It breaks my heart when I have to work with children who would so benefit from the support and understanding that comes with a label. I’m just not sure whether to blame their parents, or the world around us.

Saying Goodbye to Glenda.

Glenda: ALERT SOMETHING’S WRONG.

Me: Mate.

G: NO LEGIT SOMETHING’S WRONG.

M: Sigh. Care to be a little more specific?

G: Nah.

M: Try pls.

G: IT’S A LIE HE ACTUALLY HATES YOU.

M: Look, there really seems to be a lot of evidence to the contr–

G: LIES. ALL LIES.

M: Right. You realise that, even if this is an issue, you being a lunatic is, like, not helping, right?

G: YOU KNOW WHAT YOU SHOULD DO YOU SHOULD JUST CHECK, LIKE JUST ASK. YEAH. NO HARM IN ASKING IF HE STILL LOVES YOU.

M: Oh yes, I’m sure the 967th time will be the char–

G: JUST DO IT BITCH.

M: FUCK OKAY.

***

M: …see? He loves you.

G: Lies.

M: Fuck you.

G: He’s getting real sick of you asking too, by the way…

M: I JUST SAID–

G: Muahahahaha.

M: YOU KNOW WHAT, SLAG BAG?! Say he does hate me. Let’s say you’re right. Would that be the worst thing?! He dumps me, I’ll be sad, we move on. What’s the biggie?

G: Isbadisbadisbadisbadisbadisbadisbad.

M: But-

G: Isbadisbadisbadisbad hehatesyourfamilytoo isbadisbadisbadisbad.

Sigh.

Meet Glenda. Glenda is a bit of a pain in the b. She is also known as the voice of my Generalised Anxiety Disorder (kind of not really an anagram), and the above is a conversation that I’ve had with the delightful cherub regularly whenever I’ve been in love with someone. Which is just fantastic because as if that whole saga [being in love] isn’t complicated enough without Glenda The Lunatic voicing her crazy-ass opinions through her intrusive and inconvenient thoughts.

She’s also the same paranoid hoe bag who feeds me ideas like the total certainty that is my boyfriend dying in a horrific inferno on his way down the mountain from work, and how awful it will be when I eventually sleep through my alarm one morning and definitely get straight up sacked despite how much my boss loves me.

Now let’s just get the part where I brag about old mate current partner and how wonderful he is with this right out of the way. He’s great. What a guy, puts up with this shit constantly. Endlessly appreciative. Love you babe. Champion boyfriend. ❤ ❤ xoxo

My point is that I’m on a little journey with old Glenda here, and sharing that is important. Because, as is always the point of my posts, talking about it is progress. Not just for sufferers directly, but through helping others to recognise Glenda when they see her. I feel like we have made some progress with the obvious, “I’m terrified of flying/open spaces/confined spaces/the world” kind of anxiety. But it’s time to broaden our horizons. We have to
learn to recognise anxiety as a society, in ourselves and others and in all its forms, for what it is: a curable, or at least manageable, illness. Instead, we are still stuck in this “you’re just crazy” mindset, perpetuated by the “clingy girlfriend” meme and Barney Stinton’s Crazy-Hot scale. We mistake treatable mental illness for a permanent personality trait, with negative connotations and no empathy. What up with that?

And now I’m going to get really real: The only thing worse than the ignorant non-sufferer is the ignorant sufferer. The genius going through life, totally crippled by the mental and physical manifestations of this disease, completely unwilling to admit that anything’s the matter. It’s time to get over yourself. Because how insulting is your attitude to the rest of us? I’m not talking about those struggling to come to terms with their illness, or those incapacitated by the vicious circle that is being too anxious to seek help (spare a thought for those humans, but also, this is why the rest of the world needs to get their Glenda-radar working). I’m talking about, “Help is for crazy people, I don’t need therapy.” Sorry, 1957 called, they want their social perceptions back. We know now that people aren’t crazy because they’re possessed by the devil. This isn’t the Salem Witch Trials. Admitting that you can’t stop thinking about the love of your life driving off a cliff will not invite an exorcism. Just a care plan, thanks to Medicare and this occasionally spot-on country’s public health system.

So I present to you: Janie’s I’m-by-no-Means-an-Expert-but-Thought-it-Might-be-Comforting-to-Hear-of-my-Experiences Guide to Saying Farewell to Glenda.

STEP ONE: Affirm her presence.

This one can cost you a lot of money in therapy. Although care plans are good. But I found it very comforting to spend a crazy amount of time getting to the bottom of why I was so anxious about particular things, or at all. Some may see this as unproductive, but I found that an explanation allowed me to validate my feelings. Then, I was able to be less hard on myself. Glenda, although misguided, is only out to protect me. Sure, she does so about as efficiently as Hitler fixed the world but her intentions are pure. All of her insanity exists for a reason: to protect me from something that has hurt me in the past. The avoidance of pain is a pretty basic evolutionary concept and therefore, quite the opposite of crazy. Coming to this realisation allowed me to be at peace with myself and Glenda, and accept her existence in my life, as opposed to doing the thought process equivalent of shutting my eyes tight and clenching real hard.

STEP TWO: Talk to her.

That’s right. “How to be less crazy: talk to the voices in your head.” Bear with me. Also I don’t actually hear voices. Just wanted to clarify.

The very concept that is acknowledging your anxiety as a second and separate person makes for an easy (okay, easier) transition away from them. For me, the biggest frustration with anxiety was that it was always inconsistent with what I knew to be rationally true. I can always see all of the evidence that my boyfriend loves me, but my anxiety continued to convince me otherwise. And the worst thing about anxiety is that it argues like a hormonal woman: based entirely on screaming you down as opposed to logical processes. It could never defeat the real, rational me using reason, but it could wear me out. But I started calling Glenda on it. “No, sorry, where’s your evidence? What makes you think that? What about all of this evidence to the contrary? Why doesn’t that get the same weight?” Eventually, I learned to trust my own rational thoughts, and slowly, Glenda starts to fade… Which brings me to step three.

STEP THREE: Get better at it.

Practice. Seriously, that’s it. If you were reading on eagerly awaiting the quick magical fix, I’m really sorry. But I swear this worked for me. It’s like they say about quitting smoking: each time, you get a little better at it. You go easy on yourself and you stand up to Glenda, one baby step at a time. She might still wear you down sometimes, when your resistance is low. And you do your crazy person dance and you let her come over you and once she’s done her thing, you apologise to the poor quivering boyfriend huddled in the corner and you try again next time. And each of those experiences is one closer to a time where you won’t need to think as hard anymore. It won’t take as much energy or as much forced conscious thought. You might not need a nap afterwards. And that will be progress.

But all of this is made so much harder when the world doesn’t get what’s going on. When the perception is, “fuck she’s a typical, crazy woman.” No no, she’s trying really hard not to be. Because she knows that the people around her don’t deserve it, and even more importantly, she doesn’t deserve it. She deserves patience, understanding and support. So be less shit, 2016. You’re better than this.

 

 

“Such beings do exist” – Dating Invisible Squared

This post in a nutshell: Why every person with a disability should take no less than a lover who handles every spoon with tenderness and compassion. Because I’m living proof that it is possible to be a full-time patient and a 10/10 catch. Not even sorry.

This poor bloke though. He didn’t know. When he saw and was attracted to (?!?!) that highly strung, overenthusiastic debating course presenter… he didn’t know. He observed her casual, cross-legged demeanour perched atop a table. She asked, “Any questions?” and he asked, “Are you single?” But the poor sod didn’t know. He didn’t see her mobility scooter hidden behind the stage. He didn’t notice the breaks that she had to take to catch her breath. He didn’t notice the fight in her face as she climbed the stairs to meet him, where he waited just to congratulate her on the two hours of droning debating drivel that he’d just found so endearing. “You were great,” he said. Not, “that was great.” “You were great.”

He didn’t know. He didn’t sign up for this.

It wasn’t until our first date, when he observed out loud: “You like to sit cross-legged on things.” I could have brushed it off. But I knew that that would have been the first deceitful domino in a long line of misrepresenting myself. So I forced myself to explain that bringing my feet up to be level with my hips was the only way that I felt comfortable sitting, because my body doesn’t do life very efficiently. I explained that it was a heart condition, and didn’t go into much more detail. He didn’t bat an eyelid. Instead, he explained similar struggles faced by his sister, and then moved on as though I’d revealed any old thing about myself.

I guess one could argue that I revealed myself long in time for him to escape. There had been very little lead up to this date, and this conversation took place early in the evening. The problem with that argument is twofold: firstly, we were both so disgustingly gaga over each other at this point (look, when two nerdlingers find each other, its hard to control yourself), that he was likely to tare down any red flags that may have cropped up with very little regard. Secondly, its not as though my brief summary of one of my many conditions did justice to the full picture of what it was going to be like to date me. In fact, I couldn’t have painted such a picture, because this was the first attempt I’d had at anything resembling a relationship since my diagnosis. I hadn’t been through this myself. I necessarily couldn’t have warned him of what was to come. Still, I could have tried…

The purpose of this post is not to outline how unfair this relationship is for him. A lot of the time, it is unfair. He doesn’t deserve a girlfriend who wakes him in the night kicking and throwing the blanket on and off or getting up to be an insomniac and watch Friends at 1am. He doesn’t deserve a girlfriend who, during the busiest and most stressful work week ever, landed herself in hospital instead of being there for him. He doesn’t deserve a girlfriend who made him feel guilty about being too busy to be there. He doesn’t deserve to always be on top, omg. The struggle. No one likes starfish lover. He doesn’t deserve a girlfriend who lured him in with her seemingly bright English brain, despite not being able to read or hold an intellectual conversation.

Except that that’s not all there is to me. I might be all of those things and I’m allowed to be damn sorry about it. Especially in those moments. But the reality that I’ve only just grown confident enough to accept is that anyone horrible enough to deserve all of that and all of that only… is not someone that I deserve. I might be a total physical and mental mess of a human. I might be anxious and nagging and clingy any whiny and obnoxious and stubborn and loud. I might be out of action as a functioning human most of the time… covered in cold sores or too exhausted to stand or too nauseated to talk or too dizzy to comprehend or too in pain to be pleasant… But every second of every minute of every day in this relationship, no matter what aspect of my conditions plagues me, I love like hell. I am understanding and patient and appreciative and fun and easy-going and snuggly. I am loyal and passionate and honest and I work so hard to be the best person that I can be for this crazy human who loves me because damn. He deserves it and I deserve him. I deserve this most beautiful, caring soul who by his very nature looks past the struggles and finds joy in caring for me without defining me or our relationship in that context. Its as though any perceived negativity surrounding my condition can be cancelled out by someone’s natured ability to just absentmindedly care for it all and think nothing more of it.

I’m not saying that I’ve found the one (although he has shown mighty potential #karaokeloversunite). What I am saying is that they exist. People who don’t do so by effort or even by conscious decision, but people who just as a matter of instinct take you as you are and love you. People who don’t even consider the pitfalls of your condition in any calculation of the good and bad in you or your relationship. They just worship the good and hold and care for the bad. Such beings do exist and no one with a disability, so long as you appreciate the crap out of them, should ever settle for anything less. You don’t deserve anything less.

So to the wonderful man who has restored my faith in the human race,

I don’t know what the future holds for either of us. I don’t know whether the last twopointfive months of total euphoria have been the start of something incredible, or just another one of the universe’s cruel plots towards the eventual demise of the lonely dork species. The one truth that I do have is that, even if you turned on me tomorrow, you’ve pulled me from a spiralling darkness of unhealthy self-worth to a world where I proudly won’t take anything less that what you’ve shown me is possible. A world where I recognise that self-deprecation and denigration to match a level of human that I think I have a hope of deserving is not what I have to do to find a partner in this life. A world where I’m strong in offering the true magnitude of the love, affection and adoration that I have for someone like you because I either the same in return, or I move on. With every bottle of Powerade that you thrust into my hands, with every bite of food that you force feed me, with every squeezing hug, with every anxiety-appeasing text message, with every medication reminder, with every gaga-eyed gaze… Every time you understand, reassure, comfort… Every time you unquestioningly accept every broken tangible and intangible element of my existence… You take a cloth to a fallen spoon and lovingly restore it. Regardless of where the world takes us from here, you’ve changed my life dramatically and for the better. I don’t know how to do anything else in return but love you.

xo

Tinder dates, brain fog, and the unknown

Oh hey, its been a while. Soz, I just don’t have the same inspiration to write unless something is the perfect balance of “this pisses me off” and “I can be witty about it.” 

Last week, in an unlikely encounter resulting from a demonstration on how Tinder works at a work dinner, I met a most endearing young man. Ironically, throughout my demonstration, I’d been dismissing the app as something far less than a place to meet a man of any sort of calibre (even by my standards). Next minute, I found myself talking to a 26 year old (age appropriate?!?!?!) Teacher/Journalist with three masters degrees on top of his B/Journalism and Grad Dip Ed. He’d worked as a producer at Channel 9 and at the school around the corner from me – this man is all of my dream careers in one, as well as being funny and quite charming.

Needless to say I was quite interested. We spoke several evenings in a row and at some point I discovered that he is also a published academic. When I asked what he’d written, he responded saying that his interests were quite varied, and that he’d written several articles from “[something boring about history]” to “the feminist entrepreneurialism of webcam sex”.

Come again.

Lets recap. This guy was already shaping up to be Janie’s custom creation Ken doll, and THEN he reveals that he has not only taken an interest in the pornography industry to such an extent that he’s written a 20 page peer reviewed article about it, but in doing so he has taken an approach to feminism which allows him to argue that exposing oneself on webcam for money is an excellent opportunity for women to be free and independent entrepreneurs *high five*.

*just imagine me pulling my clothes back on as they fall off at this point*

We’ll get back to Wonderman in a minute, but indulge me in a rapid segue here: I’ve never been a strong reader. I never liked it as a kid, I never really read books, and I could count on my hands the number that I’ve actually read from cover to cover. The Catcher in the Rye is my only claim to fame… the rest are all Roald Dahl or Janet Evanovich. Eek.

Despite this, I’ve always done well in English and History and Philosophy and all of those heavy reading subjects, so much so that I’ve chosen to pursue a career in teaching them myself. I guess I figured that if I could get through Year 12 Extension English with Sparknotes and audio books, I could get through teaching them the same way… Or I just did NOT think this through.

I guess I also figured that my reading issue was more of a distaste than an impairment.

Now that I’m at university (well, I am this week anyway – it varies), the demand for reading is approx. 4985932 times higher, both in quality and quantity. I try to take many of the same shortcuts. I don’t even bother giving an article more than a glance at the abstract unless I absolutely have to. I get by using “command-f” and searching for key words, reading other students’ contributions on the article on our discussion board, and if I really really have to know the content, then further reading is a whole big charade involving a lot of printer ink, highlighters, coloured pens, text-to-speech technology and involuntary naps (but actually).

Now comes the clincher: You would think that if I was ever going to be willing and able to give an academic paper a solid read, it would be the one written by Wonderboy about the camgirls. Amiright? I mean further to just being thoroughly impressed that someone would write on that topic, I was genuinely interested in the academic analysis of the same. Nerd + sex = my jam.

Needless to say, it didn’t happen. I got a solid couple of pages in, which, granted, is better than most efforts. But sooner rather than later, I find myself reading the same sentence so many times without absorbing the meaning that I either become frustrated and disenchanted, or somehow sick of the sound of a sentence before I’ve comprehended its meaning, if that’s even possible.

Its at this stage that I can no longer deny that what plagues me is more than a distaste for reading. I have so much motivation, I so want to read those articles- and not just Wonderboy’s. I do have a genuine interest in the academic material that I’m assigned but beyond that, I so want to be a teacher… I was so born to be a teacher. I’ve found fake report cards that I used to write for my parents with “Miss Burgess” written on the bottom. I used to make them “sit on the mat and be quiet” at the age of 4. In my work as a teacher aide, some teachers inspire me and others make me scream what I would do better in my head. I so valued my teachers in high school and I want to support young angsty people in the way that I was supported.

But I have dropped out and re-enrolled in uni courses so many times that I’ve lost count – I think, at this stage, I’ve actually dropped out of more courses than I’ve completed. I graduated high school with an OP of 2, placing me roughly in the top 2% in my state. I got into the hardest law school to get into in the state. Now, I am enrolled in a university course with no entry requirement. I study one subject at a time, and receive extensions whenever I want them. On a scale where 4 is a pass and 7 is a HD, my GPA is 4.71. I’m halfway through my 8th course, which means that in 5 weeks I will be where one should be at the end of their first year. This is my fourth.

Cognitive impairment is by far my biggest struggle.

Everything else that I’ve written about so far is frustrating and upsetting at times, but generally manageable. Physical limitations and the emotional challenges that come with chronic illness are no bother compared to any threat to the one shining glimmer of hope that this uncoordinated, practically retarded and socially inept little girl has: my brain.

The fabulous news is that there is one treatment left that I haven’t tried yet – a drug that will increase my blood pressure, hopefully improving the brain fog. The uncertainty is that it may not be my low BP that is causing the issue. In that case, it will be difficult to pinpoint what it is, and it may or may not be cured with my POTS- which may or may not spontaneously disappear altogether sometime between now and when I turn 30.

As you can imagine, this brings about quite a crossroads for me. I could be in this condition for the rest of my life. I could worsen. Or I could get completely better. The unknown nature of my condition makes it impossible to pick a future career with any certainty. The fact that I may not be able to be a teacher – both because I can’t complete the degrees and because I wouldn’t be able to function as one at this level of impairment – is something that I am only just coming to terms with.

Being ruthlessly logical, I should pursue something else and come back to uni if I get better. It actually seems stupid to continue pursuing anything that requires a university degree at this point. And I just don’t know where to go with that conclusion.

#staytuned #Janiemarriesrich

 

THE POINT IS HERE

Okay, I guess it coouuuuld be argued that when someone prattles on for six thousand words (total on the blog so far), that actually does more to hide the point than point it out. What can I say? I ramble. But surely I can at least expect more than: “Heart condition? What heart condition? My god you must be a terribly troubled human to be writing like this.”

So for those who so grossly missed why I started blogging, let me provide a summary:

***

Its hard enough living with any kind of chronic illness. Its physically demanding and emotionally draining all on its own. But by far worse than any limitation, any disability, any symptom; is having people not understand, or worse, misunderstand (and there is a difference) your actions. When I don’t help out when we move houses, when I don’t help with the dishes, when I forget your birthday. When the people you share an office or a house with every day think you’re lazy, crazy, useless, unfit and forgetful, its crushing.

That’s why I write this blog.

***

SEE THAT. THAT THERE WHAT’S BETWEEN THE ASTERISKS? THAT’S THE POINT. THE POINT IS THERE. ^

Here, on the other hand, is a fun list of NOT REASONS why I wrote this blog:

• Because I’m depressed.
  • There’d be no shame in that, but I’m good, thanks.
• I’m not coping.
  • This is me coping, dickbag.
• I think my illness is the worst ever and no one is worse off than me.
  • Pls see earlier post Struggle Street for you is Struggle Street for you.
• Because I really enjoy the male attention that I get by writing openly about my sex life.
  • I 100% do. Not sorry. Still not why I write.
• Because having some of my closest female work friends think I’m disgusting, stupid and immature for writing about my sexual frivolities was fun.
  • It wasn’t.

To be fair, I have to give a hella lot of credit to 99% of the people I’ve spoken to about this blog. You have all been so beautifully supportive and so many more people read it than I ever thought would. But a select few have decided (purposefully chosen word, ignorance is a decision) to take the most warped messages out of all this.

So, to the family friend who told my mother that I’m depressed, to the daughter of my co-worker who took Lets Talk About so far out of context that her Mum thinks I’m a sex blogger for giggles, to my step-siblings who had a go at me for not helping out on moving day, and to every other Tom, Dick and Wanker who feels the need to warn members of my family that I seem to be putting a bit much out there for comfort: you’re what I can’t cope with. You’re my biggest frustration, my worst enemy. You’re what’s stifling the thing that helps me by making me feel like I’ve done something wrong. Don’t worry, I’m too much of a stubborn bitch to doubt myself, but the next person who becomes the subject of your ignorance might not be so lucky with their character flaws.

xo

Lets Talk About

If you work with me or you were my teacher or you’re a delegate or my cousin or you’re friends with a parent of mine, or you just generally don’t feel comfortable knowing intimate details about my life, then you shouldn’t read on. And I mean that. If all you’re going to get out of this post is not being able to look at me the same way then rack off, – key message: being a sexual person is hard when your body sucks and it would be super cool if partners had a hope of understanding that. Hence why I’m talking about it. Off you go.

OR.

We could all be adults and recognise that this issue is as prevalent as any facing people living with invisible illnesses – in fact, it’s even more important to talk about this issue than most; its a double taboo. Not only are we fighting the awareness battle on issues relating to sick people who don’t look sick, but sex (oooooh) is a taboo on it’s own. So I’m going to talk about it and I’m not going to hold back because I either have a lot of confidence or absolutely no shame. One of the two.

But I also recognise that just talking about it is actually real progress on the issue, because the whole problem is that sexual partners don’t (and can’t be expected to, with the current awareness) understand.

Last chance to turn back. There’s no judging me after this. I warned you.

******

So it’s no secret that I really like sex.

Well it might be, depending on how you know me. Sorry about that. I did warn you.

But I’ve always enjoyed and been fascinated by this physical experience, both as a form of expression of feelings for someone (whatever those may be #hatesex) or as something of a recreational activity (for want of a better term) with someone you know and trust (and more to the point, are attracted to.) I love the excitement, I love the chase, I love exploring what does it for people. I love batting my eyelashes, I love wearing pants that hug my child-bearing hips (I’m sure there’s a “what I think I look like” vs “what I actually look like” meme potential here but anyway, I can dream). Most of all, I love finding people on the same wavelength. I love finding people with that same eye-twinkling smirk and there’s chemistry and I love playing with fire with those people until it explodes. My point is that this is something that I love and genuinely enjoy in my life. It makes me happy. It means something to me in the same way that hobbies or other enjoyable experiences might mean something to other people. It excites me. And therein lies the problem.

Beta blockers work to stop the heart from beating too fast, which is great when you’re me and your heart is doing that all the time for no good reason. The main issue is obviously that there are some circumstances in which your heart ought to beat faster, like when you run or when you’re nervous or when you’re being bent over and pounded from behind, whatever. (Woah.) My heart won’t beat faster no matter what I do and therefore I’m basically Homer Simpson doing cardio. Because my heart won’t beat faster to circulate and oxygenate the blood faster, I become extremely breathless extremely quickly. Like.. gasping. But, not like, sexy gasping… more like, are you actually going to die gasping, which is really hot.

On top of that, all of my muscles are extremely weak and extremely easily strained. This is partially also because my body circulates blood about as efficiently as a sloth on smack does taxes, and partially because I generally don’t move if I can avoid it, and therefore the sort of glue bits that hold the body together have adhered to themselves (kinda like when you try to Glad wrap something and you screw it up). What this means is not only do I struggle to actually physically do some things because I’m just not strong enough (please don’t ask me to sit on you and bounce for the love of thigh muscles) (in fact being on top at all is really reserved for a very good day), but when I do try to do anything, it takes heaps more exertion for me to do it, and therefore I tire faster and the little heart that could(n’t) becomes a problem again. (In the same way that a stronger person might not break a sweat carrying a heavy load but a weaker person with the same load would be up struggle street and get more tired. Y’feel?)

ALSO. My endometriosis (or something else, probably some misplaced organs knowing my luck #tilteduterus, I’m on the waiting list for a laparoscopy to see whats up) causes me a lot of grief with what’s called deep dyspareunia – a deep pain during intercourse. Basically, the more “well-endowed” my partner is (teehee), the more sex begins to feel like having my spleen rammed with a sledge hammer (less teehee). And nothing gets your heart rate up (or is supposed to) like desperately trying to push through that feeling for the sake of your poor partner who landed this chick who talked such a big game and then wound up fucking like a brestless starfish. Hur.

In the context of a relationship, this all isn’t so bad because you can have the whole understanding “this is how not to kill me” conversation and, you know, it’s not exactly sexy but its kind of romantic and that’s all g. It’s the more casual encounters, where you’re trying to be all no-fuss so you kind of just go for it and then you get caught up in the heat of the moment and before you know it you’re completely limp on the floor gasping so hard for breath that you can’t tell your partner what’s wrong. While crying. Oops.

I’ve had several varied reactions to this but not one of them has been correct in a medical sense, and frankly few of them have been right in an emotional sense but hey that’s understanding and we’ll get to that. Everyone’s instinct is to grab my arm and yank me up like a rag doll, when getting up is precisely what I can’t and shouldn’t do at that point. I’ve also had people shake me, yell at me to get up or wake up, even give me a little tap on the cheek. And panic, everyone panics of course. Totally understandable, but let me help. My problem is that I’m not oxygenating blood fast enough, so help me get what oxygenated blood I do have to the most important parts of my body by lying me down and elevating my legs. I bet you can even make that sexy (although legs over shoulders is the worst position for the dyspareunia. Standing up is the best for that, but the worst for the POTS. There’s no winning.) Avoiding changes in which way up I am helps too, or at least giving me a second to adjust. Like it’s all very sexy when you want to hang me off the side of the bed or bend me over, until you pull me up and I black out. Even Christian Grey doesn’t do necrophilia.

Not only am I experiencing physical discomfort at these times, but more so I’m almost always extremely frustrated, embarrassed and frankly, broken-hearted. I’m a guitarist with carpal tunnel, a colour blind pilot, an actor with stage fright. No matter how hard I try, no matter how much I push through, often I just can’t do the thing that I love doing. And what’s worse is it’s not just me who winds up disappointed, and the thing that I love most about intimacy is pleasing other people. What I desperately need a partner to do at this point in time is be a human: no matter how casual the relationship, show me that it’s okay. Knowing me, I probably wrecked myself working to please you, so now, I need you to pick up the poor nymphomaniac and pat my back and play with my hair as I recover. I need to be scooped up and laid back on the bed, and I’ll desperately want you to finish off what we started but I’ll need you to pretend you’re okay with doing it without the riding crop (kidding.) (….. 😉 )

The issues are not only acute/short term either, and these delightful after-effects often cause even more issues when I have to let people down or turn people down and they think I’m just a shit bloke when really, I’m almost certainly cursing me more than they are. The sacrifices that I make to have sex at the best of times are crazy- I just don’t do any other activity that gives me this much grief. I will not walk straight… for days. Often a week. I mean, I don’t walk straight at the best of times but it will basically feel and look like I’ve run a marathon with no training. People will ask me why I’m limping and that’s just awkward. I’ll be extra tired, extra sore, and I’m super prone to irritation and infections (like UTI’s, not STI’s, just to be clear). Still. SEXY. Backing it up the next day is so great tho. That doesn’t hurt a bit. Oof.

Every morning when I wake up, I have a limited number of spoons. Roughly 1/3 the number a healthy person wakes up with. Every activity throughout the day costs me spoons. And sex… Given the opportunity, I’ll run myself into spoon debt. It cleans me out every time. Work the next day will be a massive struggle, any other plans that day would have to be abandoned. I can no longer think or move or function. Contrary to popular believe, I don’t do this with just anyone. I’m quite demisexual, I cannot and will not enjoy this experience with someone I’m not attracted to and I’m only attracted to those I like, love and/or respect. So if I’ve chosen to deplete my remaining spoons with you, please understand that you’re special. What I’m giving up to share with you is special, no matter how no-fuss I try to make it seem. But I will have so much to give to you and I will work until I physically can’t go on to make you happy and when that moment inevitably arrives, I’ll be heartbroken that once again it has come far too soon (pun intended). So if you don’t think and assure me that I make up for my limitations in other ways, you can, quite literally, go fuck yourself. 😜

xo

Why can’t we be friends?

Because you’ll never see me. And it won’t be because I hate people.

Okay, I’ve always been a bit of a hermit. I’ve always loved my own bed and my TV series and cups of green tea (decaf, of course) and sometimes, if I’m feeling really social, my Mum or my sister. I ride the wave of excitement.

But if the last few years have taught me anything, its been that my interests have undoubtedly been shaped by my abilities and limitations. My hate for sport, for example. There was actually a time when I played and enjoyed sport DON’T DIE of shock but actually, think about it. I’m competitive and aggressive – basketball was a great time. You couldn’t get me out of the pool or the sun when I was a kid, a total fish. I loved the beach until it decided to hate me.

I think my feelings towards being social and going out are much the same, now that I think on it. The only friends I have left are the people I work with in some capacity. More or less everyone else has given up because I am, completely frankly and honestly, a shit friend. I don’t prioritise friends and I haven’t for a long time. What I only wish people understood is that I don’t choose to have such a limited capacity for priorities. I wish people understood the sacrifices that I would have to make just to be a friend.

I’ve reached a point now at which I just click “maybe” on basically any Facebook event for a party because the reality is, I probably won’t make it. And I am sick as fuck of being that friend who constantly lets people down. Even this weekend, I did manage to make it to not one but two parties of two beautiful friends and I felt so good being able to do that, even though I was no fun at either, but it did result in my having to cancel on another friend tonight because I just couldn’t keep going. I will have the best intentions and I will want to be there and I will come up with any story under the sun to give you a reason that seems justified to normal people because I can’t explain that pushing myself will likely result in another assignment extension and another sick day off work.

My body works (or doesn’t) on a very strict and precise comedy of remedies and routines. One spanner in the works and everything falls apart. Eight hours of sleep. More hours of rest, so much rest. Every morning and night I have to force down enough horse-sized vitamin tablets to gag a snake, and enough food to stomach them all (nothing more fun than when I pull out my ziplock bag of pills at the dinner table). I have to consume around three litres of fluids – sports drinks and water. I have to complete about 45 minutes of tailored physio exercises (or as I like to call it, palates for the retarded challenged). I have to get a balanced combination of pea protein shakes, fruit and vegies and sugar into me. All fresh because preservatives hate me. Avoid the foods I’m allergic to. As soon as I start to neglect these processes – which is basically inevitable when I’m hanging in Brisbane all weekend for social events – my body completely crashes. It usually starts with cold sores (and my body doesn’t do these by halves, we’re not talking one nice little sore in the corner of my mouth, we’re talking full on herpes clusters here), tonsilitis, urinary tract/kidney infections, thrush, chest infections, colds or whatever’s going around, ear infections, heightened sensitivity to my allergies, worsened gastrointestinal issues; usually all at once and always in addition to more of the fatigue and muscle soreness. This starts a vicious cycle because the antibiotics that I have to take to fix the problems screw with the good bacteria as well, making me more run down. These take weeks to subside, all over a “big” weekend.

The worst part is not knowing. Because you want to attend the party/go out/see members of the human species, you do tell people that you might be there but even with the might, and even knowing that I’m sick, people often still seem let down. By my nature, I tend to attract people who don’t like to be screwed around. When it comes to social situations, I’m very submissive and chilled. I don’t mind where we eat dinner, what time we meet, what movie we see. And if I do have an opinion, I often don’t express it because I’m a bit of a compulsive people pleaser like that. I like doing what other people like doing because I like making people happy. I embrace that, that’s who I am and the fussy particular people of this world need friends like me. Except when I fail to predict my own ailments. And I don’t know what else to do. I don’t know when I’m going to be feeling unwell, all I know is how often that does occur. “Next time, just tell me you’re not feeling well and we won’t make plans.” But I felt fine an hour ago. And I’m sorry. I said I was sorry. And I shouldn’t have had to, but I did it anyway because I know this is frustrating for other people. But if I wanted to only say yes to people when I was sure I’d be able to make it, I would honestly never say yes. I feel myself existing in one-sided friendships where the other person initiates all the contact and it breaks my heart but I just can’t add to it because I already struggle to keep up with the status quo.

So to all of my remaining friends: I’m sorry and I love you. You’re all beautiful for hanging around even though it seems like I don’t care and for the most part you are all so supportive and understanding. I’m so lucky. I just wish everyone could understand like you.

❤ xo

Struggle Street for you is Struggle Street for you

Seems like a meaningless tautology but I’m going somewhere, promise.

This idea has always bothered me, not just in the context of my illness but in life in general: if you are suffering in any capacity, you’re supposed to remember those worse off than you, and feel better. Yes, some people and some circumstances do call upon that perspective. We’ve all needed to be reminded just how “first world” our problems are on occasion, and it certainly can be helpful and quite therapeutic to focus on what we have as opposed to what we don’t.

But I think that phenomenon also stands to make considerate people with a lot of perspective feel guilty for struggling with something genuine, like they’re not entitled to any indulgence in self pity because others might be suffering something perceived to be worse. I remember a friend crying on my shoulder one day and saying something like, “I feel so stupid, you’re dealing with [something] and you’re doing fine and here I am crying about [whatever].” I can’t remember what either of us were going through but I remember responding by telling them that they were stupid. But like in a really uplifting way. If something is upsetting you then its upsetting you. Feels are seldom if ever rational, and trying to rationally explain them is irrational. Denying their existence is irrational. For whatever reason, whether it be our life experience so far, our nature or our nurture, something causes you to struggle or suffer to the extent that it does and there’s often little that can be achieved by trying to tell yourself that rationally, you shouldn’t be so sad about it. Sometimes it makes you feel better and other times it makes you feel like a whining twit.

There are so many worse things in this world than my various ailments and I remember that every moment of every day, I really do. I’m so lucky. I have so many close friends even, who would consider their lives massively improved if they lived with my conditions instead of theirs. Hugely. And they seem so much stronger than I am! I swear, there are two girls in particular that I have in mind and I’m pretty sure they’re both secretly Super Woman disguised as a Spoonie and doing a really bad job because they don’t whinge enough. They’re my heroes. I admire them every day. I only hope that their internal struggle is not too far beyond what we see. ❤

But I’m proud to be game enough to admit that I indulge in self-pity quite a bit. I know full well and rationally that I have it pretty damn good in the grand scheme of things and I am so thankful. But I do struggle. I do suffer and it is a battle that few people understand or even perceive to exist, which is a battle in and of itself. And what I refuse to ignore is the fact that neither of those beautiful girls would ever dream of denying me my own struggle, nor would anyone else with a chronic illness of any severity. Nor should anyone with any battle to fight. And everyone’s fighting something.

Post-POTS

#pastey

POTS is a form of what’s known as Autonomic Dysfunction, or Dysutonomia. What that means is that something somewhere along the line (could have been the glange, could be genetic, could be things I’m eating causing inflammation, could be the hole in my heart, no one really knows) has damaged my autonomic nervous system. This is the system in the body responsible for sending all of those signals between the brain and the body at the subconscious level. So heart rate, heart rhythm, digestion, blood pressure, temperature control etc. etc. The things that you don’t think about. My autonomic nervous system is a bit drunk, and all of these systems in my body are effected. The best reaction that I’ve ever had when explaining this to someone was, “So its kind of like, ‘Oh, I’m hot. I might sneeze.'” Which is hilarious because without fail, I sneeze every time I step into the sun so she was quite on point.

POTS is the autonomic nervous system’s failure to control my heart rate and rhythm. Some things are explained by the POTS directly, and others by other forms of dysutonomia (conditions like irritable bowel, as well as random things like my sensitivity to temperature).

This diagnosis suggests that the profound fatigue issues are caused by the fact that my heart was working overtime all the time. At 103bpm average as opposed to a much healthier 70 or so, I was exhausted all the time because my body was basically running everywhere all day. No wonder it felt like it was going to implode. The great news is that beta blockers have gone a long way towards curing this particular aspect of my condition. I think its been long enough now to safely say that I no longer have completely crash days where I physically cannot get out of bed. Its definitely still a struggle, getting out of bed is by far the worst part of my day. Its really awful- and a frustrating paradox is that the better I sleep, the worse it is. But its doable, and once I’ve been up for a couple of hours I’m generally functional. Wohoo! That’s a win.

The POTS also explains the dizziness which 100% still exists, and if anything is worsened by the beta blockers. That’s the best way I can describe their effect: they’ve hugely improved the long term fatigue issue, but some more acute things are worsened. What the beta blockers do is obviously lower and control my heart rate, but they actually stop it from going faster in circumstances where it might need to, e.g. when I stand up (cue dizziness) or run (lol nope, so not a thing). I definitely can’t stand (especially still) for long periods of time or walk any more than 50 metres without kicking it up struggle street (this hugely varies day to day and walking at all is always an effort).

Other than that, the POTS diagnosis hasn’t made a huge physical difference – the biggest impact has by far just been having a name for what’s wrong with me. Belonging to a community of spoonies and being entitled to say that I have a heart condition when I need to has been a huge advantage. I have a disabled parking placard and I think I’m going to pluck up the nerve to get myself a key to the lifts at work. But mostly, being able to say that I have a condition generally makes people considerate of my limitations. And that really helps. ❤ xo