All posts in Téa

Whereby she doth appear to be off her rocker.

by admin on April 15, 2012 in , , , with No comments

Dear Grandma Chris,

It is hard to believe that a year has passed since I first decided to write you a letter on my birthday. It seems a little bit, well, nuts, to write to someone who doesn’t exist anymore. But because you were the only person who ever consistently remembered (or cared about) my birthday, and this week being forever associated with the beginning of the end for you…Oh, and the divorce being final in 2 weeks too … it is inevitable that I will struggle emotionally.

And boy, am I struggling.

So, even though I am sure the fact that I am writing to a ghost is kind of crazy, I don’t care. Because it’s the only way I can really process it all – to talk to you as if you are here.

For the sake of accuracy, we probably wouldn’t be having a deep and meaningful conversation. I’d probably be refusing your offer of food for the 8th time (Seriously, no, I just ate and am not hungry… no, I don’t want you to cook me a meal. And no, that is not code for “I just want cake”. Or biscuits. Or lasagna. I am just not hungry!)

I’d also probably try to explain to you that the political rhetoric you heard on talkback radio was more complex than it seems, and watch you rant about something that you had clearly gotten the wrong end of the stick about, with me trying hard not to laugh.

Because you and I both know that if I dared to smirk at you, even affectionately, I’d be in big trouble. I’d be yelled at, held responsible for every other member of my family and everything else they had ever done… and… well… yeah.

Don’t laugh at Grandma when she’s been watching Today Tonight, because she may tell you to fuck off and change her phone number.

Ah, the eggshells.

Right now, I kind of miss them. Because I get it now. You just held me to a different standard to the others: you cared what I thought of you. And it hurt you when you thought I was judging you. I wasn’t. You’re just piss funny when you’re angry.

It is only as I grow up and experience the complexities of adult life, relationships, love, decisions… and make my own complex decisions (and mistakes), that I have started to realise: love is not as simple as I thought.

Now I am the one who needs to be talked down from my own simplistic ideas about what it means. Because not only can people hurt you and love you at the same time, sometimes they hurt you because they love you.

Heh, the irony. I’m the one who got the wrong end of the stick this time and bought into rhetoric.

I recently made the decision to leave the kids in Perth and move to Sydney. The plan is to visit frequently and bring Angus back on alternate months (and the older 2 for school holidays), but because that is dependent on a steady flow of WA work (which is proving harder than we thought it would be)… it has been really tough.

Every day, I hope that I made the right decision.

You always appear in a dream to me, with the answer to a dilemma. If I need to find a solution, or a direction, or make a decision (I know it’s not really you – it’s just a representation of my subconscious trying to communicate important things I need to stop and listen to…), you are there to make me listen… and you told me to pursue this.

I hope you’re right.

Last year, I was at a point where I was actively dating, getting “the marriage” out of my system, and had my fair share of hurt. Well, needless to say, I continue to be baffled about men and this year, I am going to just… wash over that issue completely and just say that I understand the complexities of love. And that is all I am going to say on that subject…

Anyway, so, it’s my 33rd birthday. I know 33 is not old, but to be honest I feel kind of old and tired… mostly because I am not too good when I feel like I am in flux, because of my anxiety issues. I can’t help but feel like… I am back where I was at 16. And at least, back then, I had you to fall back on. Now, I am on my own, in a new place. It is terrifying. It is stressful. And I frequently struggle with the overwhelming feelings of failure that go with everything that has happened.

I’d be lying if I didn’t admit there were times in the last few months where I have, quite seriously, and quite clinically, considered ending it. Don’t worry, I won’t. Because fortunately (or unfortunately depending on how you look at it…) I am also stubborn. And proud. And would never, ever, do that to my children. So, I am stuck here, having to fight.

Damn.

Looks like there’s a bit more of you in me than I care to admit. You know, having no choice but to… just keep swimming. Let the shit roll over me and to just keep moving forward and trying to see the positives and the lessons in everything. And I will. And like the grief that I felt would never end when you died, it will get easier. I just have to put one foot in front of the other.

Wouldn’t hurt to feel loved for a bit, though, even if it was by being stuffed with food and told off for smirking.

I miss you. I love you. And I hope that next year, things are a little better.

High five St Peter for me,

Téa

Just roll with it.

by admin on January 19, 2012 in , , with No comments

I am a “public figure”. And you are too. We are all public figures and it’s changing the world.

In 2012 – in the age where private citizens are all living publicly through social media, we all have to navigate our way through the private/public divide. It’s weird, because, as my “profile” increases, I have had to grapple internally with the idea that what I say… actually matters. And that I have reached a point where I now have to play by a different set of rules.

Yesterday, I had a conversation with my ex-husband about what I say online. Like most people navigating through a break-up, we (I) have said things via social media (in the heat of the moment) that were not very nice. For the most part, I think we do OK, and we decided to mutually unfollow, unfriend… and move on. And for the most part, that works.

The other day, I called him a dickhead on Twitter.

It’s innocuous enough, right? I mean, people get called a dickhead every day on the internet. Hell, people call me a dickhead (and worse) on a daily basis! Almost everyone who shares on social media has done a heat-of-the-moment update… especially during a break-up. It’s certainly something most people I know have been guilty of from time to time.

But they aren’t me. Something has shifted where suddenly, I am held to a different standard. I don’t understand it, and I actually grapple with it a lot… but… I guess I have had to accept it.

When he initially raised it, I laughed. It seemed absurd that he would be so precious about it. Because he knows that 99% of the time, I don’t think he’s a dickhead. In fact, I think he’s a good person, a wonderful father and we are trying very hard to get along for the sake of our children. We don’t follow each other, we stay out of each other’s way for the most part, and the crux of my defence? How on earth is he reading it if we aren’t following each other?

He then said something that made me finally get it.

“Do you not realise you are everywhere?”

It was at that moment that I apologised.

Because, no, even though, intellectually, I know my Klout Score and see my blog stats and all those things… but… no… I don’t. I am just this person with a Twitter account who has always just tweeted like 5 people are reading. And now I find myself having to abide by a different code to others.

The reason I am talking about this discussion is not to justify my actions, rather to illustrate my main point.

There comes a tipping point between private citizen, chatting on the net… and “public” commentator. It’s something I have not yet reconciled, and up until recently, have seen it as a mere side effect of being opinionated. I’ve been blogging for 10 years. Writing on the internet for almost 20 years. I am doing now what I have always done, which is… just… write for my circle.

In 2012, however, things are changing. What I write spreads. And spreads quickly. No kidding… I get recognised on the street! What I say, more often than not, incites people to act, think… hold an opinion. It’s the nature of “influence”. It’s actually quite terrifying to think about, because (until recently) I have never actively sought influence, or recognition beyond my immediate circle… others just decided to listen along the way, to the point where I now represent a community.

It’s bizarre. I polarise, I have fans, I have haters. I get complimented & more smoke blown up my arse than many would want in a lifetime. I get insulted, I have had people stalk and physically threaten me. Even when people aren’t talking to me, they are talking about me: mostly positive, sometimes negative – most of it completely baseless (because… I really only have 3 close people who know anything about me, really…)… but…

My ex is right. Who wouldn’t be upset if they were called a dickhead by someone in my position? Where everyone in Perth, and beyond, had a picture of who he was based on shit that I have said in the moment?

It’s a really tough issue that I have not entirely reconciled within myself. That line between the sharing of my life that gave me this influence (after all, our married life was a big part of the content of this blog for 8 years!)… and realising that I also have a responsibility now, as a public figure, to behave differently.

Being held to a different set of standards to the “general population” is not necessarily a bad thing. It makes me want to do better and try to lead by example. Part of that involves now trying to avoid collateral damage in my personal relationships. Anyone that I date, marry, whatever, will be subjected to all of this… stuff. It’s weird, for sure… and it has taken me a while to even acknowledge that people listen to what I say. But it’s actually very difficult to be under the scrutiny of strangers, and even harder to know and accept that there are people that hate you.

Of course, it goes with the territory and I am certainly not complaining about it. But, for those who have tried to feed conflict in my personal relationships – think about things you have said online. And think about what would happen if people actually started reading it, picking it apart. Acting on it. It’s not an easy responsibility to have (especially when you don’t even realise people DO read).

I guess the first step is to acknowledge that there are different rules from now on, and try to still be the character people relate to. I’m trying to deal with this as best I can… and the first step is to apologise. And be more aware of the power my words have. Which is fucking AWESOME. I am so lucky. But, I need to do better.

Social Media is… storytelling.

by admin on November 14, 2011 in , , , with No comments

For those who have read my blog for a while, you may be aware that, despite working in the social media field as a strategist, and being a fan of Brian Solis and all the others who talk about “Engagement”… and often use those as part of my own work, to try and get corporations to take Social Media seriously…

You want to know what Social Media is for me?

Stories.

Sharing those stories, hearing those stories, living.

This video caught my attention over the weekend.

Try and watch that video without completely losing your shit. I dare you.

Furthermore, this is just one video. Of millions. Of people putting themselves out there, sharing their stories with the hope of maybe, saving just one other person from not having to live through the pain that they have.

That is truly revolutionary.

We often joke about Facebook and Twitter overshare. Lamebook is one of the funniest showcases of humanity at its… um… finest.

But you know? How cool is it?

I remember back in 2009, when I posted the letter I had written to my doctor detailing all of my symptoms and requesting action. At the time, I thought I might have had Cushing’s… turned out to be boring old Lupus.

But that letter? It inspired someone else to write one to THEIR Doctor and they got their diagnosis and treatment.

When I write about my struggles with various things like Lupus, the death of a loved one and the grief afterwards… or my divorce… the feedback I get is tremendous. I get emails saying how me writing about the end of my marriage has given someone else the courage to leave. I have had emails from other people who have told me that my blogging through palliative care and death has helped them cope a little better. Or how talking about my “invisible” illness has made them feel less alone.

And it’s all just one post. One story. And one video, like the one above.

So yes, by all means talk about marketing. Talk about engagement. Talk about ways to capitalise on social media. But don’t forget that the personal stories are what make this time truly revolutionary.

I am… OK.

by admin on October 8, 2011 in , , with No comments

I have been going on lots of long walks lately. Not only is it great for pain management and my insomnia, but it also allows me to do a LOT of thinking about various stuff.

I haven’t really had lots of time to reflect on where I am. The last few years were so focused on survival… I think I lost myself at some point.

But it has hit me that I need to step up. The divorce is being finalised, I am on my way to being back on my feet, I have my grief under control for the most part… and… you know… when I think about it…

I am doing pretty well.

I’ve been to hell and back the last few years, but.. considering… I think I am doing OK.

The only real remaining thing is my major, major issues with trust, abandonment & being a complete control freak trying to avoid being hurt.

It was cute grappling for control when I was a kid. It made me wise. It made me resilient and independent. It got me through a pretty shitty upbringing.

It was a barely tolerable idiosyncrasy in my 20s. Being hospitalised, writing lists for the Doctors rounds. Being self righteous and precocious.

It was my rescue in the last few years. Grappling for control in a freefall situation…it got me through.

But now? I think it has run its course. I don’t need to control everything. And as much as I lament about my daughter’s seriousness and wish she’d just relax… I need to remind myself that the world won’t cave in if I am not in complete control of every situation.

My control issues, particularly with regard to trust, is now a problem. It is a maladaptive pattern that actually does me (and others) damage. Every potential relationship I have had… it rears it’s ugly head when I am not able to control or predict the outcome… or, more specifically, someone ELSE has the control.

And I have realised today… that it just needs to stop. It’s not working for me anymore. I am not in danger. I am not in freefall. I am OK. So I can actually relax and relinquish control now, because… it’s OK.

The first step is acknowledgement, right? It’s easier said than done, I know. but… I’ll give it a good go.

Paddling like hell.

by admin on August 20, 2011 in , , with No comments

It’s been a while since I did a health-related post. Mostly because I have reached a point of sort-of stability, but partly because I have been going through a period of reflection: after the initial processing and grieving, I have been learning as much as I can, trying to really figure out that thing called “the rest of my life”.

It’s not easy being me. Granted, it’s not easy being anyone, really, but for me, I do have a particular set of hurdles that make it… kind of difficult. Coming to a point of acceptance that I will never be “normal”… that I will never be “better”… you know… that has taken quite a long time to process.

I have Lupus. I also have ADHD (and a few other things that overlap, but those are the main 2). And even though so many give their sympathy with regard to the Lupus (some don’t even do that…), as time goes on I am finding the ADHD so much more pervasive and hard to manage than the constant pain and the antibodies attacking my nervous and endocrine systems. I am somewhat at peace with premature death hanging over my head.

Yes, there are those nutjobs that think Lupus is just a result of consuming aspartame, or as a result of weight gain (um, no… weight gain is a symptom…), but they are, for the most part, marginalised by the broader community. And articles like The Spoon Theory have really helped the people in my life who don’t understand… to understand a little better. Or, at least get better at shutting their mouth around me.

As time goes on, I am finding it more difficult to get understanding around ADHD and its pervasiveness in my life, especially, the fact that I have needs, because… ignorance about it is just so…common. And, it is starting to manifest in frustration and stress… mostly because I wish people could know just how hard it is with both disorders, to simply get up, go to work and be a “normal” functioning person every day.

This week, I had a little bit of a meltdown. I have started a new job and somewhat glossed over the fact that my brain is wired a certain way. Even without the pain & weirdness of Lupus, ADHD alone is a minute-by-minute internal struggle. The thing that caused my little internal meltdown this week was… a project plan. In an area that I am an expert in. My first one. In my new job, where everyone was expecting brilliance.

It is so hard to articulate  when people say “ohhh yeaaaaaah it’s soooo hard to concentrate sometimes”.

Yeah. For a normal person, who can choose to snap out of it. Times about 5 million.

Much like hearing someone whinge about a pulled muscle when you live with ongoing pain… it’s insensitive to underestimate how difficult ADHD is. It’s not simply a matter of being unable to sit still, or even procrastinating. It is literally impossible to function sometimes… even if we want to.

It doesn’t go away.

It is extraordinarily difficult to get and maintain focus to complete tasks that others take for granted. Hyperfocus is my friend, and I have learned to channel it… sometimes. But when I can’t get there, it is like pushing shit uphill. Even on medication. Fluorescent lights buzzing. Conversations outside. People coming in to have conversations. The sun. The rain. Screen reflection. The sound of the coffee machine. The phone ringing. The stress of a deadline. The stress of wanting to perform well in a high-level, creative job. The internal monologue about how I am not good enough, smart enough, focused enough. Whether my hair is irritating me. Gantt charts. Paragraphs. Written reports. Dot points. Plans… you get the drift.

This is not normal stress. It is not a normal process. My brain simply cannot just focus when I want it to. It’s not a switch I can flip when it suits me… because if I could, I certainly wouldn’t choose to be not sleeping, agonising over something that is an easy task. And if there is stress, or performance anxiety attached, I am cactus. It’s a horrible, debilitating loop of interruption, anxiety and stress… no one would choose it.

It’s not as simple as just telling me to get organised. If only it was. And like I don’t have every single tool, 3 notebooks, an iPhone, alarms, a calendar and every other system in place… you know… because I am not fucking retarded. It’s an internal process that quite literally puts my system into a loop when stressed. I don’t suffer from an Attention Deficit. I suffer from an attention overload.

And stress makes me my Lupus worse. ha ha ha. Yay me.

I need to start being more assertive about my needs. Because I am clever. I can certainly write a goddamn project plan… I got through a Masters for God’s sake! But, it’s about putting the right setting in place to not make me come unstuck. And it’s really hard in an employment context, to make demands for an environment that everyone else can work in. And it’s a great environment… but I am struggling internally. I have needs. I guess I need to start learning assertiveness… but I am always afraid of being seen as difficult, or a drama queen, or worse, lazy or stupid.

I’m not. I work my arse off to appear normal… and I fail at that so often…

I guess I need to just get used to the fact that I have specific needs and it does not diminish my talent, or intelligence, or morality. And in many ways, it is more a gift than a hindrance (with creativity, non-linear thinking etc). But I also can’t help but think that it doesn’t seem fair that it is my role to educate… you know? If I was in a wheelchair, or deaf… it would need to be accommodated, right? So why do I feel so afraid to ask for help and understanding with ADHD? My employers are brilliant… and I don’t think it would ever be a problem… this is very much an internal issue with being seen as not worth it… I dunno.

Not only is that swan you see, looking graceful in the water against the tide, paddling like all hell… they also have pain in those legs, lost half of their babies in that water and are shot at by hunters. There is always that point where you can choose to stop paddling and just go where the tide takes you… or… you can choose to paddle.

And I choose to paddle. But it would be nice, if, once in a while, the tide would just change and give me a rest for a bit.

Thanks for reading my brain vomit :)

A Health Update.

by admin on February 7, 2011 in with No comments

It has been some time since I gave a “proper” health update. I have written about various aspects in isolation, but I thought I would do a proper update for those that have been wondering how I am doing.

I am doing… okay. It’s really hard to be sure, because there are a few issues that are concerning me. And the overlap between my mental health/stability, my neurological impairments, and my physical health seem to have so much overlap that it is very difficult to see where one begins and one ends.

The dominant theory (and it is still only a theory until properly determined with all the tests & response to treatment), is that I have Lupus & concurrent Hughes Syndrome. More specifically, the kind of Lupus that attacks my Central Nervous System. It’s not fun. I switched Doctors (again), and even though it is hard to get in to see him and it is a slow process, we appear to have nailed it. I have been prescribed a whole bunch of drugs, some with food, some without, some half an hour before… it’s a real juggle, but the medications seem to have a positive impact.

I am battling with some neurological issues – particularly with the return of mild seizure sensations, peripheral tingling and mental fogginess. My joint pain is manageable, and paradoxically, exercise seems to be the best thing for my pain management. My emotional stability is one thing that is a wild card here. It seems intrinsically linked to my hormonal cycle. I initially thought it was environmental (a good portion of it is I am sure), but my stress response is abnormal.

So, I am on ADHD meds, back on Cymbalta and, for the first time in my life, have committed to seeing a Clinical Psychologist to finally address & deal with a lot of the stuff that’s been going on. My mental health is so intrinsically linked to my physical health… and I had to acknowledge to myself (and others) that I am just not coping. Whether the basis for it is physical, environmental, behavioural… (I am sure it’s a combination of all three), I need to learn to deal with it.

My treatments are really, really expensive. Clinical Psychologist is weekly, I pay hundreds of dollars a month in drugs. But, it’s OK, because I am slowly starting to feel some improvement. I am exercising quite a bit too, which helps not only to clear the head, but is good for the natural endorphins.

I expect in the next few weeks to finally have a definitive diagnosis. I have had some grief around it. I initially felt relief and candour about the whole thing… because FINALLY after 15 years, I have a “label”. But now, the very real realities of what Lupus means have started to sink in. But, it’s a work in progress. My steroids are increased and we have a plan of action rather than discovery, for the first time in many, many years. I know I won’t be able to beat it, but I can certainly try to outrun it.

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