The problem with my head.

I plan to write a few posts about my health issues.

I explain this stuff over and over again to friends and acquaintances, and with some big recent developments I want to start sharing the info online.

Primarily, it’s to inform people I’m lucky enough to have care about me, I’m not trying to reach a wider audience but obviously this stuff ain’t a secret.

If you wish to talk to me about it, please do so via twitter: @antheaw, or on Facebook if we’re friends there.


Since late 2012 I have had a hurty head.

Migraines where I have to hide in my dark bedroom, often with sunglasses on in order to look at my phone or computer on their darkest setting for some entertainment. Migraines where the sound of our microwave shutting sends an explosion of pain through my cranium.

I have had up to two weeks at a time suffering from a migraine or extremely bad headache, where in the “headache” stage I can actually get up and function semi-normally while coping with the pain whereas full blown migraine just writes me off and curling up in bed is the only answer.

This is pretty disruptive to life! I have spent a lot. A LOT. of time and money with doctors, trying to find relief for my symptoms, reasons for them and treatments. The only relief I have ever found is double the usual dose of ibuprofen (the same stuff that’s in Neurofen) and Tramadol combined. One type of drug alone does not work at all, but both together bring some relief. 

I have spent a lot of money on seeing a Neurologist, whose examinations showed everything to be ok, and who prescribed different medications.

I had a great job, at the company formerly known as The Radio Network, now the Radio department of NZME. I would have many days off, many days coming late to the office as I spent bad mornings in bed waiting for painkillers to work. I would look and feel pretty rubbish but work hard to still get all my tasks completed. Some days I could work from home, with my curtains drawn and sunglasses on and phone calls conducted at their lowest volume as the sound coming from the speaker echoed pain through my head.

Fun things were given up, like concert tickets and trips away and nights out with my friends. I started hesitating to make any commitments as I had no way of predicting wether I would be well enough to fulfill them and I hated to let people down, felt like a flake and a failure when I had to send another “Hey sorry, I can’t make it, I’m not well.” text to a friend.

On the 20th of this month, it’ll be a year since I quit my job to focus on getting better. Through trying to treat the issues with my head, the depression I have struggled with for most of my life was also diagnosed and treatment for that begun. Without a diagnosis for what was causing the pain in my head however, there was still no real treatment plan.

I started working freelance, taking on a handful of hours work each month which meant only a few meetings and most of my work done from home and when I was capable of doing it. It was a massive relief to no longer feel I was expected to show face in an office every day for a set amount of time, even though my employers had been excellent about my situation.

Around August, I had a really terrible migraine which started one evening and sent me to bed early. This happens often. In the morning, when it was worse, I reached for my painkiller cocktail only to have it rejected by my body and thrown back up into the bin. This is terrifying, when the only relief you know fails for you, what can you do?

I was unable to get out of bed, but I sleep with my phone under my pillow so WAS able to call my sister, in tears, and eventually get out that I needed her to come and help to take me to the doctor. She made an appointment with my GP, dressed me and it took a very very long time to get out to the car and down to the doctor’s office.

Laying in the dark nurses office I was prepared for some sort of injectable relief, I don’t even know what it was, but my sister’s rubbing of my arm became more insistent as the nurse revealed the administering needle. “This patting is for me, not for you, that needle is fucking huge!” she told me. I didn’t care, I just hoped it would help. In fact, the way they grilled me about wether I had an addictive nature, and warned me that I may be a bit “funny” after the injection, I hoped it would give me some kind of high. It didn’t, it helped the pain enough that I was able to walk out to the car by myself and to spend the rest of the day in bed without feeling as though my head was being torn apart from the inside. Go figure.

After this episode and feeling so terrified, I pushed my GP to get an MRI scan, which my Neurologist ordered. Those things are also not cheap. My appointment was made fairly quickly and I lay in the noisy box keeping very still for what seemed like an age. I was pretty disappointed it was nothing like the MRI scanner I had seen in a TV show, which Walter Bishop used on Fringe.

I was sent a CD with some software on it and images readable by this software which show the scan of my brain. I had to dig out an old Windows computer to be able to look at it, but had no idea what I was seeing. My brain, sure, but was there anything wrong with it?

My neurologist explained that I didn’t have anything seriously and immediately wrong shown in the images but that the pressure in my head seemed elevated, and the next step was a lumbar puncture. Also known as a spinal tap, it’s a needle inserted into the spinal cord to test the pressure of fluid there and to extract fluid for testing. It’s a bit like having an epidural but they take liquid out not put it in. And I didn’t come out with a baby afterward. 

That procedure showed the pressure in my fluid was indeed elevated, though the fluid itself is normal and healthy. And so I was given the weirdest diagnosis that went something along the lines of “there is a condition that is diagnosed in the absence of any other explanation for your symptoms, when an MRI and a Lumbar Puncture indicate that spinal fluid pressure is high”. The condition is called idiopathic intracranial hypertension, and I was told it’s like having a brain tumour without actually having a brain tumour. In years past it was assumed to be a tumour until science advanced. 

The raised pressure also raises pressure in certain vessels and veins in the brain and head, including sheaths around the optic nerves which could effectively choke them. There is a risk to losing eyesight from the condition, and I really quite value my eyesight! Scary times.

So I had a label! It’s a somewhat rare label, and my neurologist explained that while the cause is unknown, the condition seems to affect mostly women in my age bracket and mostly women who are overweight, though not exclusively women, not all women who are overweight.

After two years of searching for what might be wrong with me, I did not mind being told this at all. It was a lot different to the experience I hear of often, where an overweight person visits a doctor and immediately is told to lose weight – even when the reason for visiting is unrelated or the patient shows no signs of ill health caused by their weight. 

So while losing weight isn’t guaranteed to fix the condition with my head, it wouldn’t hurt (and as I see it, would benefit in other ways too). My neurologist also surprised me by acknowledging that losing weight is the hardest thing to do and to maintain.

About that comes next.

(Part 2: Fix my tummy, fix my head)

Reflections on “the Tweet that took 2 months”

After reading my post about Social Media Douchebags, my friend Red sent me an article from Business Insider Australia titled “We Got A Look Inside The 45-Day Planning Process That Goes Into Creating A Single Corporate Tweet”. A lengthy title for a lengthy post.

In essence, the post describes how the copy for a single tweet is drafted, pitched, the media (image) designed, and the thorough approval process that accompanies the tweet before it’s born as a published piece of content.

As Business Insider Australia presented it, “Here’s the tweet that took two months:”

Now I don’t think it’s very kind on Huge, the agency who produced this lil’ labour of love, to present it quite so disparagingly.

The average internet-savvy, social media invested reader would probably roll their eyes at the content, “45 days?! For that?!”. Indeed, a quick search shows me the internet is full on hating on the tweet that took two months.

So what’s “wrong” with it? Why might the content be what it is? Let’s have a guess, but first let it be known that I totally get where Huge is coming from and I don’t roll my eyes at this tweet or the fact it took two months’ gestation.

  • “Sharing a Camembert with friends?” The age old social media engagement plea. Ask a question.
  • (How generous!)” a wee compliment for the reader.
  • Get the best flavor by serving at room temperature” the crux of the tweet, showing cheese expertise and sharing useful information. 
  • #artofcheese” hashtag, seems to accompany every “cheesy” tweet from President Cheese. (Had to use the pun, sorry)
  • And a pretty image. Good photo, product name, bright lighting, “aspirational” – honeycomb, marble serving plate… Posted through the Twitter platform itself so that users of Twitter’s own clients (channels for accessing Twitter, like the Twitter app or website) will see the image and are more likely to read the tweet. Common marketing ploy on social platforms – images tend to generate more engagement.

The pessimistic view:

  • Sounds like marketing speak, the tone is corny
  • Doesn’t actually invite any interaction (I’m not going to reply “yes, I am sharing camembert with friends!”
  • Nothing “in it for me”, at best, I learned that camembert is best at room temperature. 

So how was this tweet created? And why did it take 45 days?

For a brand represented by an agency, the agency has a lot of work to do. The tweet is a small part of a much bigger job to build the brand’s following and promote key characteristics of the brand, products, and generally build the image desired by the client.

The team who published this tweet know.

They know 45 days is a long time. They could probably push out far more engaging posts in seconds and generate some great conversation and gain more followers. They know it sounds a little cheesy. There would have been debate over every piece I bulleted out above.

For a tweet or any piece of marketing collateral in a campaign, it has to be drafted, pitched, refined, approved. The optimum time for publishing needs to be weighed based on when the audience is most active or responsive, and how the content fits within the overall content calendar of the brand. A lot of other work would have been done in those 45 days! At least a week’s worth of other tweets no doubt were written at the same time. Associated content for other platforms too. It’s 45 days turnaround not 45 days of solid work.

What our angsty, judgemental community often forget is that in business land there is a process.

Managers have to approve, the client has to approve. All these approvals avoid any major slip ups – like the wrong type of cheese mentioned or pictured, or the post going out prematurely.

It’s a new account – March 22nd was their first tweet. The client probably isn’t used to having their brand in this space and is likely a little cautious, needing approval and carefully picking over content – finding their feet on Twitter.

When a misstep can result in such a backfire especially online, can you blame the caution?

Kudos to Huge, from what I’ve read, their team are doing a good job in a harshly judged space, unfortunately their work was presented in a way that invited that famous internet vitriol.

It pays to think about what goes on behind the scenes before hefting a pitchfork.

Social Media Douchebag

A few years ago I sat in on a social media presentation from a well known (in Auckland/NZ) Social Media Expert.

This presenter was invited to review our brands (7 commercial radio stations), make recommendations and give examples for furthering these brands online (followers, engagement, driving traffic to websites).

What we sat through was more “this is Facebook, you can make a page” – as a media company well beyond that, for all of the presenter’s popularity (and many Twitter followers), it was underwhelming. Lacking all preparation and insight.

This is one of the main reasons I cringe when I hear about people who are “great at social media”, “social media gurus”. Being an “emerging” medium, I see too often fear, confusion, intimidation around using social media.

Nerds like me have had Facebook and Twitter accounts since 2006, that’s nearly ten years, I think we can drop the fear of the new.

So what does it take to be really great at helping businesses “further their brand”?

Understanding – the company, it’s resources, people’s skill levels and willingness to participate, the audience, the goals and a variety of tools.

Longevity – educating advocates within the business, scaling down or up to suit available resources of time, money and skill. A plan that stretches beyond a single campaign.

Creativity – using tools in new ways, relevant to the brand and it’s audience.

Sound familiar? Notice I said “further their brand”? This isn’t limited to social media.

Social Media: Websites and applications that enable users to create and share content or to participate in social networking.

(http://www.oxforddictionaries.com/definition/english/social-media)

Social media are platforms that use the internet to allow people to interact and connect with each other one to one, or one to many. But they are just another channel for brands to get messages to their audience – like a website, magazine ad, radio ad, billboard. It’s communication, just like any other form of advertising or marketing.

What causes nervousness is the lack of understanding of the tools themselves. Social Media Douchebags know the tools well enough to intimidate those who don’t into believing that because they have thousands of Twitter followers they must be able to craft magic.

Why cringe about being called a “Social Media Expert”? It’s limiting. There is no secret sauce. Marketers should be stepping up, engaging their brains and filling this space, creating throwaway accounts and testing how to use the platform they are interested in, and recognising social media as just another tool.

Every marketer should be a social media expert. Add it to the tool box along with tv spots, radio air time, full page spreads, billboards, and do what you do best – focus on your message, your content, your audience.

In defence of email signatures

My contacts are at best, disorganised. An automatic email signature, in plain text, which lists direct dial and alternate phone numbers, alongside the position and company of the sender is my first port of call when my contacts list fails me.

Perhaps a little more information than that. I disagree with an email signature which regularly causes printing to span two pages, is attached to every message sent, and which contains images. Sometimes in corporate land these atrocities cannot be avoided.

Mobile specific signatures? I have one for both work and personal:

“Please excuse my brevity and typo’s, this message was sent via mobile.”

Some recipients think I write that after every email sent from my phone. Some don’t understand what “brevity” means. I like to think it excuses my email for being inarticulate and clumsy, by explaining it wasn’t written in ideal conditions.

Attach your automated email signature to the first message in a thread of email, not to replies, and preface it with your personal sign off of the message.

With respect,

Anthea

Nerveburger

Tomorrow I’m going to have blood removed from my body, mixed with citrate, and separated. The red blood cells and citrate will be returned to my body, and everything else donated.

It’s going to take an hour. The plasma taken from my blood could be shipped to Australia to create blood products which are returned to New Zealand for people’s medical treatment, or used in education.

I’m a regular whole blood donor, but recently the New Zealand Blood Service have been on a drive for more Plasma donors. 

Plasma can of course come from whole blood donations, but not as much can be gathered, – if the donor loses too many red blood cells, they will become anaemic. By this method of donation, up to 12 times more platelets (which help blood to clot) and 2-3 times more plasma can be donated in one sitting.

Because the components taken from your blood with this kind of donation are faster to regenerate, plasma donors can make donations every two weeks – rather than the three months whole blood donors wait. Find out more about Plasma donations in this PDF.

I’m on the bone marrow list too, being a common Kiwi mix of “a bunch of races” – Maori, Irish, English, who knows what else… I could be a match for someone with a similarly tricky genetic combination. Cancer is horrible and if there’s a chance I can save someone from leukaemia, I’m up for that.

As usual before a donation, I’m nervous. 

My left arm has a good spot of scars from my prvious donations (not really that many – this guy reached 500!). Once, when I was doing my second whole blood donation while at high school, I had an unfortunate experience which involved a bloodied white uniform shirt.

The plasters leave a dramatic bruise on my inner arm too, I had a pretty good one for last year’s Webstock and felt like a junkie with my messed up vein.

I don’t like donating blood. You get cookies, which are bribe enough for some, but my real driver for donating is that it’s something real that can be done to help people.

I like to think that if anyone I know was in a car accident or needed a blood transfusion (like my great aunt is having right this moment), I could potentially have helped save their life. Friends of mine are having babies now, and any one of them could need or could have needed blood to save their, or their babies’ life.

One day, I might need blood, and there will only be blood there if people keep donating.

If you’re not a donor already, hop over to the NZ Blood service website and have a read. The donor centre in Epsom is super well appointed, has carparks aplenty and is open late nights every week. The nurses are lovely, and yes, there are bikkies and free wi-fi aplenty.