All posts in Health

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.

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.

Why I changed my stance on Euthanasia.

by admin on January 3, 2011 in with No comments

In 2010, I watched a family member die from brain cancer.

At the time, I remember tweeting, in despair, about how I believed in the right to end your life on your own terms, and not have to suffer through the process of dying of cancer. I watched that process. It was emotionally painful. It was unpredictable. It was occasionally not managed as well as I would have liked.

I have argued many, many times in favour of the right to end your life, and have campaigned around this.

But not so long ago, during a discussion with a friend, and some further reflection about what I have experienced, I reversed my position.

We were talking about it during a discussion about palliative care, what had happened with my Grandmother, how I felt about it both emotionally and philosophically, and he (a nurse who sees a lot of similar brain tumour deaths) said something to me that will forever change my position.

He said that ultimately the patient is asking another, living, person to make a decision, or administer drugs, that expedite their death. And then he asked me if that was fair. No religious argument about being right with God. No argument about the sanctity of life. Not even any particular moral viewpoint. Just, asking, whether it was fair for a person to ask someone, who has their life ahead of them, to end their life.

I actually stopped dead in my tracks.

A lot is said about euthanasia being a merciful act for the patient. The religious zealots campaign on the basis of God. The proponents argue on the basis of mercy & dignity (which are still very important points). But, ultimately, it comes down to allowing people to die with dignity by administering a cocktail of drugs that kill, because they are afraid of the process of dying, often in pain, and (understandably) want to have some control over an uncertainty.

Someone has to administer those drugs. Someone who has taken on a professional responsibility to NOT ACTIVELY KILL people.

It is completely understandable to be afraid of death – particularly death from cancer and Alzheimer’s. We are also often afraid of how we THINK death is, because of popular culture making it such a dramatic thing. But on the other hand, I can also see the beauty in death being a part of life. Dying when you are really ready. Not when you SAY you are ready, but when you are truly, truly ready. It’s kind of powerful. And now that I see past my grief and reflect on it, I cannot think of a better way to do it.

Because it’s possible to die with dignity without euthanasia. Palliative Care is not just about pain management – it is about the process of dying. It is about coming to terms with death, often premature, celebrating death as a part of life. Palliative Care should start earlier, should be more intensive and should be better resourced, to put death out in the open – not be so scary – not be so dramatic.

And there is a big difference between prolonging life unnecessarily, causing indignity, and providing more support in non-intervention. More people should be supported to refuse treatment. Family members of stroke patients should be made aware of the reality that they will NEVER be the same again. Cancer patients need to be better supported to decide to not have treatment. Our culture needs to change to make non-treatment when the odds are grim an easier choice. It’s hard to make the decision to die. My Grandmother could have had 7 months of radiotherapy, been paralysed on her left side and had her quality of life diminished. But, she refused treatment because she wanted dignity.

But, just because she refused treatment and was willing to let things take their cause, is not an argument to then expedite it.

And, also, I believe that it’s not fair to ask another human being to end your life.

I don’t mind if people want to kill themselves upon hearing they are terminal – there are ways to do that. But, to ask another person to help you, is a selfish thing to do. It may come from a painful or caring place. It may not be deliberately selfish. But… it’s a terrible burden for those that have to “pull the trigger” as it were. And I understand the grief of wanting to prolong a loved ones life, even if it meant sacrificing dignity, but… the real problem is not in making the decision to end it, but rather, making the tough decisions about whether to treat in the first place.

My Grandma begged me to kill her the day after she decided to refuse treatment. She lived for a month after that. She continued to ask me, but we would then continue on with the process of storytelling, closure, nonsense, closeness. Me stroking her hand and holding her for 2 months straight, reassuring her it was OK. And with her asking me to kill her, at the time, I wanted to help. Obviously I couldn’t, but, I wanted to.

But, reflecting on it, if I HAD helped her, I would never be able to live with myself, because I believe that killing another person is wrong. I believe that state-sanctioned killing of people is not what our society should be, regardless of the case. And I believe that asking a nurse to administer a lethal cocktail of drugs, or a Doctor to prescribe it, or for a family member to be put in the position where they will live with it for the rest of their lives… it’s simply not a fair thing to ask, because you’re afraid of the dying process. The dying process is a part of living. It’s sometimes painful. It’s sometimes sudden. And, there will always be those who wish to end it.

But for me, I now have a more nuanced view. Jump off a cliff. Carbon Monoxide, whatever. Or, if you have a family member that is willing to assist, by all means weigh it up, and if the judicial system can adapt to protect those people that DO assist their loved ones, I am OK with that. But don’t ask someone else to do it as part of their career. It’s not fair.

I will never forget the day when Grandma decided she didn’t want chemo or radiotherapy. We were talking to the neurosurgeon, I wasn’t happy with it but I supported her decision. And I heard an audible sigh of relief from him when she said she didn’t want treatment. One of relief. Because so many families want survival at all costs – at the expense of dignity. The choice to face death over time is something that not everyone gets. You get to say your goodbyes. You get to slip away in relative comfort. That is dignity.

Acceptance.

by admin on November 18, 2010 in , , with No comments

I have had to do a lot of thinking lately. Some reflections have been conscious and voluntary, others have been somewhat forced on me… but this really is a time of major growth and personal reflection and I am at a real turning point in my life… where I really am aware that decisions I make now will impact the rest of my life.

It took some time to end my marriage, primarily because I thought I was the broken one. That somehow if I tried harder, that somehow if I just worked longer hours and poured all I had into things, tried to modify myself to fit… that I could somehow force it. The assumption that the way I felt was all about my attitude and laziness and was somehow my fault and was even fixable was a naive view, but still, I held it. That the failure of my marriage was my fault.

I tried really hard. Both of us tried really, really hard and both of us are good people who just worked too hard at something that was simply a matter of incompatibility. I didn’t cheat. He didn’t cheat. Nothing happened. In fact, it was the day I said, out loud, that I wasn’t happy and we needed to separate, calmly, that I knew that this was for real. It took me a long time, after 2 years of relentless, clusterfuck-style life-shock after epic life-shock that I came out the other side and realised that I was a different person.

I am on my own for the first time in my life. The first time in my life. I lived alone for about 8 months when Jason and I broke up in 2000, and I dated, and lived alone, but for the first time ever, I am truly on my own. And by this, I mean, responsible for myself with no-one to back me up or bail me out.

It’s scary.

And it’s weird.

Because I realised, with a fairly crushing and overwhelming force, that I have some pretty significant deficits as a functioning adult. I am injury prone, reckless and forgetful and I had absolutely no idea to what extent that was till I actually had to live with consequences, and without someone in the background, constantly making sure that I remembered things, or reminded me when I was being reckless, or could remind me of the time (I have no concept of time). In the few weeks I have been out on my own, I have cut myself, bruised myself, locked myself out of my house, lost my temper from mess, lost my temper from workload & juggling… and you get the idea.

I have always been so vocal about my independence… how I am A type. How I am a “high achiever”, how I can do it all, etc etc. And now, I realise that no-one can truly do it all without someone in the background making sure that it happens. There is no such thing as a self-made person.

I have ADHD. I have gone through a crapload of testing. I have gone through a crapload of medication trial and error. I have crippling autoimmune disease and a suspected blood clotting disorder. My autoimmune disease has some symptoms similar to MS, especially around cognitive function and clumsiness. I used to be a functioning person. Used to be an athlete. Used to… well… used to do a lot of things.

The ADHD stuff really is an umbrella for so much in my life and I have realised that I am not coping well with the everyday pressures of being on my own. Jason used to do things like plug my phone in to make it was charged. He would make sure I had my car keys or the house keys. He would make sure I remembered to set alarms, take medications. He would walk in at 11pm and tell me the time so I knew. He would clean up after the kids so that I wouldn’t be stressed out about disorganisation when I am already struggling to pay attention. I quite literally had a little fairy that would follow me around to make sure I didn’t kill myself.

I didn’t realise I even had these deficits in functioning until I was on my own and had to take full responsibility for my own life. My phone is never charged, I forget to set my alarm, or I accidentally leave my phone on silent when I set it. I am easily sitting up till 5 & 6am, with no concept about the passage of time. I am good at getting my work done, of course, but I am still in some ways struggling with the overwhelming amount of small bullshit tasks I didn’t even realise… I was being propped up.

That 8 months where I lived alone? I had a bad flu, fell asleep on my lounge room floor in front of the heater and my blanket caught fire. I lost 3 wallets and locked myself out twice. And tonight, I rang my ex and I told him that I acknowledge and appreciate the “fairy godmother” role he played without me even knowing. I also made it clear that it didn’t mean I was going back, but a mere acknowledgement that I understand.

So now, I have to put strategies in place to overcome these things. I have an ADHD diagnosis. I have health problems that prelude me from being able to be this A type person I always thought I was… so I need to come to a point of acceptance and say “hey, this is what I need to do to function”. I also need to stop seeing my ADHD issues, and my physical limitations of “becoming crippled” as a failure.

They aren’t failures, per se. They are facts of life that I need to acknowledge and work with. I need to take drugs for the rest of my life. There is no way around it. There is no point getting upset about it because it WILL NOT CHANGE. I will never be able to run a marathon or swim to Rottnest. I will never be able to go to Medical School and I need to accept it as a fact and let go. I will never be able to fully cope with the structures of the world around me because of the way I process information.

I need to accept that I am a good person. I am not a failure and my marriage ending was no-one’s fault.

I will need to accept that I cannot do it alone.

I will need to accept that I need to put strategies in place to help me achieve the things that “normal” people take for granted.

I will need to accept that I am a human being, not a robot. And that if I continue to push myself to my limits, I will die a premature, painful death.

I will need to accept that I need to be more controlled and rigid in the activities I choose. I need to learn to manage my time and my finances more effectively.

I also need to accept that even in spite of all of these strategies, in spite of all the drugs, in spite of all my best efforts… that sometimes… I will STILL fuck up. The strategies I put in place can help it to happen less often, but I will still fuck up. And I am not a failure for it.

And I need to stop being angry about being sick. I need to stop being angry about the almost $900 a month in non-PBS medications I need to take to function. It is what it is. I can take it, or not take it, but there is not point in complaining and stressing about it. I cannot afford it, but I need to find a way to work with it. And, when I need to take 2 days off because I am unwell, despite even the best of treatments, I need to be kind to myself and not let clients bully me.

I need to learn to accept my body and work within the parameters of my disordered view of my body and appearance.

I need to be more assertive and learn to say no… even when I want to do things, or give time, or offer… I keep doing it at the expense of my health, my finances (way too much free or discounted work which is stopping), my time with my children and ultimately, my life. And it just can’t happen anymore.

So, this week, I am working on getting stuff done. Allocating time for everything. Setting alarms. Filling my Calendar to the brim, everything, even the meals I forget to eat, scheduled. In the hope that I can train myself to function and leave time in it for me to actually live rather than exist. My expenses are incredible right now and I’ll be honest, I don’t know where the future lies. Child support, medication, debts & rent alone are insane. But, rather than complaining about it, I can’t change it, so I’ll need to start rolling with it, moving to accept that I need to earn $2000 per WEEK before I even start to do anything fun… and get on with finding the best way to do it.

Coeliyuck

by admin on August 30, 2010 in with No comments

It’s 4:40am and I have been up all night. Not a terribly uncommon occurrence for me, but still, I was tired and hoped to go to bed around 2. The thing is, I actually can’t, because I am doubled over in pain every 5 minutes, gasping for air, while my small intestine spasms and seizes in response to accidental exposure to gluten.

It sucks balls. Like, really, really sucks balls.

The thing that upsets me is that I am pretty vigilant about these things. I am careful about cross-contamination, careful about what I eat… because I can’t afford to be unwell. But every so often, BAM! and I am down.

Jason was going out so I ordered pizza from Dominoes. They’ve exposed me to gluten before – the last time we ordered in fact – and I put it down to a one-off. There have been some odd reactions before, but because I had wine with it, I assumed that was the cause.

So, I ordered pizza for the kids. I had half a slice (I have no appetite) and that was it.

I haven’t eaten today, there is absolutely no other possible source.

And now, for the second time, the Dominos “Gluten Free” base has me in so much agony I can almost imagine dying rather than tolerate it. I came very close to having a dose of Morphine, the pain is so bad. I am going to have arthritic pain for 2 days, all because Dominos can’t seem to take gluten contamination seriously. It’s not a joke. Sure, it’s a bit of a fad thing for many, but geez… noone is going to compensate me for the 2 days I now lose because I need to be in bed, are they? But, who cares, right? It’s just a little dietary thing anyway… I can just go back to eating wheat next week if I want. Sigh.

It is now 5:20am and it has taken me 40 minutes to write this. Because it has literally been in between massive waves of excruciating pain, breathing through, and trying to distract myself and not end up on the floor. It’s just not good enough. It’s one thing to make a mistake, but it’s an ongoing problem. I know where I won’t be eating again… even if it is only half a slice.

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