2015

My two year MS anniversary

This was post republished with permission on Uninterrupted on 17 December 2015 YouShare on 8 February 2016.

 

Two years ago I could not have foreseen what MS would bring to my life. And no, I am not deluding myself with mindless positivity. I despise MS, although I have grown used to it. My surprise stems from the fact that I am a much happier person now than I was before my diagnosis.

I have received such support. And I know who loves me. That is not a childish comment – I mean that I have learned a hard life lesson, and I now value it as such. Some people stick around, some don’t. And some people… Well, I don’t want them to stick around. I realised who I love when I think about who I want to visit me at my worst in hospital. Old friends have returned, and new ones have walked in the metaphorical door.

I am a better person (that sounds trite, but it also happens to be true). More compassionate, more empathetic, and with a far greater tolerance for people who are struggling. I have turned into an advocate.

But I also have stricter boundaries. I have no patience with incompetence, shallowness, lateness or half-truths. Those who know me in person know I was never great in this regard… But now I just don’t care. I may be in hospital tomorrow (or tonight, it has happened that way), and I no longer choose to spend my time with people who waste it.

I have something of a prejudice against lifestyle diseases… If you have your health, for God’s sake make the choice to look after it.

And I know for a fact that it is possible to know more about MS than the doctor or nurse you happen to be speaking to – even in a country with a decent health system like Australia. I have corrected doctors and negotiated with them. And I admit, I have shouted at them. I have no doubt I will do all three again.

I settled into some hardcore medication, albeit with the occasional hiccup (note to self: forgetting to take the tablet for 24 hours is a bad idea).

I experience MS pain in my hands and major joints. There is no rhyme or reason to it, no cause and no cure. It is horrendous. I lose hours when it happens, which tends to be in the early to late morning. I can’t predict it, I can’t stop it, and I sure as Hell just can’t take a handful of Ibuprofen and work through it (trust me, I’ve tried). When it happens, it is debilitating.

I changed my diet. I am largely processed food free. It sucks. But it also rocks: I am quite a bit lighter and my skin has never looked so good. I hope to Hell it helps the MS too.

I failed to exercise… And I don’t have an excuse. My neurologist laughed at my ‘I do incidental exercise’ approach.

But I do have an extremely high tolerance for risk. MS gives me complete uncertainty… So I find myself willing to take my chances on things I probably shouldn’t.

I am persona non grata with the financial powers that be. Insurance agencies won’t touch me, even with a risk premium. Aside, of course, to provide me with Death Cover (which I now have). Technically, I am eligible for the NDIS when it rolls out, meaning the Commonwealth Government classifies me as disabled. But I am not eligible for any disability benefits from the State or Commonwealth Governments… Go figure. I have a decade of professional public policy experience and I can’t figure the rules out. But consider it a lesson learned: go get your income protection and life insurance now, don’t wait for whatever magical date you have in your head (I was waiting to draw down my mortgage and roll it all up together).

I now have a will and three different types of Power of Attorney. Yes, there are three types – medical, financial and guardianship. Go get them. Seriously. Once you take the time to think though the ramifications of not having one (and yes, people like you sometimes need them), it isn’t so hard.

I quit my career. They say most people with MS stop working within ten years. I skewed the average: I walked out in less than a year. But I am building a new one. Writing, advocacy, storytelling. And damn, it feels good.

I have a partner, who I met me after my diagnosis. Two months after, when I was still recovering from my first episode and the methyl prednisolone that knocked me around for weeks. I shudder to think at how I looked and acted when he first met me. Looking back, I realise how sick I was. I used to grow tired just leaving the couch at that point. But he saw through the sickness, and I am forever grateful.

And finally, while it has nothing to do with MS, a quirk of fate has made me a de facto grandmother in an ever-expanding American family at the age of 34. Who knew.

Anything can – and does – happen.

 

We Don’t Talk About featured on Channel Ten News in Sydney

Channel Ten News in Sydney featured my We Don’t Talk About project over the weekend.

The purpose of We Don’t Talk About is to start conversations about the hard things associated with chronic and invisible diseases (including our very Multiple Sclerosis). It is a forum to share the darker thoughts – especially those thoughts that don’t often cut it as dinner table conversation: about illness and disease, relationships and family, finances, sex, end-of-life care and dying.

The goal is not to be bleak; it is to be honest. Cathartic, even.

If you know anyone with a chronic or invisible disease, please share the site with them. They may want to tell their story. If they do, they can remain as anonymous or be as public as they like. Or you can use this site to start a conversation with those you love – either about their condition or yours.

The project was featured on the Channel Ten News in Sydney over the weekend. Thanks go to Frank Lyons, who shared his story living with Motor Neuron Disease, and Rob Miller, who shared his on living with Parkinson’s disease.

Interviewing the chronically ill: We have more in common than not

‘Citizens of sickness’

For my current project, We Don’t Talk About, I am walking into people’s lives and asking them the most intimate questions. To my continual surprise, people let me in.

Yes, it helps that the project is part of my Hot Desk Fellowship at The Wheeler Centre, and that MS Australia is on board.

But I think the real reason people answer my questions is that I am sick too.

In my first interview with a man with early-onset Alzheimer’s disease, we actually gave each other a high-five because we take the same drug.

In the words of the late Christopher Hitchens, we are the ‘citizens of sickness’.

What we have in common

I am learning there is so much to learn from the chronically ill. And I am not forcing positivity here – I despise the fake or forced positivity inherent in so much of the media on disease and illness – I actually mean it.

I have Multiple Sclerosis. And I learn a great deal from others with MS. But I am increasingly aware that I can learn a great deal more from those with other neurological and invisible chronic diseases.

Although each diseases manifests differently for each individual and no two people have the same experience (and I cannot emphasis that point enough), depending on my ever-variable symptoms my lived experience may mirror that of someone with Parkinson’s disease or Chronic Fatigue Syndrome or any number of other conditions.

To date I have interviewed individuals with Alzheimer’s disease, Chronic Fatigue Syndrome, Diabetes, Major Depressive Disorder, Motor Neuron Disease, MS, Pancreatic cancer, Parkinson’s disease and Ulcerative Colitis, as well as a woman with an acquired brain injury.

Yes, our diagnoses and prognoses are different. And we look different type of sick in the various scans we have.

But the grief and fear that we face, alongside the potential discrimination and disability and depression, are often the same.

What would happen if…

There are so many different diseases, each with their own annual day and fundraising activities and awareness campaigns…

What would happen if the peak bodies of each disease worked together to achieve their goals (whether that be awareness raising or substantive policy changes or fundraising), instead of splintering in every direction, leaving those of us who are sick to face the ever-present barriers those organisations are meant to address.

It is something to talk about.