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Two years with MS

17 December 2015

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.

Comments (16)

Astrid - I love this post and it resonates with me in so many ways! Funny there are some similarities between your sentiments and those I posted at nearly the same time in my "ChristMS" letter, particularly regarding reflections on receiving support. I also love the fact you are honest and blunt enough to refer those who "don't stick around" - and yes there are some of those folk I've come across too! It sounds like you have also had some medical misadventures en route and I cannot tell you how much of a relief I find that I'm not the only one (not that I'm glad you had to experience too). In my case, I have over a decade of advanced biomedical training - and did that help? Nuh-uh. Finally, I too have used MS to reinvent my career and am also a much more contented person for it. Thanks for writing this. PS. Good luck with the grandmothering thing. Eeeshk.

Thank you Sarah! I'm glad it resonates... I just wrote how I feel (and upon reflection, clearly I need to improve in quite a few areas of my life). As for medical misadventures... I have brilliant neurologist who I am very glad to have on my side. And yet, things still go wrong: both because MS is so damn unpredictable, and because MS is not well understood in the general health and medical community. Good luck with your reinvention... I am finding it a slow but rewarding path.

Thanks Astrid! I am very much looking forward to catching up with your very clever blog posts over the holidays. I hope you have a lovely break - much as I love my work, I'm counting down the days before I'm off the clock...!

Hi Astrid. SO thankful you are someone with MS telling it like it is. Sorry to hear about the migratory joint pain. When I hear that, I think of Lyme Disease and co-infections, because the symptoms can overlap with MS and if not a differential diagnosis could in any case be a co-morbidity. Wondered if you've ever been in an endemic area and if Lyme is something you've thought about? I too appreciate your frankness regarding medical misadventures as Sarah puts it. I think it's time Australia took a new approach to treating chronic illness, and I would like to see an MS patient's association - by MS patients, for MS patients to push for a patient-centred treatment model. Wondered what your thoughts might be on that? Cheers, Lawrie

And thank you, Lawrie! I have been tested for everything... Lupus and Rheumatoid Arthritis included (but not Lyme's Disease... I will put that on my list of questions). And I could not agree with you more about a new approach to chronic disease. By and large I think Australia does quite well for acute medical interventions (if you have a broken leg, someone will fix it), but chronic conditions are in an entirely different ball park. They do not neatly fit into one scheme or timeframe or funding pool or specialty... And thus all too often those with chronic disease end up managing (or not managing) themselves as the case may be.

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Wow what a wonderful post! I completely relate to this!! Thank you for putting this into words, something comprehensible... Such truth.

I can also completely relate to you 'lady with ms'. It's often difficult to find the right words when people ask how you feel. You said it all .... thanks for sharing!

Telling it how it is, well is the only way to tell it in my book. I live in that world too, where I have watched people go and I well, I have no need for them to return. My time, energy is too valuable a commodity to be wasting on bad investments. Great post :-) Thank you for sharing your world.

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