Galleries

Inside an MRI_LadywithMS_4

Inside an MRI machine

Every time I have an MRI, I fill out the same safety form again.

Inside an MRI_LadywithMS_1

The form never changes, no matter how many times I fill it in.

Inside an MRI_LadywithMS_2

Warning signs. There are always warning signs. Even if I am feeling fine, the warning signs are always a reminder that I am not, in fact, fine. So my advice? Ignore them.

Inside an MRI_LadywithMS_3

Normally at this point I am wearing only a hospital gown (or if I get lucky, scrubs). This time, I got to remain clothed, take my time and really look at what else is in the room with the MRI machine.

Inside an MRI_LadywithMS_4

My scans are always of my brain, and this is the head holder they use to keep my head still (although normally I’m lying down).

Inside an MRI_LadywithMS_5

Each time you go into an MRI, they make you hold an emergency button (it is attached to the cord in my left hand). I’ve never used it yet… But I have thought about it.

Inside an MRI_LadywithMS_6

It gets cold in there… Particularly when you are only wearing a hospital gown. Say yes to the blanket. Always.

Inside an MRI_LadywithMS_7

There is a mirror above your eyes to help you see out of the machine.

Inside an MRI_LadywithMS_8

Peaking out of the MRI machine.

Inside an MRI_LadywithMS_9

The view the radiographers see when I am in the MRI machine

Inside an MRI_LadywithMS_11

And my partner Jay checking me out in the MRI machine.

Inside an MRI_LadywithMS_10

There is a pressure release hatch (I like to think of it as the escape hatch) in every room with an MRI.

Inside an MRI_LadywithMS_12

And finally, a close up of the pressure release hatch in the room with the MRI machine.

Inside an MRI_LadywithMS_13

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.