Mortality

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Life can be unkind and hard when young lives are taken from us much too early.

A few years ago, three friends of mine passed away, each within a few weeks or months of each other.

All three had MS. All three had additional medical difficulties.

All three were much too young.

There is now uneasiness among our group of friends whether MS should be labelled as a terminal illness or not. Even though we never assign such finality to the term ‘chronic’, the media often does.

As an autoimmune illness, multiple sclerosis exposes your fragility because of an impaired immune system, as the body attacks itself. Infections of any kind have to be avoided as they can trigger relapses and lead to more worrying times.

Sadly, that was how my worst secondary illness started, and how I suddenly was too close for comfort.

I was too near my funeral.

It scared me in more ways than you can imagine.

What is mortality to me?

Mortality is when living creatures stop being around and start being a long, painful memory or just a flicker of a thought in the back of your mind.

We all deal with death at some point in our lives, and I felt I had experienced more than enough of coffins and graveyards in my time. I was quickly reminded of how easy it gets to arrive on the eternal hunting fields, however.

In between November 2007 and March 2008, I was on a path I desperately wanted to avoid after gradually deteriorating from an as yet to be named contagion.

Being confronted with my memories of slipping away is something I have been trying to avoid for years. Eventually, writing about it was a catharsis, as I finally found the strength to face up to how quickly and so out of the blue life, life can be taken away.

The odd time its emotions still bang into my conscious mind though, because it had such a significant impact on my life.

Nevertheless, with my 30ish daily pills and daily injection, I try to maintain a reasonably good handle on my illness by using all sorts of tricks and ways of fighting off infections. But if or when Clostridium Difficile enters your system, you’re at the mercy of its violence.

I was under the impression that mortality only affected the old.

I was and still am physically weak, but I never thought that death was ‘me’.

Anyone but me.

For about four to five months, I saw my GP and the emergency room quite regularly because nobody knew what was going on inside me. It went from gallstones to perhaps a return of my endometriosis, and from a lousy ulcer to having a liver issue.

In fact, it was none of these things.

Around zero hours, I started having excruciating pain in my abdomen and called work to say I would not be going back – again.

Whatever was brewing inside me, it kept on growing. It had purged anything fluid out of my body and I was unable to eat. I felt run down all the time, my thoughts fought to stay positive, and I tried to keep on working.

In between being absent because of my severe MS fatigue, agonising facial and eye pain, and abdominal pain, planned events all went down the drain.

It was the year my brother -my only sibling- passed away. The gut-wrenching pain prevented me from seeing my niece and nephew that Christmas, and there was absolutely nothing I could do about it.

Eventually, the abdominal pain became so violent that sitting down had turned impossible. Something serious was going on.

Once again, I was admitted to hospital.

At first, doctors could not find what was wrong. It went from bad to worse, and from worse to not being able to speak up anymore.

A few days later, however, I was rushed into an operating room for emergency surgery to see what was ravaging my abdomen.

Four doctors tried getting a drip into my veins. When I woke up in recovery, one of the nurses pointed to my age, as I was “so young for an illness like this.”

gram neg rod36039Three hours later, the result of the surgery arrived: Clostridium Difficile, otherwise known as C. Diff or C. Difficile.

The head of surgery walked in and told me I was quite ill, and since C. Diff

I had no clue what C. Diff was, so a quick Google search shocked me when I read: “Hospital-acquired superbug – more harmful than MRSA; elderly people and those with impaired immune systems…”

I was indeed much too young to have been this violently ill; in fact, why did I even have this at all? The clue “impaired immune system” said everything. I received aggressive treatment in the form of bags of intravenous antibiotics (Metronidazole) a few times each day.

When I was finally allowed to return home and back to work three weeks later, I felt alive and mentally present. Having looked at my graveside, I suddenly knew what life was all about.

I seemed so much more aware of life around me as if it was a brand new lease on life.

I felt alive.

In fact, I was alive.

The superbug that had been staring into my eyes for months seemed long gone. In its wake, it left me wondering. I went through an abyss, one that could resemble Dante’s nine circles of hell. That bottom of that abyss had been the morning before the rush into surgery.

My mum, obviously worried, called asking why I hadn’t been in touch yet. I told her nurses were looking after me during our phone call, and that I’d ring her back later.

But, I didn’t call her during the next 8 hours as I couldn’t face dealing with anyone anymore. I was too ill. And too far gone with absolutely no energy left at all.

Only later I realised that that specific phone call could have been the last time I might have talked to my mum. I had no strength left to speak, though, because I could not keep food in and the pain of the superbug was killing me.

The abyss was seeing myself slip, but I didn’t want to die, and I wasn’t going to die one year after my only sibling passed away. I wasn’t going to make my mum childless in the space of one year. Losing my brother was hard enough.

I had no other choice; if only I could stay alive.

My survival system worked well so I survived, and with a zest for life. I now have to stick to a rigid care plan. Because new contamination with C-diff is possible, and therefore the risk of death. It’s a small price to pay if I can stay alive and superbug-free.

I am what I create, so I fight. And I stand up taller than ever before.

Every cloud has a silver lining, and what remains is love for family and friends that genuinely mean well. That is where beauty lies, and where it will continue.

Having stood halfway my own six feet under, it’s not where I belong anytime soon.


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2012. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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Quirky, tenacious and neurologically compromised female expat living in Ireland since 2002 ◾ MyTherapyApp Best MS Blog for Simplicity 2018 ◾ Everyday Health Top 10 MS Blog of 2018 ◾ WEGO Health Patient Leader Award Nominee 2018 ◾ Feedspot Top 50 MS Blog 2017, 2018 ◾ Ireland Blog Award Finalist 2014, 2015, 2017 & Shortlisted 2018 (competition ongoing) ◾ Contributor to the Novartis MS blog Living Like You ◾ Contributor to MS Ireland’s blog MS & Me ◾ Contributor to The Mighty ◾ Guest contributor to MyTherapyApp.com

7 thoughts on “Mortality

    1. Thank you Jackie for reading my post and thanks for your kind comment! Writing does seem to help much more than I thought it ever would and nah… life goes on doesn’t it and what seems bad one day seems much less later in life. I’m glad I learned I valuable lessons following the C. Diff and that’s what counts! :)

        1. Ah yeah… positivism is so important isn’t it Jackie? Just love being goofy and optimistic, it makes the days go easier and faster also :D

  1. I have been battling C.Diff for 9 months now, it has been hell. I finally get over the C.Diff to have all of these neurological symptoms pop up. I feel like I am going crazy, and thankfully I will finally see a neurologist Tuesday as my doctor thinks the neurological symptoms are signs of MS. The doctors have told me all along that they feel I must have some sort of auto-immune disorder preventing my body from thwarting the C.Diff like most ‘normal/healthy’ people. First they said Chron’s, Ulcerative Colitis, or something like that, but now they think MS. There are days I feel like I’m dying from the inside… I know what you went through, and thanks for sharing for those of us looking for some ‘sanity’ while the doctors try and sort it all out! I’ve started blogging my symptoms so I will have some kind of record to take to the doctor with me.

    1. I hope you heal soon and that your neuro will tell you what ails you. It’s quite difficult going on when you don’t know what is going on so I hope that some day you will get the correct medication to help you out. Let me know how you get on OK. I’ll follow your blog from now on because we can all learn from each other :))

      Emergency room doctors told me at first that I had gallstones yet I hadn’t or stomach bugs and a lot more but I knew it was more than that. It indeed feels like you’re dying from the inside out, I felt like my gut was being eaten alive and I lost a lot of weight of not being able to keep my food in.

      The issue is that not everyone believes someone so young can have MRSA, or C. Diff because young people “are not supposed to have serious illnesses like this”. But add an immune illness to it and it changes everything. I was in shock when I found out about what C. Diff was… adding people to it who don’t believe you and you lose part of a reason to want to stay alive. At least that’s how I felt at the time, now that I finally talked about it so openly, I realize that real friends don’t treat you like this. On the contrary, if it were one of my friends who had this, I’d tell them to “take my hand, my arm or whatever you can grab and we’ll beat this together” instead of going around my back checking with hospital staff if what I had was real. In the end, C. Diff was eye-opening in a lot of different ways.

      I also hope you won’t have to deal with issues like this, I can only imagine what you’re going through so take care!

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