Pseudomembranous (Clostridium difficile) colitis - toxic megacolonLast year I heard the news that a friend of mine – who also had MS – passed away. Soon after, two more friends. Life can be unkind and hard when young lives are taken from us much too early.

There is uneasiness in the MS community whether multiple sclerosis should be classified as a terminal illness. They never refer to their chronic illness as terminal, even though the media often does.

As an autoimmune illness, MS does make you quite vulnerable because of your impaired immune system, as the body in a sense attacks itself. Infections of any kind have to be avoided at any cost, as they can trigger relapses and lead to more painful times. And that was how my worst side effect yet started, and how I suddenly was too close for comfort, too near my own funeral.

Mortality is when living things stop being around and start being a long, painful memory or just a flicker of a thought in the back of your mind. Mortality we all have to deal with it at some point in our lives, and after gradually deteriorating between November 2007 and March 2008, it seemed that I was on a path I was desperate to avoid.

Being confronted with my own memories of slipping away was something I had 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 out of the blue life, my life, can be taken away. The odd time the emotions surrounding it still grasp me though, because it had, and still has such a large impact on my life, how I now have to live it and the way others might be affected also.

Nevertheless, with my 30ish daily pills and daily injection, I try to maintain a reasonable 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. Having multiple sclerosis and a few other conditions, I was and still am physically weak but I never thought that mortality 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 bad ulcer to having a liver issue. In fact, it was none of these things.

Around zero hour, I started having pain in my abdomen. Whatever was brewing inside me, kept on harassing me, and I gradually got worse. Feeling 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, excruciating facial and eye pain, and the abdominal pain, cancelled events and even Christmas all went down the drain. I had to cancel seeing my niece and nephew, as I could only sleep, and then sleep some more.

By March 2008, abdominal pain was so violent sitting down had become impossible. Something serious was going on, and I was admitted in hospital. At first doctors could not find what was wrong. Four 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 outside the operating room, the nurse remarked on my age, as I was so young for an illness like this.

gram neg rod36039Result from the surgery: Clostridium Difficile, otherwise known as C. Diff or C. Difficile.

The head of surgery told me I was quite ill, and since C. Diff is a hospital-acquired superbug, I was put in an isolation room. My first thought was “Woohoo, a hospital room all to myself!” I had no clue what C. Diff was, so a quick Google search shocked me when I read “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 I should not have this at all, but 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 I had been given a brand new lease of life.

The superbug that had been staring in my eyes for weeks and months seemed long gone, but it left me wondering. I had been dragged through an abyss, and that abyss had been the day before the rush into surgery. My mum, obviously worried, called asking why I hadn’t been in contact yet. I told her nurses were looking after me, and that I’d call her back when they were finished. But I didn’t call her until later that day 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 realized that that phone call could have been the last time ever 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 literally 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, so I was not going to give up, yet it was hard trying to stay alive that day with a superbug eating its way through my gut and immune system. But I had no other choice, I simply had to stay alive.

I survived, and with a zest for life that would scare many, I now have to stick to a rigid care plan. Because a new contamination with C-diff is possible, I now have to clean with near boiling water, do my dishes in near boiling water, I can’t share my cutlery, glasses, cups, plates and anything else from the kitchen, and need my own bathroom too. It’s a small price to pay if I can stay alive and superbug-free.

I are what you create, so I battle on. And I stand up taller than ever before. Every cloud has a silver lining, and what remains is love for family and friends that truly mean well. That is where beauty lies, and where it will remain. Having stood halfway my own six feet under, it’s not where I will be found 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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6 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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