Silver Linings

Pseudomembranous (Clostridium difficile) colitis - toxic megacolonLast year I heard the news that a friend of mine – who also had MS – passed away. A few weeks later another friend with MS died, and a few months later another one. Life can be unkind and hard, especially when young lives are taken from us much too early.

There is uneasiness amongst the MS community about whether MS should be classified as a ‘terminal illness’. People with MS never refer to their chronic illness as terminal, even though the media often does. It does, however, make you quite vulnerable because of your impaired immune system, as the body in a sense attacks itself. Infections of any kind therefore have to be avoided at any cost, as they can trigger relapses and a return to more painful times. And that was how the problems 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 my time had come.

Because my friends passed away in such a short period of time, I was confronted with my own memories of slipping away. Writing about it was a catharsis, as I finally found the strength to confront my own feelings about this. The odd time it still grasps 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 28 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 when 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.

About five months before dragging myself into the emergency room once again, I started having pain in my abdomen. Nothing too severe at first, but whatever was brewing inside me, kept on harassing me, and I gradually got worse. With feeling run over by a truck and train at the same time, my thoughts also fought to stay positive, 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.

Eventually, by March 2008, I was so ill, I knew that something serious was going on, so I went to hospital once again. I was admitted, but they 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 surgery doctors tried getting a drip into my veins, but after having had so many cannulae, they have a tendency to disappear when doctors, nurses and needles get closer. I had two doctors on each side of me poking and prodding my arms, and fell into a slumber. When I woke up outside the operating room, someone said, “And she’s so young, never seen someone so young with this.”

gram neg rod36039Result from the surgery: Clostridium Difficile, otherwise known as C. Diff or C. Difficile. The head of surgery came into my room and told me I was quite ill, but that the medical staff would look after me very well. I was put in an isolation room because C. Diff is a superbug, and people with impaired immune systems are vulnerable. My first thought was “Woohoo, sure, at least I will be able to sleep if I’m alone in a room, no snoring of other patients during the night!” But I had no clue what C. Diff was, so I looked it up on my mobile phone. Shock and horror went through 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. As always, the nurses were quite supportive and they served 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 so 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 brain and a 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 about life and those I love and cherish. I had been dragged in too deep, and the abyss had been the morning before the rush into surgery. My mum called asking why I hadn’t been in contact with her yet. I told her the nurses were busy looking after me, and that I’d call her back when they were finished. But I didn’t call her until later in the day, and although I absolutely hate lies and liars, I couldn’t face dealing with anyone at that moment. I was too ill, and too far gone.

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, with MS as a severe underlying illness, 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 quite 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 am the creator of my own life, 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.

© WVE and Ireland, MS and Me, 2011-2013. Unauthorized 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

12 Comments

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  6. Roy McCarthy says:

    Thought provoking Billie. Few of us get to confront our mortality and to discuss it so openly. A very good friend of mine down in Cork recently suffered a brain hemorrhage and was operated on in CUH. I spoke to her last night for the first time since and she related how she was very aware of her chances going into theatre, and of her relief when she woke up with everything in working order. She can’t praise the neurological services in Cork enough.

    • Billie says:

      Thank you Roy for your comment. I hope your friend is feeling better, and that she’ll continue to improve day by day.

      The reason for writing this blog post was because it was something I needed to address and because writing has proven to be a good healer. Facing your mortality is something most people don’t think about unless they find themselves in scary situations. Also, addressing C. Diff on a personal level was something I hadn’t read about online and I wanted other people to know what it was like when faced with it.

      My blog needs to be a totally honest account of what goes on in life with a neurological illness and I absolutely appreciate it when people can relate to what I write. Thanks again for the comment and I’m looking forward to reading more of your blog! :)

  7. suej says:

    MS Fatigue and a much reduced immune system are not ‘visible’ as such, and so we will always find people that do not understand the very real issues we face……

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