It’s been a rough last few weeks and by a few I mean almost six entire weeks since my mystery illness resurfaced and claimed me for its own. I’ve fallen victim to its surprise attacks before. It first started when I was doing my undergrad, though it wasn’t as severe back then, mostly sharp abdominal pain, bloating and cramps with the occasional spell of diarrhea. Then intense heart-burn was added to its arsenal of weapons. Heart-burn so bad I would wake up at night, my throat burning with a fiery fury, and stay up for hours with the persistent threat of imminent vomit.
Side note: I’m terrified of vomiting. I’ve only ever vomited a handful of times in my entire life so severe nausea makes me anxious.
During one particularly bad spell a couple of years ago I had to quit my job because I was either too sick to come in, at a doctor’s appt, getting a test done, or lying awake wondering what the heck is going on with my body. Two years ago I was getting amazing one-on-one personal training, and working towards my goal of bench-pressing my body weight, when the mystery illness reared its ugly head again. I had to quit my training because I felt bad repeatedly cancelling my sessions last minute to get off the subway and run to the closest washroom. Luckily while I was pregnant and up until now I was granted a long break from its clutches. I foolishly believed I might have seen the last of it..
What does an attack look like?
I’ve taken a Zantac, propped myself up high on my two pillows and have fallen asleep. As the heart-burn begins to boil I start having movie-like nightmares. Vivid dreams of horror: getting trapped in a forest fire, running away from lava, devastating car-crashes. I wake up, my throat burns and it feels as though it’s constricting. I’m extremely nauseous. I’m very bloated. I’m having sharp abdominal pain. I get up, try to have some water or take chewable tums. Then the evil diarrhea strikes, sometimes more than once. I’m up for hours trying my best to stay calm and focussing on not vomiting. As the diarrhea continues my weakness and fatigue worsen.
I start to get anxious thinking it’s almost morning now and I have a full day of taking care of my rambunctious toddler ahead of me.
I try to go back to bed. This time I’m fully sitting up so as to not make the heart-burn worse but it’s now almost impossible to fall back asleep. This continues for days, for weeks, for more than a month.
So what’s wrong with me?
I’ve had countless tests done over the years and with every new attack but I’ve received very few answers. There’s nothing structurally wrong with my stomach, no ulcers, no h-pylori bacteria. The only thing doctors were able to find was that I wasn’t metabolizing yeast well. I changed my diet to avoid yeast. I’ve had a PPI prescribed for the heart-burn which is pretty effective against the heart-burn but inevitably results in the diarrhea worsening. I cut out coffee, alcohol, dairy and spicy food. Adjusting my diet helps to not exasperate the symptoms but it doesn’t alleviate them. Essentially I just have to ride out the attack.
It’s frustrating. It’s draining. It makes me feel sad. I try not to feel scared but some nights I can’t help it..
I miss exercising. I miss my morning coffee. I miss feeling energetic.
I can’t make plans to do activities that involve long drives or periods away from easy to access washrooms because sometimes I have barely any warning before a major diarrhea attack strikes. I’ve had to cancel on plans at the very last second. I recently missed my close friend’s bachelorette party. This past weekend I thought I was finally better. I had two blissful days of feeling like my old self. We threw a barbeque party at my mom’s house. All day I was getting the house ready, watching Elowyn and cooking. When the guests arrived I ate dinner with them and essentially right afterwards had to retreat to the restroom. I went from lying on my mom’s bed to the bathroom four times. After the fourth diarrhea episode the nausea had gotten to be unbearable. I was so tired. My legs were shaking. I notified my husband that we had to leave the party.
I went straight to the car. I didn’t have the strength to explain to everyone what was wrong and why we had to go.
I was too nauseous to speak more than a few words. I didn’t say goodbye to anyone. I just retreated, angry that this was happening again. I’ve gone through many phases. From being anxious my mystery illness would kill me to throwing myself a pity party.
I found it helpful to unplug for a little bit, to take a break from social-media and a reminder of all that I was missing out on.
My Instagram feed is essentially all foodie and fitness accounts both of which are things I was dying to get back to.. tasty treats and epic workouts. It helped to let my husband know that all I wanted to do was have a peaceful shower and a nap. He’s very supportive but he’s not psychic. I don’t look ill and normally I’m always up for a fun activity so when I’m feeling especially bad it’s important to let him know.
Now I’m in a much better head-space. I’ve moved on to accepting that it could be much worse. I’m not having any of the “red flag” symptoms. I’m slowly improving. This too shall pass.
This is the mantra I keep telling myself:
I’m strong. I can do this. It’s going to be okay. I’m grateful for another day with my family.
I have the most special gift in my daughter Elowyn. She gives the best hugs. My eyes can’t help but light up when she runs towards me and excitedly proclaims “mommy!”. Every day with her is a day worth making the most of-even if it means a few extra trips to the restroom.
Sofia Martimianakis
That sounds awful! But you sound like you are winning the battle against this terrible and debilitating syndrome! I’ve had bouts of IBS myself in the past, and those are not fun at all! Stay positive!
Peace and love – Chamblain
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Dear Sofia
I am so sorry to hear that this upset stomach has come back and influenced your life so much. Hopefully it will go away just like the last time with the help of a good doctor.
Love you
Shirin Aghili RM; BSc; MSc
The Hamilton Midwives 189 Hughson St S Hamilton ON L8N 2B6 905.527.8919
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I’m sorry you’ve been feeling so badly. Hopefully the doctors can find a permanent solution to this. *hugs*
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Thank you so much! I am finally feeling better (=
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Goodness, I am so sorry that you have to deal with this. This sounds like something intense like a mix of vertigo and stomach flu. While vertigo may explain waves of nausea – it does not cause any of those other symptoms.
I am sorry that tests have turned up inconclusive. I have struggled with a health issue in the past where tests also could not pinpoint anything and it was devastating.
I wish you the very best. I am not sure if you are of any faith, but I will pray for you to feel better. Keep staying strong ❤
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Thank you so much for your kind remarks! I am a religious person and thank you for keeping me in your prayers. I am finally starting to feel better now (=
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Sorry you are having to go through all this. Hope the mystery is solved soon and you can get back to normal. Allan
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Thank you so much for your well-wishes! I am finally feeling better (=
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Wow, that sounds awful. I hope you feel better soon or get a diagnosis to help you move forward.
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Totally sympathise! It’s awful when things like this come on and make life hell. One day at a time eh?
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Definitely. And I was counting down the days until the weekend when I would have support from my husband at home and could get some much needed rest. Finally feeling better now (=
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I feel you. Not knowing what the problem is, and the randomness/suddeness of illness can be so frustrating. I hope you find out what the problem is soon. I’m sure you’ve heard of it, but just in case, my friend told me about the FODMAP diet, and whilst I have problems, it’s helped me a huge deal.
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Thank you so much! I actually had not heard about this diet until now. I will definitely try it during my next flare up.
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Hi, I am enjoying your blog, but truly cannot bear the thought of any young woman suffering with recurrent illness as you have described without a definite diagnosis. (speaking from many long years of chronic previously mis-diagnosed illness here). I just want to encourage you to keep asking questions and going to new doctors until you get the answers you need. Unfortunately, you might have to go through MANY doctors to find one who can help. Do not be discouraged, and do not give up.Your current situation is simply unacceptable!
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