Musings

How to live in a state of perpetual denial about your chronic illness: a helpful guide

(I have a rare chronic kidney condition, sexily named Gitelman Syndrome. You can read all of my posts about it here. In its most bare-bones explanation, a tubule in my kidneys doesn’t know that it should be keeping electrolytes – namely salt, potassium, and magnesium – so it wastes them instead and my body is chronically deficient in these key elements which are really important for things like keeping your moods stable, your energy levels up, and your heart beating. The little things, you know?

As chronic illnesses go it’s a pretty tame one. I just get tired a lot, my muscles are bunched and feel tight like bone, my moods are all over the map. The treatments, too, are pretty mild. I take a lot of pills, sometimes I need to sit in the hospital overnight and get an IV. But sometimes I don’t take my pills, even though I know I should. Sometimes I don’t get blood tests, because I know what they will show.

Denial is a funny thing, so I tried to make it funny, now that I’ve bounced back out of my latest slump. I hope this will resonate with anyone else who deals with chronic illness, or knows a loved one who does.)

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1. Don’t take your medication. You’re busy! So maybe you just forget. Or better yet, maybe you remember but stare at that handful of pills and come up with reasons to take them later, after lunch maybe, when they won’t irritate your stomach. Or after dinner, so you can space out the dosage a little. Or, a personal favourite, stare at that brimming palm-full and just flat-out refuse. Think, “To hell with this.” and decide not to even acknowledge the irrefutable reality that your existence is dependent, in large part, on these innocuous looking little tic-tacs.

You are what you eat, right? And only sick people have to eat handfuls of pills, ergo if you don’t take yours you’re not sick anymore! Guys, it’s LOGIC!

2. Do things that make your condition worse. For me this includes such wild activities as drinking coffee, eating black licorice, sweating, ever having even one alcoholic drink ever goddamnit, etc. Basically just decide to LET LOOSE every once in a while and wholly ignore the inevitable price you’ll pay,  because….reasons.

3. Never wear your MedicAlert bracelet. Because did you know that if you don’t wear the bracelet, your chronic illness disappears? It’s true! Promise!

4. Snap at loved ones when they ask if you’ve taken your medication. Because you know what, ADAM? I am a PERSON, not a DISEASE. And as a PERSON, I have MOODS. I am ALLOWED having moods, you know. Good moods, bad moods, HELL, even bad moods that last for an entire week and demonstrate a 100% correlation with a simultaneous decline in medication-taking and- you know what? I don’t want to talk about this anymore! I said good day!

5. Skip doctors appointments, labwork, and other diagnostic tests. If you don’t do the tests, no one can prove that you’re sick, see? I mean without labwork showing that my levels are in the toilet, I can misappropriate blame for my extreme fatigue, moodiness, and aching back to any number of things. I’m busy! Olive has stopped sleeping while her bottom 4 teeth make their dramatically slow entrance into her smile! I’ve been doing yard work! I AM NORMAL!

 

Ugh, seriously guys. Denial is a horrible thing. Is it just me? I’m really hoping it’s not just me.

Here what I have learned (again) that will hopefully help in the future: Take your medication, and once you are on an even keel again write a note to yourself about how you are feeling. Witness your calm, and your energy, and how you can do more than lie in bed and cry and snap at people around you (including your adorable daughter). Keep this note somewhere safe and show it to yourself the next time you think that you’re doing great! And are fine! And will just skip your pills! Because you clearly don’t need them!

You do. And I do.

I’ve written that note, and now I’m off to pop pills LIKE A BOSS.

 

 

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12 Comments

  • Reply Fee June 21, 2014 at 9:14 PM

    Reading your blog actually reminded me to take my medication today!!! My regular excuse is “I need to take these with food right” (I don’t..), which either gives me an excuse to eat more, or not take my kidney meds.

    Also I was wondering from a previous post of yours ( and I would not normally comment on health things ) but with your 3 litre water diet, is that ok to do with your glitchy kidneys? I know with me and my kidney issues, when I drink too much water my kidneys have some trouble processing so much water and I can end up feeling worse. May not be your case but something to watch for?

    • Reply sweetmadeleine June 21, 2014 at 9:37 PM

      I actually stopped yesterday for this very reason! I’ll have to do a follow up post 😉

      Sent from my iPhone

      >

  • Reply Emily Stapley June 21, 2014 at 9:57 PM

    Oh geez– I am glad to hear you’re on the mend. It sounds like you went through a really rough spot there. I’m kicking myself because as I was reading this post I also (like Fee) was thinking about you drinking 3L water/day and wondering if that caused you any problems over and above what you were already dealing with. I should have made the connection sooner and given you a head’s up, but I kinda forgot about your chronic kidney disease, so sorry ’bout that. I love your note to yourself idea– keep it close, and enjoy feeling good again 🙂

    • Reply sweetmadeleine June 21, 2014 at 10:42 PM

      You guys are honestly fabulous, an awesome lady named Rachel who has Gitelmans too actually emailed me to give me the heads up, a few days ago. And I was like “OK cool, but I’m INVINCIBLE!”
      Denial, right? 😉 Then I connected all the dots and stopped the insanity and doubled my pills and stated drinking coconut water instead – but not 3L of it 🙂

      A sincere thank you to you guys for looking out for me.
      xoxo

  • Reply jamieramirez June 21, 2014 at 11:25 PM

    plus, madeleine, you look smokin hot in that gown! but in all seriousness your hair looks amazing like you’re about to go out all rockabilly style and your smile is lovely. i am not kidding, actually, in saying i think this is a wonderful photo of you!!! is it denial you have to thank for that photo op? hey, the small things, right?

  • Reply craftiemum June 22, 2014 at 7:26 AM

    I do that with my asthma medication, and always end up in really bad shape! Bahhh, hate docs and meds. I always think: oh, I’m feeling so great now, maybe I don’t need to take the prevention meds… Stupid, I know, but still denial is so tempting. Tying to take the meds every day now… Again.

  • Reply tiredella June 22, 2014 at 9:56 AM

    I am so the opposite, pills don’t really help my condition but doctors keep guessing and giving me different kinds to see if they will help. I take them like a boss and they just don’t work…
    But still, I totally get your sentiments 🙂

  • Reply Sam Pereira June 22, 2014 at 5:16 PM

    Glad you’re on the mend. Meanwhile it’s just wrong that you look that FAB while reclining in a hospital bed!

  • Reply Pattimiller June 22, 2014 at 9:01 PM

    I too can relate….my condition get worse when I don’t eat ‘proper’ and I pay dearly when I have a drink.. But I too what to enjoy my life,I have fun for one day and then pay for it until my body ‘heals again. Having a medical problem people can’t see on the outside makes things rough sometimes. But I too will keep this post and read it next time I want to indulge in something I know I shouldn’t. Hugs ( but I always take my meds. And you should too).

  • Reply Emily June 23, 2014 at 5:59 AM

    Ugh, I can relate. I have Crohn’s Disease – certainly the *sexiest* of the autoimmune diseases… not. Prepping for my “annual round of invasive and humiliating Crohn’s tests” tomorrow and having quite the pity party for myself. But I am reminded that everyone has something going on! Take good care of yourself. As a former boss used to say, “If you’re not good to yourself, you’re not good to anyone else.”

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  • Reply Melissa Anne Rivera June 18, 2017 at 4:22 PM

    I just found your blog on Pinterest after looking up Gitelman’s Syndrome. I have not yet been diagnosed, but my Nephrologist is certain that’s what I have. Whether it’s Gitelman’s or not, I have an issue where my kidneys dump my potassium and magnesium. I want to caution you about not taking your meds. How we found out is I rolled out of bed, gasping, and by the time I hit the floor I was dead. My husband performed CPR while my 13 year old called 911 until the police arrived. They used a defibrillator three times with no success. The EMT performed CPR and after breaking at least one rib, were able to restart my heart. My 10 year old asked as they took me by ambulance, “Is Mommy going to die now?” I spent the next 6 days on life support with pulmonary edema, with my family unsure of whether or not I would make it, and how much brain damage I would have after being dead nearly 15 minutes. My potassium was 1.5. I didn’t know my potassium was even low. I didn’t know this was a thing. Please don’t not take your medication. For me, the heartbreaking part was my kids. What will my 8 year old daughter do without her mother? What will my 2 boys do without me? Take your meds, not for you, but for your baby girl. Please don’t do that to her.

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