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Sick and Sorry

19 Jun

It’s been almost a year and a half since I last wrote. We didn’t die in Iceland. We kept travelling west, we saw the US, we made it home, I finished my Masters’ Thesis, I graduated, I had a baby (he’s divine). A lot has happened.

But many things in life that I have, at some point, had time to do, have fallen by the wayside. Not because I was studying. Not because I became a mum.

It’s because I’m sick.

I don’t really like to talk about my physical condition very often. It’s hard. It’s hard to explain the chronic-ness of what I live with. I have a back injury from a car accident 4 years ago, that will never go away. I also have chronic fatigue, which is a garbage diagnosis, because it’s really doctors admitting that they don’t know what is wrong with you, but they’ll concede something must be wrong, because you look bloody awful.

Chronic fatigue (or Chronic Fatigue Syndrome, or CFS) affects people differently. Generally speaking, people with CFS aren’t refreshed by a night’s sleep, and this symptom carries on for more than 6 months before you can be considered to have it. So you act like someone who hasn’t slept for 6 months or longer. This is often coupled with other symptoms. For me, too much physical exertion and emotional exertion can result in a “crash”. This is exactly what it sounds like. I just stop being able to move for a day or so. But these “crashes” don’t come out of the blue. There’s a build up. While my sleep is not refreshing, my body still knows if I’m not getting it. That lack of sleep shows up as physical pain. I feel it most in my joints, and it starts in my shoulders and hips and moves outward. So once I get pain in my fingers and toes, a crash is inevitable. Normally, it can take 1 – 8 days to recover, depending on how much physical and emotional rest I can get. As a mother, I haven’t been able to fully recover from the crash that was giving birth. So live nearly every day on the knife edge.

This makes the everyday tasks in life pretty difficult. And now there’s a little baby around, it’s a bit harder again. Grocery shopping isn’t a single task anymore. It’s about 15 tasks. Get self and child into car. Drive to shopping centre. Get self and bub out of car. Locate shopping trolley. Simultaneously push trolley and read shopping list. Talk to deli attendant like human being. Get groceries into shopping trolley. Pray you haven’t forgotten anything because coming back will be murder. Assure bub shopping trip is nearly over (as though that will put off an impending outburst. Ha!). Get groceries onto checkout belt. Get shopping bags into trolley. Get trolley back to car. Get shopping into car. Get child into car. Get home. Get child out of car. Get shopping into house. Put away the essentials and leave the rest for super-hubby. Pray little guy has a snooze. Lie down.

And granted, I imagine nearly every new mother views grocery shopping this way. But there’s the layer of pain and additional fatigue that sits atop these many mounting tasks. Imagine a sharp object repeatedly being jammed into your lower spine all day. Imagine that feeling of needing to crack a joint, but you can’t, you just have to live with that pain (in all your joints). Imagine going to sleep exhausted, knowing you’ll wake up feeling the same. Now you’re starting to get the idea.

But more than just household chores are difficult. A regular conversation is difficult. The innocuous, “How are you?” is fraught with traps. I normally say, “Not too bad.” But I’m lying. I am bad. I’m always bad. I used to have good days, but the demands of motherhood mean there aren’t any good health days anymore. “Is he sleeping?” Sure, sometimes. Doesn’t mean I’m sleeping. But I don’t want to be the little raincloud that whinges about how hard life is. No one likes that person. Why should they? With a roof over my head, a beautiful little family who love me and food on the table, it could be far, far worse. And I’m aware of that. I want to acknowledge that.

So instead of grappling with the difficulty that is explaining myself, I retreat instead. I opt not to talk about my health. I try to steer away from subjects that could be touchy. I engage in less conversation. I don’t explain myself. And I imagine that makes me seem a bit cold.

And seeming cold is not a good idea when you can’t be particularly social. I’m not a particularly social person to begin with anyway, but oftentimes just getting out of the house is too much for me. I didn’t sleep the night before. I need to rest today because I have work tomorrow and I don’t have enough energy for two days worth of being out. I hurt too much to get dressed today, or brush my hair, or eat properly. But when I do come out, people are generally nice. A little perplexed, because I look perfectly normal and have offered no explanation for my general absence, but they are nice. “Will we see you next time?” “Maybe. I hope so,” comes my ambivalent response. I wait for the charity to end. Because I haven’t explained that I’m sick, that every day is bad, that I’m doing my best, but that looks like I’m not doing much. I’m just the cold bitch that doesn’t come out much.

The hardest part at present, is not being able to connect with other mothers. I need the village that is meant to help raise the child. But I can’t always get to it. And when I do get there, I can’t launch into what life is like for me. These are mothers. Nearly all of them have more than one child. They have hard days all the time. In all honesty, I’ve been to mothers’ group once. I didn’t have to do anything. I became a mum and, BAM, I was invited. The people were nice, but I’d just had surgery on a breast abscess having had mastitis. Someone said, “So you obviously aren’t breastfeeding anymore.” I felt really sheepish admitting that I still was. I don’t know why. The exchange still makes me tear up. It’s a fair assumption that once you’ve had a massive pustule on your boob ruptured by a surgeon, you wouldn’t let a tiny human gobble on it anymore. But I did. Still do. And admitting that makes me cry like a looney, so I don’t like to talk about it. And thinking about that comment makes me afraid to go again. So when the day is rough and I feel sheepish, I don’t go. But I do crave time with mums. I want to make friends. I want my boy to make friends. But I can’t escape being sick.

I don’t like to talk about it. And while I hope people read what I’ve written here, I don’t know that I’ll want to talk about it in person. I don’t want a pity party. I don’t want to be ungrateful for what I have. But I don’t want to be that aloof, unexplained acquaintance that sometimes comes out.

So, I’m sorry this isn’t straightforward. This blog doesn’t end with a bow. The loose ends are loose. I’m sorry I haven’t explained myself before, and I’m sorry I probably won’t want to talk about it much if you read this and bring it up. But there you have it.

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4 Comments

Posted by on June 19, 2016 in Illness and Injury

 

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4 responses to “Sick and Sorry

  1. Shane Clifton

    June 20, 2016 at 9:32 am

    sheez. so sorry to hear about your pain. These bloody bodies just are not fair, and it sucks that you had to endure this for so long. I promise to pray for you, even though I’m not sure what that promise would mean to you – after all, I’m sure you’ve had plenty of prayer. But at least I hope it means I’m thinking of you, and hoping that a solution is found, or at least that things get better. Love, Shane

     
    • supertiph

      June 21, 2016 at 5:59 pm

      Thanks, Shane. It’s always nice to have people offer to pray, even if I’m not always sure what to expect as an outcome. Luckily, CFS normally sorts itself out over time, so there’s a very real chance things will get better.

       
  2. chroniclesofthechronicallyfatigued

    June 21, 2016 at 10:34 am

    Apart from the part about being a mum (congratulations by the way!) I can relate to this 100%. Recently been diagnosed with ME/CFS myself and every word you wrote could have been from me.

    You are doing an extraordinary job though. Your baby is lucky to have a mama who puts him first and struggles through. You deserve some praise, and I hope you do have a good support system in your family. Don’t be afraid to tell people about your illness. I hope things get better for you – for me, for all of us – soon.

     
  3. hayleyeggins

    June 21, 2016 at 6:29 pm

    Thanks for being brave and sharing with us. Praying you are able to recover from the crash that was birth soon, and that you find some lovely mumma friends who love you just as you are, that you can feel comfortable with xxx

     

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