Living through fear

Courage is resistance to fear, mastery of fear, not absence of fear

Mark Twain


Marge: Everybody’s afraid of something.
Homer: [smugly] Not everybody.
Marge: Sock puppets.
Homer: [shrieks in terror] Where? Where?


A friend recently remarked on how surprisingly blasé I seemed about the possibility of getting worse. “You could become seriously unwell again – and you don’t seem concerned at all!” The fact is, I am always concerned about the prospect of relapse. The thought that one day I could wake up and be totally paralysed is a permanent backdrop in my mind, and it is utterly terrifying.

A life with ME/CFS is always unpredictable. So although I could overexert myself one day, and find myself permanently worsened the next, as my friend was suggesting, I could just as likely do nothing different and still find myself experiencing a similar setback. For myself at least, relapses make no sense, and there is no logical progression to my symptoms (although I’m sure a biological explanation will be found by researchers one day).

It is the lot of a spoonie to somehow live with this uncertainty, and the fear that goes with it. For as blasé as I may appear about my debilitating symptoms, I am still afraid of them. Every day, I fear that I will not be able to get out of bed. As often as it occurs, I still fear I will collapse on my floor at home and be unable to move. Or worse, that I will not be able to make the few steps from the car to the shop, and end up paralysed on the footpath, with onlookers gawking.

You’d think that this would have happened enough for me to not fear it, but for years my nightmares revolved around collapsing in a heap in the supermarket. And not a day goes past where I don’t shut my eyes and feel that I am trapped in bed again, unable to speak, eat, or live.

Yet, I still get up every day. I still leave the house (now under supervision), I still shuffle my feet, talk and type, even though the exertion brings me to tears. I know that every time I perform an action, it may be the last time I do it. And somehow, I grapple that fear, I live with it as a constant companion and just keep going.

Just because someone with a chronic illness appears at peace with their symptoms, it does not mean they are not afraid. We have fear, but we live with it and through it.


Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

13 thoughts on “Living through fear”

  1. Oh boy can I relate to a lot of this. In my case it was going to bed without a cold then waking up the next morning with what would essentially feel like the next plague. And the constant wondering of when the next hospital admission was going to be. How bad the next cold/chest infection was going to be. Even though I’ve had my transplant, that’s actually now more of a worry because I have next to no immune system to my body doesn’t reject the new lungs so there’s the constant thought of “please don’t let me get a cold/stomach bug/etc because I don’t want to be sick again” in the back of my mind. Being sick sucks, 90% of the time. See you Tuesday (But let me know if you’re feeling dodgy/tired/having a case of the ‘cant-be-bothered’s at all and we can reschedule.)


    1. That must be super stressful for you Chantelle. I really, really hope your lungs take well and your body doesn’t reject them. Looking forward to Tuesday, I’ll let you know if I’m feeling like crap 😉 Thanks for understanding


  2. Hi Siobhan and thanks for your comments . Yes having ME sucks doesn’t it? I live in the UK, in Cambridge, and I’m just contemplating the herculean task of doing the shopping! Regarding anxiety-I suspect that people with ME are actually a good deal more anxious than the general population . This ties in with the well-known ME state of being “Wired”, when one feels anxious and vulnerable. I think it’s an aspect of it . good luck with that and I hope you improve! Very best wishes, Mark


    1. Oh boy, shopping is a HUGE effort. I definitely relate to the feeling of being “wired but tired”, and wonder if it correlates to some research findings coming out which suggest that the immune system of ME sufferers has been set off by an event (eg glandular fever), and has been operating on overdrive since. I hope you improve too!


  3. I really like your quote from Twain, fear is always there and persisting with the courage to resist it will always be a battle.

    You’re very brave cous, hope you don’t also have to deal with sock puppets 😉


    Liked by 1 person

  4. Hiya! Just wandered in, via Thornberry, hope I can join the party. I’m lucky enough not to suffer from a chronic ailment, but have several spoony mates, so hope I can offer spoons and encouragement. My lovely wife suffered from ME before I knew her, and can still get tiny flashbacks now and then.
    I love your style, and look forward to enjoying many more makes alongside you.


    1. Hello! It’s always nice to meet someone who appreciates a good Discworld reference. Thanks for the spoons and encouragement, and I’m sending them back to your wife for her bad times. x

      Liked by 1 person

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