November 18, 2012

How Does It Feel?

Posted in ME/CFS tagged , , , , , , , , , , , at 5:02 pm by Reva

Usually when people ask me what it’s like to have ME/CFS I direct them here to “The Spoon Theory” written by Christine Miserandino.  I found this in the early days of my diagnosis and think it explains the decision making process we go through each day so well.  But occasionally people want more, they want to know how it physically feels.  I’ve heard people compare it to having a really bad flu that just doesn’t go away, in combination with a hangover, running a marathon and so on.  But I find it hard to do this.  I’ve never had the flu (touch wood), I never had particularly bad hangovers or at least when I have had a hangover I’m pretty sure it was actually lack of sleep that I was symptomatic of, not excess alcohol.  And I’ve never run a marathon (and let’s face it, it probably will never happen).

I have trouble verbalizing what I want to say.  My brain and mouth don’t seem to connect most of the time.  So I thought I’d write it down to try to convey it.

I feel like my limbs are filled with sand, like they are so heavy I can’t lift them.  Every step I take is like dragging a sack of sand behind me, and my arms hang loosely by my side because they’re too heavy to lift.  If I’m carrying something, it takes every ounce of willpower to keep my fingers gripped so that I don’t drop it.  My head is heavy too, so heavy my neck can’t hold it up on its own and it needs the help of an arm which in turn needs to rest on a table.  The room around me sways.  Many a time I have stopped and steadied myself and wondered if there has been a small earthquake, then looked around and realized no one else felt anything.

The idea of eating is exhausting even though I’m hungry.  It’s easier to stick to soft foods that I don’t need to chew, and preferably can eat using one arm (while the other is still holding up my head).  Unfortunately this can lead to some bad choices.  Nuggets and chips, chocolate; my body craves fatty or salty foods or combinations of both.

There is pain all over.  Kind of like the pain you have after a good work out, but it’s everywhere, and it moves.  I can’t get comfortable because when I move one part of my body to make it more comfortable another part then starts to ache.  The best way I can explain it is it feels like muscle pain, but it’s more focused around my joints.  It’s bad when I’m standing.  Sometimes it’s worse when I’m lying down.

My head feels like it’s filled with cotton wool. There’s constant tinnitus.  It drowns out all the other noises and makes it hard to concentrate.  Speaking of concentration, I can’t.  My mind can’t stay focused on anything.  I can’t read because I find while I’m concentrating on the print, I can’t take in what the words are saying.  Of course, that’s if the book isn’t too heavy for my already heavy arms.

I can’t carry on a conversation because between listening to another person, computing the story and coming up with a response, my brain has somehow disconnected from my mouth.  It’s worse if I’m in a group.  When my mouth finally opens the story has moved on and whatever I’ve said is no longer relevant.  So I sit back and listen – at least I know what’s going on then.

Bright lights make my eyes flicker and squint.  And I’m cold, so cold. Right down to my bones cold; and I can’t get warm even though I can feel it isn’t ACTUALLY cold. That is until the middle of the night when I wake up sweating.  I can feel the air is cold but I’m SOOOO hot!!

I’m constantly trying to catch my breath, and feel like I’ve been walking up stairs.  I try hard to disguise it, especially around people who don’t know. I don’t want them to think I’m just unfit.

My throat hurts, like the start of a cold or flu that just seems ready to tip me over the edge but doesn’t quite get there.  I start to sniffle and sneeze but I know it isn’t a cold.  It’s just my hayfever that seems to flare up when I’m already tired on the verge of a crash, not when the flowers are out and the wind is blowing like with other people.

All of my symptoms change from day to day, and one person’s symptoms will never be the same as the next persons.  Each ME/CFSer is a unique combination of symptoms, aches and pains.  It’s probably why diagnosis is still such a long drawn out process.  It’s also what makes it so hard for us to explain.

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6 Comments »

  1. E. Milo said,

    Right back at ya:

    I have no idea how many followers you have, but I really like your blog, so I nominated you for a Liebster Award.

    My questions: https://ldndiary.wordpress.com/2012/11/20/liebster-award-part-3-my-nominees-and-questions/

    • Reva said,

      Thank you!! I started this blog for my own sanity, I feel so excited that people are reading it xx

  2. E. Milo said,

    PS: If you don’t have the energy to fulfill the Liebster criteria AGAIN, I totally understand. That’s a lot of work! 😉

    • Reva said,

      I will definitely answer your question! But I might struggle to replicate the other parts. Is that okay?

  3. Mommabel said,

    I keep on trying to explain it. I forgot about the spoon theory. Maybe I should print it out and keep it with me and just point at it. I really like your explanation of the mental symptoms. Thank you for trying to shed some light on it..

  4. Reva said,

    The link I put in has a PDF version of it so it prints nicely. I used to keep it on my fridge when I lived in a share house.

    I was in a class recently and the way the someone explained the second law of thermodynamics made me think of the spoon theory. I’ve looked up the second law and think that it could be a good way to explain to someone who is a sciencey person – I think it basically say a closed vessel has a set amount of energy, it doesn’t make more but it might change it’s form. When we wake up we only have a set amount of energy, that can’t increase across the day, we have to work with whats there.


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