Writing with ME/CFS #1 – surfing the web for THE ANSWER

********  CAUTION: These posts tagged CFS are a product of my struggle to write in spite of a chronic illness that has brain fog as a side effect. They are probably not interesting except to people who live with/try to write under similar circumstances. They are not intended to be whiny – though they will often sound that way. They are intended to be factual, and to help me find workarounds.

I wouldn’t bother except this is my blog, and I need an outlet, and a small subset of readers may find something helpful. Writing helps me sort things out. You have been warned! Welcome!  ********

The mornings when the psychic energy to block the web is missing, I roam the small set of sites I follow, looking for someone else to give me words to read.

Today’s excuse was that DH called me from work before my brain was on: he’d left important papers in the front hall and a frantic romp through two computers and a memory stick were required to email him usable copies. Other days it’s been a call from a doctor’s office requiring me to do something immediately, or a call from my dad needing a bank transfer…

I’m seeing a pattern here: whatever the attention-consumer is must be dealt with RIGHT NOW. PWCs (persons with CFS) have a much smaller amount of usable psychic energy – which I will define as the ability to MAKE myself do something as well as the ability to ACTUALLY do something – than normal people. It’s part of the brain-fog problem. If I could jot the interruption on a sticky or my ‘gathering’ sheet or type it into Things – and deal with it in the normal course of business (maybe today, maybe not until next month), it would lose much of its power to consume. But I can’t – this is an EMERGENCY and must go to the top of the list. Worse, it must be done NOW.

Somehow, I come up with the energy to deal with what needs to be done – and it gets done – but there is an aftermath, a surcharge if you like, and the accomplishment is followed by a period of being awake but completely non-functional. We PWCs really can’t afford adrenaline – it takes much longer to metabolize it.

During that aftermath I often surf the web.

I’m looking for THE ANSWER. What’s the question? Who knows – who cares? Something in me wants someone else out there to tell me what to do, now, in such an authoritative way that it drags my mind out of the hole and gets it to work again.

There’s nothing there. I have a file where I record the ‘nuggets’ gleaned from surfing, the things I am absolutely grateful I have discovered. A short list (Dec. 2012-Jan 2013):

I: Standing desk, walking desk [PV + comments]          3:02 PM
I: Boomer Novels – and Boomer Cafe website [PV]       9:41 AM
I: Sworn Secret,  Amanda Jennings [Dead Guy – Lynne Patrick]
E: Friend – Have started Freedom: IT CAN WAIT        11:17 AM
I: Sharon Reamer. Good book video, cover [PV ->]    12:27 PM
I: Dropbox – saving your information         [PV?]          12:27 PM
I: Reviews [PV], bloggers charged with defamation    12:29 PM
I: Decision fatigue – and sugar!

I: means the nugget came from the internet, E: that the information was in an email. PV is thepassivevoice.com.

Looking at the list, I can see that many hours of surfing went into relatively few really critical pieces of information – and ALL of them could have waited. Until the day’s writing was over, at least, or until the next day. In the case of late ones, I was surfing instead of going to bed, thus mortgaging the next day’s writing, for the relatively small pleasure of today’s surfing. I KNOW these things – it’s a little daunting to see that my precious nuggets are so irrelevant.

Back to the question of Why? I think it is because, like playing solitaire or sudoku or a million other games, the ability to do something that looks as if I’m using my brain – ie, being human – is required to keep me sane. And I have used up the ability to be creative, so I settle for the APPEARANCE of creative: Look – I solved another HARD sudoku puzzle! I’m ME. I’m functional!

This is data. I don’t think I’ve put it quite this clearly before: human brains WANT to create, to ‘do something useful with their time.’ If I can’t have real, I will settle for apparent. It’s Catch 22: if I have the energy to get myself out of the loop, I’m not IN the loop. If I’m IN the loop, I don’t have the energy to get myself out.

I’m learning. I can restore SOME functionality when I can put myself down for a nap. Afterward, most of the time (depending on the surcharge), there is some restoration of functionality for that day, that time – I may even get something done.

THE ANSWER: to be normal. It’s not on the web. It’s interesting that after 23 years I still look for it. The brain wants what it wants: to be the way it used to be.

Thoughts? Please share.

6 thoughts on “Writing with ME/CFS #1 – surfing the web for THE ANSWER

    1. ABE Post author

      After the morning from h*ll (going to bed KNOWING there is water on your basement floor, the rug is wet, the boxes of books and papers you haven’t gotten around to sorting are wet, and the emergency plumber will be there between 9 and 11am is only the beginning of the story), and a long phone call (another energy consumer – but I hadn’t heard from her in a while), I hit the only thing that works for me: the ME/CFS RESET button – go to bed. For a longer than average nap. Then pray. Then re-prioritize the day, putting writing first (right now) if at ALL possible.

      If I don’t get the beginning of Pride’s Children up and running today – and registered over on Tuesdayserial.com – it won’t be for lack of trying. Thanks for the encouragement. I’ll be giving it its own page on the blog, and posting a scene or two at a time (the rough draft is done, but I’m revising/polishing before putting them up – that’s my incentive to get through the hard work of revision), once a week until it’s done. You’re welcome to read as I go – or wait until it’s all done. Either will be at CFS speed.

      Feedback much appreciated.


      1. jackiewriting

        Ideal – I read at ME/CFS speed too so I’ll try to keep up and give feedback, if not I’ll definitely read it when it’s finished! Reading is one of my big loves, and like you it’s a way to leave the world behind.. I hope your morning from h*ll has sorted itself out now x


        1. ABE Post author

          I think I’ve got it. My navigation bar now has a menu for Pride’s Children.
          The new link to Pride’s Children is at Tuesdayserial.com.
          The beginning is posted. Prologue + Chapter 1, Scene 1.1.1.
          Bear with me as I figure out the newbie stuff – I will get it fixed if it’s not right.
          If it IS right we call it beginner’s luck.


  1. jackiewriting

    It’s so hard. People without me/cfs don’t understand how hard it can be just to even THINK about doing something sometimes, let alone actually doing it. I don’t understand, but I still get frustrated at myself and with others. Being normal hasn’t worked for me though. I tried to ‘forget’ I have me, with dire consequences. I’ve had to strip my life down to the bare bones and I’m slowly building it back up again. I’m not doing more, but I’m learning to do what I do gradually, to ‘pace’ myself. To forgive myself and not feel guilty for being lazy or saying no. For a long time I’ve found it extremely difficult to accept that I have a chronic neurological illness, but I now realise that I may never be ‘cured’ but if I manage my symptoms I can live with them and ease them somewhat. I’m slowly making progress 🙂 I’ve written a few posts on my journey with me, stop by and read them if you like.. I wish you the best x


    1. ABE Post author

      Nice to meet you, too! What you said is so true: until they come up with a cure, self-management is the only tool we have. We don’t have the option to ‘forget’ – unless we don’t want to get anything done that day (and maybe others).

      I can only write if I self-manage: it’s the price I pay. Sometimes it doesn’t work – but all the writing that has come so far happens when I’m as rested and well-nourished and de-stressed as I can manage. The ability to write, to bury myself in a fictional world where I control everything, is a great gift.

      One of my three main characters in the WIP, novel Pride’s Children, has CFS (or ME/CFS or CFIDS – or even the old ‘yuppie flu’). I’m curious to see how the world will receive the story, which I’m about to start serializing (takes a bit of courage and a bit of defiance).

      If you have the energy to read, I’d love to hear what you think.



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