Tuesday, 13 April 2010


Long time no see!
I've been having some trouble getting a blog organised in my swirling blob of senseless brain! One of the most difficult challenges I have with my M.E./CFS (or my elephant, if you're not sick of the analogy by now!) is coping with reading, and writing text.

Just organising the thoughts, finding words that sound like they came from an earthling, (not some alien creature with a 'Teach Yourself English' phrasebook!) and then getting them down in print is a mammoth task for me. I'm often starting blogs, then after a few minutes I'm left disorientated and exhausted by the effort. In real pain and sensory meltdown.

To M.E./CFS newbies this must seem very weird, and kind of irrational-as sometimes I manage to string the sentences together almost coherently!

I can't write if I'm tired, shaking, in too much pain, being spoken to, or there's ANY kind of background noise. I need total quiet to have a chance of having a clear enough stream of thoughts.
I'm struggling big time just now, thinking about packing this blog in, as my husband (never gets it -Bless him!) has been in my bedroom giving me a rundown of something that happened to him yesterday. I know if I tell him to tell me later he'll be upset, so I just sit, and my brain loses all train of thought.

He's gone now, but my train has gone with him! VERY frustrating as I've been struggling with this all week!

It's almost a physical sensation. I'll try to describe it whilst it's happening, excuse any bad or mixed up sentences from here on.....
My head feels different, solid almost. I'm trying to find words and sentences to describe it but a list is easier-
heavy, turmoil, chaos, over-capacity, confusion, jammed up, can't think a thought to it's end - it gets lost-I get lost! I must stop-not the blog post I had in mind today, but I can't remember what it was. Maybe we have hubby to thank!

Humour-gone, coherency-gone, thinking-gone. Sorry!

I will be back !


  1. Here I am!
    Oh I am so sorry, but my brain just clammed up, shut it's mouth and shook it's head! It may sound a bit of a coincidence, but i was merrily blogging about how i find it hard to blog, when hubby came in. He was telling me something, and I think that, and my efforts to keep my train of though going, was enough to finish ALL THOUGHTS for a while!

    I was in two minds whether to delete and start again, but it is what happened, and I had some advice this morning-"just sit down and write, your blog will happen"-SURE DID! I only wish i'd managed to describe how it feels better-!

    When you guys have a brain-jam, thought overload, brain-drain etc-(whatever we want to call it) do you feel it as a physical sensation? I'd be really interested in your descriptions and experiences. Thanks for being patient!

  2. Zarla--I've never read it explained so well. I'm not alone in the ME/CFS hyper focus like crazy zone! No one can talk to me or make noise when I'm writing either. It drives my family crazy--as they wait and wait to tell me something or I say "shhh" when they're putting a metal spoon to a bowl or doing something that "clinks".

    Solid, yes that's what it feels like, sludging through mud to look for words. It takes me much time to write...and often my brain hurts, especially afterwards. When I write for too long a time, overriding my brains signals, I can have a hefty headache afterwards and have both physical and cognitive symptoms flare. Even now as I write this, my brain is not comfortable.

    FB and places where you just write a blurb--it takes me a long time to put that blurb together.

    Thank you Zarla for writing in the midst of ME/CFS brain sludge. These brain's of ours definitely are interesting if we keep on a laughing at them. Those of us who have ME/CFS and write, have to really love to write to go through it all...

  3. I Zarla. I found your blog through Kerry. You have described the difficulty of writing perfectly. Sometimes I don't know how I ever wrote that book. Well, I do. The first 3/4 was written a paragraph at a time over months and months. And then I broke my ankle. I was stuck in an isolation chamber of sorts -- meaning my bedroom -- and I didn't turn on the TV or have anyone around for weeks at a time. That isolation was what allowed me to finish it.

    My neighbors in California have a yurt in their yard!

  4. Toni,
    Great to see you here! Watch out for the elephant poop!

    I'm really interested in your book, can't wait till it's out! I'm really glad you got to write it, but I'm sorry you had to injure yourself in the process, how's the ankle now?

    Your friends have the right idea, yurts are wonderful, I am facebook friends with 'California Yurts'!
    You want isolation then go to the yurt, but don't tell anyone-everyone wants to come visit when they can have tea and biscuits in the yurt! Mongolian tradition means that food and drink is always offered to guests- and guests are always admitted!
    So, pop on over, I have some fb photos etc if you fancy a cyber-visit, I'll make you a cup of cyber-tea and you can have a cyber-biscuit too!
    Take care Toni,

  5. Hello, and welcome Kate.

    Great to see you are following my blog, while you are here, just watch out for the elephant poop!
    Take care, be as well as possible, and catcha soon.
    Zarla xx

  6. Thanks for asking about my ankle. It healed although the ball of my foot has remained a bit numb. The doctor doesn't seem concerned and I guess I consider it the least of my medical problems.

    My neighbors put up a yurt while they were doing some remodeling in their house. The remodeling is done but they say they prefer the yurt!

  7. Hi Zarla,

    Thank you for the welcome! I heard about your blog through Kerry, and am glad that I found you (thanks, Kerry!)

    For someone with brain fog/deficits you've described what it feels like to have brain fog/deficits extremely well! I am going to print your post out and read it my husband who deals with my fluffy brain on a daily basis.

    Since I also have a dissociative disorder, my slippery brain gears and cognitive holes due to CFS make life very interesting, to say the least.

    I have learned that I cannot multi-task at all if I am either listening or reading or writing. Since my train of thought jumps the tracks in (what feels like to me) a random manner even when I'm just doing one thing, I definitely can't walk and chew gum at the same time.

    The derailing of thoughts is especially annoying in a conversation when I lose focus of what I was building up to. Since I'm a verbal person it feels like a real loss.

    Not retaining what other people have said to me is a newer phenomenon. The information goes in...I think...but doesn't get filed.

    M husband just commented today that my short term memory has worsened. My concentration levels are also poor...but not all the time. I can concentrate on doing artwork and creative things (not all the time, but when I've gotten okay sleep and my pain level is down)

    I wonder if that's because creative processes use a different part of the brain...?

    Sometimes I describe myself as having a brain like a sieve...some things left inside while others drain through.

    I have found a pretty good perk in all of this. I can watch a movie for the second (and sometimes third) time and I've forgotten enough of the plot to make it interesting!

    I read somewhere that there have been brain scans done on CFIDS patients that show lesions indicating loss of brain function...white bits in the scan. I'll see if I can find it. Despite my difficulties I'm still a google whiz!


  8. I just re-read your post and realized that I didn't really answer your question about how it feels to lose cognition.

    The analogy that comes to mind(ha!) is of feeling the thought that I was about to verbalize, or the task that I was about to do, slip away in the mist. It happens fast. I think I see a faint outline of it, and reach to grab it before it disappears completely, but as I move forward realize that it's gone.

    I don't know that I feel it as a physical sensation, but since I have a tendency to live more in my head, maybe I'm just not noticing.

  9. Kate,
    I've just woken up, alone here in my bed, so my reply should make some sense at least! I find it's the only time when my thoughts run 'clear'!!!

    I hear what you are saying about your thoughts "jumping the tracks in a random manner". I often think I'll turn around and there'll be somone behind me clicking the remote. Changing my channels!

    I'm flattered and delighted that my 'brain-drain' post has hit the spot for you. Anything that helps our nearest and dearest to understand our challenges has got to be good.
    My hubby doesn't know that I blog, haven't told him yet!!

    The memory is a challenge I find very difficult, it's not so much films, but i've been reading the same book, slowly, a paragraph or two at a time, for years! I finish it and have to start again.....good job its a lovely read!!!

    I read that your daughter is in Yorkshire, I spent lots of my childhood there, its a super county. Is she anywhere near Barnsley?

    Thank you, your thoughts slipping away in a mist is a good one! My analogy had always been that my thoughts got dropped in the lake, I can see it sinking, but no way to catch it!

    I am so pleased to have you here Kate, all my best wishes, be well, and hopefully catcha soon.


  10. Oh, this is a good conversation Kate and Zarla...and one I can relate to so well. My cognitive sludge, disappearing attention span and short term memory (that has become like swiss cheese) is incredibly humbling. Reading that this illness has put me in such good company is comforting. (though I wouldn't wish this on either or you).

    Kate, you're right, MRI's on quite a few people with ME/CFS (don't know exact percentage) show tiny white lesions in the brain. Having an MRI when you have ME/CFS it is important not only to detect these little lesions, but to rule out MS. In the UK is it not a normal part of ME/CFS diagnosis to have a brain and neck MRI? It is here in the US-part of ruling out other conditions. My recent MRI has brought important information to my ME/CFS picture.

    Oh the auditory processing and attention problems!

    This afternoon my poor hubby was telling me about his mornning. He had just been listening to me, attentively. He spoke what was probably a whole paragraph and I missed the whole thing...my brain had wandered off to a different subject and stayed there. My attention went back to him when he had finished his story and sat silently looking at me. He told me he could see my mind had wandered far away and that I'd missed everything he said.

    He is a good listener and I become less and less and less of one. With any friend or loved one...I have to concentrate so hard to listen that if we have a long conversation whether in person or by phone, I'm toast afterwards...

    I also find that if I don't say what is on my mind when it is on my mind, I will often not be able to remember it when it is my turn to talk...so I do the "rude" interupting thing since being ill...better say it now or I'll lose it.

    My reading also is reduced to short sections of text at a time. A dozen years ago I could still read books by Richard Feinman and Herman Hesse (weired huh?)...and I understood and did okay at remembering a good lot of what I read.

    Now I skim articles for the most important information, because if I read a long detailed article I'm brain zonked and headached for the rest of the day.

    Zarla I love the length of your posts-perfect. I've been trying to keep the length of mine shorter, as I've been thinking if I struggle to read a long post others must be too.

    Which brings me to realizing that I just wrote is hypocritical as this comment is terribly long. Here's to our brains...and how hard they have to work now. Sorry if my comment has tired yours. I think this topic is one we need to post a lot about, as there is so many ways our cognition is effected and so much to share to know we are not alone it. Kerry

  11. Kerry,
    MRI's - mmmmm! I have often had faith in our health system here in the UK, but it gets shaken regularly.

    I had an MRI in 2000, and the doctors still use the results from that! I am being seen by a Neurologist at the moment, so maybe they may order another, but I'm not holding my breath!

    Many people who are dx'd with ME/CFS have not had an MRI at all, and have been dx'd by their family doc. I would not be happy with that myself-i have had to fight for tests to be done.

    Here in the uk they generally only offer psychological treatments. When i requested some tests a while ago i was ignored and sent to the mental health clinic!!

    Yay, thanks Doc..I wasn't mad, but i'm getting there!

    Good grief, I wander off 'cognitively speaking' so much, but thankfully my hubby doesn't seem to notice! Ha Ha!

    I try really hard to listen/remember stuff but it's especially hard when I work-I'm really good at smiling confidently and waiting till my brain catches up!

    Some people know, others don't notice, they just needed to talk, and are not so bothered if you listened!

    I am rude too Kerry, but my memory is so bad I forget after a while..... no guilt there then!

    I'm reading the charming 'Lark Rise to Candleford' by Flora Thompson...

    You would love it Kerry, give it a google-English turn of the century factual story, it's so easy to read!

    Sorry for the writing today, bit visually/cognitively challenged! (what's new I hear you cry!)
    Take care all!


  12. Just had 2 say, i'm thrilled to have this blog, and all the friendship etc that has arrived because of it.

    We all need a bit of that to get us through hey? My energy/pain etc isn't too bad today, just anything from the neck up has gone offline!

    I'll just disappear and wait for normal service to be resumed....



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