Saturday, 19 June 2010

Brain...? What brain...?

AGH! I'm just about ready to sign up for a brain transplant! Just right now I'd cheerfully flick a switch to shut mine down completely.

For the last couple of days/nights, my brain has been in random thought and vision mode! I JUST CANNOT finish a thought, or even pursue it for more than a couple of seconds before it slips away from me. Pushed out by a randomly (or so it seems) created thought or mental picture.

Overnight I've been unable to sleep, but my head has been a constantly flickering blur of visions and thoughts that I have to admit I have no control over. (Pretty much like when Mr.H has control of the TV remote!) All efforts to concentrate on something, even a very familiar something, are as useless as a chocolate tea-pot!

I can't tell you how wearing this is, but I'm sure many of you don't need telling, and are probably nodding sagely as you read this! I'm at the stage where it hurts now-not an actual headache, but an uncomfortable 'stirred up' feeling that makes me want to retreat to a darkened room to wait it out. Life will not permit that today though!

Writing this has helped a little, calmed the maelstrom that rages inside. Another of the hidden delights of my condition I think..... "thanks!" It only happens occasionally but when it does it is devastating and sometimes lasts for more days than I'm happy to accept.

I'm afraid I have written this post, but, due to my dodgy concentration, can't manage to re-read it to see if it flows or there are any typos, so I'll trust spellchecker and you all!
Here's to calmer seas!


  1. Extreme fatigue does this to me too. It is very trying and there is nothing much to be done except rest up and hope it goes away soon. The post flowed fine by the way. Unlike the tea out of the chocolate tea pot!

    Have a good weekend.

  2. Didn't see a typo! I know this feeling well. I agree with Jo. Nothing to do but rest and wait.

  3. Head is a little calmer, thankyou. If past experience is anything to go by it'll do the 'bonkers thing' overnight and during the morning, giving me some respite late afternoon and evening.

    It's still hard going, but I can at least read my own post, and your super-supportive replies now!

    Thankyou both! I can't believe there were no typos- must be a first!!!!!

    What a life altering condition we have hey? It's why it's so impossible for others to understand our symptoms.

  4. I know what you mean, Zarla. Even people who WANT to understand, can't understand. My husband can tell I'm sick, but when I try to describe it, I can tell he can't imagine the feeling. Sometimes if a friend or family member gets the flu, they say to me that they can't believe I can live like that all the time. I really appreciate their compassion's not exactly like the flu, is it...

  5. Nope Toni, it surely is not! The flu doesn't mess with your head like this does. I know we are all different, and so are our experiences with ME/CFS, but I'm sure we've all had some neurological problems from time to time.

    I can explain the pain/disorientation/skin sensations much easier. They are the concrete things that translate easily into language and experiences that our relatives/friends may have had, or can imagine.

    But the 'head-junk' - well that's another matter! My hubby finds it hard to understand my mega-sensitive hearing and the fact that I feel pain whilst he's stirring his tea loudly!

    And as for the teenage son and the front door! (((SLAM)))!

    Take care,

  6. The head symptoms were all I had, constantly, for the first 5 years. It nearly drove me mad and the doctors were convinced that I was mad! It was like being in a state of permanent unreality, like my brain was floating up on a cloud somewhere and was nothing to do with the real world. How do you explain that to people?

  7. Hi Cherryl,
    Welcome to the friendliest herd anywhere!

    Explaining, and feeling the need there's an idea for a whole new blog post!


  8. Zar, Oh the brain sludge--the finding yourself talking about a subject and not remembering why you started out talking about it--the not remembering words--and so much time to think with brains that struggle to do so. Too much concentration actually physically hurts!

    Like you did, I too find that getting myself to a place of quiet and as little stimulation as possible in the best help--then letting my brain rest. I find focusing on a tv show that is interesting to me but requires little cognitive interaction truly rests my brain.

    I also do my best to rest my brain with "mindfulness" which also helps me feel more soothed and peaceful overall. (this means so many different things to people--prayer, meditation, focusing on one's breath...or a beautiful piece of music...) I imagine your yurt or hammock being wonderful places to rest a ME/CFS brain.

    I'm so glad you shared what you've been going through is such a challenging (and humbling) part of ME/CFS. Even in the midst of your cognitive symptoms, you wrote a great post Zar! Okay, my brain is going South...back to my brain restful tv show. XXX

  9. Hi Kerry,
    Ooh, you said it so well, concentrating through the antics of our brains, so tiring and yes, painful!

    I am glad that there are ways for that wonderful 'Kerry brain' to find rest, but am sorry it involves so much TV! I watch very little, maybe an hour a day is all, but I do often use it to help me sleep.

    I watch the same dvd each time I can't rest my head to sleep. I just listen to it, not having to think about it (cos i already know it inside out) means I can relax and rest. Sounds a little bizarre but works for me!

    Forgetting my point half way through a sentence... Wow that can be embarrassing at work. Good job I know my stuff and can shut up for a second till I either remember, or sometimes I change the subject a little to cover up!

    I do 'mindfulness' too. I find that a hammock is OK, and a dimly lit, quiet yurt. The voice of Kate Rusby also soothes my head, she has a lovely sound, simple music, not loud-easy listening!

    I love the idea that our ME/CFS brains have all 'gone south', I pity the poor guys who live down there..... so many sludgy brains everywhere!

    Take care Kerry, rest yourself and your brain.


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