Brain No Go So Good

“I’m writing an entry about my cognitive dysfunction, and I thought I’d ask you about whether there’s anything about it you notice. Wait, I asked you this last week, didn’t I?”
“Yes. And I suppose that’s an anecdote in itself.”

Perhaps unsurprisingly, a neuro-immune illness affects the functioning of one’s brain.

I was still well enough to be working at the office – which was the first two years I was ill – when I realized that I was gradually but very noticeably (at least to me) getting dimmer. It first became obvious because of a particular co-worker who was lovely to interact with, but usually a touch slower on the uptake on new concepts than I was. The longer I was sick, the more I realized that our comprehension speed was drawing nearer and nearer to being the same. And as I found us on a more level playing field, I regretted my previous impatience with her, which I’d always done my best to conceal, and felt a greater sympathy for her frustration when people (which had included me in the past!) ran through things too fast for her.

cannot brainWhen I look back at work I did in those early years, before my illness got so severe, I almost can’t comprehend that that it was once something I was able to do. As I tipped toward the ditch of the crash that ended my career at the end of 2007, tasks that were once effortless went more slowly. Technical materials that were difficult but understandable became a confusing morass. Things that were a challenge came to be nearly impossible.

Among other things, I was an Excel specialist at my last job, and I had been forever trying to encourage my colleagues to learn about the wonders of data analysis. It was something I loved, but not generally something that many others thought was fun. When I look at old workbooks now, I can’t even begin to get my head around their complexity. Some of this, admittedly, is just being out of practice, but some of it is that when I try to suss out an involved formula, my cognitive dysfunction means I lose my hold on element one before I get a grip on element four.

On top of that, I had long been a natural editor, and that’d been a sideline of mine in every job I’d ever had. When I read, errors would just pop out at me from the page, as if they were in 3D. As I got sicker, I had to read with effort to find errors, and now, I’ve lost the ability to see some types almost entirely. My eyes just skim right over them pretty often, and they don’t even register. These days, there are times when I’m reading that very basic errors of English – things like there/their/they’re – are something I have to think deliberately about. And my spelling skills have become terrible – I am constantly inserting the wrong vowels when I type, or unable to remember which silent letters are involved in a word, or I unconsciously I type a homonym with an entirely different meaning and then stare at it, trying to figure out why it doesn’t look right.

I also have a terrible time with aphasia, specifically word-finding. Aphasia is a funny thing – I have different problems with different parts of speech. Verbs are not generally a problem. With nouns, it’s like my search function is just slow, and even if the object is right in front of me, it takes my brain five or ten seconds to reach it in the mental lexicon. So I’ll say to Chimp, while holding an empty pill bottle, “Would you please bring me a new bottle of……betaine?” Even if he realizes what noun I’m searching for, he’s mostly kind enough to wait for my brain to try to come up with it, so that I don’t feel like an utter failure.

My uncommon-but-not-obscure adjective bank, on the other hand, seems to have almost entirely evaporated. If it’s not a word I use everyday, sometimes I’ll find myself saying to Chimp, “It’s an adjective that means so and so, and it’s sort of like such and such, but not this.” He can usually supply it, but if he’s not around, I might sit there for three minutes trying to think of it, and the odds are pretty even on whether I’ll eventually come up with it or not before resorting to an online thesaurus in total frustration.

My writing has also suffered, not least because of the language issues. I used to write a vegetarian food blog, She Spills the Beans (I moved it over from TypePad to WordPress, and I’ve never had the extra energy to go back and add in all the photos…apologies…they were not really very good anyway, so your mental images are probably better, honestly), and when I read those entries, I can both hardly understand them and hardly believe that I was the one who wrote things that complex and creative. I feel like I’m banging two rocks together over here by comparison.

Besides all the language issues, my long-term memory has gone totally to pot. I do sort of try to live in the present because of the illness, but the memory loss enforces it. There are so many times when Chimp will bring up some episode in our 16 years of shared history, and what he describes will sound familiar, as if it’s plausible that it did happen to me, but I can’t bring up an active memory of it – like it’s equally likely it could be a real memory or a created one. Just recently, I mentioned that my hairbrush was wearing out, and the next day he came home from the store with one. When I picked it up, he said, “Remember that we used to have one just like that?” I looked at it and – well – if he hadn’t said so, I don’t think I ever would have remembered that it was the case, but it gave the brush a definite feeling of familiarity.  However, without prompting, I think that would have remained utterly lost to me – and how many other things are?

But all of these issues are subjective, right? What about measuring all of this objectively? I’ve made an attempt at that. I had neuropsychological testing done during my absolute worst year, the year I couldn’t get out of bed at all, in hopes of validating how bad things had gotten, as part of my disability application. As the test proceeded, I could tell I was performing utterly terribly as compared to how I used to function, but frustratingly, I came out within normal ranges according to the tests. As Chimp has said, flatteringly, “The thing is, you were batting .400, and now you’re batting .300, which is no slack, but you’re constantly comparing yourself to all those years of .400.” My identity did use to be significantly tied up with my smarts. But thankfully, I have something else to focus my identity around now!

Not all of this is the illness, I know. Some of it is just getting a little older and thus having a longer period of memory, and some of it is that I’m loaded down, nightly, with a few soporifics that have psychological effects, and one of those has an especially bad reputation for turning one’s brain into cotton balls. I so wish I could drop that one especially, and see what my function is really like, but it’s keeping me alive. Cotton balls, unfortunately, for now, are the order of the day.

As symptoms go, though, the brain fog and memory issues, for me, are honestly some of the least bothersome. I do feel like I’m trying to cut the world around me with a butter knife a lot of the time, but it’s like that – annoying but not crippling. I would rather not have these problems, but there are a lot of other things I’d put on the list to get rid of first – with insomnia, cardiac output,  fatigue, sensory sensitivity, and temperature intolerance at the top of the list.

If you’re wondering about measuring your own cognitive function, there’s a pretty-manageable test to be found right here. Let me know what your cognitive frustrations are, or how you did, in the comments, if you’d like.

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29 Responses to Brain No Go So Good

  1. i think you write very well. i’ve always noticed your proper use of grammar and above-average level of intelligence – yet i know what you mean when you say your present level of functioning pales compared to what it used to be. as for the test, i got sixty-(something?) and i said i was 51 years old. in a way, the more you interact with your world the more apparent the cognitive dysfunction. i do recall not knowing what the first step was in making a sandwich (get out a knife, or the bread?), or not knowing how to get to the park a few blocks from my home, and being bummed because i couldn’t watch my fave tv show since there was a transit strike on. now my world is my bed so i don’t know if i’d be able to make a sandwich! and i can’t speak, so i’m not sure how often i would forget words in conversation, tho recall it used to be nouns also … oddly when i have to take extra clonazepam and/or codeine my brain works much better the next day even if i haven’t slept well. thanks for the post! researchers said spelling and LTM were not affected by ME/CFS, but like you, i disagree.

    • Jocelyn says:

      Thanks for the kind words, Liissa. You know, having listened to Cheney talk about the use of Klonopin on several occasions, it doesn’t surprise me that your brain works better then. Have you ever heard him talk about it? He draws a line with “seizure” on one end and “coma” on the other, and explains that Klonopin helps move the brain away from seizure and more toward normal functioning in people with ME/CFS. So if your brain is less a mess that way, it seems plausible that it would help with memory. Sorry to hear you’re dealing with the level of functioning you are – I hope you can get some improvements.

  2. Zander says:

    You’re loved from over here in Williamsburg!

  3. Yocheved says:

    I became ill when my daughter was 2 years old, and she’s 9 now. It absolutely kills me that there’s so much of her childhood that I can’t remember. She’s my one and only miracle girl, who I waited my whole life for. Now, I sleep a great deal of the time, and when I’m awake I’m either in a fog, or desperately trying to cope with the house. I would trade a lot of things, if I could just remember her growing up.

    • Jocelyn says:

      That’s heartbreaking, Yocheved. I’m sorry to hear it. I’m sure, though, that she doesn’t love you any less because your memory is poor – as painful as it is, I bet the loss is all on your side.

  4. pantoeffelchen says:

    What an excellent blog post – again! I always love to read them!
    I can so relate. I always put the butter in the ‘mailbox’ and the dirty dishes in the ‘oven’ etc.
    And: I once introduced myself two times to the same new neighbour on two consecutive days. I couldn’t remeber neither his face, nor his name. He had to tell me, that we have had met before. Oh dear..!
    The brainfog has lifted a little over the years.
    Let’s hope for the sun to be shining in our brains again one day 🙂
    Best wishes, Karin

    • Jocelyn says:

      Yes, let’s hope for that, Karin! I sympathize with the difficulties with introductions – I was never great with faces, but I think I’m definitely worse now.

  5. Reva says:

    The timing of this post is brilliant. As I read your frustrations they were exactly what I was trying to portray to my Neuropsychologist last week. I think that I got the points across and I wonder if she suspects that even though there are deficits compared to my normal, I may come out in the normal range – she did point out though that even if there is no significant areas of deficit I will have a baseline to compare to in the future. I have part one of my testing done tomorrow.

    • Jocelyn says:

      Good luck with the testing, Reva. I hope it goes well. I know I feel like I should just be grateful that I’m in the normal range, but it’s hard to do sometimes. I think if I redid the testing now, I might score better…my overall functioning is better, and I definitely feel sharper than I did then, just because I have more energy for my brain to use.

  6. cblondie says:

    Oh, I can so relate to this one. Whilst I’m still pretty ok compared to a lot of people, I can still tell that I have lost a fair bit of cognative function. It is incredibly frustrating to forget words, or things I need to do, or how/what order to do it in. Although it does sometimes amuse people when I do my ‘kitchen dance’ (as one friend dubbed it, as that it where it often occurs) turning on then spot with my hand doing wierd moves while I try to work out what I’m doing, where and in what order! At least the people close to me are pretty good at translating my scrambled sentences.

    Oh, and I got 76 on the test, so not too dreadful yet 🙂

    • Jocelyn says:

      Ha, I was doing the kitchen dance this morning while I was trying to get my oatmeal ready! I usually pick things up in a specific order, because that helps ameliorate the dance, and because I didn’t, I was all over the place.

      • CBlondie says:

        Good to know I’m not alone! lol

        And as if to prove the point that my brain is not quite so good, this afternoon I nearly put my water bottle in the bathroom…and my dirty socks in the fridge! oh dear…

        I also find it makes it very difficult to find things sometimes, because not only do I have trouble remembering where something should be…I may have put it somewhere dumb…like the fridge (car keys anyone? lol)

      • Jocelyn says:

        Yes! Oh, the places things get put. I used to be the person who knew where absolutely everything had been put in the house…unfortunately Chimp is not that person, as he’s your typical head-in-the-clouds professor type. So between us, finding any random item can be a challenge!

    • Oh I do the kitchen dance too! And pretty much everywhere else too. 😉

  7. Vicky says:

    The two things that bother me the most are the excel stuff you mentioned – in me this comes out with maths/mental arithmetic. You explained it well – I never knew how to explain it, but would say that I couldn’t ‘hold’ a number, so if I had to add two things together like 527+259, by the time I get to 20+50, I have already forgotten the 7+9.

    The other thing is the loss of memories. I have the same issue with my SO – he reminds me of conversation we had, or things we did and I can’t recall them. It has actually led to arguments because I wonder if what he is saying is correct, because I can’t recall it, but then sometimes I eventually start to resurface that memory sightly – enough so I know what he is telling me I did actually say/do.

    My word recall comes and goes. Recently it has been quite good. I don’t know why, but I’m grateful for these better moments.

  8. Vicky says:

    P.s. I forgot to say, I also will repeat things to people… And I have no memory I aleady told them x,y,z – one woman got really mad at me for this, we are no longer friends! I find it upsetting that I don’t remember, and then to have someone basically take the mickey out of me for it = too much!

    • Jocelyn says:

      This happens to me, too, Vicky. The only person I talk to on an everyday basis is Chimp, and as in the conversation at the top of the entry, there are lots of times that I get halfway through something and realize we’ve already discussed it.

  9. If you write so well now, then you must have been so excellent in the past! I do enjoy your writing, and you express yourself so well. The post was quite long that I worried about how you felt after you wrote it – not so tired I hope? I enjoyed your post… all the best!

    • Jocelyn says:

      Thanks, BPR, that’s kind of you! I felt fine after I finished this, because the truth is, I write all my entries in dribs and drabs over a long period of time – sometimes as much as a month. It would be very challenging and not a good idea for me to try to put something down like this all at once.

  10. 31monsters says:

    I also want to tell you that you come off as an incredibly intelligent, sensitive person in your essays. Autobiographical writing is hard, and writing about illness with honesty and humor is even harder. I think a lot of people experience what you are going through, but few can express it like you can. Your blog fills a vacuum that needs to be filled, and it really helps people. I always look forward to it, at least. Even if it takes you a long time to write, your intelligence shines through. It goes to show how cognitive function and intelligence are not the same thing at all.

    • Jocelyn says:

      Thank you, 31 monsters. That’s incredibly kind of you. I actually find autobiographical writing by far the easiest type…I wrote a journal all through adolescence and young adulthood, so it is very natural to me to put these sorts of experiences down.

      • Lee says:

        Oh, shoot, this is Lee, from the We Can Still Blog blog. I don’t know why WordPress won’t just let me be myself. I had this monster blog a few years ago, and it won’t let me forget. Just saying: Hello!

  11. Early in her illness when my daughter was still in college when she met new people, she’d say pretty soon in the relationship, “I used to be smart.” That made me so sad, but I understood completely since I had been too ill for 10 years to work anymore as a teacher. The word-searching thing is most frustrating, especially when you have two sick people trying to have a conversation! Although I have become more functional over the years, I think I have not regained fluidity of word choice. I know I’m having a bad day when my daughter fills in the blanks! I also understand the part about editing. I was always an excellent editor and now I question my spelling and grammar frequently. I spent 10 years being with my father as he fell deeper into dementia, which was more vascular, I think. The progression of Alzheimer’s did not fit his illness. He was a scholar and had a great vocabulary. Towards the end he could still come up with words few others his age used, but he never knew what to call his wheelchair. It was relatively new to his life, and I think he just did not have brain storage of that word! I am thankful I learned how to understand descriptions, hand gestures, and vague references as well as to use gestures and descriptions myself. And to laugh about it all. When my daughter and I lived together, we were used to seeing each other walk into a room, stop, turn around and go back, and then enter again after remembering our intent. The consistent point of laughter was discovering in the washing machine either unwashed clothes or washed clothes and having to check to see which one of us had forgotten we were doing laundry. Yes, there is that underlying fear, but I prefer to find humor in the whole situation. I, too, regret having been impatient with those who seemed slower or less able. I am grateful that both my daughter and I think we are better people for having had our challenges with this illness. A wider range of experiences makes one more educated, right?

    • Jocelyn says:

      This is all so true, Peggy. Thank you for sharing it. It is easy, when one’s identity is tied up with intelligence, to get frustrated with those not quite as gifted, but it is not a good thing. Good for you for finding the humor in the foibles the illness brings on.

  12. kathy d. says:

    My brain is so cognitively dysfunctional sometimes that I thought I wrote a comment here and I hadn’t. Oh, well. All in a day’s (non)work.
    I agree with everything and have experienced much of this.
    I had to stay up all night to clean my apartment, sweep and then mop the floors twice and then clean furniture — to get rid of plaster dust being loosened by gutting of the next door apartment, which coated my apartment. It was an all-nighter as I had to do this as I had trouble breathing from plaster dust and it was everywhere. Then the next morning I paid bills. What a mistake! Later on I looked at them and noticed I hadn’t signed half, I wrote two of the same one, the numbers were impossible to read. My lesson: Never do anything important after exerting oneself physically. I had to laugh about it.
    I’m still exhausted from this task and my arm muscles hurt a great deal from the exertion three days ago. I haven’t been able to go outside since.

  13. It’s for 50 to 70 year olds?! That says way too much! 😉

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