March 30, 2013

The Brain Game

Posted in Journey, ME/CFS tagged , , , , , , , , , , , , , , , , at 11:48 am by Reva

One of my biggest concerns of late is the way my brain seems to be more discombobulated than usual. I’ve been feeling like I’m forgetting things, I feel like I’m disorganised, I have A LOT of trouble finding the right words. I know exactly what I’m saying and then it’s completely gone. I’m not game to greet people by name because I’m scared that when I say their name the wrong one will come out.

I feel incredibly lucky that I manage to work 4 days a week. One day I’d love to do some post graduate study but my biggest goal is to not have to reduce my current workload. I’m currently doing a short course for which I’ve already had an extension. I’ve never had to ask for an extension in my life before (that I can remember, but certainly not when studying). As it is, the work is due in about 10 days and I’m hoping I get there. But instead of focusing on studying my brain has decided it’s going on an organisation rampage. I have cleaned out my medicine cabinet, cleared off the papers that have been piling up on my kitchen table for the past 6 weeks, rearranged the things on windowsill above my kitchen sink, cleared off my coffee table of further papers, reorganised my bathroom cupboard and started writing a blog post. And gotten way off topic (something else my brain is doing more and more of).

Having to cut back my work is a huge fear. Without work I wouldn’t be able to pay my mortgage, I wouldn’t be able to afford some of the energy saving strategies (namely cleaner, lawn mowing man, home delivered healthy meal and groceries) not to mention some of the luxuries, the distraction from illness it provides me with and the fact it gets me out of the house. I spoke about this fear with a return to work officer at work and she suggested getting some cognitive tests done to see if there were any strategies that I could use to help me at work, and then discussed it with my psychologist who provided me with details of a neuropsychologist who she thought may be able to help me.

The Neuropsychologist was so lovely and helpful. She offered to meet with me, free of charge, to “have a chat” about my concerns and to see if there was something worth investigating. This “chat” ended up taking an hour of her time. She said that she’d like to do a range of tests as the problems I was having seemed to be broad, and as I was still able to work in a high functioning position she thought the changes were likely to be subtle and therefore difficult to find. We made plans to meet three more times. She asked if I’d mind if a final year student completed the first test. Working regularly with students myself I had no problem with this and told her it would be fine. She then told me she wouldn’t charge me for that appointment either (apparently the university paid her for that time so she didn’t want to charge me as well). I assured that that I didn’t mind paying, after all she’d still be working with the student on the analysis. She wanted to do a second lot of tests with me herself (the first time she was going to charge me) and then on the third occasion she was going to give me some feedback.

The first assessment went for two hours. It involved all sorts of tests, all starting fairly simple and gradually getting harder. It was really difficult to assess how I was doing as I expect that some of the tests were supposed to be too hard to complete. In one I was read a long list of word pairs. Some of the pairs seemed to go together, and others didn’t. Then I was given one word and had to say the word that matched. This was repeated using the same list of words several times and I actually found it fairly easy after the first round. Another that involved memorising patterns and positions on a grid was horrid. I am sure I didn’t get a thing right as I was completely guessing for the most part. My brain must have been working hard because the next morning getting out of bed was more of an ordeal than usual and I was extremely grateful that I didn’t have to go to work.

When I arrived at the second assessment the neuropsychologist told me she’d been doing some research into cognitive changes and ME/CFS and she was coming up with very little specific information. She was hoping that there would be some research that would help her guide her where to focus the tests. She’d gone through all of her references, done a literature search and had sent out an email request to all of her colleagues. She said that while it was clear that cognitive changes occur in ME/CFS, no one could tell her whether this was generalised “change” that varied from person to person, or if there were specific areas of the brain that appeared to be affected.

At the end of this second visit she told me that there were a few more things she’d really like to assess before she gave me my feedback, because once again things were not particularly clear and further information would be helpful. By this stage I had started to think that maybe it was all in my head and that there actually wasn’t anything wrong, that maybe I was just over reacting; that I really was just disorganised and not as smart as I thought. She kindly offered to come in on a Saturday and once again didn’t want to charge me for this extra appointment. In the end we combined this last assessment with my feedback session (so I felt better because I had paid for that).

One of the tests she did on the last Saturday involved me having to say out aloud words starting with a specific letter. This was done with three different letters. I had a minute to say them, and there were to be no proper nouns, no numbers and no repeated words, or words derived from the same word (eg. If I said bite, I couldn’t then say biting or bitten). For one of the letters I could only come up with 6 words, and in the last 30 seconds I couldn’t come up with any!! Surely not normal.

After finishing off the tests we went through some of the results that she’d already analysed. The results showed that I most definitely had a slowed processing in my brain. When she had tested my IQ (I didn’t even know she’d tested it) my knowledge was quite high, but my working memory and processing were really slow, quite below average. She said that what she believes is happening is that the brain fog really is slowing my brain down. The electrical impulses that occur when we think have slowed down and this actually explains a lot of my cognitive symptoms. It takes me longer than it should to come to the right answer, but the answers are definitely in there. What I see as “forgetting” is really me not allowing myself enough time to remember, as it takes longer than it used to. The word finding is difficult for the same reason. If I’m not planning what I’m saying ahead of time the words get lost. I am losing things because I’m either not giving myself the time to initially absorb where I’m putting things, or I’m not allowing myself time to remember where it is before getting flustered an confused. She asked me if I’d mind if she discussed my case with a group of her colleagues to see if they interpreted the results the same way (which I am more than happy for her to do) and has assured me if they come up with anything different or new she will let me know.

And what can I do with this new finding? Not much. Unfortunately processing is purely biological. All I can do is compensate (I interpret this as – allow more planning time) and, well, be less tired. And if I knew how to fix that one I wouldn’t be having the problem in the first place. But there is an element of relief that the information is actually in my brain, I’m not stupid and I’m not forgetting things I’ve learned of the years, and most importantly, it’s not all in my head (well, it is, but you know what I mean).

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4 Comments »

  1. hayley said,

    Interesting as always and you articulate things very well. Do the word ‘blockages’ occur when you’re working on blog posts?

    • Reva said,

      Thank you Hayley 🙂

      They do sometimes. I tend to have to write in short bursts on my bad days, or I write and put in what I think I’m trying to say then go back and correct it later. I’m probably more likely to go off on tangents, or get completely off topic though.

  2. A really interesting post Reva, thank you for sharing your experience. I tell myself everyday that it’s ‘not all in my head’ so this post has really helped me.

    • Reva said,

      Thank you 🙂
      The main reason I went through with the tests is because I was starting to think it was all in my head. Don’t get me wrong, it would be wonderful if there were some exercises or something I could do to improve it, but knowing it’s not all in my head is a relief.


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