Navigating adolescent CFS

Cognitive impact of CFIDS December 12, 2011

Filed under: CFS Symptoms — parentingcfs @ 9:26 am

As I’ve discussed before, one of the major symptoms of CFIDS is something commonly known as ‘brain fog’. This, apparently, feels like a combination of  ‘having cotton wool in your head’, ‘feeling removed from everything going on around you’ and ‘ feeling the word is on the tip of your tongue but not being able to find it’ (Your additions to this description welcome at the bottom of the page) This is on top of the incredible fatigue of the body and whatever aches (in our case head and stomach mainly) are present that particular day. It appears likely this symptom is largely (?) caused by the blood pressure/heart rate issues prescribed in my previous post. It may also be a result of inflammation of the brain stem.

Anecdotally, brain fog seems to vary in severity with some people finding they have minutes or hours when things clear up again and they try to get as much done as possible whilst they can think.

This is a symptom we have had to think about a great deal in the last months as our daughter makes the change to high school next year.

Our primary school has been incredibly supportive and we will be FOREVER grateful to them. We were able to take all academic pressure off our girl and encourage her to view school as a place to go to be social and only manage as much work as she could. It was comparatively easy for us as parents to relax about this, once we got our heads around it, as we knew that she was already at a good academic level.

The reason next year has  had to be thought about particularly carefully is that back in May our daughter won herself a place in an academic class at a nearby high school. 2 weeks later she received the official CFIDS diagnosis. For the test she had to concentrate for an hour and a half, then had a break, then another hour. She has done nothing as academically strenuous as this since and finds it difficult to productively concentrate for long periods. And yet, when she produces work it is still of high quality. It’s her stamina that is affected, not her conceptual ability. Our specialist agrees there is no reason why she shouldn’t retain her place in the class.

We have had discussions with the school already about how our girl is going to manage next year. Accommodations that have been discussed are limiting subjects to 1 or 2 (I will be driving her to and from school as required..yay me!), cutting back the amount of homework required of her for each subject, flexible due dates, testing shortened or divided, permission to have her phone in class, eat and drink as needed and leave class when feeling particularly ill.

All of this is early days and we won’t even begin to see how it’s all going to pan out until February but I am doing my best to maximise the chances of her being able to continue attending school. I know there are things I will not be able to forsee.

Tomorrow is Orientation Day at the high school. It runs from 8:50am until 2:30pm. Our girl, who hasn’t been at school for longer than 2 and a half hours since June, would love to stay for the whole time. I wish she could. Only time will tell…..

I would love it if those of you who read my blog and experience ‘brain fog’ could explain the feeling to me some more…if you’re not feeling too foggy! The other night I was up all night with our geriatric dog (who is okay but now has a Valium prescription!) and had a bad headache the next day as well as being exhausted. I felt like every thought was an effort. I imagine that is somewhat like it feels…and it’s not good.

Hope your day is not foggy. : )


4 Responses to “Cognitive impact of CFIDS”

  1. Sue Jackson Says:

    It’s great that her school has been so supportive, and it sounds like the new one will be, too – that’s fabulous!!! Your plan sounds like a good one.

    I am very, very fortunate not to have much brain fog or cognitive dysfunction. If I am severely crashed (which is more rare now), then I feel it, but most days I function pretty normally mentally, other than word-finding difficulty (I think that’s called aphasia) – not a good condition for a writer – thank goodness for built-in thesaurus!

    Good luck with orientation day – I’ll be thinking of her!


  2. Annie Says:

    I’m glad you don’t have to struggle with too much ‘brain fog’, Sue. Yes, our girl has trouble finding words for things but it’s not too severe thank goodness. Concentrating seems to be the hardest thing. Just need to learn strategies to deal with this I guess. Hope your day goes well.

  3. Brain fog – I’m sorry to say I definitely get this, I’ll try and describe it and how I cope.

    I didn’t have any to start with and then it slowly crept in and now I only notice to what extent it affects me when it’s gone. So yes it is a scary symptom but like all me/cfs symptoms it seems to wax and wane so I don’t think any permanent damage is done.

    Brain fog not quite the same as normal exhaustion tiredness foggy thinking but it’s not too different. It feels a bit like being tipsy and trying to do something complicated. A bit like when you’ve had a glass too many and suddenly realise no one else is drinking and you need to try very hard to sound normal and not fuzzy. I guess that isn’t something Harriet can relate to but that is sort of how it feels. 🙂

    Sometimes it’s really hard to concentrate, everything is a bit further away than usual. I can only hold one thing in my mind at once and only turn it around very slowly. So it’s important that people only talk to me about one topic at a time and not make big jumps in conversation because I will be left behind.

    I find that my slow speaking, chilled out brother is the easiest person in my family to talk to because there are no sudden twists or turns.

    Brain fog also seems to affect my decision making ability and that can get me into trouble because I have a hard time ‘deciding’ that I need to rest or change activities. To try and help nip that in the bud, I think it is important to set deadlines /limitations and checkpoints throughout the day. eg if my heart rate is over x at y o’clock then I won’t do y. No more than 2x20mins on the computer at a time.

    Sometimes even the simplest questions can be too much, ‘what time do you want dinner 6 or 7? – and it’s like my brain just doesn’t know how to begin processing an answer.

    Other times when it’s really really bad, I feel like I can only make it halfway through a thought, like the second half is just too much effort. (like a long series of brain farts – to put it not very delicately) That’s usually a good time to turn on a guided meditation cd.

    Then at other times, I am almost back to normal. Like right now.

    Lately I have been listening to Jack Kornfield guided meditation cd’s (from the library) and they really help. It might be a good thing to put on an ipod for Harriet before school starts. High school can be stressful and she may need some relaxation techniques if she is ever by herself and resting at school. It would just look like she was listening to music.

    I hope this is helpful and not too scary. I am at a different place with M.E. than Harriet so it may not be really relevant.

    Good luck.

  4. Annie Says:

    Sarah, thanks so much, that’s a great explanation and helps me understand a lot better. I have learnt that when H is down she doesn’t like to make choices like your 6 or 7 example so obviously that is a similar feeling for her. It’s great that your brother’s laid back style make sit easier to converse! I would like H to place some of the limitations like you do but again this is something where I have to accept it is not my body and I can only recommend things. She self regulates fairly well at the moment thank goodness. Relaxation tapes for school waiting are a great idea – thanks!
    Appreciate you taking the time and effort for a long description Sarah. Hope it has been one of the better days : )

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