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. : )