Guest blog by Anna Wood.
Cognitive symptoms are common for everyone who has M.E., but it is the cognitive fatigue which disables me the most. It is the reason that I describe myself as severely affected, and the reason that I am housebound.
I know that I’m not alone and yet many of the people I talk to and the stories that I read on social media seem to be of a particular type of M.E. where pain and muscle fatigue of the primary symptoms.
Of course, this is probably because those of us who are more affected cognitively are less able to read and to interact online.
Don’t get me wrong I am also significantly affected physically – my walking for example is limited to 1600 steps per day and often a lot fewer than that, but I can walk up and down the stairs, bathe and dress myself every day, even on my worst days.
My cognitive symptoms mean that I have severe issues with concentration which severely limits the amount of time that I can spend doing anything involving the brain – for example using a computer, talking to people, listening to the radio, watching television and reading.
For me there is no point in having a Netflix subscription or even an Audible account because I can only watch/listen for a few minutes at a time. I am so far behind on all the latest shows!
My symptoms mean that I am often very isolated. I rarely see friends as even talking on Skype or the phone can cause a crash. I’m particularly limited in the time I can spend looking at a screen, so my social media use is limited, which makes me feel even more isolated.
I should add that I do get short windows in the day where I can think, and this means that I am able to work 5 hours a week by splitting that work in to 20 minutes session three times a day.
Post-Exertional Malaise (PEM)
Like all people with ME if I do too much I crash. But for me the symptoms of a crash are more likely to be cognitive than physical. When I crash it feels like my brain is shutting down.
I can’t process information anymore, I can’t cope with light or noise, I can’t cope with seeing anything moving and that means that I can’t watch television at all. It also means that I can’t knit.
My head feels like it’s going to explode, though it doesn’t hurt. I can’t make decisions, I can’t think, I struggle to find words.
For me a crash can be caused by cognitive activity just as much as it can be caused by doing too much physical activity.
In fact, if I do something physical for example if I walk slightly too far then the crash that results is an increase in cognitive symptoms, rather than physical ones.
I have found very little that can help the symptoms. Instead I manage them as best I can. I find the most important thing is not to multitask.
I also have to spend a lot of time doing absolutely nothing or very little with my brain which is very hard as it is so boring. I keep noise to a minimum and I’m very lucky that I live in a place that is very quiet and only with my husband who also has severe M.E.
This was written on an unusually good day, and by using speech to text software (speaking into google docs.).
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