No one talks about it.
All anyone talks about when you mention Myalgic Encephalomyelitis (ME) is tiredness or fatigue. Part of this is because of the correlation and inter use of the term Chronic Fatigue Syndrome. Another reason why I am very much against the term being used.
No one talks about or prepares you for, or helps you work through BRAIN FOG.
Before the illness struck my daughter was in year 8 (age 13) and predicted 10 grade 8 or 9’s in GCSE. She wrote her own fan fiction, drew amazing fine art pieces for fun and relaxation, enjoyed playing complex computer games and would have deep and meaningful discussions on world events and documentaries she had watched.
Within 2 months of becoming symptomatic with ME she had days where she could not get her brain to work. She literally couldn’t hold a sensical conversation, string more than 2 words together or complete a sum as simple as 2+3=. Within a year she was down to predicted 4s in 3 subjects for her GCSE’s.
Watching her loose her cognitive function and not knowing how long an episode would last for was heart-breaking for me, but it was so frustrating for her and no one had any answers for us as to why it was happening, how we could help her or how long it would last.
It became clearer as we lived through the illness and journeyed with other families to compare symptoms and followed peaks and troughs in her mental abilities that the brain power or mental energy it took to keep her alive was not leaving any reserves for optional brain energy functions like thinking, remembering, or speaking. This was a scary time for us, especially when some episodes lasted days.
With some days spent sleeping 20+ hours, and some weeks with 7 days only leaving her bed for the toilet, then finding she was confused, disorientated, unable to think clearly, not able to communicate it was a devastating journey for us both.
Brain fog is scary. It isn’t something to be laughed at or mocked for. It is dangerous. it means that Elizabeth lacks the opportunity for independence. She has spells of brain fog even on good ME days, it means she will forget she has put food in the over, forget to turn a tap off, miss appointments, forget whether she has taken her medication or not, loose hours where she is almost in a catatonic state, just string off into space. It means she can not go out alone as the risk of a brain fog spell makes her too vulnerable. I could answer a question for her and within minutes she was asking it again, her retentive capabilities were almost zero.
Still we were told this was all in her head it was mental health, it was Medically Unexplained, it was Fabricated Illness, she enjoyed playing the Sick Role and I enjoyed being the mother of a child needing attention. These people, doctors and psychiatrists who make these assumptions and comments are shameful and a despicable kind of medical practitioner.