Today I was chatting to a beautiful, young, brave woman, she is also ridiculously clever, she has earned degrees and diplomas…. as I said she’s clever. Despite all this, she struggled to concentrate long enough today to take a message on a phone call. She, like me, is also a kick-arse fighter of auto-immune disease. We got talking about how frustrating this brain fog is and how embarrassing it can be on the days when our illnesses reduce us to complete air heads, absolute dizzy lizzies. To defuse awkward situations we find ourselves making jokes to try and ease the humiliation we feel by saying things like ~ Sorry my brain is not working today. We know we are not stupid, yet find ourselves walking away from interactions with others feeling inferior.
If you have a loved one who’s a warrior fighting an auto-immune condition such as MS , ME, CFS, LUPUS, POTS, and you’ve wondered what ‘brain fog’ is like for them. The best way I can describe it is……… if you imagined you had a bad virus, jet lag and concussion all at once, that is kinda how it feels for us. Brain fog can come and go. Thats why some days we seem great and other days not so with it.
I’ve had people question why I don’t try to make my days when I’m stuck in bed or at home more productive. “Why don’t you learn another language?” – “Why don’t you enrol in university?” – “Why don’t you get a job where you can work from home?” Trust me, wasted days in bed being completly unproductive is soul destroying for us, if we could we would be doing all those wonderfully great things you suggest.
I think most people relate it as if it were like resting with a broken leg. You put it up and rest, why not use your brain while you’re resting? Most times when our body goes down, so too does our brain which affects our cognition and our mental health. So if you are ever chatting to us and we forget your name or something really important that you had told us recently. Please know that its not because we didn’t listen or didn’t care enough to remember….. but instead remember we actually have inflammation of the brain. Try to imagine yourself in a mixed state of flu/jeg lag/concussion and trying to think straight….. yep exactly!
Today is Annual Awareness day for Myalgic Encephalomyelitis. Brain fog is just one of the many battles we face. Please next time you are talking to us and we seem a bit dopey remember this is not who we are. We are more than a diagnosis of a disease. Before this hit us, we were dancers, we were adventurers, we were athletes, we had careers, we too had plans, we had lives and now we are the millions missing. Yes, there are millions of us all waiting for our community, our government our doctors to recognise our desperate pleas for help to find treatments.
Special love today to my fellow incredibly brave brain-foggy warriors.
Love Meli x
*I see you KJB