What’s something most people don’t understand?

Of which there are many!

It’s all in your head! How frustrating is that line when it’s thrown about in jest. Somebody with no neurological issues is happily unaware of the debilitating consequences of a diagnosis of one of these bothersome, life changing, invisible or obviously irritating visible tics that a neurological disorder, condition or disease can have on you. And use those terms carefully as even the the acronyms can be troublesome…

DMD or DMT anyone? Disease modifying Drug or Treatment: the nasty chemicals we take to lessen progression or the amount of times the worst symptoms attack us. As attack us they do. Or the chemicals might not be nasty but they mean we are not allowed to donate blood as not only do they not know whether our neurological condition can be passed on but they don’t know what the presence of the medication we rely on will have on our blood when it’s passed on.

But there are other things neurological conditions cause. Fatigue, problems with cognitive processing, vertigo, balance issues, and did I mention fatigue? Not just a gentle need for more sleep but a chronic debilitating problem that means waking up with the feeling you haven’t slept at all, or being unable to do simple tasks, like showering, without contingencies for rest stops before, after and in the middle. But not every day, so plan round the one day you have no contingency time built in and the whole day is affected and plans go wildly wrong.

That can be every d*mn day or only the days that matter. Insomnia and stress adding their own dimensions to the days you don’t need them to appear… oh joys! The days you (almost) forget you have an condition and you have to fill in a form explaining in minutest detail how your condition affects you? Or how many times you’ve gone to the toilet or which exercises you’ve managed to complete for the past week? All a reminder of the MonSter on your back. S/He’s friendly, honest! Just hiding in plain sight.