MS is a disease which attacks the very being, our experience of who we are.
As our perception of the world, the physical world around us, is entirely dependant on our sensory organs; to attack, diminish or alter how our senses communicate with our brains, the central processing unit; is to alter the way we perceive this world.
MS changes the world because the way we experience it has changed. New sensory information clashes with our memory of what we expect the environment to be and this causes confusion.
Food tastes different; odours now don’t match what we expected them to smell like. Textures, once rough, feel smooth and the hands feel as if you’ve fallen into a patch of nettles and are now covered in a tight fitting oven glove. They tingle or sting, while at the same time you can’t feel small objects like needle or even a knife and fork. Are you holding this mug tightly enough to stop it from slipping; or too tightly while changing a light bulb so that you might crush it?
Vision; our most used and useful of senses, precious and reliable begins to send messages about shapes and shadows that aren’t there. Or are they? If you’re about to cross a road it helps to know if you are in danger from passing vehicles. If you are reaching out for the handle of a pan of boiling soup do you know where your hand is?
Hearing, although apparently normal, seems to amplify noise and makes your speech stumble and stutter as my brain hasn’t had time to relearn how to filter out the important information from the background hiss and thunder we now hear. This is a skill we spent the first few years of our lives honing. Now, that’s all changed.
You might as well give me some LSD and put me onto a carousel for a week for all the good my senses are now. How am I going to retain my sanity?
As my new spine sends the wrong messages to my left leg it begins to judder and jump as if connected to a car battery, and my biceps dance up and down on my arm bone. Even time seems distorted. What felt like five minutes was actually ½ an hour. The next hour might seem to last ten minutes. What has my nervous system got to do with time?
This is the monster within us and the monster we will all have to tame or overcome if we, the MS community, are going to live with this disease. And that is what our family, friends and carers need to understand. This is what the neurologists and nurses have to be to able to understand if they are going to be able to help us at all.
Please be patient. I’ve got to relearn all these skills. And probably relearn them all in six months because my nervous system has moved the goalposts again. And it is exhausting.