Living life with chronic pain, there are many things that we wish the world knew.
Like how hard it is to simply work up enough strength to shower, shave or even go to the toilet. How difficult it is to make our own food and that we need help and support to dry and dress ourselves. Or the reason we’re so forgetful is because the pain took away our ability to remember a long time ago, that I know sounds strange but the pain becomes all consuming meaning it is hard to remember anything but the pain. Important days become blurs and if you are lucky enough like me to be able to use a camera you take hundreds of photos on days out so you can look back at them and remember them. Or that we lie about how we’re really feeling when you ask because it’s easier than explaining, watching your face fill with sympathy or worse still the eye rolling not again looks that crush the spark we have. We fear social exclusion because we do not have many spoons so what we once took for granted becomes like running a marathon to us. A few hours out is exhausting and has to be well planned and prepared for both before and after the event. We know how hard it is to accommodate our needs and so we become a burden on days out cutting down where people can go and what they can do so we stop being asked.
We could tell you how often we cry ourselves to sleep. Or that we feel like we’ve become sideline spectators in our own lives. Or the reason we nap as often as we can is because it’s the only way we can escape from what has become our reality, and the pain and medication mixes to make our bodies shut down to escape the world.
But what we hide deepest inside ourselves and even try to hide it from our loved ones, mostly because it’s hard enough to admit it to ourselves, is this: we are terrified. We do not want to add to the stress of our family who already do so much for us; so we try and protect from everyone the real fear inside.
We’re terrified because our bodies are failing us in ways even we don’t understand. We’re terrified of the mundane because we know we can’t always keep up, and at some point we will fall. We’re terrified that every morning we wake up, we won’t know whether our pain will be manageable or unbearable. We’re terrified that people will see how truly fragile we are. We want so badly to be normal, but we’re so terrified of normal because we’ve forgotten what normal is. The Chronic Roller Coaster never stops, there is no getting off, or resting, there is the occasional break down when we fall over or our bodies give in but other than that it is round and round and pain and pain.