Chronic Fear

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.

3 thoughts on “Chronic Fear

  1. I can identify so very readily with this. Even though I don’t have a chronic condition I’ve recently had a long period off work as a result of an infection and haven’t fully recovered yet.

    I’ve found there’s a mix of people who are genuinely concerned about how you are and want to know, people who aren’t interested at all, and people who down right disbelieve you when you explain things. The analogy I’ve come to is where people liken a sprained ankle to broken leg – oh yeah I had that once and after a weeks resting I was back up and about – they really aren’t the service thing, at all.

    The difference between fatigue and tiredness is one that can be hard to express – where the slightest effort ( having a shower for example) leaves you breathless, sweating and completely exhausted.

    I’ve always been a proponent of listening fully when people explain how they are, but it’s safe to say that you can truly understand when you experience it for yourself.

    Sharing experiences and communicating these , whilst scary, is the closest some will ever come to understanding how different and difficult things can be.

    Liked by 1 person

    1. Love you bro, you know I understand and am here for you. I look forward to seeing you and catching up soon. Glad to hear you are on the mend, it is a long road and you must not rush or force it. Much love bro xxx

      Liked by 1 person

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