WHEN it comes to illnesses they’re pretty much straight forward…the person looks sick…and therefore is.
But for many people, like myself, this isn’t the case. Our everyday lives are plagued by an illness that no one believes and worse, cannot be proven.
We find ways to manage, one of which is to hide when we’re sick and cram a ton of activities into the days we’re feeling well.
We have fibromyalgia. Which the NHS describe below:
On the outside people see vibrant, energetic and lively people full of beans.
Of course we are, when you see us we’re finally getting a chance to strike some stuff off that To Do List.
But behind the smile, under the oversized clothing and inside our “comfy” shoes lies pain, fatigue and exhaustion – all waiting to strike at the least appropriate time.
I recently posted this piece below on social media in an attempt to explain something about my condition and how I felt. Little did I know that a few words I typed in frustration, without really thinking about them, whilst feeling low would have had such a huge impact on people.
I’m a writer myself and so putting my name to words that were simply from the top of my head with no real professional thought behind them was hard. What was harder was the worry that someone would read it and think that as a professional, I could not be trusted to be well enough to continue to work for them.
I’m recently diagnosed (in the last few months) but I’ve suffered the symptoms of fibromyalgia and hypothyroidism since I was a teenager. Therefore, I now realise that people cannot judge me now because I’ve had a diagnosis recently for they’ve been doing business with me for 20 years.
I wonder though, will this piece from my heart help you to understand? Or has it described the life you lead on a daily basis too?
Do you know what I know?
Do you know that feeling when you get a bruise and it becomes sore to touch – every slight wee knock drives you crazy?
Do you know that feeling when you go to the gym for the first time in a long time and the next day it feels like every muscle in your body is throbbing sore?
Do you know that feeling when you’ve been working really hard for a few days – maybe moving house for example – and all your joints feel like they need a good dose of WD40?
Do you know that feeling you get when you’ve had a bit of sunburn and there’s a weird tingling going on in a certain part of your body?
Do you know that feeling of being so tired that you are glued to your bed or sofa?
Do you know that feeling of trying to stay awake so badly that the sockets of your eyes are burning like an intense fire?
Do you know that feeling of being so exhausted that it feels like someone has dropped an imaginary ton of bricks on your body?
Do you know that feeling of immobilisation when you have the flu that takes all of your inner strength and willpower just to reach for the remote control?
Do you know that feeling when you’re sick and you’re brain just won’t think straight?
Do you know that feeling when you forget what you went into a room for?
Do you know that feeling you get when you are so cold your hands and feet feel like they are going to fall off?
I do…..
I also know what it’s like to be addicted to adrenaline because it’s the only thing that gets you through the day
I also know what it’s like to have no memory of a lot of major events in your life
I also know what it’s like to forget simple words because your brain can’t find the file
I also know what it’s like to have feet, hands and a face that blow up like balloons and become so sore you can hardly stand or hold a cup
I also know what it’s like to get paranoid convincing yourself that you must be mad
I also know what it’s like to be called lazy when it’s far from the truth
I also know what it’s like to have the people you love the most doubt you the most
I also know what it’s like to be afraid to say when you are sore or tired or when your brain won’t work
I also know what it’s like to be unable to explain what it’s like to feel all those things at once, all the time and never get a break
I also know what it’s like to try and hide it all, blame yourself and cry alone when no one is there because you don’t want to be sick
I’m newly diagnosed with fibromyalgia, I have hypothyroidism and I am technically obese according to the medical professionals
I don’t want to be sick, I don’t want to be a victim, I don’t like complaining, I’m not lying, I’m not lazy….
If there was a cure I’d take it, if there was an off-switch I’d hit it, if there was a test to prove it I would take it every day…
I don’t expect people to understand what I’ve been going through all these years, I just wish they had the decency to believe me when I say “I’m sore and I’m tired and I can’t think straight”…..