The hardest thing to accept when living with a hidden and misunderstood chronic illness, is the loneliness and isolation you feel when the world can’t see or comprehend your suffering or pain.
No, it’s not about wanting spades of sympathy and attention. That is the very last thing we want. We just don’t want to disappear from society or be forgotten……
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We so desperately want to feel unconditional, unwavering love and warmth while we grit our teeth and bear down through the darkest days. But the truth is we are exhausted living and have little energy to expend trying to explain to our loved ones why we can’t show up in life today. And so we retreat into our caves of solitude to wait the dark spell out.
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It’s not that you want to die, but there are days when you are just too tired to live
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I have two working legs, arms and eyes that see. I have two ears that hear and lungs that breath. Someone would kill for those things I know, but what use are they when the effort to orchestrate what is natural to everyone else can feel like a concrete suit so heavy you can only manage to sit or lay still? Worst of all a brain full of untapped potential yet rendered innate and unable to perform simple tasks, process information, words or sounds.
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Your heart, body and mind weighs so heavy that it feels like you are sinking into the ground. Like someone is adding more and more concrete blocks onto your chest and head.
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But you have so much to live for…..
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Yes we could have so much to live for, so much to look forward to but on those days when just breathing is an effort, any reminder that life is passing us by and beyond our reach, serves to further chip away at the hope of a full recovery.
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If only it were as simple as thinking positive and being grateful. Your brain is inflamed and unable to transmit and receive those essential brain chemical messages that allow you to feel joy, excitement and happiness. Instead you are left a hollow empty soul full of sadness and despair.
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”You’re either ill or your dead and anything in between is a real inconvenience for some folk.” Rachel Clynick
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Despite all this, I know I am one of the lucky ones. In between the sporadic episodes of pain, depression and crippling fatigue, I have days where I can function and participate in some of my favourite activities. I know that many don’t even have that. But I can’t lie. the excitement and fire in my belly I once had for life is currently a smouldering flicker but I will keep reminding myself of the power of our minds to believe and heal and so relight that fire.
Happy excited woman
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So while I might not look sick, everyday is a physical and mental uphill struggle. Somedays a small hill and somedays a mountain. Somedays I get to the top, somedays I don’t even make the first step. But everyday I get through, I come through stronger and stronger.
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This post is dedicated to all my fellow chronically brilliant, chronic illness heroes out there that live this battle every single day.
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Big love, small tummies,
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Jill – The Fat Controller
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p.s. if you would like to show support for a loved one, simply watching the documentary Unrest produced by Jennifer Brea. a long term ME sufferer, will enable you to support them more by understanding the nature of living with an invisible and chronic illness. It’s available on Netflix now.
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p.p.s if you feel someone you love is suffering from Lyme Disease please feel free to get in contact with Lyme Disease UK for support and guidance.

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