Brave Heart, Brave Soul. She who is brave is free.

  Let's get real today!  Be genuine and authentic. Speak truthfully, wholeheartedly with intention. If you're a spoonie, you probably know where I'm heading. If you're not. Pull up a seat, sit down and join the conversation. There’s a lot here to unpack. Ok, my question today, if you're dealing with any form of chronic illness, is this. How do you deal with family, trolls or outside influences who call you a phoney? Every spoonie has a muggle in their life or two or three even who invalidates their illness.Those who make it abundantly clear you're putting on an act.  You don’t even have to think about it. Names are already coming to mind, aren’t they? Let’s face it, you know the drill. It's an old routine and we all know how it goes…You need attention. You're dramatic. There’s nothing wrong with you. Oh and my personal favorite....you're faking it.  These kinds of people can’t grasp how you can actually be THAT sick, at all. I mean, come on. You don...

  So, what does it mean to be chronically ill? What’s a spoonie? And what the heck is spoon debt?  Why are some folks called muggles and what exactly is mu ggle sick? Well, those are all pretty good but loaded questions to be fair. I’m no expert, but I am familiar with the lingo. Why? I’m a spoonie. Not a muggle. I have sick days and I have good days. I have flare ups, brain fog and just plain I can’t days. Truth is I’m long past muggle (normal) sick. And no, I don’t look sick to most people. In fact, if you’re not inside my inner circle you’d have no clue what it takes just to get up and out of bed most days. Not to mention the energy required for a shower. I go into spoon debt often. If not daily. I’m always borrowing spoonfuls of energy from one day to get through the next. Hence the words, “spoon debt”. And no, I never quite catch up.   My tired isn’t muggle tired. When I say I’m drained I don’t mean a long day, a few hours of sleep kind of worn out. I mean somet...

  "When you have a rare disease you face two battles. One being the illness itself. And the other, living in a world where so few people understand what you're up against." ~ Unknown.  Let's talk about perception, reality and chronic illness.   Can we just be honest? Let all the pretense go? Chronic illness is one of those things that most people don’t ”get” till they “get it”. And let’s be brutally blunt now. What so folks think they know isn't always what's actually going on. You know what's happening to your body. I mean it's happening whether you like it or not, right? Yeah, you know. And your doctor knows but  there's a particular kind of person whose perception doesn't quite match our reality. Whatever your real life is doesn't hold water in their eyes. You're making it up. Being dramatic. You just need attention. And sadly, that becomes the narrative.  I don't know why so many folks these days feel they’re adept at diagnosing...