Imagine

Imagine that you are in excruciating pain and nauseated beyond belief. You are dizzy and tired and weak. The room feels like it is spinning even when you lay perfectly still with your eyes closed. Bright lights assault your pupils, even with your lids closed. You’re throwing up everything you can remember eating since last Tuesday. You’ve already given yourself two injections that hurt like hell and leave bruises on your thighs. You’ve already taken oral steroids which make you feel like you want to jump out of your skin. You’ve already taken painkillers and anti-nausea and anti-anxiety medications. You’ve only gotten out of bed to go to the bathroom. You’ve choked down as much ginger ale as you can in an effort to combat the nausea and stay hydrated. You’ve run out of medicine. You’re away from home and your doctors. You’ve got plans that you don’t want to miss for anything in the world but the doctor says there’s nothing else that can be done because you can’t fax pain medication. It must be hand-delivered with a doctor’s actual signature. The ER won’t help because they’ll just accuse you of drug-seeking and send you on your way. Do you head home on the off-chance that your doctor will prescribe pain meds and that they will work? Or do you stay where you are and hunker down as best you can in hopes that the incredible pain passes soon and you can still participate in your planned activities? It’s a lousy situation, isn’t it? In fact, it seems like a lose-lose situation. Now imagine that you go through this (or at least the very fear of this) every time you travel more than 30 or so miles from your house. Imagine the kind of anxiety this would evoke during every trip, every overnight, every “supposed-to-be-fun-but-migraines-ruin-everything” event. It’s a lousy way to live, if you can even call it living at all. It’s more like existing. I’m tired of merely existing. I want to live, to light up the world like a firecracker. This is why I am so passionate about advocating and fundraising. The constant posts and updates may seem like a nuisance to some but this is my life and the life of my friends. If I don’t raise awareness and money for such a debilitating chronic invisible illness, I can’t ever expect better treatment or a cure. And so I must turn out the light, dim the computer screen, and write posts like this in hopes of reaching at least one person. Making one person understand what I go through or letting one person know that they are not alone. I can’t squint at this screen any longer. I must lay back down and pray that the pain eases sooner rather than later. Now do you get it?