Lexie

@lexie1512 | contributor
24 year old Aussie living with multiple chronic health conditions, including MSIDS and Chronic Fatigue
Lexie
Lexie @lexie1512
contributor

The Accident That Triggered Symptoms of My Genetic Mutation

I want you to take a minute to imagine something. Imagine this. You’re 18, you’re traveling the world, living life to the fullest, adventuring with your friends. You go cliff jumping into a river, an activity you’ve done countless times in your life – off so many cliffs, into so many rivers. You’re in one of the most beautiful places you’ve ever seen, and the weather is perfect. Your friends take turns jumping into the freezing cold water, their shrieks of joy and adrenaline echoing back up the cliff to you as they free fall into the water below. It’s your turn, you’re so excited, you walk to the edge, push all your weight into the balls of your feet as you prepare to jump, a feeling so familiar to you, something you’ve done a hundred times before. But then, the unthinkable happens. The gravel shifts beneath your feet, the slight downward slope of the cliff edge claws at your center of gravity and you slip, suddenly your feet fly out in front of you, and you’re falling. Horizontally. And the worst thing is, there’s nothing you can do about it. You free fall like this for 35 feet, landing on your back, on unbroken water. You don’t know this yet, but this is the moment where your life changes forever. You black out when you hit the water and you later hear your friends’ retelling of the story, how they heard all the air leave your body upon impact, and the rescue that followed and you thank your lucky stars for your strong, quick acting friends who pulled you out of the river. You later learn, this type of fall should have killed you. It’s nothing short of a miracle that you’re alive. I want you to remember that, OK? Don’t ever take this for granted. For weeks after the accident, your body is one giant bruise, a galaxy of every shade of black, blue and purple. You feel the pain coursing through every part of your body so you don’t immediately notice the shattered collarbone, the broken ribs or the damage you’ve done to your diaphragm, or realize the effects this will have on your body for years to come. You’re 18, you think you’re invincible, you think you’ve come out of this relatively unscathed, with a few good bruises and another gap year story to tell. You’ve also never been more wrong. Fast forward three years, you’re experiencing all sorts of health issues, and you’ve been to countless doctors, naturopaths, etc., trying to find answers. They run simple blood tests, and they all come back clear, you’re fine, totally fine, your doctors assure you. Their advice ranges from hopeless, to downright ludicrous; you get told you just need to drink more water, get more sleep (more than the 14 hours a night you’re currently getting) and, the icing on the cake, to stop being so dramatic. You’re fine, just fine. You’re a perfectly healthy 21-year-old. Only, you’re not. You get disheartened, and stop pursuing medical help, your symptoms slowly getting worse and worse. Two years later, a friend recommends you to a doctor who might be able to help. So you book an appointment and off you go, with the lowest of expectations. He runs the standard blood test, with the results unsurprisingly coming back clear, you’re fine, totally fine. Only you’re not. And this time, it’s different. He says to you, you’re young, this is not normal, and he tells you that he will fight for you until he works out what’s wrong. And here’s the amazing part: he doesn’t let you down. After months and months of testing, and more blood tests than you can count, he finds it. A series of gene mutations you were born with, which you’ve carried your whole life unaffected, that are set into motion by a traumatic event. Such as a physical trauma to the body. Like falling off a cliff. Which low and behold, carry the exact set of symptoms you’ve been suffering for the last five years. Bingo. Finally, some good news. You and your doctor are overjoyed that you finally have a diagnosis, something concrete to work with. You can finally silence that little voice of doubt in the back of your mind that wonders if maybe you are just “crazy,” because now you finally have a diagnosis, this is the good news. The bad news is, it’s a gene mutation, there is no cure. There are treatments which will manage your symptoms (that is, if the treatments work for you, and spoiler alert: they don’t) but there is no cure. This is something you will fight, every day, for as long as you live. And you will fight, you’ll fight like hell. Because despite the bad days and the downright awful days, there are good days too, and there will always be good days. Sometimes there will even be great days. Remember that. You’re going to torture yourself over the “what ifs.” What if you never went that day. What if you had picked a different cliff. What if you weren’t so adventurous. What if it had rained the night before and washed clear the gravel you slipped on. What if you fell at a slightly different angle and didn’t shatter your collarbone. What if. What if. What if. Take my advice: don’t do this to yourself. Please, whatever you do, you cannot do this to yourself. It’s no way to live. What happened to you, happened for a reason. And maybe you don’t know what that reason is yet and maybe you’ll never know, but you have to trust that. What happened to you, happened. And no matter how badly you may want to, you can’t turn back time. So don’t look back. Sure, this isn’t the life you had planned out, it’s not even remotely close to the life you imagined and dreamed of, but it is your life and you only get one shot. So no matter what circumstances you find yourself in, don’t forget to live your life. I know it sounds cliché but in this case it is more true than most; it’s a miracle you’re alive. Don’t forget that. Imagine. Imagine this happening to you. I don’t have to imagine, this story is about me.

Lexie
Lexie @lexie1512
contributor

When Illness Makes You Give Up the Commitments and Activities You Love

I just made one of the hardest decisions I’ve ever had to make. Many of you can relate to my story. I’ve seen countless doctors, integrative general practitioners, naturopaths, chiropractors, and specialists over the last few years. When they couldn’t explain my symptoms, they diagnosed me with chronic fatigue syndrome (CFS). I’ve since been diagnosed with an ever-growing list of chronic illnesses, viruses, genetic mutations, and co-infections…the bottom line being, there is no magic cure for all of this. Eight months ago, my doctor officially ran out of treatment options for the particular gene mutation that is currently causing the most drama. We had now trialled every treatment possible, with the last attempt making my hair fall out at a rather alarming rate, and it sent us firmly back to square one. With this new information, he gently told me it was time; time to give up all the activities of my full life, focusing only on work (a necessary evil) and getting better. Slowly I started saying goodbye to the things I loved, and began the painful processes of extracting myself from the various groups I volunteered with, the young women’s Bible study group I ran with my friend, my gym membership, the spontaneous beach trips, the list goes on and on. At my next appointment, my doctor asked how I’d gone with removing commitments from my life and replacing them with rest. I told him there was one thing I wasn’t ready to part with yet, a volunteer group I run, the thing I am most passionate about. He smiled sadly and said, “I know.” He knew the incredible weight of the loss I was experiencing. I couldn’t let it go. That would mean I was actually sick. It would be the last thing I would part with. Eight months later and here we are. With another three diagnoses added to an already long list and the light at the end of the tunnel well and truly out, I knew it was time. I made the incredibly difficult decision to step down from the one thing I was most passionate about. I made the call I’d been trying to avoid for months, and set in motion the beginning of the end. And then I sat in my room and sobbed. I cried for all the things I’ve lost to chronic illness, I cried for the person I used to be, and I cried for the person I’ll never get to be. There’s not a single day that goes by without being reminded of everything I’ve lost. Here’s what I want you to know about grief: There’s going to be good days and there’s going to be bad days. (Oh boy, there will be bad days.) You’ll grieve everyday for the person you once were, for the person you dreamed you’d be, for all the things you thought you’d do. You’ll grieve for everything you’re missing out on, for the life that’s flying past you, the people whose lives are moving on without you, and most of all you’ll grieve for everything you would have done if you weren’t sick. Your heart is going to break when it hits you that you’re missing out on your life. You’re going to hate every muscle in your body for betraying you, but it’s OK to be mad at your body when it’s failing you, it’s OK to be mad. It’s normal to grieve when you’ve lost something or someone and it’s important to acknowledge your grief. This is your journey, you can, and should, take all the time you need. It takes time to come to terms with loss, of any kind, so take your time. I want you to know, it’s OK to cry when you’re hurting. But when you’re done, wash your face and pick yourself up off the ground – you don’t belong down there. And lastly, I hope you know you’re brave, even when it feels like you’re not. Getty Image by TeoLazarev