Chronic Lyme Disease steals your life. In the beginning, it robs you of your dignity. No one sees, no one believes, no one supports. You are treated like a pariah, a psychotic, an attention-seeker. When all you want and need is acknowledgement of what you know is wrong, and help in keeping this evil and pervasive pathogen at bay. When you know that if it isnt treated quickly and appropriately, that you will never be free of this terror...and yet you can find no one willing to take you seriously, no one willing to reach out a hand and pull you out of the waters that are soon to envelope you. Next you are abandoned by the very people who made promises to always be there for you, in one way or another. Doctors, spouses, parents, friends, grown children, siblings. They deny. They mock. They disbelieve. They ignore. They run. They ultimately desert you. Then Lyme robs you of your confidence in not only what the next day may bring, but even the next hour. One moment you may look and feel fine. And the next moment you are struck by a freight train. And it doesnt slow down once it hits you. Not even a brake light in the distance. What does it feel like? The flu, headaches, body aches, a cold, a sinus infection, swollen glands, fever, allergies, asthma, chills, night sweats. Nausea, vomiting, Irritable Bowel Syndrome, cramping, food allergies/intolerances and various other GI issues. Migraines, memory loss, brain fog, tinnitus, brain lesions, tremors, seizures, chronic debilitating fatigue. Tooth pain and loss, receding/bleeding gums, dry mouth, light sensitivity, sound sensitivity. Skin lesions, scarring, cold/heat intolerance, bruising, blood clots. Eye issues/vision loss, retinopathy, floaters. Arthritis, tendonitis, bone pain, muscle aches. On a good day, you may have two or three of these symptoms. Or you might have them all. And you never know when its going to hit. You will have to cancel plans, over and over and over, until your friends stop inviting you to join them. And your family loses faith in you. You will miss out on your childrens plays or sporting events. Time stolen by Lyme. Time you will never ever get back. You will spend money on vacations and concerts that you will not be able to attend at the last minute, because Lyme is a stealth criminal. You dont know when its going to sneak up and ruin your day, your week, your year. The very next day you may feel better. And then you may end up in bed for another several weeks in a row. And no one will understand how its possible. No one will believe its possible. But trust me, this is life with Lyme. It is a physical and emotional and mental struggle... every single day. And the worst is the knowledge that it most likely will never get better. Maybe for a week or a month, or if you are very fortunate, a year. But you will never have the life you once knew in your grasp ever again. Never even a proximity of that life. You cant eat normal, you wont sleep normal, you cant work, exercise or socialize like you once did. And if you are fortunate enough to find the rare specialist who can treat you, the number of pills and medications you are required to take on a daily basis is extraordinary. Ironically, those very medications that are meant to help you and heal you will most likely do all kinds of other damage to your organs and your system as a whole. You will be constantly exhausted, and yet never be able to sleep at night, even with multiple over the counter and prescription sleep aids...medications you will then become addicted to. To add insult to injury, your insurance company will pay for very little, if any, of your treatment. Many will spend all of their money and end up deep in debt from outrageous medical bills. They lose their jobs, their homes, their vehicles...everything. There is no way out. Its like waking up in a dark alley, with your face up against a brick wall every single day. Every day fighting to figure out how you might get over, under, around or through it. And not one person out there is the same when it comes to the treatment of this disease. There are thousands of variables that factor into what works for anyone, if anything at all even works. What helps some wont do a thing for hundreds of others. Imagine if that were the case for any other disease out there. If no health care provider (or patient) ever really knew what was going to work. One person could go into remission in a month. And another could stay sick for decades. And no one can say why or how this is the case. And your mind is never the same after Lyme either. The neurological ramifications are terrifying and often irreversible. Both your logical, thinking mind...and your emotional feeling mind. You develop memory loss. The kind that makes you forget a friends name as youre leaving her house after spending an entire evening with her and her family. The kind that strikes when you are driving and you realize with fear that you are completely lost. And seconds later you see that, no, you are on the very same road you take to drive home every single day. The kind of blackness that stops you in your tracks as you walk through your best friends kitchen..pletely panicked, not knowing where you are, for a good five minutes. You will send someone a text, and when they reply 15 minutes later, you wont remember what you had said to them in the first place. Your phone will remind you to pick up your child at practice in 30 minutes, and 15 minutes later, you have already forgotten. This is just some of the neurological damage caused by this bacteria. Emotionally, you become volatile. depressed, angry, irrational, irritable and indecisive. You ability to handle stress drops to near zero, as does the threshold at which you become overwhelmed. You lose your ability to multi-task, and the stimulation from loud noises and bright lights make it virtually impossible to remain calm, collected and functional. Its like having Alzheimers, every autoimmune disorder out there, a variety of mental illnesses, amnesia, and Post Traumatic Stress Syndrome...all simultaneously. I have Chronic Lyme Disease. (Written by Kara Niles Sherry, but its my story and couldnt be explained more perfectly)
Posted on: Sun, 09 Mar 2014 01:37:25 +0000
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