My personal background of chronic pain: endometriosis (have had two surgeries for it so far) and fibromyalgia (since 1995). The fibro wasn t diagnosed until 1999, and before it was i was misdiagnosed with a number of things; one of the misdiagnoses was a potentially fatal autoimmune disorder. I was 23 when that happened, and spent a good six to eight months believing that my life was going to be Shorter and More Miserable than the lives of the people around me. When i found out that what i had was Not A Fatal Condition, it was very much a life-changing event. I had tried a number of highly ineffective coping mechanisms, from alcohol to denial. Eventually i came to realize that this chronic pain is a hidden blessing. I know this sounds completely and totally cheesy, but hear me out. People like you and me have to plan out every single moment of our day. If our hands aren t working right, we wear clothes with zippers instead of buttons. That sort of thing. When we get home from being out (be it work, errands, a walk in the park, whatever), we have to choose between spending time with loved ones (or relaxing by ourselves in some fashion) and going to lie down from exhaustion. Sounds pretty crappy on the surface, i know. But wait for it, it gets better. We live our lives having to make conscious, minute-by-minute decisions regarding our quality of life. While it certainly can be a whopping huge pain in the neck sometimes, it makes us more aware of those little moments... both good and bad. It means that time spent with loved ones is a Choice, not Just Because. We =choose= the lives we have. I ve compared notes with friends who do not have chronic pain issues, and found that most of them don t understand what it s like to truly appreciate the Little Moments in life. Moreover, they seem almost oblivious to them. This is not necessarily true of everyone who has a pain-free daily life... but it s not entirely uncommon. I ve also learned that largely, life is what you make it. I ve wasted no small amount of time moping about the daily pain that travels (and yet it just won t leave!) all over my body with no relief, no respite. I can choose to let it get to me, or i can choose to make the best of what i have. I have to fight more for the things i get, but it makes those things that much sweeter. I can choose to cry about my back going out, or i can find ways to joke and laugh about it. I can t tell you how many chiropractors i ve confused by doing just that! I know it probably sounds hokey, and for that i apologize. But i promise you it s all true. I can only type so much before my hands hurt, and i have =chosen= to type out this huge long thing for you... that s how much it means to me. This life is full of things that we are given, and it s up to use to make the most of them. No one else is going to make our lives Worth It if we don t do it ourselves.
Hello Unicornlover, Living with mulitple illnesses is not easy, especially when there is no cure. But there is treatment for your list of illnesses, so for QUALITY of life issues, you must keep on top of treatment. You must go to doctor appointments often to monitor your illnesses and medicate as needed to control symptoms. Good communication skills will go along way in helping you create a working relationship between you and your doctors. Also, since so many doctors today are into specialities you probably have to be clear on which doctor to call for what kind of symptoms you are having at any given time. It can be frustrating and draining to have a lot of appointments with different specialists when you are not feeling good, but, taking your medications and making it to your doctor s appointments is one of the best things you can do to keep your symptoms controlled and your quality of life all it can be. It helps to have a very good GP (general practitioner) to keep track of all of it. I d like to say a few words about stress. Stress is a known trigger for flare-ups with the Fibromyalgia, Arthritis, and Depression, and has a negative impact on the rest of your health which includes your PKD and Barrett s Esophagus. You have got to look for ways of reducing stress in your life and keeping it to a minimum. With proper management, you could have a decent qualitly of life in spite of your multiple illnesses. Getting your health issues under control has got to be one of your main priorities in life now. If you can get your symptoms under control, you will no longer be needing to wonder how others deal with chronic illnesses. If you have doctors that you are unsatisfied with, change doctors. You have got to be your own best health advocate. Good luck and best wishes! S
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