Living with Ehlers Danlos Syndrome (EDS) means you never really know how your day is going to go, but you do know that it will always involve some sort of pain, fatigue, as well as other debilitating symptoms, the severity of which is determined by what you did yesterday, or even a week or more ago. It means conserving your energy and choosing carefully what you do in any given moment because there is only so much your body is physically and mentally able to handle. If I go grocery shopping, that means I may not have enough energy or may be in too much pain to make dinner that night. If I overextend myself I may not be able to do anything for several days or even weeks while I recover.
Living with EDS also means always being incredibly careful when doing absolutely anything for fear of a sudden dislocation or subluxation of one (or more) of your joints. One time I was reaching up in a high cupboard to get a mug and I injured my shoulder to the point where I needed to have shoulder surgery to repair it. Everyday is a struggle to adapt my environment, no matter what I am doing, in order to minimize pain. Pain never completely goes away, there is always multiple areas of my body that are in constant pain, these locations move, but the pain never goes away. I spend my days taking pain medication, slathering myself with pain cream (such as Tiger Balm), using heating pads, cold-packs, and the TENS unit, all in a seemingly never ending battle with this unrelenting, often excruciating pain.
Living with EDS also means, in my case, I am not able to work due to the pain, fatigue as well as other symptoms I experience, so I am always at home and am always made to feel like a burden to society. My full time job is to manage this body, to alleviate my symptoms and just make it through one more day. Everyday I wake up and repeat this process. It is frankly quite boring a lot of the time as I struggle to find things that I am able to do without exasperating all my symptoms as well as things that feel life-fulfilling instead of just time killing.
I would love to wrap this all up and end with some sort of positive note, but the truth of the matter is that living with Ehlers Danlos is not something I would wish on my worst enemy. It is exhausting, it is painful, it is often sad and depressing. I can say that I have learned to truly enjoy and never take for granted all the good things I do have in my life, I am more grateful for them than I may have been if I didn't have to live life this way. If all I can do is wake up tomorrow and make it through another day, then that is just what I'll do.
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