 This is the time of year when we all gather around and say (or at least think about) for whom and what we give thanks. This year, for my combined family (my immediate family and my husband's), the Thanksgiving holiday will be a difficult one. Since May, we have lost my husband's great-aunt, my Gram, and his Grandma. We've experienced a number of setbacks with my illness, as well new diagnoses for my father and sister. In all, it has been a really rough year for me--probably the most trying one of my life so far. However, I am incredibly grateful and thankful for my wonderful husband (who I will call "K" on here), who has stood by me through everything. K and I have known each other for year; so long in fact, he actually remembers me before EDS started to have a negative effect on my life. I cannot imagine how difficult it is for him to have to constantly adjust to the new facets of EDS. But he does so, and we have gotten through some pretty terrible times in order to have some fantastic ones together. So this year, I am thankful for K, my match in life. We both realize that, even though our life together has not turned out anywhere close to what we expected, the fact that were together, and working on our love together, is what matters. EDS or not, this is what counts.
 In the blink of an eye, you life can change due to a diagnosis of a chronic, incurable disorder. You are forced to come to a screeching halt before taking a sharp turn. Your goals, dreams, and priorities must change. You may grieve and feel the loss of your former self; however, you become grateful for the little things in life--the things that seemed too trivial to notice previously . Worrying about life's minutiae suddenly takes up less of your time. You must now determine how to use each and every ounce of energy, and make it count. Your energy must be spent on people and things that are meaningful to you. Needless drama is cut out of your life. This new life can be confining in ways, but also liberating. Live it.
 There are days (like today--another rainy, damp, icky one) where it is hard to separate myself and my EDS. My EDS is so intertwined with everything about me: how I feel, how I act, how I move. It's hard to remember that EDS is NOT me. Of course, it's become a part of my life, a much larger part than I ever would have imagined. However, facing pain and disability has also forced me to grow as a person--to become stronger, more observant, more flexible, more patient. I've slowed down a lot, but I've gained a perspective on life that I was never allowed before, always rushing from place to place. EDS has, of course, changed me. But it is not me.
 Note to self, and to you, dear reader: please remember this today, and every day. Those of us with chronic illness (especially when chronic pain is involved) tend to be extremely hard on ourselves. I know I am. I hate it when I don't get through my to-do list (or, some days, even look at it). I start that vicious cycle of thinking "I could have done this easily before I was sick! And a lot more! On 4 hours of sleep! Etc., etc." And what does that accomplish, (well, other than making me feel horrible, guilty, and lazy)? Absolutely nothing. So, this is my new mantra to repeat to myself when I feel the bad thought cycle starting: "I love you, you did the best you could today, and even if you didn't accomplish all you had planned, I love you anyway." It is time to let go of the guilt.
| Amie K.EDS warrior. Find me on Twitter and Inspire as LilacZebra. Questions, comments, and/or suggestions? Email me ArchivesCategoriesAll |
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