Tuesday, May 20, 2014

The Insecurity of Chronic Illness

My father once told me that by the time he was forty, he finally felt like he'd "gotten his legs beneath him." Meaning that he finally felt like he knew what he was doing, had this "Life" thing pretty well figured out, and he was able to propel himself forward from his own efforts. I can tell you with a chronic illness, I have no such knowledge. Just because I felt one way on Monday doesn't mean I'll feel the the same way when I wake up on Tuesday. The instability of that makes me feel incredibly insecure, and I know I cannot reliably propel myself forward. I have no legs beneath me, and on Monday, that manifested itself literally. i woke up and couldn't walk.

This wasn't the same as waking up with one of your legs asleep. That happened today because I was sleepwalking last night and fell asleep in a weir position. But yesterday was not that at all. When my leg is asleep, I can still put weight on it and the limb pretty much responds, even though I can't feel much and have pins & needles. What happened Monday included NO pins & needles, the leg wouldn't respond at all, and I couldn't put weight on it, period. I would fall. It lasted for about a half hour and then magically went away. It was terrifying, suddenly not being able to walk for no reason and with no warning. I found out this happens to my Unicorn Sister too. I talked with her more and found out she has Narcolepsy as well!

My body has a will of its own, and that will is stronger than my own. I do not feel safe in my own skin. Who would? I don't feel like I can get my legs underneath me in real life, how could I possibly feel that way metaphorically? How can I feel like I've figured anything out, when the rules keep changing from day to day? My body is unreliable... how can I possibly propel myself forward? Gods, I felt more secure in my twenties than I do now, and I was horribly unsure then! I didn't realize how much I had to be sure of, and now that I've lost it, I realize how much I took for granted when I was young.

It's time to regroup and reassess. My Unicorn Sister and I cam up with an idea, and we're praying it works. I'm going to go see a doctor in Arizona where she (my Unicorn Sister) is also a patient, and see if the doctor can draw some conclusions based on similarities between us. Not being able to walk was terrifying. Knowing that my Unicorn Sister has also experienced this symptom and the Narcolepsy.... since it's going on with both of us and we both have the same rare autoimmune disease, there's got to be some breakthrough we can manifest having both of us seen by the same doctor! My appointment is in the end of November, however, so there's a long wait for any answers.

In the meantime, I must take what life dishes at me and deal with it the best that I can. It means that day-to-day I have no idea of what I'm capable of: sometimes I'm an amazing, shining star, sometimes I'm the tail light of a septic truck that flickers on road bumps. I can't tell you which day is going to be which. I can only do my best when I am able, an rest up when I am not. I really don't have a choice in the matter! lol

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