My Mordor: Having Chiari Symptoms...Again.
I have been having bad chiari symptoms since Sunday. I can barely walk without tipping over. I'm so imbalanced/dizzy that it feels like I'm trying to walk on the ocean. I can barely leave the couch, all I can basically do is walk to the bathroom, but I have to move so slowly and use my cane to do so or I will fall. I've been twitching like I did before my decompression surgery. On top of all this I have a constant headache, but it's not a normal headache, it feels like my head is in a vice, like there is so much pressure building up that my head will explode.
My mother has had to help me get upstairs and into my bed at night and in the morning I have had to go down the stairs sitting on my butt so I don't fall (I've fallen down them partially once this time but thankfully didn't get too hurt). I am 26 years old but I feel like a baby, I should be working, falling in love, be independent but I can't. I feel like I will be relegated to an infantile existence until the day I die. I feel humiliated by my own body.
Sometimes I feel like giving up, I really do. I am forced to bear unbearable pain, I'm forced to rely on everyone else. I don't know what I would do without my mother and brother's help and love, and I am truly thankful for them, but I feel like a failure on top of experiencing these horrible symptoms. it has been a decade since I had my last surgery for chiari and I have thankfully not felt this bad until now, but that doesn't diminish what I am going through at all, in a way it makes it worse because it is very frightening that I'm feeling like this again after all this time. Thoughts begin to run through my mind "am I going to have to have surgery again?" and "this can't be happening again! I can't have surgery again, I just can't do it." These thoughts fill my mind even as I hold onto hope I will get better "tomorrow".
Why am I telling you all this? Mostly because I need to vent my frustration somewhere and my chronic illness blog seemed like an appropriate place to do so. I also don't want to hide because I feel humiliated, I want the world to know what it feels like to have chiari (and EDS and other chronic illnesses) because the sad fact is that I am by far not the only one who experiences "my" experiences. There are so many people who have chiari and eds and the least I can do is spread awareness, even if it makes me feel lousy and exposed.
Some days I feel like giving up, but I won't. Frodo in Lord of the Rings couldn't destroy the "one ring" alone, he had people behind him helping him when he was weak. Frodo felt like giving up too, like he couldn't make it through Mordor, and I feel sometimes I can't make it through my symptoms. But in the end, with help from his friends, Frodo did make it through and defeated evil. I need my friends and family to keep pushing me forward on the days, like today, that I truly feel like I'm standing still, and help me "defeat" my illness by not giving up.
