Chiari Migraines & Other Things

I don't know how many of you have a Chiari Malformation - I know something like 1:1000 people have it. I'm fortunate in the fact I have a Type 1 Malformation; the herniation of my cerebellar tonsils isn't as severe as it could be, but I'm also highly symptomatic. I deal with neurological issues in my arms and legs (nothing like throwing an object you went to pick up), extremely painful, light-and-sound sensitive migraines, the works. The migraines can last anywhere from a day to a week or more. Sometimes after a week long migraine I'll get one day of reprieve, and boom, here comes another one.

The irritating thing about Chiari migraines is the fact that there is very little to do about them. I've tried different pillows, different medications, applications of heat or cold, nothing seems to fully treat or prevent them. I'm finally starting to come out of a migraine that was so severe the idea of drilling burr holes in my head to ease the pressure with my dad's power drill was highly appealing. The slightest sound was deafening, the tiniest light excruciating. I couldn't let anything touch my head without intense pain.

Even without having Fibro, without having IBS, CFS, Hypothyroid, HMS(Hypermobility syndrome), depression... the Chiari Malformation would be more than enough to knock me on my ass on the regular. And these government people keep telling me I can work? I can't even shower every day! I can't even EAT every day! Hell, I don't even get to sleep every day no matter how crippling the fatigue and exhaustion is.

I would love to have these people hooked up to one of those simulated pain machines while being kept awake for 3-4 days to simulate the fatigue, mental confusion, brain fog, and exhaustion so they can get an idea of what it's like for us Spoonies to try to do anything. They have so little empathy, and so little sympathy. It isn't entirely their fault I know. To normal people, pain is temporary. But how can they sit there and ignore the doctors saying I can't work? The thick medical files showing my symptoms, their progression, the limitations of my condition..? I don't understand. It's so frustrating, and so disheartening at times. Invisible illnesses are always difficult to bear, because to the rest of the world, we seem fine.

I'll always keep fighting, though - fighting to accomplish things, fighting to be seen and heard, fighting for understanding, fighting my depression - because the day I stop fighting is the day this myriad of acronyms I've collected wins. I'll never let that happen; not as long as I have the will, the ability, and the strength to do anything about it.