Image from @how.u.feeling
If you ask me how I am, I don’t know if you want to hear the truth or just reassurance that I am still trucking along. I don’t want to seem like I’m whining and I don’t want to always be talking about my health issues, diagnoses, pain, and upcoming surgery. Sometimes I need to talk about it though. Sometimes I just need to be heard and validated and believed. I don’t know how to tell what I need in which moment.
I think it scares people even more when I talk about how this all is affecting my mental health. It seems people have an easier time hearing about the concrete medical things and not so much about how I am struggling emotionally. The few weeks after I got the chiari diagnosis and surgery date, I really struggled. I cried every single day. When I tried to talk to friends about this, I got radio silence or uncomfortable words of support. Then there was my dad who told me to go on medication like him. Once I realized how uncomfortable peoole were with this, I stopped talking about it.
Some of my symptoms hurt a lot and some make me feel crazy. They all come and go except for the constant low deep ache in my body and the chronic fatigue. I get a thrumming in my ear now and then, usually when washing dishes or doing something in that same position. If I overdo it physically, which is way less than even normal me could handle, I have an issue where my left leg stops working properly and it becomes very hard to walk. It’s as if my brain can’t get the signal to my muscles and nerves, so the rest of my body has to pick up the slack, which is exhausting.
I counted 103 migraine days in 2019 and so far 5 in 2020. Sometimes they are more typical migraines with deep thrumming pain on one side. But the chiari ones feel like the claw end of a hammer is digging up into the back of my neck/head. Add to that front of head and eye pain, light, sound, and scent sensitivity, and an inability to focus and find words. Yesterday was a bad one that medicine didn’t touch.
All of this greatly disrupts my life. It also makes me feel hopeless and very negative. When the neurosurgeon asked me if I have pain free days, I said, “in my whole body? No.” Woke up with no migraine so here’s to a low pain day where I can function, have fun with my kid, and have a life.