I’m not sure who I’m really speaking to, but maybe it doesn’t matter – maybe I just need to vent. Or complain. Whatever. Maybe this is my way of therapy. I’m tired – 2.5 years of mystery symptoms that seem to rotate and include multiple systems. But mainly, it’s generally neurological. And as of late, probably psychological too. My husband and I have figured out that something is affecting the autonomous nervous system. We just don’t know how/why/what. My body keeps betraying me and I don’t even know why.
I want to laugh when a doctor/medical paperwork asks if I’m depressed – seriously? Do I have anxiety? Well, I’m disabled (in a way) and I basically live in a recliner since I have to sleep reclined. And I spend my day mostly in the recliner since the mystery symptoms could have my legs just give out on me for whatever effing reason. Oh, AND I’m fatigue because my iron levels are always on the low end of the scale. YES – I am depressed sometimes. YES – I deal with anxiety. I never known when the weirdness will happen and having an episode (as I now call it) happen in public only makes it worse.
They run tests and don’t want to go zebra hunting, so they want to slap a label on it without digging around to find out WHAT IT IS/WHY IT’S HAPPENING. My husband recently found some medical studies and articles about dysautonomia – the kicker? It’s as vague a diagnosis as you think it is. And it doesn’t have a clear cause. AND it’s diagnosed by eliminating other things and looking at symptoms. AND there’s no cure. Hooray. Doctors and specialists all seem to operate in bubbles and no one wants to leave their effing lane. At this point, big deal if that’s what it is. Who’s gonna go the length and figure that out? Who’s gonna get out of their effing lane?
I have found “therapies” – cozy video games so I can be as anal compartmentalized and organize as I want. I play the same few games over and over because trying something new is legit scary. I like the known. I like to be in control of SOMETHING, you know? I’ve made games guides for my cozy games that are super detailed and extensive since projects make my brain happy. Having tasks to do that don’t drain me physically make my brain happy. And it pushes back the brain fog. And I write – I started a fanfic that ended up being 78 chapters. Then I started a sequel in which I am currently 25 chapters deep. But it helps because it makes me think/build plots/weave story lines/develop characters. And I recently found like I do, indeed, like anime. Or I like the 2 animes I recently discovered. Given the set-up of light novels and mangas, I will probably like those as well.
My husband is happy that I have things to do. My mother and sister? Nope. My mother believes I should be doing something more productive. My sister thinks I’m hiding and needs therapy. Once upon a time, I was a copywriter and proofreader, but had to stop working. I was forgetting big parts of my vocabulary – I actually still struggle to remember words I know I should know, but I keep an online thesaurus page open all the time to help me. I get that video games aren’t their thing. And I get that fiction isn’t something my mother would read. But to regard the things keeping my brain effing intact as something disdainful? WTAF? And they don’t want to keep health stuff either. But, my mother is still “happy” to bemoan who I don’t call or visit like I used to. I’M EFFING SICK. Why should it fall on the person who’s clearly struggling to maintain communication? My mother doesn’t hide at all that she purposefully won’t buy gift cards that I would use to buy games (like I’m out there buying 100’s of games anyway. I play 2-3 games on rotation).
Am I keeping up with the meds I do know I can take to help with some of the symptoms? No. Because I can’t remember. And someone nagging me to “set reminders on your phone” or “leave notes” is grating. I’ve tried that and they don’t help. I read the note and forget. I turn off the alarm and forget. I don’t how to tell my mother that I don’t visit because she causes so much stress, and for me, stress is bad. Literally. It triggers episodes just like eating something my body has suddenly decided it no longer tolerates. Or walking too much. Or any other reason that I suddenly have an attack.
And doctors can’t wrap their mind around the fact that most drugs don’t help. What does help? Nicotine. Shocking, right? I use nicotine pouches daily to stop the episodes. There’s a longer medical explanation as to why it helps, but it just boggles them anyway. I’m not lighting up – I’m sucking on flavored pouches. I want my life back. I want to be active again. I want to be normal again. I’m not completely hopeless. I’m just tired. Eventually, I might get tired enough to tell the people stressing me out to fuck off.
Pen in Motion 