I’m a Tenant in My Own Body & the Space Keeps Changing

I’m a Tenant in My Own Body
& the Space Keeps Changing

“I feel like I’m preparing for some great change. Like I’m going to need a lot of medicine & a lot of strength to get through what’s ahead.”

I said this to a dear friend earlier last year. I don’t claim to be some omniscient seer who “knows all” or anything. I just have a pretty sharp intuition that I don’t ignore. I’m also not referring to medicine as anything prescribed by doctors or anything. Most know by now that I’m Ojibwe & the native view of “medicine” is different from what comes in our little orange plastic bottles. I felt something in me changing. I felt something new approaching. I felt signs within me that were loud & blaring. I was finally ready to listen. I was ready to fade into whatever was to come.

I was diagnosed with Polycystic Kidney Disease as a teen. I knew it was in my family. I was told “it won’t affect you until you’re old like grandpa.” That wasn’t true. I was 19 when I had my first taste of a kidney infection & every year that followed I’d get the feel of another one. “It’s a symptom. It’s not uncommon.” At 25 I thought I had another infection because the pain in my kidneys was so horrific I thought I was surely going to die. The pain never stopped. My kidneys were officially too cyst covered & too big to be ignored. I fought an infection that didn’t exist for months & took a lot of useless medications that did more harm than good for me. I fought for doctors to listen to me. To believe me. I insisted that I didn’t want pain medications. I just wanted to know how to live in pain like I was. I wanted to believe it could go away with some magical lifestyle change or something.

I had a grand mal seizure six months later. Then I had another. & another. Soon I was having 10-25 seizures a day. I tried a slew of meds & combos, all of which had some kind of disastrous effect, usually in the brain department. I learned that a lot of things can be caused by medications. I heard “I knew this was a side effect, I just never saw it until now” over & over again. I gave in to taking pain meds after being pushed by a doctor. I soon started to abuse those pain meds & thankfully I caught myself heading down a path of utter destruction in time or I would have been far worse off than I already was. It took years, but I finally learned more about my epilepsy diagnosis, & that the episodes I had as a child were most likely seizures since there were always concerns about it being related to my blood sugar level. My blood sugar levels have always been just fine & I feel doctors back then were just writing it off as “she needs to eat more & regularly.” I have to laugh at that. I was a tiny little thing most of my young life & believe me I could eat. & I did. If I even tried to eat half of what I ate then now, I’d be more ill. I’m not so tiny anymore. I also have to balance my diet & avoid certain things sometimes. Moderation is the key to me not feeling awful after eating. Sometimes it doesn’t matter what I eat, I’ll be nauseated all day. It just comes with the territory. A physical cause of the epilepsy was also discovered. A tiny little mark on my temporal lobe that “I was most likely born with.”

It took a few more years but I found that CBD oil pretty much eliminated my daily seizures. Not being so stressed all the time helped too. I can’t remember my last seizure. I believe it was last year sometime. They’re mild when they do occur & very manageable. I’m thankful. I learned what triggers to avoid. (Lights, sounds, etc. I’m very careful.) I still don’t drive because I can’t avoid sunlight strobing through trees or all the bells & whistle sounds that cars make now & that would be very dangerous to have a seizure while driving. I do navigate the world better now though. I rely on my wheelchair & my noise cancelling headphones to get me through most outings. So far, so good. 

CBD oil also helped take the edge off of the pain. My aunt also makes a wonderful herbal tea that takes the edge off of the pain as well. Nothing has cured it completely, but I have things to help me rest or at least function better. I always complained about the mild neuropathy I felt in my arms but I was always just shrugged off when I mentioned it. It got worse & worse. I was feeling it not just in my arms, but in my hands, my legs, all over. My face would start twitching when it got really bad & I found there were parts of me that would just get so numb I worried they weren’t there anymore. I learned about “flare-ups” & that the heat & the sun would make me burn like a cinder no matter how high my AC was cranked up. The softness of blankets would feel like scratching fire. Parts of me would just give out. My legs while walking would simply refuse to work. Then my entire body would start pulsing like lightning was running all through me. Doctors finally diagnosed “neuropathy” but have yet to give me a reason as to why.

I thought I knew fatigue. I knew what it was to push too hard or do too much & feel wiped out for a day or so. I knew that little things could wear me out. This new fatigue though, this chronic fatigue, is something else entirely.

It started earlier last year. I was tired a lot. Tired after doing a whole load of nothing. Naps worked. A little caffeine worked. I kept going. Then it turned into: “I’ve had an extra cup of coffee & a three hour nap & I feel like I haven’t slept in a week.” “I was brushing my teeth & I felt like the toothbrush suddenly weighed 25 lbs.” “I fell asleep while reading…I fell asleep while watching…I fell asleep by just sitting there…” On a good day, I get about five hours of productivity before I crash. On a bad day, I’m in bed all day & can only recall hypnagogic moments that I turn into poems. I read a lot of books because that’s all I can do most days. Then some days all the words are alphabet soup & I don’t even know what I’m reading. I’ll be talking to someone & too often I’ll say “I don’t know what word I’m looking for”. I’ll walk into another room to tell my husband something & I have no idea what I wanted to tell him. I started writing notes & setting alarms for everything important so I don’t forget. It’s been such a rough few years & I am too exhausted to even begin processing 2020. Here we are at 2022 & I’m trying to fit into a new body & get used to a new brain that’s way more foggy than usual. My pain changed too. “My fingers hurt because I typed or wrote a lot” turned into “I haven’t done anything but wake up & I can’t bend my fingers.” Sometimes I think “Wow, this fatigue is even worse than the daily pain I’ve been in.” Then other times I think “No, I’d rather be tired & asleep than feel this.” It’s a no-win either way. 

I have to decide if I want to pursue an “actual diagnosis” or just deal with what I’m already given because naming it something else, something official sounding, won’t make a difference in what it does. It can’t be stopped now & I don’t need confirmation of that. There’s no one test for most things. I’ve already had a lot ruled out as well. I just don’t know if “Well, it probably is the kidney disease causing all this” is good enough. I’m still in Stage 1 of PKD even though my kidneys are ginormous. They still have full function, which I’m incredibly thankful for. Hopefully I can keep it that way. (I really need to stop saying that though. They’re going to fail when they’re going to fail & really, no matter what you do, you can’t stop it. You just might be able to slow it down. But I’m not going to accept that kind of responsibility for a genetic disease that I have absolutely no control over. I can do what I do. I can hope. I can pray. That’s it, really.)

Most of the time thinking too much on all this makes me dizzy. Bending is already a no-no for me. Now I move forward ever so slightly & sometimes I’ll feel like I just stepped off of a tilt-a-whirl. Mental exertion is dizzying, never mind the physical. I feel like a semi-functioning mess most of the time. The mental symptoms of worry & anxiety, depression & feelings of worthlessness are their own battle as well. None of this is easy. In fact, it’s extremely hard just to be alive. 

This year I’m abandoning the idea of making plans. Goals aren’t productive for me either. I can’t push writing or make it happen if it’s not going to. I can’t force myself to stay awake because I “just want to be normal” if I’m so exhausted I can barely keep my eyes open. I can’t force myself to move if my body is screaming at me not to. It’s been silly of me to do that for so long. “Normalcy” is different for everyone & mine looks drastically different than it did thirteen years ago, & definitely looks different than it did just one year ago. (A lot of us know what that’s like now. Perhaps it’s time for everyone to abandon the idea of what’s “normal”.) 

I don’t know how I’ve done this for thirteen years. I don’t think there’s some magical secret to living well that works for everyone. I think I’m going to be in a state of trial & error until the day I die, & ya know what? I’m alright with that. Changes will keep coming & hopefully I will be balanced enough to roll with them. 

I’m tired now though. I’m going to lay down. Thank you for reading. Those of you who follow me on Instagram may have seen the post I made about more personal essays (especially about living with chronic illness) showing up on the blog this year. Maybe they won’t look as put together as an “essay” & will read more like “rambling blog posts” but that’s quite alright. I feel ready to invite readers into my world a little bit. People may not know this, but I’m shy with strangers & even though I “know” some of you either in person or by your own blogs & writings, it’s still a public platform. When I was a kid, I loved the spotlight. Now I want it as far away from me as possible. So I’m expanding the sharing of my life beyond the circle of my family & friends & that in itself is terrifying. Every personal post I’ve made so far has always filled me with intense anxiety. I don’t feel that will be the case anymore. 

May your 2022 be whatever it’s going to be, & that through whatever comes you will find reasons to smile. I hope it’s peaceful & that you experience moments of kindness all through it.

Photo by Tiago Bandeira on Unsplash