Many, many years ago I read ‘An Unquiet Mind: A Memoir of Moods and Madness’ by Kay Redfield-Jamison. Anyone who suffers from any form of depression, or any form of mental illness (I hate this phrase. It was once referred to, and sometimes still is, as “behaviorial health”. No, this is completely off-base. These phrases don’t explain why your brain is the way it is, and neither does the term, “mental illness”. We’re not crazy; we’re suffering. It isn’t something we’ve done to ourselves, either. Many people unknowingly have chemical imbalances or very real illnesses, like schizophrenia. To lump it all under one category is unfair and disrespectful.) has probably read this book. If you find yourself in Psych 101 or in medical school studying psychiatry, you will also have likely read this book. If your diagnosis is new, grab a copy, even if only through your local library. It’s not the kind of book you would willingly read repeatedly. Once is enough, unless you want to refer back to it for therapy purposes.
I remember reading it and feeling slightly understood, but my story and Kay’s are quite different. Our backgrounds are drastically different. Moreover, I’ve battled this journey almost entirely on my own.
Were you thinking about suicide before age ten? Probably not. The word was never used in my home. Ever. What I felt and observed brought the word forth and gave it meaning. I have spent the majority of said life not being taken seriously for how I think or feel by family, friends, and most especially, by doctors. I left those “friends” behind, and I don’t regret it. I also walked away from judgmental family members who never bothered to take the time to get to the know my heart. And yes, I’ve fired a plethora of psychiatrists, psychologists, and therapists. There’s no shame in my pursuit for appropriate medical care with caring individuals who treat me like a human-being, No matter what illness you’re dealing with, we ALL deserve to be treated fairly. Unfortunately, this is part of the problem; we aren’t.
These past few months have been daunting. I will explain at length in another post, but for now, suffice to say, I’ve reached both a breaking point, as well as a breakthrough. I’m fed up with the world, with life, with the hardcore activism I feel is necessary, with other people’s bullshit, with feeling like the only honest person in the room most days. It’s a LOT, and I’m tired. Physically, mentally, and emotionally SO drained of my life-force that I am having my groceries delivered tonight because getting out of bed makes me feel ten times worse than I already do. I’m fully capable of going and getting them myself, obviously, but today I broke down in pain. Every bone, every muscle, every part of me is screaming in pain. It’s intolerable beyond words. I found some CBD oil hanging around and have used it, to no avail. It doesn’t touch my pain at all.
My pain is at an all-time high because it was triggered, not just by extreme stress which has badly screwed with my body, my health, and my sleep, but by certain types of people who don’t care whether or not they are harming me. My health is of zero concern, and again, I will be writing about it, mostly because this is my website and I get to tell the truth here. I don’t have to be believed by anyone who does not respect or value me, but I do have a job which requires me to be forthcoming. Actually, it doesn’t. You can do what you will as a writer, but my main focus as always been steeped in honesty. Even in my fictional work, anyone who knows the real me knows the truth in those pieces. It’s our personal message to one another, like a wink, because so few people know me that well.
I am using lidocaine patches all over my body to try and stifle some of the agony, when I am not actively taking Kratom to help with the rest. Yes, Kratom is something you’ve probably heard about either on the news or within the pain community. No, it isn’t addictive. Yes, it helps take the edge off. My doctor encouraged me using it because he’s disgusted that my primary care physician ignores my pain. I am contemplating recording this man talking over me whenever I bring up how much I am suffering. Note to self: New doctor, STAT!
I am both sleeping too much and sleeping too little due to chronic insomnia. My pain is worse at night, but if I didn’t sleep well or I moved around too much when I did sleep, I can’t function. By looking at me, no one would ever be able to tell, and that’s where doctors come in to play.
A friend once asked everyone in a group to share the, “Faces of Fibromyalgia”. I was going to, until I saw how truly unwell everyone in the group looked. Photo after photo. Granted, the age group was not even close to my bracket, so perhaps some of that had to do with the way I reacted to the photos. Images that haunt me all these years later. Even without makeup on, I looked like the picture of health, and I still do. People often ask what my secret is. Good genes, water, sunscreen, and having an anti-aging routine which started at age eleven. I actually went through my steps tonight and was mortified. Anyone who wants the steps and a list of products can ask for it; I’m not gatekeeping. Alas, I digress…
Those photos made me feel like this was the reason I wasn’t being taken seriously; I looked, and continue to look, too healthy for doctors and others, to see the struggle. They don’t listen to me because my face does not match what I am saying, and that’s all they’re interested in. Apparently I should crawl into their offices, drool on the floor, be half-dressed, and maybe they’d take me seriously for a moment. God forbid you mention pain and look healthy; it must mean you’re a drug-seeker. 🙄😡 If I was, I’m obviously terrible at it based on my current Kratom order. In fairness, I haven’t placed an order in four months and I was down to half of my supply, so I sort of ordered in a panic. The pain is that bad.
Since the start of Covid, whenever I run errands, I might tap on a bit of eyeshadow and a coat of mascara once I’ve finished applying skincare and sunscreen, but who the hell sees it behind a mask and sunglasses? No one, really. I’ve only seen a few doctors in person during the past two plus years. For some unknown reason, they all remark on how I look in their notes. It’s downright insulting for any doctor to be judging your health based on your appearance. The fact that my headache specialist takes time out of her busy day to comment on how great I look as a patient (A note which goes into my permanent medical record and to my insurance company!), disturbs the fuck out of me. I’m not there for a critique on my looks or speech patterns; I am there for treatment. And every time I’m there, I come away with a lecture of some sort. 🙄 Again, not what I went in for. The last couple of times she was running late, still hasn’t figured out that my name isn’t Stephanie (Or the laundry list of names she goes through before sort-of getting part of my name right. Honestly, she’s looking right at me and I wait until she gets close. Lisa and Elizabeth are NOT the same thing. She’s kind of stuck these days on calling me Mary something, Trust me, I don’t look like a Mary!), and I walk in pissed. If you’re waiting for about two hours on a bad day, you have every right to be annoyed. Each time she’d say, “Oh, I can tell you have a migraine.” Only once did I actually have one worth discussing. More often than not, I leave her office with one. There’s too much stress involved, and I recently told a nurse off for screaming in the office. The first time, I thought maybe she was ill, but I’ve had listen to her do this to others for a year, now. She screams out highly personal information, yells out at people from behind the plexiglass, etc. She called my name and I was about a foot away. I looked at her and said, “I’m standing right here. You do NOT have to yell at me.” For me, that was borderline kind. Her response? “I’m sorry, I didn’t know I was yelling.” Well, you work in a doctor’s office and someone should check your fucking hearing! I’m pretty sure that’s what will come out of my mouth the next time she does it, because she’s a repeat offender and one of the rudest, most judgmental nurses they’ve got.
I had agreed to nerve blocks last year, desperate for some relief, and this last time, I had a vicious reaction to the depo-medrol my doctor forgot to mention was in my injections. I’m not kidding, either. She never even handed me paperwork to describe what I was going through; the only thing I saw and signed was a document giving her permission to treat me and bill directly to my insurance. I asked what was in them at my first appointment, and she said, “Anesthesia. It should last 3-6 months.” I return to her in ten days. This time, I am passing on the nerve blocks completely. I clearly don’t handle steroids well, and as it’s leaving my system, I can tell it wasn’t actually helping a damn thing. It’ll be another appointment where she gets to remark on my looks. “Patient looks normal and healthy, but suffers from chronic, disabling migraines.” I am dead serious; all of her notes state this. The best part is when I read, “Patient is enjoying a reduction in pain.” I am? Is she kidding?! Which “patient” is she talking about? I have to say, it isn’t me. If you read enough of this crap, you stop believing in doctors and their level of honesty.
Even my psychiatrist, who I do video appointments with a few times a month, has to remark on whether or not “the patient” looked normal today. What the hell does that even mean? I’m pretty sure the first time he saw me with no makeup, glasses, and my first breakout in a few years, it was noteworthy. 🙄 I have access to those notes, but have refrained from looking at them because he does take me seriously, but sometimes, when I am feeling as I do now, he looks for ways to push me in a different direction. It’s an unsubtle distraction technique which annoys me, but it’s not any different than taking medication, which can also temporarily distract the mind. At least the medication is a little more straight-forward.
Depression does not discriminate. It can hit anyone, for any reason, at any given moment. It can take you from the highest of highs to twelve feet beneath the surface. That’s kind of where I stay. I’m not on the surface, but I know I am sinking. Throw anxiety on top of that, along with complex trauma, and you have a recipe for disaster. Especially as my anxiety medication is beginning to fail completely. I could take double my daily dosage and still end up hyperventilating. Most people wouldn’t be able to handle the dose I am on, but I hesitate to bring up going off of it and onto something shorter acting. Despite the fact that long-term use of this medication has affected my health to a really bad level. Alas, it’s not visible. I see it. I know the damage is done, I feel it, and I also know I was never warned that any of these long-term side effects were possible. Unlike my doctors, I actually remember what gets said and by whom.
The flipside for my life has always been my writing. Having talent and creativity. Having business sense. The downside is that when I feel like this, I either don’t write, or I am way too honest. I have over two hundred drafts, which is the very definition of “too honest”. There are some things which I openly admit are too personal to share. As things stand, I will be changing the format of how I write and what I say, and I hate knowing that certain things have to change, but change they must. People think blogs and websites are online diaries. If you heard half the things I think, you’d run to the opposite side of the globe. Be glad I sort of employ a filter here. Most of the time, any way.
The other night, due to insomnia, I opened up a fiction file for the first time in months. I’m happy to say I was able to get a few thousand words written. That was the breakthrough; progress through pain, through madness, through the thinnest shred of sanity. I can still do amazing things with the written word. I should be proud of that, but I’m not. Because the pain truly is breaking me down to nothingness.
People don’t always talk about how lonely this journey is. Sometimes I am relieved to live in a place where no one knows me, and other times, it’s so isolating I want to walk into the woods and scream until I have no voice left. Depression, trauma, anxiety, and multiple forms of chronic pain which are incurable.
The other day I realized I am only speaking to four people with any kind of regularity, aside from my doctor. I am grateful for their e-mails, texts, and phone calls. I am grateful for them sticking by me. My best friends have legitimately grown up with me, despite the fact that our relationships are long-distance. We’ve been through so much together. Visits are few, but far between, but they are always on the other end of the line to listen, to share, to talk, and to be real, and the same is true for me. They have been immensely supportive through these past few months where I’ve been made to question who I am, only to be told, “You’re honest, you’re loyal, you’re real, and you’re a fucking bad ass. Anyone who says or thinks differently does not know YOU. The real you. Maybe they don’t deserve to know you at all if they dare question it.”
When you’re sharing something difficult, and emotions are involved, and someone actually steps up and says, “This is NOT your fault and you should not be blamed. This is an awful thing, but it’s no one’s fault. There should be no pointing fingers at all. Remember who you are, and what a fighter you are deep down. You don’t back down, you step up.” Another part of the breakthrough is hearing about who you are through the eyes of those who love you.
So now, my groceries are all put away. My poor Bombay growled like a pit bull at the lovely husband & wife delivery team who I am grateful for. Tomorrow, depending on how I feel, I will whip up a big batch of tabouleh (A key “soul food”, at times.), and try to write a few notes to friends and family. I’m also contemplating a big batch of homemade ice cream, so maybe I can accomplish that this week, as well, even though I have to get five missing ingredients. I pray everything is still available. I only make this once a year and I haven’t done it since 2019, so I would like to see the achievement.
If you don’t see me writing for a while, I might be working on fiction for a bit. Or, I’m going through the motions of life and trying to keep the madness at bay. Who knows. Take care of yourselves, stay safe, and I’ll see you next time.
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