“I’m sorry. Headaches aren't fun, are they?”

…My response? "YOU REALLY THINK I WOULD BE LETTING A “HEADACHE” KILL 9 DAYS OF MY LIFE, INCLUDING WORK AND TIME WITH MY KIDS??"

***

DISCLAIMER (and I don't just say this because the post is long): There are lots of curses and capitalized words. Continue at your own risk.

***

Some of you have asked how I am doing, and in an attempt to not use my eyes and brain too much, I haven’t answered. I'm sorry if that has worried or offended people. I'm just doing what I can do. So I figured I’d type this up, send it out collectively, and I won’t have to answer over and over again (with the exception that I miraculously get better and actually CAN type individual responses. In which case, I would gladly do so.)

WARNING: some of you (if not most) will find this offensive. If you’re one of those people, then stop reading and don’t blame me for writing something that offends you.

Because, truthfully and to the core, I don’t care. I can’t anymore. I don’t have the capacity to, physically or mentally (as we all know they go hand in hand). I also don’t need hate from you, so don’t think it’s your job to help me “see the light.” I have enough self-hate as it is, and I definitely don’t need you to add to it. Like I said: it's not your job to redeem people from all the things they’re doing wrong or don’t agree on. Sometimes…just listen. Maybe, try taking what someone says as legitimate and genuine.

Okay?

I have to get out my frustration. Right now I can’t talk. I can’t look at a screen for longer than a few seconds at a time (which means this is going to take me forever to type and edit), and I lack every single capability to use my brain for normal, functioning things. Even typing a 140-character tweet takes me a whole minute if I try grammar/spell-checking it in my current state. But this all has to be said, even if it takes me >2 hours to do it.

WARNING #2: some of you will not just find offense to my “horrible” attitude, but some of you will even think I’m seeking attention or complaining beyond what it necessary.

My response to that: fuck you.

Offended yet?

Maybe someday, when I’m myself again, I will regret writing this. But I don’t think so. Because I can honestly say I have never, in all my life, written something more purely honest than this. No pretending I’m better or more positive than I really am.

THIS, right here, is honest. It’s the exact state of mind I’m in at this moment. And I’m not going to hide it, or apologize for it.

Plus, I warned you, and I meant it: those who would be offended by this or judgmentally-judgy-judgy (and I guarantee there are more of you than I’m probably even guessing at this point—by some of my “friends” on Facebook), please, please just stop reading this. There doesn’t need to be anymore fuel to your hate and condemnation.

What is this about? Anyone who's been keeping up even remotely on my health recently probably knows.

So what’s it about? I WANT TO DIE.

Worried yet, worried for my state of mind? Please don't be; it comes with the territory.

This isn’t an attempt for attention, a warning of suicide (because let me assure you, it’s not that at all…so please, don’t go calling someone or putting me on watch or anything like that—I mean that; please don’t make it about that, or about you), and especially not a cry for help (unless, of course, you’re offering to give me a miracle cure, or put me out of my misery yourself; then I’d welcome the help).

This is simply an attempt to get out my most deepest feelings of loneliness, frustration, and suffering. I've been told in the past that using the word "suffering" is dramatic. It's why I have a complex about it and don't use it lightly. But, really, what better word is there for what I'm going through? You don't believe me, just hear me out a bit. Maybe with this letting-out-of-emotion, I will stop being able to sob on the floor in desperation or anger to God.

So, again, how am I?

I can honestly say that I have never been this bad off, physically, in my entire life. Not after I had my three kids, not when I’ve had the worst flu, not after my major lumbar surgery last summer—not ever this bad. No matter the opposition (and complex caused by that opposition) that will always try to tell me otherwise, I’ve always known, at least in the back of my mind, that I am one of the stronger human beings. I can't pretend I'm not anymore; I won't. Because that is simply not true, and that belief has ruined so much of my conviction, confidence, and otherwise. It's a conditioning, yes; but I know that with practice and time (and more therapy than I've been able to afford, probably), I can overcome that damaging persona that was never really there--put in my head by "you." You who still believe I'm weak--I'm sorry, but that is your problem--your false outlook--and I don't need you in my life, or my head anymore. I have a high pain tolerance (I had two children naturally, without meds, because I chose to). But this has. Wiped Me. Left me feeling like the most worthless, weakest person alive.

Again, before you just think I’m being dramatic, please, for the love of God, have this health condition for two days, and I guarantee you will feel the same desperation and defeat.

Have this for 8-9 days, like I have, and you too will be BEGGING from the floor (because you can’t get up) for God to take your life—if he truly loves you. As irrational of a thought as that is.

***

(Random insertion of EXTREME frustration: I juts got carried away with said frustration, slammed the keys, and ended up losing paragraphs of this.)

***

Have this for 9 days, while living alone and having no one to help “take care” of you, or even be able to walk across the room to get you something you need, and you will be sure that it’s everything you’ve ever deserved in your life.

Have this for 9 days and have to go a whole week without being able to take care of your kids and actually be with them, and you will wonder WHAT you ever did to deserve this Hell, regardless of you thinking in your last thought that you deserve this.

Have this for 9 days and when someone does try to help you, having them interrogate you about how much alcohol and coffee you’ve had, because they are suspicious and SURE you’ve brought this on yourself (note: I haven’t had an alcoholic beverage in over two weeks; I haven’t had a single cup of coffee since two days before this came on. Not sure why I am mentioning this, because it truly doesn’t matter, and I know I don't have a problem (unless you're Mormon, then I have a problem; I guess old habits of a lifetime of self-blame don’t wear easily. And after all, this is a honest post).

Have this for 9 days and have to miss 5 days of work because you simply have no choice…when you have never been in more dire of a financial state in your life (not even able to get gas), and again, you’re wondering how the timing could get ANY worse. (Again, note: the one day—yesterday—I tried working, for 3 hours, I had to stop in tears because this thing is affecting my ability to concentrate as well, and I literally, for the life of me, was getting every client mixed up and messing up their reports. This hasn’t happened to me the whole 8 months I have been at my job; not even when I was new. I have NEVER been so out of it in my life; not even while drugged. On prescribed narcotics; calm down!)

Have this migraine-beyond-migraines for 9 days and have people, even medical professionals (all of whom, I’m convinced, have never had a real migraine in their lives), refer to this as a “headache,” and you will go ballistic. People—I’m telling you right now—there is QUITE a fucking difference between a migraine and a headache. You want to offend, hurt, or make someone feel like less of a human being? Claim to someone who is deeply suffering from a migraine that they just “have a headache,” and you’ve now won the Asshole award. My paramedic (whom my sister called when I was too prideful to call myself—I love you, Cindi), trying to be witty, cute, and funny: “Well, I’d say, judging by the heating pad on your pillow, you have what we call a headache. Am I right?” Me: “NO. It’s a migraine, ASSFUCKINGHAT.”*

*What I WISH I would have said.

On that same line, have this for 9 days, be in a medical facility twice in 3 days, have doctors not only refer to it over and over again as a headache, AND claim they see no other medical evidence that it’s nothing more than that, and therefore refusing to do real tests that might point to other things, while you KNOW something isn’t right in your body—far from normal for a migraine—and you might fucking go insane. MIGHT.

Have this MIGRAINE for 9 days, when people who claim themselves nature-paths or nutritionists talking “down” to you by suggesting things you—a sufferer of migraines—surely NEVER considered. “Oh, honey. You need more this and that in your diet.”

…DAMMIT, WHERE WERE YOU WHEN THIS CAME ON AT DAY ONE?! If only I would have thought of EVERY DAMN AT-HOME REMEDY EVERY MIGRAINE SITE HAS EVER MENTIONED on my own!!

Hate to break it to you, Savior-people, but anyone who suffers from migraines knows every natural and at-home remedy, and has, most likely, tried them. Also hate to break it to you with this, but if the ER’s special elixir of “migraine cocktail” won’t even help—if NOTHING can touch it, especially real medication prescribed FOR migraines, doesn’t help--it’s highly-fucking unlikely that a mineral or a cool pack on the neck will help. No, let me rephrase: It WON’T help. A headache, sure, possibly. But migraines are a chronic condition. Not some random headache. Someone who suffers from them would have had them time and time again, and they would have done their research. They would know what works and what doesn’t. Don’t—I repeat, DON’T—give out migraine advice if you’ve never experienced them yourself. Period. Instead, offer support. Help.

Lastly, on the 9 days thing, I know—to those who just don’t get it—that 8-9 days feels like little time, and very manageable. It’s a little over a week, for fuck’s sake.

But, let me tell you: even for me, who does occasionally suffer from migraines that, at the max, they've last only up to 4 days, 8-9 days is a large number. It’s a large number to be feeling such intense and unbearable pain in itself. But add that it’s not only long but at an intensity I’ve never felt before (I’d say I’m sure NO ONE has felt it at this intensity, and could believe it; but I’d never make that claim, because I’m not an asshole). This 8-9 days HAS. BEEN. AN. UTTERFUCKILICIOUS. NIGHTMARE. PERIOD. 

And…then add an ADDITIONAL PERIOD.

I guess that leads me to my closing comments—what it is, exactly, from which I’ve been suffering (maybe just for all you who have actually continued reading and need more convincing…or maybe I’m still judging myself too harshly and this convincing is just for myself). What I am experiencing:

  • Pain SO fucking intense, on my ENTIRE head (from forehead, eyes, behind the ears, back of the head, neck, and all the way down my spine) that I can’t get up. No, that’s not an exaggeration. Can’t get up is pretty accurate. It’s why I haven’t been able to work or take care of my kids. It’s why when they were here for two hours yesterday, I had to feel like the worst mom in the world, have them close my door while I lay in bed, and allow them to take care of themselves—AKA get into everything possible in my house. Because every. Single. Time I go from lying or sitting, to a standing position, I have to lean against a wall for at LEAST two minutes while the blood rushes to my head, makes it all pulsate (not just causing the sound of a swelling ocean, but making sound all together disappear and making me lose my hearing), making my body temperature rise about 20 degrees (maybe an exaggeration on that number) because of how hard I am FIGHTING to stay upright, and makes tears involuntarily spring to my eyes (but I have to be careful not to actually “cry” or “sob” though, since that movement and concentration would make me black out) while keeping every muscle in my face and body as lax as I can (which feels impossible, since I just want/need to scream until I die). Eventually, during a good moment, these episodes (did I mention it happens literally EVERY time I stand—even if I’ve been sitting for only 30 seconds and was standing before that?) last about only a minute. On days like today, it lasts over THREE minutes. When I do have to stand, to pee or whatever (which, quite honestly, hasn’t been happening much lately), I have to make sure to grab everything I may need in those next few hours or more and bring them back to my bed with me before I lie/sit back down and risk having to do that all over again too soon. Two nights ago, no matter how hard I tried, the pain won, and I blacked out, finding myself on the floor less than a minute later.
  • I can't move my head in any direction other straight ahead or slightly looking down, or make any sudden movements--even if it's to adjust a pillow under my neck, or to grab my meds off the nightstand. 
  • I am nauseated beyond belief. Which is why I have eaten nothing but small doses of applesauce and saltine crackers for the past 10 days (yes, this part of it began before the migraine pain even started). Because, guess what? Eat more than that (I have tried to force myself, trust me), and I’m puking up everything I just tried eating.
  • Dehydration. Bad. Even the one liter of fluid I got at the doctor, and the two liters I got at the ER two days later, didn’t fix that. Let’s just say peeing is few and far between. So when you say with an all-knowing smile on your face to “make sure you’re drinking enough fluids!” it, again, makes me want to flip you off. I’m doing. The. Best. I. Absolutely can. (Let’s just hope this actually helps me lose some weight—har har!)
  • Cloudy brain. And I mean CLOUDY. I never watch TV. Anyone who knows me knows that I simply can’t waste my time doing it. I have nothing against it—I wish I could. I’m just not one who can, knowing there are so many better things I could be doing with my time (football is an exception). Well, TV is all I’ve been able to use to help me pass the time lately. Without that background noise, and not being able to physically and mentally do ANYTHING else, I would die without some form of background noise. Family Guy. Simpsons. New Girl. Friends. You name it, it’s helped time pass that much less excruciatingly. Work, on the other hand…well, we talked about that. How I tried my damnedest to get three hours in, and failed miserably. Writing? No way brain function at that capacity would be possible right now. Like I said, brain clouds at the highest, most disorienting level I have ever had. Not even remembering simple words while explaining to my doctors what is happening.
  • Weak body, shaky muscles.
  • Unable to breathe.
  • Fever (in the most recent two days—ooh, look a NEW development in how my body is literally giving out on me!)
  • Not able to sleep. 8-9 days of nothing more than 20 mins here and 20 mins there. Two nights ago, I slept better than I had this whole time—a whopping 3 hours straight. Problem isn’t just the pain. It’s the inability to “sleep” in any position other than sitting straight up. Sometimes, if I’m lucky, I will be able to sleep for about 10 minutes on my left side. Why the side makes a difference, I don’t know. But never on my back, and never on my right side. Sitting straight up is all I have. Let me tell you (as I type with tears of utter misery and exhaustion), that it makes for excruciatingly long nights, and even longer 24-hours. I swear, these past 8-9 days has felt a month long.
  • NO sun. No light. The only time I’ve willingly stepped foot into the sun in the past 7 days is when I had to drive myself to the doctor (truly not sure how I did that, let alone survived; there is no way I could do that now), and when I had to have a friend take me to the ER two days later, followed by the store right after (because I was out of applesauce and saltines). Bless his heart for that. Otherwise, I can’t even look out the window when the sun is shining. Simply cannot.
  • I can’t do anything, really. I feel disabled (no cheap-shot on disabled people). It’s just the truth. There is no other way of saying that more accurately. I’d probably lie/sit here moaning at a constant rate if it didn’t hurt so much to do so.

There were two days I felt like I was having a breakthrough—two days I was convinced I had seen the worst if it and even told those I love that I thought I was now on the uphill. But then days like today happen. When I’ve taken five steps back and I wonder WHAT IN THE HELL I DID TO DESERVE THIS. Was everyone right, about how because I walked away from the Mormon church, I’m being punished—regardless of the fact that I am a better person now than I ever have been? Is it true that God really does go by what you preach from your mouth rather than the kind of person you are, and the kind of heart you have??

These are all things RAGING painfully in my mind, because as I’ve been sitting here twitching and bawling in misery and pain, I’ve been crying mercilessly to my Heavenly Father to please have pity on me. To please let me get back to my life with my beautiful children and to being able to hold a job so I can pay for simple things like toilet paper and gas. Begging. I know it’s possible. I’ve seen miracles before. So much that I even gave in to my ex-husband’s request to give me a blessing. I had faith. I had all the right things.

Yet I was worse the next day (today). So what does that mean? And please don’t tell me that it’s because the Lord will heal me in His own due time, when HE sees it’s right—when I’ve learned whatever it is I need to learn from this. Just spare me. I have heard these things my whole entire life—how we need to have faith anyway (on the rare off-chance our faith actually gets us what we need). How we are never supposed to question His motives. But right now, because I’m taking this opportunity to be honest in every way I can without calling people out by name, I can and will admit that I don’t get it. What’s the point of blessings when it’s completely hit and miss—in my experience, more miss than hit.

Don’t. Don’t judge. I have been more than faithful (religiously speaking) my entire life. Faith has always been one of my greatest strengths. I just have nothing left anymore. Maybe it’s a more realistic thinking. Or maybe I have just been pushed so far beyond what I am able, that I simply CAN’T view it that way anymore.

I know you all have good intentions, and people try helping in the ways they can. If you’ve made it this far in this post, then you have to know I mean it with all my heart, and that your “good intentions” ARE recognized. There just comes a point when good intentions, self-righteous attitude, judgment, preaching, and thinking you know more than a certain person about things or subjects, is not enough. I just need someone to care. That’s all. I need people to not turn a venting status on Facebook into their own debate and agenda. I said I fucking wanted to die. And it blew up. I guess this is where I FINALLY get through my thick head that people don’t always care about that, and that I simply shouldn’t let go of my feelings and frustration on social media, if I don’t want to be told WHAT to do, how to do it, what I’ve done wrong to get where I’m at, or that I’m just trying to get attention.

Cut that shit out, please. 

There are attention-seekers, and I am not one of them; never have been.

I just want to get better. That’s all. I DESPERATELY NEED to get better. And when did sharing that with friends who supposedly love you, and care about you, turn into an attention-getting scheme or a cry for being dramatic? I don’t have many people in my life I can count on anymore. To those of you I can, THANK YOU. It means everything to me. In the future I will keep my venting to you whom I mention, for the fear—No, knowledge, as has been proven time and time again—that anyone else will judge me or cringe when I am being “too open” with sensitive things on social media (which is a very common and wide-spread belief of anyone in my past life; though, really, I can’t understand why that is, and how anyone could be that insensitive as to believe that way. OH YEAH. I almost forgot that most religious--mainly LDS--people believe in suffering in silence). As though sharing your deepest feelings makes you a weak person.

Just a word of advice (now look, here I am trying to give advice to YOU; hypocrite much, Jen?): if you don’t understand what a person is dealing with or how bad it really is, don’t judge them by assuming you know. Care. Listen.

My next dilemma now is this: because I’m getting worse, what now? Is it normal for a migraine of this capacity to last this long (I’ve never heard of it myself)? Is there something more I should worry about, though I know I won’t get tested for anything else if I went back to the doctor (and let alone, can’t afford it)? I have truly never been so worried for my health and well-being before. Ever. Every day that goes on like this, I feel my body giving out in more ways. And THAT is no exaggeration. It’s happening. Right now, my mind is so bad off that I’m convinced I’m dying, or at least on my way there, since there’s no possible way I can get better with rest and nutrition, and that this is one big cycle that will kill me. I mean it when I say I have nothing left in me to go on.

^^^Those. Those are questions I want info and answers to (if it's normal for a migraine at this intensity and magnitude to last this long, etc.), if you have them. Because none of the doctors, nurses, and hospital staff had answers. This is something where someone's personal experience would come in handy.

So while I would never end my own life, I do, in all honesty, which an intruder would come in my home and end me right now. Not even the motivation of being my kids’ mother is taking that dire desperation away. And that is truly a first in my life. Because I’d make a better mother as a ghost than I would being “alive” right now.

I wish a healthcare professional would listen to me when I say I. Don’t. Feel. Right. That this is not just a “headache.” Tell me this is a normal extreme and length of time to be experiencing this, and I will continue to ride it out. Not happily, but I will.

Now, since four hours have passed since I wrote bits and pieces of this, and edited it once, I'm going to go pass out. I guess I should say veg out, since passing out isn't an option.

Oh, and stay tuned, sometime later next week (or sooner), for the post that will explain why HEMLOCK VEILS, and my career, are being killed.

Comments

AK McKinnon said…
Hi Jennie. We've never met, but we follow each other on Twitter and I adored Hemlock Veils. I'm not totally up-to-date on your health, but I read this post and my heart breaks for you.

Couple things. I've worked in health care for almost 15 years as a coder. I spent 2 years coding for a neurology clinic where they treated patients with migraines. I also suffer from migraines, though not nearly as severe as you. And I do not believe that an 8-9 day migraine is normal or okay. I'm not sure what testing you may have had, but if you've never seen a neurologist, I would ask your doctor to please give you a referral to one, preferably one who specializes in migraines. If your doctor won't do it, I would try calling your doctor in Arizona and see if you can explain the situation and ask them to refer you. There are some daily prescription meds that can prevent migraines, and also a neurologist might be more willing to help with the cannabis option especially since you know it helps. With the fever and the dehydration and the fatigue I think it's very important that you have a work up that at least includes an MRI. The ER folks should have done this for you, but they aren't all heroes, unfortunately. The only other thing I might recommend is Benadryl. It won't touch the pain, but it might help you at least get some sleep. Of course it might also make you super groggy, but it's the only thing I can think of that might help that I don't know if you've tried.

Last thing. I resigned from the LDS church when I was 20. I understand the guilt trips and the disappointed, pitying looks. It used to enrage me, but after several years I'm indifferent to their condescending behaviors and judgment because I realize they don't care about *me* they care about the sanctity of their club. Anyway, I wish I had some actual comforting advice for you, but all I can say is, it gets better. You're not alone. And honestly, *they* are the weird ones.

I'm rooting for you!
I'm really bad at keeping up on my friends' blogs, and I've been especially absent from the internet lately, so I just saw this post. I'm hoping that you are feeling better these days, but since I don't see an update here to say that the migraines have passed, I wanted to send some hugs and love your way. (And if they have passed, then I'm sending you some hugs and love anyway.)

I hope you've found doctors who listen to you, but if you haven't yet, please don't give up. It took me years to find the right doctors, and even after I finally found one who would listen, I had to start the process again every time we moved (military). Constant, chronic pain that just gets worse every day with no relief is exhausting. And the worst part is when people dismiss your pain. (I can't count the number of times when I've been accused of inventing the pain for attention ... or the times I've had to fight the doctors who insist I must be suffering from depression because I keep crying every time I go into the office and they accuse me of imagining the pain.)

Before they finally found my brain tumor, I had a migraine that lasted for so many years without relief that I finally adjusted to being in constant pain ... and I didn't even realize how much pain I was in until my mom (who also suffered nearly-constant migraines) pointed out that I had reached a point where I was literally missing out on life because I was in too much pain to do anything I used to enjoy. That's when I started going to the doctor for tests, but it was still years before they found anything.

No, I'm not saying you have a brain tumor. (My mom doesn't have one, and she gets frequent, debilitating migraines as well.) But I am saying that I care about you, and I'm here if you want a shoulder to cry on. And I'm encouraging you not to give up. Keep talking until you make someone listen and until you find an answer. <3

(P.S. As you know, I'm LDS. And I love you.)

P.P.S. Your comment form made me check a box to prove I'm not a robot. But I'm highly-intelligent. I know that checking the box doesn't really "prove" anything about my robot status. ;)

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