…now you don't.
I feel like I'm losing my mind. There's no other way to describe it as accurately and succinctly.
April was a hard month. Lots of pain that just wouldn't be budged, increased sleep walking, further weakness and increased discouragement and depression… and all that after getting my wisdom teeth out the month before. I cannot pinpoint a specific time that things turned for the worse, but that's always the case isn't it?
Nothing, though, nothing could have prepared me for the experience of this past week. I have trouble when I'm particularly weary with full body muscle spasms that jerk me around like I'm having a seizure, and I also have a tendency to fall into a half-sleep that's deep enough to dream a little but not awake enough to know that the situations are fictitious. I end up with these conversations I've had with other people, but they turn out to be one-sided. It's quite embarrassing, actually.
This week, I've had a lot of fantasy conversations, but more than that… I've begun hallucinating again. Auditory hallucinations are commonplace for me, and have been my whole life. I tend to hear music playing that no one else can hear but me, wherever I'm at. Visual hallucinations started as a child as well, because I remember distinctly having to take naps in my step-grandparent's spare bedroom on Sabbath afternoons, but I hated nap time so much because I was at least 6 or 7 and I wanted to be up and reading or something! The walls were covered with portraits of family members throughout the years, as bunches or singles. As I lay there in the afternoon half-light that filtered through the drawn curtains, I had nothing to do but stare at the photos and watch as they talked to one another. Their lips would move, heads turning, facial expressions would change; full blown conversations were going on, but I didn't know to read lips so I couldn't follow along. There was no way I could tell anyone about that, ever, because I knew that it would sound super crazy and the line of success/dysfunction that my family crept along was tenuous, at best. I didn't want to be made fun of or told that I was crazy, so I kept it to myself. I finally told my psychiatrist this past year, though.
And now we come to my current dysfunctions, the ones that are giving me so much trouble and leaving me questioning my own senses. In truth, the problems are much the same, but now they're the adult version, having apparently grown up alongside me.
One of the big problems with my diseases is the fatigue. Sometimes I deal with insomnia, but more often than not I sleep more than the average person is supposed to need to. When my mind is fuzzy with fatigue it is much easier to space out, but when I come to I remember snippets and snatches of conversations… or thought sequences… or were they dreams? Yeah. Dreams. That's gotta be it. And so it goes.
What will happen is that if a friend says something, I will formulate a response in my head, and then they'll answer, and I build the experience on the back and forth that comes next. Only… lately, I've been actually hearing what before used to be just thoughts in my head. And when that conversation is playing in my head (the one that stopped being relevant about 20 seconds prior) I join in with my retorts and comments, of course! To the other person, it seems as though I'm just spouting gibberish and nonsense, which, to be fair, is the truth when you can't hear the other side of the conversation. For instance: Drogo was playing a computer game he purchased through Steam called Elite: Dangerous. It's about space, but it's really well done and I love watching him play it. Yesterday, however, while I was watching him attack another ship in the particular solar system he was occupying, I noticed that there was some kind of theme music that seemed to "caption" each shot he laid on the other ship with a funny taunt laid out to a simple tune. (I don't remember any of this, just a few moments here and there.) I laughed at the awesome lyrics and said something about how I loved the captions to his shots, and he looked at me very strangely. I was like, "There is a song playing right now that emphasizes the shots your getting off… right?" Well, no. No there wasn't. And throughout this past week I have been hearing more and more things that aren't there.
I'll hear Corey say something and without really processing it my brain will formulate a response that just tumbles on out… and makes, like, zero sense. It's a lot like playing "Telephone", except that the other person has no idea that they're playing or indeed what they said in the first place! Often I'll jerk myself awake out of a doze because my body is trying to physically imitate what my shallow dream has me doing, like eating ice cream maybe, or handing a stack of paper to someone, petting the cat, whatever. The physical action has loud noises or words that accompany it, and the combo of those will jerk me awake so that I can try to play it off as myself coughing or rolling over or something hide, but a split second later and I'll be off chasing the White Rabbit again. Even if I'm awake, I can find myself grabbing for whatever is bothering me without realizing I've even done it yet, or suddenly breathing hard and blinking rapidly to jerk myself out of doze mode and back to the present.
The visual hallucinations, well, it's that moving picture thing again for certain. There are no portraits on the walls of my home, but there are plenty of other things to distract my eye. Generally, it is the movement of stationary things, like shadows scooting across the floor or at the outsides of my vision, sometimes right in front of me; spots of dirt or some-such, even the natural patterns in the walls or tile take on movement and writhe like small insects. There doesn't even have to be a pattern to it when all of a sudden a dark blot of movement streaks by your thigh, and by the time you look over it's already long gone. Or how about seeing the blankets themselves move of their own volition right at the back corner of your vision, only to find them stationary when you whirl to look. Let me tell you, it is freaky when all of a sudden you think you're surrounded by bugs! Ticks and ants and other creepy crawly things! Aaaaugh! I'm always relieved to see the truth of that one. Another common one is thinking that I see one of the cats walk past and then be obscured by the table, but when I go to look at that corner there, it's empty. No cat there. Gahhh. Y'know, maybe I'm not crazy. Maybe my cats are just ninjas!!! Occam's Razor. Yep. That's got to be the answer, then. :P
Yesterday was bad. Like, bad bad. I was very actively hallucinating, more than I ever have before, visually, audibly, and with sensation on my skin as well. That one is common, but it never ceases to be startling when you suddenly feel drops of scalding water or ice water flick against your skin for no reason, or when you are positive that there is a bug crawling on your arm/leg/toe/face/etc. I am definitely going to be bringing this up to my psychiatrist tomorrow, but there are some other physical symptoms that I feel are connected somehow and are giving me just as much trouble as the hallucinations but are more alarming. My eyes… for some reason, they'll just stop focusing, and everything gets blurry, especially anything from the end of arm's length toward me. Can't read, can't write, can't tell which pill bottle is which sometimes… It's terrifying. Each time I wonder if that will be the time it lasts, that my vision won't revert. I don't know what to make of it at all. Frequently I will be struck with what I have dubbed "eye seizures", which is where my eyes won't focus right, but they're still mostly in focus. My vision simply shakes from side to side and prevents me from latching on to a more distant focal point. Eye seizures are for further distance, and the unfocusable eyes are impossible for
The next problem I'm having is that my legs will just collapse beneath me. As I mentioned before, I do sleepwalk, more and more intensely these days, and it has been while sleepwalking that I've noticed the most collapsing. More so this past week, however, Friday being the worst of it, I have a split second's warning that my legs are about to give way when I feel this pulsing throb of weakness that shoots through my entire being. As the spasm of weakness passes, my legs buckle after the apex and I must clutch something, anything to keep me upright. Even then it's not pleasant, for my heart is pounding, I feel weak and exhausted in every inch of me, and my chest is tight while my heart hammers away. Sometimes there's chest pain, sometimes no, but always it feels like a dark balloon expanding within my chest, and once it pops a thick, sludgy wave washes through me and pulls me to the floor. Dizziness explodes behind my eyes and the room swims around me in crooked, clumsy laps.
Even as I type, I am struggling with some of these things. The dizziness, the throb of weakness and pounding heart, the rapid drift back into dozing only to be woken up again and again. I snap awake, limbs shaking and heart pounding, eyes blinking rapidly and looking around for context clues as to where I am. My lungs pull in the sharp, short breaths of one who has forgotten to breathe just a bit too long. My head jerks around, the ratchet movement keeping me awake for the moment, my outstretched hands moving likewise, rapid but aimless, as I find myself trying to grasp for a literal lifeline. The searing moment of clarity is driven into my skull like a railroad spike, but I know that all too soon I will be adrift upon the shallow, troubled waters of this unsatisfactory sleep.
Also, as a side note, I just want to mention that my mouth is all kinds of ulcerated and painful on the inside; sores on my tongue, roof of the mouth, cheeks; abrasions and tender and inflamed areas that leave me clenching my jaw in pain when anything other than water passes through my lips. My glands have been swollen for a week or more. I cannot feel much in the skin from my cheekbones down to my collarbones. It is cold, and it is numbed, though I know not how. My memory is absolutely shot. I lose track of sentences while I am speaking, fumbling to a stop because I'm not sure how I wanted to end it, much less what the idea I was trying to convey was. I finally got my first menstrual cycle since December, which had me freaking out and hoping I wasn't pregnant and that the tests I took weren't faulty. I think I really scared Corey yesterday with my inability to remain standing and the severity of my hallucinations. Sometimes I can play it off like I'm talking to the cats, but usually not so much.
Oh! I broke my phone last night. See, the twitches aren't just about my legs jerking around as if they'd been hit with the rubber reflex mallet. That's part of it, but another, much bigger problem is that I will be holding something normally, say a mug of tea or a bowl of cereal, but suddenly my entire arm with jerk wildly and I now have hot tea all down my front, or a puddle of cereal and milk in my lap. It sounds funny to read, I know, but in actual practice? It sucks. Do you have any idea how many times I had to start the washer recently?! Too many. Anyway, yesterday I picked up my phone from the couch, and bam! Arm and hand jerked, my (admittedly ghetto) phone flew to the tile flooring in a very direct manner, and it broke in half, exposing the guts. Later that night I figured it out (still not sure how, really), and while I'll need another phone, I still have this one… even if it is being held together with black electrician's tape ;)
So that, my friends, is what is going on with me right now. I don't know where the boundaries of reality and fantasy intersect anymore, and I genuinely feel like I might be losing my hold on reality. Seriously… how scary is that?! All I know is that I keep resurfacing, gasping for breath and shaking my head rapidly to clear it. It works for a few microts, but it's scary as hell because down, down, down I go as soon as I'm not actively forcing myself awake. Even so, there are times that doesn't work either. How can I trust anything anymore when I can no longer rely on my 5 senses to guide me? Funny how the brain is so powerful, but not powerful enough that it can escape when turned upon itself, eh?
I feel like I'm losing my mind. There's no other way to describe it as accurately and succinctly.
April was a hard month. Lots of pain that just wouldn't be budged, increased sleep walking, further weakness and increased discouragement and depression… and all that after getting my wisdom teeth out the month before. I cannot pinpoint a specific time that things turned for the worse, but that's always the case isn't it?
Nothing, though, nothing could have prepared me for the experience of this past week. I have trouble when I'm particularly weary with full body muscle spasms that jerk me around like I'm having a seizure, and I also have a tendency to fall into a half-sleep that's deep enough to dream a little but not awake enough to know that the situations are fictitious. I end up with these conversations I've had with other people, but they turn out to be one-sided. It's quite embarrassing, actually.
This week, I've had a lot of fantasy conversations, but more than that… I've begun hallucinating again. Auditory hallucinations are commonplace for me, and have been my whole life. I tend to hear music playing that no one else can hear but me, wherever I'm at. Visual hallucinations started as a child as well, because I remember distinctly having to take naps in my step-grandparent's spare bedroom on Sabbath afternoons, but I hated nap time so much because I was at least 6 or 7 and I wanted to be up and reading or something! The walls were covered with portraits of family members throughout the years, as bunches or singles. As I lay there in the afternoon half-light that filtered through the drawn curtains, I had nothing to do but stare at the photos and watch as they talked to one another. Their lips would move, heads turning, facial expressions would change; full blown conversations were going on, but I didn't know to read lips so I couldn't follow along. There was no way I could tell anyone about that, ever, because I knew that it would sound super crazy and the line of success/dysfunction that my family crept along was tenuous, at best. I didn't want to be made fun of or told that I was crazy, so I kept it to myself. I finally told my psychiatrist this past year, though.
And now we come to my current dysfunctions, the ones that are giving me so much trouble and leaving me questioning my own senses. In truth, the problems are much the same, but now they're the adult version, having apparently grown up alongside me.
One of the big problems with my diseases is the fatigue. Sometimes I deal with insomnia, but more often than not I sleep more than the average person is supposed to need to. When my mind is fuzzy with fatigue it is much easier to space out, but when I come to I remember snippets and snatches of conversations… or thought sequences… or were they dreams? Yeah. Dreams. That's gotta be it. And so it goes.
What will happen is that if a friend says something, I will formulate a response in my head, and then they'll answer, and I build the experience on the back and forth that comes next. Only… lately, I've been actually hearing what before used to be just thoughts in my head. And when that conversation is playing in my head (the one that stopped being relevant about 20 seconds prior) I join in with my retorts and comments, of course! To the other person, it seems as though I'm just spouting gibberish and nonsense, which, to be fair, is the truth when you can't hear the other side of the conversation. For instance: Drogo was playing a computer game he purchased through Steam called Elite: Dangerous. It's about space, but it's really well done and I love watching him play it. Yesterday, however, while I was watching him attack another ship in the particular solar system he was occupying, I noticed that there was some kind of theme music that seemed to "caption" each shot he laid on the other ship with a funny taunt laid out to a simple tune. (I don't remember any of this, just a few moments here and there.) I laughed at the awesome lyrics and said something about how I loved the captions to his shots, and he looked at me very strangely. I was like, "There is a song playing right now that emphasizes the shots your getting off… right?" Well, no. No there wasn't. And throughout this past week I have been hearing more and more things that aren't there.
I'll hear Corey say something and without really processing it my brain will formulate a response that just tumbles on out… and makes, like, zero sense. It's a lot like playing "Telephone", except that the other person has no idea that they're playing or indeed what they said in the first place! Often I'll jerk myself awake out of a doze because my body is trying to physically imitate what my shallow dream has me doing, like eating ice cream maybe, or handing a stack of paper to someone, petting the cat, whatever. The physical action has loud noises or words that accompany it, and the combo of those will jerk me awake so that I can try to play it off as myself coughing or rolling over or something hide, but a split second later and I'll be off chasing the White Rabbit again. Even if I'm awake, I can find myself grabbing for whatever is bothering me without realizing I've even done it yet, or suddenly breathing hard and blinking rapidly to jerk myself out of doze mode and back to the present.
The visual hallucinations, well, it's that moving picture thing again for certain. There are no portraits on the walls of my home, but there are plenty of other things to distract my eye. Generally, it is the movement of stationary things, like shadows scooting across the floor or at the outsides of my vision, sometimes right in front of me; spots of dirt or some-such, even the natural patterns in the walls or tile take on movement and writhe like small insects. There doesn't even have to be a pattern to it when all of a sudden a dark blot of movement streaks by your thigh, and by the time you look over it's already long gone. Or how about seeing the blankets themselves move of their own volition right at the back corner of your vision, only to find them stationary when you whirl to look. Let me tell you, it is freaky when all of a sudden you think you're surrounded by bugs! Ticks and ants and other creepy crawly things! Aaaaugh! I'm always relieved to see the truth of that one. Another common one is thinking that I see one of the cats walk past and then be obscured by the table, but when I go to look at that corner there, it's empty. No cat there. Gahhh. Y'know, maybe I'm not crazy. Maybe my cats are just ninjas!!! Occam's Razor. Yep. That's got to be the answer, then. :P
Yesterday was bad. Like, bad bad. I was very actively hallucinating, more than I ever have before, visually, audibly, and with sensation on my skin as well. That one is common, but it never ceases to be startling when you suddenly feel drops of scalding water or ice water flick against your skin for no reason, or when you are positive that there is a bug crawling on your arm/leg/toe/face/etc. I am definitely going to be bringing this up to my psychiatrist tomorrow, but there are some other physical symptoms that I feel are connected somehow and are giving me just as much trouble as the hallucinations but are more alarming. My eyes… for some reason, they'll just stop focusing, and everything gets blurry, especially anything from the end of arm's length toward me. Can't read, can't write, can't tell which pill bottle is which sometimes… It's terrifying. Each time I wonder if that will be the time it lasts, that my vision won't revert. I don't know what to make of it at all. Frequently I will be struck with what I have dubbed "eye seizures", which is where my eyes won't focus right, but they're still mostly in focus. My vision simply shakes from side to side and prevents me from latching on to a more distant focal point. Eye seizures are for further distance, and the unfocusable eyes are impossible for
The next problem I'm having is that my legs will just collapse beneath me. As I mentioned before, I do sleepwalk, more and more intensely these days, and it has been while sleepwalking that I've noticed the most collapsing. More so this past week, however, Friday being the worst of it, I have a split second's warning that my legs are about to give way when I feel this pulsing throb of weakness that shoots through my entire being. As the spasm of weakness passes, my legs buckle after the apex and I must clutch something, anything to keep me upright. Even then it's not pleasant, for my heart is pounding, I feel weak and exhausted in every inch of me, and my chest is tight while my heart hammers away. Sometimes there's chest pain, sometimes no, but always it feels like a dark balloon expanding within my chest, and once it pops a thick, sludgy wave washes through me and pulls me to the floor. Dizziness explodes behind my eyes and the room swims around me in crooked, clumsy laps.
Even as I type, I am struggling with some of these things. The dizziness, the throb of weakness and pounding heart, the rapid drift back into dozing only to be woken up again and again. I snap awake, limbs shaking and heart pounding, eyes blinking rapidly and looking around for context clues as to where I am. My lungs pull in the sharp, short breaths of one who has forgotten to breathe just a bit too long. My head jerks around, the ratchet movement keeping me awake for the moment, my outstretched hands moving likewise, rapid but aimless, as I find myself trying to grasp for a literal lifeline. The searing moment of clarity is driven into my skull like a railroad spike, but I know that all too soon I will be adrift upon the shallow, troubled waters of this unsatisfactory sleep.
Also, as a side note, I just want to mention that my mouth is all kinds of ulcerated and painful on the inside; sores on my tongue, roof of the mouth, cheeks; abrasions and tender and inflamed areas that leave me clenching my jaw in pain when anything other than water passes through my lips. My glands have been swollen for a week or more. I cannot feel much in the skin from my cheekbones down to my collarbones. It is cold, and it is numbed, though I know not how. My memory is absolutely shot. I lose track of sentences while I am speaking, fumbling to a stop because I'm not sure how I wanted to end it, much less what the idea I was trying to convey was. I finally got my first menstrual cycle since December, which had me freaking out and hoping I wasn't pregnant and that the tests I took weren't faulty. I think I really scared Corey yesterday with my inability to remain standing and the severity of my hallucinations. Sometimes I can play it off like I'm talking to the cats, but usually not so much.
Oh! I broke my phone last night. See, the twitches aren't just about my legs jerking around as if they'd been hit with the rubber reflex mallet. That's part of it, but another, much bigger problem is that I will be holding something normally, say a mug of tea or a bowl of cereal, but suddenly my entire arm with jerk wildly and I now have hot tea all down my front, or a puddle of cereal and milk in my lap. It sounds funny to read, I know, but in actual practice? It sucks. Do you have any idea how many times I had to start the washer recently?! Too many. Anyway, yesterday I picked up my phone from the couch, and bam! Arm and hand jerked, my (admittedly ghetto) phone flew to the tile flooring in a very direct manner, and it broke in half, exposing the guts. Later that night I figured it out (still not sure how, really), and while I'll need another phone, I still have this one… even if it is being held together with black electrician's tape ;)
So that, my friends, is what is going on with me right now. I don't know where the boundaries of reality and fantasy intersect anymore, and I genuinely feel like I might be losing my hold on reality. Seriously… how scary is that?! All I know is that I keep resurfacing, gasping for breath and shaking my head rapidly to clear it. It works for a few microts, but it's scary as hell because down, down, down I go as soon as I'm not actively forcing myself awake. Even so, there are times that doesn't work either. How can I trust anything anymore when I can no longer rely on my 5 senses to guide me? Funny how the brain is so powerful, but not powerful enough that it can escape when turned upon itself, eh?
Diane | May 8, 2015 at 5:05 PM
I came across your blog randomly (don't we always!?), and have to say you're a great writer with a gripping story. I didn't have time to read all in detail yet but skimmed a few entries. I didn't see yet if you know or have tried to find out the root cause of your health problems.
If not, have you considered mercury? Your problems are quite reminiscent of the types of stories I read as I research mercury. I have some problems I attribute to mercury but they aren't severe...but wow, some people are SOOOO sick from it.
For example, read some of the stories here:
http://mercurystories.com/stories/
If you are interested in more info, I can share some of my favorite sites for you to consider. I pray you will find some help and get better soon!!
Diane | May 8, 2015 at 5:06 PM
For example, here's one of my favorite sites and a really comprehensive list of possible symptoms...
http://www.thenaturalrecoveryplan.com/articles/symptoms-of-mercury-poisoning.html
Cassandra | May 8, 2015 at 6:00 PM
Thanks Diane. Good to hear from you, and I'm glad you enjoy what you're reading! Yes, I actually do know the root cause-- a rare connective tissue disease called Ehler's-Danlos Syndrome that affects how my body produces collagen; Hypermobility Syndrome that causes a lot of dislocations/subluxations/slippage and frequent little minor injuries that take a while to heal and add their cumulative pain; another set of endocrine and gastrointestinal/allergy problems that I've got fairly well managed, but still can cause me great grief if I'm not vigilant. I'll give the sites you shared a look, thought I'm certain that's not the issue. It is interesting how so many different things can be responsible for the same or similar symptoms, isn't it? Just goes to show that there is no "one size fits all" for health care or medical protocols. I look forward to hearing more from you in the future :)