Hello Virtual People.
Hope you're not minding the sudden influx of posts! I spent the weekend being utterly and completely useless. Seriously. I don't know what came over me, but for days now, I've been waking up either insanely, sinfully late, or waking up, lying around, and being overcome by a delicious sleepiness I couldn't and didn't want to resist. And then, on waking up, I've just been either reading like crazy, or online, indulging my librarian's heart to it's content, Googling whatever my heart desired for hours on end. (Well, partially because my attention span has been so extremely unfocused that I'd end up forgetting what I was going to do, and either end up back on Facebook, or switching tabs for a new topic before I could forget it, resulting in tons of tabs that had to be read and closed, a typical problem of mine, I always have at least 10 tabs open. I'm like that Johnny 5 robot from those Short Circuit movies in the 80s! INPUT! INPUT!) Sometimes I wonder if the Internet isn't responsible for my brain fog, and not my illnesses. When I was a kid, I used to actually make lists of stuff to look up next time I made it to the library! Such a nerd, I know! And I did get sick right after the Internet took off, in about 2002...Maybe I just filled my darn brain with too much input and it's short circuiting? lol. (Is it appropriate to say "lol" in blogs? Oh well, I just did!)
Part of my research did include whether I could be experiencing symptoms of some type of mania, too, cuz it was kinda crazy how much time I spent online for a couple of days there...and the not being able to focus was upsetting me a bit. But no, seems like it was harmless. So I spent the entire weekend being self-indulgent, not trying or caring if anything useful got done. Not usually an easy task for me. It was rather odd, really, I didn't feel the slightest bit depressed. I ate only when necessary, to the point where I lost a couple pounds over the weekend. (I didn't like, starve myself or anything, but I didn't feel the need to stuff my face to ease my anxiety and unhappiness.) And I felt okay.
Today however, a whole other story. My last dream before waking was of being with my parents and the SSA judge, on a walk around a neighborhood, where I eventually realized he was testing me, and even though I was tired and dying to sit I suddenly felt extremely self-conscious and afraid he'd think I was faking it. Ugh.
Worse, I found out I didn't get some money I was expecting this morning, which I needed for my main plan of the day, calling all the doctor's names my lawyer gave me last week who wanted to charge for my patient files and if I couldn't convince them to send them for free, pay them and get it over with. Even if it leaves me with no money for the month, I need those files. Before next week. Yup, T-minus 8 days and counting till my hearing. That deflated me a bit, not good with my already non-existent motivation (it didn't magically come back today, even though I'd told myself today was back to business) and instead of figuring out what do next, and even then, all I felt was panic, PANIC!!!!!!
8 Days left. Don't have all my files. 8 days left. Don't have my reports from the doctors I wanted them from. 8 Days left. No cashflow. No money for files. Or prescription refills. Or supplements I'm direly needing. (The immune supplement I was taking was AMAZING, HUGE difference since I ran out, took a couple of weeks, but my viral infections are raging.)
Oh well. Writing this has been therapeutic. I think I may be calm enough to go light my Crystal Reiki abundance and money candles (weirdly, I chose them by the smell. They didn't have one I wanted, and the other one didn't invoke anything upon smelling, whereas it had been really calming before, so without knowing which they were, I ended up choosing Money and Abundance, which I take as a GOOD sign.) and I will meditate a bit, maybe try some Reiki, go for a walk in the beautiful sunny, breezy weather to further ground myself and absorb some positive and grounding energy. Then onto plan B. And C if need be. (B being calling the doctor's offices and attempting to sweet talk them even though I feel like a total loser because some of them I owe money to, and others I feel like I've been a total pain in the butt to, because they've had to fill out SO many forms for me; Prescription Assistance program forms so I can get my $500-a-pop-no-generic-available meds, disability forms for social services, or discounts on utilities...all the while some of them charging me deeply discounted office fees...so tired of feeling like a beggar.)
Please everyone, keep me in your hearts and minds with the intention that next week goes well. (I'll even take prayers!) I need this so badly, I need to move on with my life, find a way to get better or to move forward somehow.I need a break from jumping through hoops, lack of security, stress, chaos, pain, and most of all I need a chance at happiness...
Showing posts with label cognitive dysfunction. Show all posts
Showing posts with label cognitive dysfunction. Show all posts
Monday, May 2, 2011
Friday, April 22, 2011
Just another day...
Well. Isn't it funny, how when you WANT to sleep in, and CAN, you end up waking up early? I was stubborn, went back to sleep after a couple of hours, because I actually did feel really sleepy. And then when I woke up again, it was awful. I felt like I couldn't move, and it took me awhile to realize that it wasn't that I couldn't move, it was that it hurt to move.
My morning stiffness had gotten better for quite awhile, but lately it's back and with a vengeance. If I'm lucky it's limited to my fingers feeling like someone turned them into overstuffed sausages, but I've occasionally again been greeted by the feeling when I get up that my feet have been smashed to bits and may not hold me long enough to get to...wherever it is I'm headed! But today, it was every bit of me, from the fingers, to the point where my hips and spine meet, my knees, elbows, all felt like I was about 120 years old. I'm talking excruciating pain to move, like a rusted tin woman, which is why before I was fully conscious, since my mind couldn't register more than move=not a good idea, I thought I just couldn't move, but it was really some primitive instinct telling me I probably didn't want to, lol.
Fortunatley, once aware of this, I could move more slowly and carefully, and once the getting up was accomplished, I was okay, except for the sausage fingers, which lasted quite awhile longer. (Again, I think this was the case, I feel like I'm forgetting something else that hurt. See, this is why it's so hard to tell doctors just how bad I feel. In order to stay sane I happily forget any pain that isn't either excruciating, very consistent, or chronic for years.)
I don't know exactly what it is that's causing this to come back. That I quite taking my Inflatrol supplement (Ginger, Turmeric, Quercetin, Enzymes) because I ran out, or not taking Fish Oil anymore for a few months, or stopping the Immune Support supplement that was obviously helping my immune system function better. But anyhow. I still consider it a pretty darn good day. Not a ton of fatigue, after the sleepiness and proceeding nap. Not a ton of pain (though my wrists are nagging a bit at me while I type, that's almost not worthy of mention) feeling ok... Today the problem is mostly spiritual and mental.
Spiritual, because I spent most of the day feeling stifled, stuck inside, something I've been struggling with that I can't decide if to name depression, anxiety, uncenteredness, or just overwhelming isolation and stir-craziness. (Because certainly, being occupied and interacting with people makes it go away.)
Unfortunately, that part is mostly out of my control, and the mental, or rather cognitive part seems to be making getting occupied a problem, I think...I can't decide if my restless spirit won't let me focus, or if I'm restless because I can't focus. So frustrating, wanting to get something productive done, but being thwarted by either one. I'm leaning further towards my brain being the issue, because I've been having SUCH a hard time concentrating. Some work that should have taken me 3 hours or so took me more than double, that's how bad it was. Lots of walking around forgetting what I was doing, starting something new, forgetting that, remember two things ago, forget current, aahhh, just maddening. But the topper, was definitely when I went to meet a friend, knew that I'd opened the ravioli I was planning on having for dinner, but forgot about the water on the stove that I left ON, then proceeded to decide to have dinner out instead. I came home to the sound of a smoke alarm, then realized it was at MY home, not the neighbors, walked into a smokey, beeping condo which I almost burned down via Teflon pot. How's that for a good one? Oh well, I'd wanted to throw that thing out anyhow. Teflon is evil. If you don't believe the cancer reports about it, well here you have it, proof that it IS in fact evil: it tried to burn down my condo. ;)
My morning stiffness had gotten better for quite awhile, but lately it's back and with a vengeance. If I'm lucky it's limited to my fingers feeling like someone turned them into overstuffed sausages, but I've occasionally again been greeted by the feeling when I get up that my feet have been smashed to bits and may not hold me long enough to get to...wherever it is I'm headed! But today, it was every bit of me, from the fingers, to the point where my hips and spine meet, my knees, elbows, all felt like I was about 120 years old. I'm talking excruciating pain to move, like a rusted tin woman, which is why before I was fully conscious, since my mind couldn't register more than move=not a good idea, I thought I just couldn't move, but it was really some primitive instinct telling me I probably didn't want to, lol.
Fortunatley, once aware of this, I could move more slowly and carefully, and once the getting up was accomplished, I was okay, except for the sausage fingers, which lasted quite awhile longer. (Again, I think this was the case, I feel like I'm forgetting something else that hurt. See, this is why it's so hard to tell doctors just how bad I feel. In order to stay sane I happily forget any pain that isn't either excruciating, very consistent, or chronic for years.)
I don't know exactly what it is that's causing this to come back. That I quite taking my Inflatrol supplement (Ginger, Turmeric, Quercetin, Enzymes) because I ran out, or not taking Fish Oil anymore for a few months, or stopping the Immune Support supplement that was obviously helping my immune system function better. But anyhow. I still consider it a pretty darn good day. Not a ton of fatigue, after the sleepiness and proceeding nap. Not a ton of pain (though my wrists are nagging a bit at me while I type, that's almost not worthy of mention) feeling ok... Today the problem is mostly spiritual and mental.
Spiritual, because I spent most of the day feeling stifled, stuck inside, something I've been struggling with that I can't decide if to name depression, anxiety, uncenteredness, or just overwhelming isolation and stir-craziness. (Because certainly, being occupied and interacting with people makes it go away.)
Unfortunately, that part is mostly out of my control, and the mental, or rather cognitive part seems to be making getting occupied a problem, I think...I can't decide if my restless spirit won't let me focus, or if I'm restless because I can't focus. So frustrating, wanting to get something productive done, but being thwarted by either one. I'm leaning further towards my brain being the issue, because I've been having SUCH a hard time concentrating. Some work that should have taken me 3 hours or so took me more than double, that's how bad it was. Lots of walking around forgetting what I was doing, starting something new, forgetting that, remember two things ago, forget current, aahhh, just maddening. But the topper, was definitely when I went to meet a friend, knew that I'd opened the ravioli I was planning on having for dinner, but forgot about the water on the stove that I left ON, then proceeded to decide to have dinner out instead. I came home to the sound of a smoke alarm, then realized it was at MY home, not the neighbors, walked into a smokey, beeping condo which I almost burned down via Teflon pot. How's that for a good one? Oh well, I'd wanted to throw that thing out anyhow. Teflon is evil. If you don't believe the cancer reports about it, well here you have it, proof that it IS in fact evil: it tried to burn down my condo. ;)
Saturday, April 16, 2011
New Study Confirms Cognitive Dysfunction in CFS
Cognitive deficits in patients with chronic fatigue syndrome compared to those with major depressive disorder and healthy controls
TO summarize:
Results
Patients with CFS had slower phasic alertness, and also had impaired working, visual and verbal episodic memory compared to controls. They were, however, no more sensitive than the other groups to suggestibility or to fatigue induced during the cognitive session. Cognitive impairments in MDD patients were strongly associated with depression and subjective fatigue; in patients with CFS, there was a weaker correlation between cognition and depression (and no correlation with fatigue).
Conclusions
This study confirms the presence of an objective impairment in attention and memory in patients with CFS but with good mobilization of effort and without exaggerated suggestibility.
TO summarize:
Results
Patients with CFS had slower phasic alertness, and also had impaired working, visual and verbal episodic memory compared to controls. They were, however, no more sensitive than the other groups to suggestibility or to fatigue induced during the cognitive session. Cognitive impairments in MDD patients were strongly associated with depression and subjective fatigue; in patients with CFS, there was a weaker correlation between cognition and depression (and no correlation with fatigue).
Conclusions
This study confirms the presence of an objective impairment in attention and memory in patients with CFS but with good mobilization of effort and without exaggerated suggestibility.
Wednesday, September 15, 2010
Frustrated and tired, but hopeful
I've only been up a couple of hours, but my fingers & toes are icy, and my feet have been tingling like crazy. Soon, if I don't get off of this Desktop PC (laptop is unavailable to me at the moment) I'll probably get that creepy feeling like someone is pouring cold water down my scalp. Ickh.
I woke up too early (not as in, like 5 am, but rather early as in, I need 8-9 hours of sleep to be ok, and I got 5-6) for some reason my mind running off on a tangent of suddenly decided to analyze unprocessed information that led me to the conclusion that my Physical Therapist thinks I'm neurotic. I was too out of it to realize it yesterday, but after trying to explain/apologize to her about being late because my state of being suddenly took a nose-dive, I didn't feel like I could drive safely, and I had to persuade and wait for my Dad to get ready and bring me, she asked me if I was seeing a shrink!
"You know, that's known to be a component of that, so it helps". (!?!)
At the time I was taken off guard, happy just to have made it there for my last appointment, and instead of asking her to clarify whether she meant that depression usually becomes a factor in ALL chronic illnesses, or if she was under the mistaken impression that Fibromyalgia, Chronic Fatigue Syndrome, and POTS were all psychological in nature, I told her that the county health insurance "safety net" program I receive doesn't cover mental health. (!)
So annoyed with myself now. And a bit, with her. But more with myself because I could have educated her. Or because I had to? I don't know, lots of mixed feelings. I hate that people are so judgemental. They assume just because I'm capable of getting dressed and putting on makeup and smiling, that I must not be THAT sick?
But then, it's a crazy world, you really can't take people's word for anything these days, so you're almost forced to make a judgement on what evidence you can see...I know I used to, so I can relate. But it still sucks being me, having to cope with stuff like begging my Dad to drive me to an appointment at the last minute because I suddenly feel so exhausted and achy I can't think straight. (Seriously, last time I felt like that, I went anyways, ended up missing the freeway onramp, couldn't decide what detour to take to get back to it, and ended up having to pull over into a parking lot to try and decide what to do, which ended up being to NOT burst into tears of frustration at my lack of brain function and energy, be nice to myself, cancel the appointment, and go home to lie down and not demand anything of myself until I recovered.
Still it makes me so mad though, that Cognitive Dysfunction is SUCH a major symptom of these disorders and even healthcare practitioners know nothing about it.
I've had neurologists and psychiatrists tell me it's Depression, even though research clearly shows the central nervous system is affected, and umm, obviously in the case of POTS & Orthostatic Hypotension, if you're not getting enough blood to the head, that's not going to result in optimum brain function, now is it?
But so is the case with SO MANY of the symptoms of these diseases/illnesses/syndromes, whatever you want to call them. After almost 10 years of research I KNOW for a fact that it's not just me, most others with these illnesses have the same symptoms, what's more, they have been verified by actual, scientific testing...yet only a handful of doctors seem to know this.
(SPECT scans showing blood circulation and brain function for example, studies comparing and equating the Cognitive Dysfunction of CFS with that of Multple Scelerosis...)
But yeah, it's hard not to feel like a nut sometimes with these illnesses. They affect one in such dark insidious ways, affecting how you think, interact with people, socialize...I actually keep to myself these days, because I just don't have the brain power. Just trying to have a conversation with my Mother's neighbor while her kids are running around completely overwhelms me. (Doesn't help that she interrupts herself and me all throughout! lol!) It causes me to do stuff like forget to be polite (thanking someone for dinner & the like, stuff that was second nature to me before I got sick) failing to realize I might return a complement, or that I have spent the entire conversation talking about myself (or alternately not being able to hold onto a thought long enough while someone is talking to have anything to say by the time they're done!) sometimes makes me feel like there's not much of who I was left...but I still hold hope I will get better and then happily quit being auch a hermit and be able to properly interact with people again!
Well, I'm off. Have to go rest up to take my beloved 15-year old cat who can't seem to eat to the vet. Having my feet NOT going numb would help, as would not having to worry about whether I can hold onto her if my Orthostatic Hypotension acts up and I have to grab something in an effort to stay on my feet when I have one of my near-syncope spells...Fun times! Wish me luck!
I woke up too early (not as in, like 5 am, but rather early as in, I need 8-9 hours of sleep to be ok, and I got 5-6) for some reason my mind running off on a tangent of suddenly decided to analyze unprocessed information that led me to the conclusion that my Physical Therapist thinks I'm neurotic. I was too out of it to realize it yesterday, but after trying to explain/apologize to her about being late because my state of being suddenly took a nose-dive, I didn't feel like I could drive safely, and I had to persuade and wait for my Dad to get ready and bring me, she asked me if I was seeing a shrink!
"You know, that's known to be a component of that, so it helps". (!?!)
At the time I was taken off guard, happy just to have made it there for my last appointment, and instead of asking her to clarify whether she meant that depression usually becomes a factor in ALL chronic illnesses, or if she was under the mistaken impression that Fibromyalgia, Chronic Fatigue Syndrome, and POTS were all psychological in nature, I told her that the county health insurance "safety net" program I receive doesn't cover mental health. (!)
So annoyed with myself now. And a bit, with her. But more with myself because I could have educated her. Or because I had to? I don't know, lots of mixed feelings. I hate that people are so judgemental. They assume just because I'm capable of getting dressed and putting on makeup and smiling, that I must not be THAT sick?
But then, it's a crazy world, you really can't take people's word for anything these days, so you're almost forced to make a judgement on what evidence you can see...I know I used to, so I can relate. But it still sucks being me, having to cope with stuff like begging my Dad to drive me to an appointment at the last minute because I suddenly feel so exhausted and achy I can't think straight. (Seriously, last time I felt like that, I went anyways, ended up missing the freeway onramp, couldn't decide what detour to take to get back to it, and ended up having to pull over into a parking lot to try and decide what to do, which ended up being to NOT burst into tears of frustration at my lack of brain function and energy, be nice to myself, cancel the appointment, and go home to lie down and not demand anything of myself until I recovered.
Still it makes me so mad though, that Cognitive Dysfunction is SUCH a major symptom of these disorders and even healthcare practitioners know nothing about it.
I've had neurologists and psychiatrists tell me it's Depression, even though research clearly shows the central nervous system is affected, and umm, obviously in the case of POTS & Orthostatic Hypotension, if you're not getting enough blood to the head, that's not going to result in optimum brain function, now is it?
But so is the case with SO MANY of the symptoms of these diseases/illnesses/syndromes, whatever you want to call them. After almost 10 years of research I KNOW for a fact that it's not just me, most others with these illnesses have the same symptoms, what's more, they have been verified by actual, scientific testing...yet only a handful of doctors seem to know this.
(SPECT scans showing blood circulation and brain function for example, studies comparing and equating the Cognitive Dysfunction of CFS with that of Multple Scelerosis...)
But yeah, it's hard not to feel like a nut sometimes with these illnesses. They affect one in such dark insidious ways, affecting how you think, interact with people, socialize...I actually keep to myself these days, because I just don't have the brain power. Just trying to have a conversation with my Mother's neighbor while her kids are running around completely overwhelms me. (Doesn't help that she interrupts herself and me all throughout! lol!) It causes me to do stuff like forget to be polite (thanking someone for dinner & the like, stuff that was second nature to me before I got sick) failing to realize I might return a complement, or that I have spent the entire conversation talking about myself (or alternately not being able to hold onto a thought long enough while someone is talking to have anything to say by the time they're done!) sometimes makes me feel like there's not much of who I was left...but I still hold hope I will get better and then happily quit being auch a hermit and be able to properly interact with people again!
Well, I'm off. Have to go rest up to take my beloved 15-year old cat who can't seem to eat to the vet. Having my feet NOT going numb would help, as would not having to worry about whether I can hold onto her if my Orthostatic Hypotension acts up and I have to grab something in an effort to stay on my feet when I have one of my near-syncope spells...Fun times! Wish me luck!
Tuesday, December 22, 2009
A Better Day
Today actually went pretty well. I finally got a chance to practice pacing, and I think it was helpful.
I woke up, drank even more water than usual, and had some salt. I lucked out, in that the laptop was forgotten today, so I got to recline in bed while checking my e-mail (I think sitting up at my desktop pc to do that yesterday is what did me in, definitely what triggered the tachycardia, possibly along w/hormonal changes).
I expected total madness when I hit the stores, but lucked out; I decided ahead of time that I was going to get a gocart, since I had returns to do and that involved standing in line, which kills me. (I don't faint, but I feel really, really ill if I stand in lines for even a couple of minutes...my back gets really stiff as well, and hurts after just a few minutes.)
I lucked out though, no wait at Tar-jay, and I did do the gocart thing at WalMart, though I felt like a huge dork, all made up and healthy-looking, I got some stares, especially from peopole my age, and I could imagine what they were thinking, but I just smiled or looked away...and it worked, I got the stuff I'd been dreaded all taken care of and wasn't completely exhausted for a change; so nice!
I lucked out with parking, too, now that I think of it, it wasn't looking good, even the handicapped spaces were all taken at both stores, but I got great parking at both stores in the end...
I even made it to a 3rd store, and the doctor (though that was fruitless, as he wasn't there...) and was only worn out when I got home from carrying my bags and coats inside. I was planning on having a nice glass of wine, as a glass of beer had a great effect on me last week, but I ended up having to take a Neurontin for some excruciating cramping; even that worked out, it helped, and it didn't make me sleepy like I expected, perhaps just relaxed :)
I cooked up a quick egg dish for dinner, tidied up a tiny bit, and gave the cat a good, long overdue brushing, which finally did wear me out. It still seems ridiculous that such an easy task could wear me out...of course, I did have to do a little extra because of the allergies...brought the air filter in from the other room, and wore a mask (just the dander from petting her with my foot started my nasal passages swelling, soo...)
Ah, this all sounds so silly even to me, so mundane, but I'm so grateful. OH!
And I did realize a cool thing today, my brain fog is SO much better. It's like someone removed the cotton candy that was clogging it all up and everything runs smoothly...I'm not running around with my forehead wrinkled constantly trying to hang onto every thought lest it disappear before I was done with it. It was so incredibly exhausting! I don't know if it's a result of my social isolation, forced rest, Oxymatrine/immune modulators, or what, but I am so grateful.
I hadn't realized how much better it had gotten until I had a bad fog day a few weeks back and I just wanted to cry...it was so stressful, and every little darn thing was so difficult because I kept forgetting what I was doing, where I was going, what I needed to do or take to get there...and then it hit me that it used to be like that ALL the time, and I don't know how I lived like that...
I watched an episode of a TV show called "Fringe" last night; it's a Sci-Fi show, and this man who'd been in a mental hospital suddenly "went sane" after having something surgically removed from his brain, and he was describing how it felt, and he said, "It was just like ah, suddenly...Free..."
That's what it's like without the awful cognitive dysfunction, I can just think and do and function freely, without feeling like my brain is cramping up from the effort, everything's running smoothly instead of bumper to bumper traffic to hold onto and retrieve thoughts!
Yay :)
I woke up, drank even more water than usual, and had some salt. I lucked out, in that the laptop was forgotten today, so I got to recline in bed while checking my e-mail (I think sitting up at my desktop pc to do that yesterday is what did me in, definitely what triggered the tachycardia, possibly along w/hormonal changes).
I expected total madness when I hit the stores, but lucked out; I decided ahead of time that I was going to get a gocart, since I had returns to do and that involved standing in line, which kills me. (I don't faint, but I feel really, really ill if I stand in lines for even a couple of minutes...my back gets really stiff as well, and hurts after just a few minutes.)
I lucked out though, no wait at Tar-jay, and I did do the gocart thing at WalMart, though I felt like a huge dork, all made up and healthy-looking, I got some stares, especially from peopole my age, and I could imagine what they were thinking, but I just smiled or looked away...and it worked, I got the stuff I'd been dreaded all taken care of and wasn't completely exhausted for a change; so nice!
I lucked out with parking, too, now that I think of it, it wasn't looking good, even the handicapped spaces were all taken at both stores, but I got great parking at both stores in the end...
I even made it to a 3rd store, and the doctor (though that was fruitless, as he wasn't there...) and was only worn out when I got home from carrying my bags and coats inside. I was planning on having a nice glass of wine, as a glass of beer had a great effect on me last week, but I ended up having to take a Neurontin for some excruciating cramping; even that worked out, it helped, and it didn't make me sleepy like I expected, perhaps just relaxed :)
I cooked up a quick egg dish for dinner, tidied up a tiny bit, and gave the cat a good, long overdue brushing, which finally did wear me out. It still seems ridiculous that such an easy task could wear me out...of course, I did have to do a little extra because of the allergies...brought the air filter in from the other room, and wore a mask (just the dander from petting her with my foot started my nasal passages swelling, soo...)
Ah, this all sounds so silly even to me, so mundane, but I'm so grateful. OH!
And I did realize a cool thing today, my brain fog is SO much better. It's like someone removed the cotton candy that was clogging it all up and everything runs smoothly...I'm not running around with my forehead wrinkled constantly trying to hang onto every thought lest it disappear before I was done with it. It was so incredibly exhausting! I don't know if it's a result of my social isolation, forced rest, Oxymatrine/immune modulators, or what, but I am so grateful.
I hadn't realized how much better it had gotten until I had a bad fog day a few weeks back and I just wanted to cry...it was so stressful, and every little darn thing was so difficult because I kept forgetting what I was doing, where I was going, what I needed to do or take to get there...and then it hit me that it used to be like that ALL the time, and I don't know how I lived like that...
I watched an episode of a TV show called "Fringe" last night; it's a Sci-Fi show, and this man who'd been in a mental hospital suddenly "went sane" after having something surgically removed from his brain, and he was describing how it felt, and he said, "It was just like ah, suddenly...Free..."
That's what it's like without the awful cognitive dysfunction, I can just think and do and function freely, without feeling like my brain is cramping up from the effort, everything's running smoothly instead of bumper to bumper traffic to hold onto and retrieve thoughts!
Yay :)
Friday, September 11, 2009
Fun with weird symptoms...
Well, I guess they would actually fit into the broad spectrum of Dysautonomia. I haven't checked my blood pressure today, mostly because I didn't want to see how fast my heartrate was, but I'd be willing to bet it's pretty darn low, and dropping steadily the more I stay upright.
I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.
But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.
This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.
I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.
This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.
It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.
I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...
Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!
I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.
But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.
This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.
I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.
This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.
It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.
I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...
Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!
Saturday, November 22, 2008
I Need YOUR Help
The long & the short of it:
I need to have some fairly expensive testing done to help the government understand why I can't work. I'm on my last appeal for Disability Insurance, and I can't afford to have to apply again (I already have to wait another year or so to wait for this appeal to be decided) and wait another 1-3 years to see if they decide to grant me something I'd hoped to be able to count on if I absolutely needed it, which I do. My health has gotten worse struggling while I try and see if it goes through. My credit is wrecked, I'm swamped in debt (mostly medical) and it's just luck that I didn't end up homeless.
As I've mentioned before, one of my biggest problems at this point is the Cognitive Dysfunction. It's so bad, I don't even like talking on the phone much anymore, because if it's flaring up, which happens sometimes even on otherwise good days, but is even worse if I'm not feeling well or I'm tired, then I end up going blank, or not being able to think of words, or keep ideas in my head until someone is finished talking, and I'm afraid I'll sound like a total idiot. In person, it's easy to see when I'm thinking hard, or confused, but on the phone, it's just like, uhh, what's YOUR deal?
This was also my biggest challenge when I was still working. I can't multi-task well anymore, couldn't remember things I needed to memorize, or people's faces I didn't see regularly for long periods of time, no matter how important they were. And I used to be great at my jobs, great at multi-tasking, great at all the details. (Temp agencies used to love me, I'd just dive right in, and I worked great under pressure. Not anymore...) The hugest stress, in that last 7 month period I worked, was trying to hide my memory issues from my co-workers, patrons, bosses, and anyone else I dealt with. I felt like a fraud in a way...Not the person on my resume, that's for sure!
It finally dawned on my a few months ago, that if I want the Social Security Administration to believe this, since it's just becoming legitimately clear and scientifically confirmed what a big impact FM & CFS can have on Cognitive Function (See my posts earlier this month on the subject) and they need everything spelled out and scientifically backed up, that I needed to get some Neurocognitive Testing done. I found someone who would do it, and she seemed to be qualified, informed and very competent, as well as willing to work with me and my attorney. She also agreed that things seemed pretty serious. Only one problem: my insurance won't cover it, because apparently it's "Diagnostic Testing", and for that I would have to meet my $2,000 deductible first. Ha! Fat chance. I have $1500 to go, and it starts over at $0 in January!
But I just can't take the chance of not having that testing done. The more I've thought about it, the more I realize that it is vital. Though I have some proof now that I have pretty serious chronic Enteroviral infections, well, I actually had that proof at my last appeal, but even though the titers were high enough that if they had been Epstein Barr my application would've had to have been automatically approved by law, either my attorney didn't emphasize this, or it didn't matter to the judge. I'm seeing a very well known Infectious Disease specialist at the moment, so that might bring more weight to that, but I can't afford to take any chances.
Plus, it's getting so bad lately, many days my brain feels like a cramped-up pretzel from just trying to get through a routine day, (remembering why I walked into this room and why I grabbed my purse, and why my hand is in it, whether or not I took my medications, ugh! )and I'm a little afraid it might be causing damage. (I've read studies indicating this.) But I won't be able to get further testing, or find anyone to try and treat the problem unless I have real proof that something is wrong. (Despite the studies being done, doctors just aren't informed. The doctor who was going to do the tests thought it sounded more like I had Multiple Scelerosis...but the fact is, the Cognitive Dysfunction w/my conditions is just as bad, it's just not as well known.)
Anyhow the doctor who was going to do the tests wanted a $150 deposit, and it sounded like it was going to cost AT LEAST $500+ out of pocket...depending on the amount of time, even up past the $1,000 mark. (Her rate was $200-$300/hour I believe, and it was going to take a couple of days, sounded like 2-3 hours each.)
So, I decided to go ahead and start accepting donations towards getting that testing done. It's not going to happen by itself, and the last couple of years I've spent on the verge of homelessness, I didn't really get many offers of help, and the current solution is only temporary, so if I don't get my case approved this time around, who knows what will happen to me.
I'm tired of living on the edge of ruin, all the stress is making me sicker as the years go by, and try as I might, despite constant brainstorming, I can't find a way to make ends meet.
So if I can do anything to avoid that scenario, I will. If some chick can get $20,000+ to pay off purses and shoe purchases, maybe it's not so bad for me to ask for help too.
And maybe it will help people realize that though they may not be AIDS or Cancer, and while we may not be outright dying from them, FM and CFS are two VERY SERIOUS, life-changing, and potentially devestating illnesses, and the number of people trying to deal with them is continuing to grow. Yeah, they're not deadly (usually) but the thing is, you have to go on living...and if you can't work, what do you do? Cognitive Dysfunction aside, my health is still pretty unpredictable. I never know when the Autonomic Nervous System stuff will act up, when my feet will hurt too much to stand more than 10 minutes, or any of the many other symptoms will get to be too much to work through reliably.
So if you have any change to spare, and I mean it, every cent will count; please click on the Donate button on the right sidebar. In exchange, I promise to keep bringing you interesting posts about stuff that might help you and yours :)
A million thanks.
Fibrogrrl
I need to have some fairly expensive testing done to help the government understand why I can't work. I'm on my last appeal for Disability Insurance, and I can't afford to have to apply again (I already have to wait another year or so to wait for this appeal to be decided) and wait another 1-3 years to see if they decide to grant me something I'd hoped to be able to count on if I absolutely needed it, which I do. My health has gotten worse struggling while I try and see if it goes through. My credit is wrecked, I'm swamped in debt (mostly medical) and it's just luck that I didn't end up homeless.
As I've mentioned before, one of my biggest problems at this point is the Cognitive Dysfunction. It's so bad, I don't even like talking on the phone much anymore, because if it's flaring up, which happens sometimes even on otherwise good days, but is even worse if I'm not feeling well or I'm tired, then I end up going blank, or not being able to think of words, or keep ideas in my head until someone is finished talking, and I'm afraid I'll sound like a total idiot. In person, it's easy to see when I'm thinking hard, or confused, but on the phone, it's just like, uhh, what's YOUR deal?
This was also my biggest challenge when I was still working. I can't multi-task well anymore, couldn't remember things I needed to memorize, or people's faces I didn't see regularly for long periods of time, no matter how important they were. And I used to be great at my jobs, great at multi-tasking, great at all the details. (Temp agencies used to love me, I'd just dive right in, and I worked great under pressure. Not anymore...) The hugest stress, in that last 7 month period I worked, was trying to hide my memory issues from my co-workers, patrons, bosses, and anyone else I dealt with. I felt like a fraud in a way...Not the person on my resume, that's for sure!
It finally dawned on my a few months ago, that if I want the Social Security Administration to believe this, since it's just becoming legitimately clear and scientifically confirmed what a big impact FM & CFS can have on Cognitive Function (See my posts earlier this month on the subject) and they need everything spelled out and scientifically backed up, that I needed to get some Neurocognitive Testing done. I found someone who would do it, and she seemed to be qualified, informed and very competent, as well as willing to work with me and my attorney. She also agreed that things seemed pretty serious. Only one problem: my insurance won't cover it, because apparently it's "Diagnostic Testing", and for that I would have to meet my $2,000 deductible first. Ha! Fat chance. I have $1500 to go, and it starts over at $0 in January!
But I just can't take the chance of not having that testing done. The more I've thought about it, the more I realize that it is vital. Though I have some proof now that I have pretty serious chronic Enteroviral infections, well, I actually had that proof at my last appeal, but even though the titers were high enough that if they had been Epstein Barr my application would've had to have been automatically approved by law, either my attorney didn't emphasize this, or it didn't matter to the judge. I'm seeing a very well known Infectious Disease specialist at the moment, so that might bring more weight to that, but I can't afford to take any chances.
Plus, it's getting so bad lately, many days my brain feels like a cramped-up pretzel from just trying to get through a routine day, (remembering why I walked into this room and why I grabbed my purse, and why my hand is in it, whether or not I took my medications, ugh! )and I'm a little afraid it might be causing damage. (I've read studies indicating this.) But I won't be able to get further testing, or find anyone to try and treat the problem unless I have real proof that something is wrong. (Despite the studies being done, doctors just aren't informed. The doctor who was going to do the tests thought it sounded more like I had Multiple Scelerosis...but the fact is, the Cognitive Dysfunction w/my conditions is just as bad, it's just not as well known.)
Anyhow the doctor who was going to do the tests wanted a $150 deposit, and it sounded like it was going to cost AT LEAST $500+ out of pocket...depending on the amount of time, even up past the $1,000 mark. (Her rate was $200-$300/hour I believe, and it was going to take a couple of days, sounded like 2-3 hours each.)
So, I decided to go ahead and start accepting donations towards getting that testing done. It's not going to happen by itself, and the last couple of years I've spent on the verge of homelessness, I didn't really get many offers of help, and the current solution is only temporary, so if I don't get my case approved this time around, who knows what will happen to me.
I'm tired of living on the edge of ruin, all the stress is making me sicker as the years go by, and try as I might, despite constant brainstorming, I can't find a way to make ends meet.
So if I can do anything to avoid that scenario, I will. If some chick can get $20,000+ to pay off purses and shoe purchases, maybe it's not so bad for me to ask for help too.
And maybe it will help people realize that though they may not be AIDS or Cancer, and while we may not be outright dying from them, FM and CFS are two VERY SERIOUS, life-changing, and potentially devestating illnesses, and the number of people trying to deal with them is continuing to grow. Yeah, they're not deadly (usually) but the thing is, you have to go on living...and if you can't work, what do you do? Cognitive Dysfunction aside, my health is still pretty unpredictable. I never know when the Autonomic Nervous System stuff will act up, when my feet will hurt too much to stand more than 10 minutes, or any of the many other symptoms will get to be too much to work through reliably.
So if you have any change to spare, and I mean it, every cent will count; please click on the Donate button on the right sidebar. In exchange, I promise to keep bringing you interesting posts about stuff that might help you and yours :)
A million thanks.
Fibrogrrl
Sunday, November 9, 2008
Cognitive Dysfunction in FM/CFS and MS: Similarities
The "Fog" is driving me insane lately! My brain often feels like a pretzel, I feel soo socially clumsy and tactless, and I keep forgetting to do important things...I get overwhelmed, just trying to make a decision if I have too many options, or trying to overcome an obstacle. Sometimes just too many noises at once overhwhelm me (like trying to watch TV with the fan on, I get all stressed out.) I feel like I have ADD sometimes too, so hard to focus. It's really tough on the phone, too, because I zone out, or think too slow, take too long to respond, and people on the other end get confused, I get flustered, and...ARGH! Talking on the phone has become the bane of my existence lately!
So I remembered the Doctor who was going to do the Neuropsych testing asking me if I was sure it was FM, if MS had been ruled out, and recalled that it was mentioned in one of the articles I posted, and decided to Google it. Interestingly enough, they did an amazing job of describing the Cognitive Dysfunction in MS, AND it sounds a LOT like what I deal with, so I decided to post it. Would love input on whether or not other people have similar problems to what is described in this article:
Cognitive Dysfunction as a Symptom of Multiple Sclerosis
So I remembered the Doctor who was going to do the Neuropsych testing asking me if I was sure it was FM, if MS had been ruled out, and recalled that it was mentioned in one of the articles I posted, and decided to Google it. Interestingly enough, they did an amazing job of describing the Cognitive Dysfunction in MS, AND it sounds a LOT like what I deal with, so I decided to post it. Would love input on whether or not other people have similar problems to what is described in this article:
Cognitive Dysfunction as a Symptom of Multiple Sclerosis
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