WARNING:
This story may be shockingly unbelievable, and has to do with sensitive subject matter involving police, psychiatric facilities, shocking acts and irrational people...
Well. Things just continued to get worse where I was staying. She gave me 2 weeks to move out, till the end of the month. Then the next day, I came home to find the gates that gave me access to my room locked, and all hell broke loose. She wanted me gone that night, which she proceeded to tell me in about 15 insulting, demeaning text messages, and I told her she was going to have to wait till morning. (I'd had a really exhausting day, driving out to & putting some of my stuff BACK into my storage, getting my pain medication from the pharmacy, & picking up my mail, then turning around & coming back; plus it was 10pm; how was I supposed to find a place to stay at that hour, on such short notice, even if I didn't collapse from the strain?)
Yes. So I spent the night getting text messages where I was told I wasn't really sick, it was all in my head; that she wouldn't be enabling me anymore, that if I was sick, it was in the head, that I was crazy, a loser, a mooch, a leach, all kinds of craziness. I stopped responding, and they eventually stopped, and I got to make arrangements with a true friend, to get help moving my stuff out the next day.
I'd wanted to go to sleep early, but I got anxious, wondering if that crazed, nasty woman was going to bust in my door in the middle of the night & do who knows what to me or my things...(seeing as how the room is tiny and there is one foot between the door & the bed, at most, it's not like I could defend myself) and sleep wouldn't come easily.
I got woken up to her pounding on the door telling me to get out, and I began to oblige, packing all the things it had taken me TWO trips to my storage to bring back...she'd told me I could have a yard sale, previously...
She was yelling and pounding on the door while I tried to take my meds, keep my tachycardia from getting too out of control, and pack, and then she started removing all the things & food I'd had stored in the garage refrigerator or elsewhere and putting them outside the back gate, screaming at me the whole time, so finally, I started screaming back to leave me to pack in peace, I'd already let her know someone was coming to help me...finally I screamed a threat at her, something private that she didn't want told, that I'd tell it if she didn't leave me to pack in peace. She finally left.
She started texting me though. Then finally stopped, and later, told me she "didn't want to throw me out on the streets if I had no place to go" which I had to try hard not to smirk at, because obviously, she'd wanted to do that last night, so why not now? And that she would leave the doors unlocked so I could load my things and let the friend in to help. Then she got her kids (and the dog that liked me) together and left.
So I finally felt safe enough to get my car, bring it around back, and start loading my stuff, valuables, like my purse, my laptop, etc., first. Then I popped my trunk, and walked back in to get more things, and heard something at the gate. Relieved, I assumed it was the guy who was coming to help me move. I opened the door to find 4 policemen. I started, confused that she'd called them and left, and then relaxed, thinking she was silly and how much easier it would be if she came back and they were here, so she couldn't harass me any more. So I invited them in and asked them how I could help them, smiling.
That's when they told me that my Mom was very worried about me and was on her way over.
Which confused the heck out of me, because I couldn't understand quite what my Mother, who I purposely hadn't seen in over 6 months after she told me that I should search my conscience because there must be some reason I was sick, and ask for forgiveness or something insane and cruel and fanatically religious to that effect, had to do with anything. I had told the crazy woman that she was reminding me of my mother when she was mercilessly insulting me, and she had offered to call her and ask her to take me in...so my first thought was that she had called her, but then how did that explain the cops? Well, they kindly cleared that up for me shortly.
Apparently, my mother had called them because she and my brother were worried about me. They thought I was going to try and hurt myself. The words 5150 Psychiatric Hold popped into my head, and suddenly I became very wary of any and all conversation or volunteering of information with the 3-4 cops in the backyard with me, and when I ceased to cooperate, they put me in handcuffs! I talked them into waiting until my mother arrived to clear things up to escort me out front and put me in a car, and finally managed.
My mother acted all distressed to see me in handcuffs, but her feigned distress suddenly went away when they told her it was procedure, and if she wanted them to hold me, they had to.
When it became apparent my Mother was not going to be swayed, I must admit, I had some choice words for her. Man those handcuffs hurt my tiny, screwed-up wrists! And then my shoulders started to cramp. Thanks for that, Mother. I had some choice words for the cop, once I realized he wouldn't be persuaded to stop and secure my car, with all my most valuable possessions in it sitting wide open.
However, he soon forgave me and we made friends as we waited for 3 hours in the waiting room of the Psychiatric Emergency Room at the lovely County Hospital, and I eventually got him to loosen the cuffs, and let me keep them in the front to ease the redness and swelling in my fingers, and so I could put my feet up on the chair next to me so my blood pressure didn't get too low. (Turns out, at that point it was quite high, and I had a fever.)
When my crazy mother and her pawn, my brother, decided to show her face, it had just dawned on me, that despite them saying that the crazy woman had nothing to do with it, neither of them had known where she lived...
And that's when I figured out that all this was my former friend's way of keeping her secrets safe. She must have gotten in touch with my brother, gotten my Mom's number, called and told her (like she'd been spewing at me) what a wonderful person she had been, trying to help me out, and how I was a crazy, ungrateful, loon, and everything else my mother could possibly want to hear to make her feel better about turning her back on a sick daughter who had busted her bum trying to make sure she had a nice place to live and money to live off of the past year. (She was extremely upset that when people asked me why my Mom didn't help me out once I became homeless, I told them the truth; that her moods had been erratic the past year, she'd been having fits of temper, probably due to her refusing to follow the treatment for her blood pressure, and that she had been being more and more cruel and verbally abusive more and more often, and that I'd had enough, after spending over a decade in therapy trying to learn how to get along with her or cope with her treatment of me, and been repeatedly told that I just needed to stay away from her, which I was doing well at until I got very sick and needed...someone.)
When I tearfully started explaining it to them, then asking them how they could believe her, knowing the woman and what she had put me through in the past as they did, how they could believe her over me, and do this rather than just offer to take me in, my brother flinched, and I was pretty sure he understood he'd been duped and used against me in a very nasty way...he later got in an argument with my mother and left.
Oh, there's more ridiculousness, but in the end, the cop put in a good word for me, after all, I'd ended up telling him how things had been and from my family's attitudes & reactions I think he saw that it was all true, and didn't buy my dear mother talking to me like an idiot telling me that I needed to be evaluated .As with past doctors, the Psychiatrist saw through her bs, heard me out, and the lack of my brother supporting my mother's story helped too, so she told me she was letting me go. There was no need for me to be on a 72-hour hold, or even stay a second longer than necessary. Of course, then my dear mother disappeared, once we got back to reality, where I'm physically sick and she's back in her own sick sad little world where she, and only she has the right to feel or be sick, and everything I've done for her is forgotten and buried...
I walked out, free, but with no purse, phone, money, or even a sweater for the cold wind that was blowing, feeling sick, and sore as the adrenaline wore off and all the awkward positions I'd had to endure began to make my muscles ache. I waited for a friend to come pick me up, and she did, just before I was about to sign into the regular ER and try to get a saline IV in hopes of stilling my raging, beta-blocker starved heart rate and the overwhelming feeling of malaise and weakness. And I still had to go get my stuff back. Escorted by the cops, as the crazy former friend (who never deserved the title) hung up when my true friend called about picking up my things. She opened the door with a look of surprise on her face. Oops. They don't keep sane people in the Psychiatric Ward on 5150 holds, sorry.
*(At least not in this case, lucky for me, but here is the story of Sophia Mirza, who died in the UK of M.E./CFS several years ago, and was put on a Psychiatric Hold by her doctors. At least in my case, I only have my MOTHER to fear.)
Showing posts with label CFS. Show all posts
Showing posts with label CFS. Show all posts
Monday, April 15, 2013
Monday, May 2, 2011
Monday, December 21, 2009
Saturday, October 3, 2009
Pace Yourself
Easier said than done right?
Well for me, this has been a huge issue lately. I guess I crashed a couple months back, kinda have to face it, now. It seems odd, because I never seemed to crash like most people with CFS & FM do. If I really pushed it, I might be out of commission for a a couple days, a few at most, and rarely. (Unless you count the 3 occasions when I crashed after going back to work for a few months.) This time, it seems endless, and I'm being faced with the fact that I'm NOT going back to normal anytime soon.
Monday, it took just a trip to the drugstore and browsing through their clearance items, and looking for a supplement to set me off into a downhill spiral. By the time I was on the way to my car, I was feeling woozy, seeing spots, sweating, heart was racing, out of breath, and I'd be willing to bet my blood pressure was plummeting. I rested for a couple of minutes, and unwisely talked myself into going to the next store. I ended up lying down in the car for about 30 minutes, went in, and barely made through the checkoutline before I broke into a sweat and collapsed into the car again. Tuesday I felt like hell. The next days were better; as long as I did next to nothing. Any activity (even getting dressed) left me breathless and weak with my heart racing and exhausted. My blood pressure was having trouble staying up, and the head rushes were getting so persistent that I started getting headaches.
Today, I was frustrated and a bit depressed, and finally decided, screw it. I'm just going to stay in bed all day! (After a brief sojourn on the living room recliner w/the laptop.) I was upset, but finally, after a good free-write and some soothing meditation music, I gave in. It felt good, and I ended up embracing it. I started thinking, hmm. Maybe this is what the doctors meant by resting...Two doctors have told me that. Take it easy. REST. I'm not good at resting though. I feel guilty when I rest. (I think I possibly feel guilty for being alive if I get nothing "useful" accomplished, but...)
Then I read this article titled Find Your Limits - How to Put the Push-Crash Cycle Behind You.
Just the title intrigued me, because I've often lately come to the realization that I don't KNOW how to pace myself, I can't get a handle on it, because I keep trying to be normal, but I HAVE no normal these days...
This article makes things far clearer though; it really makes a lot of sense. Apparently the author runs a website and has courses on pacing and dealing with Chronic Illness. They're not free of course; but if it can help me get a handle on things...maybe it's worth it.
Hmm. I had a realization. I feel kind of ridiculous doing nothing. I'm trying to get over it. Just to see. (Or maybe it's my way of saying SCREW YOU, I can't do what I want, so I'll do NOTHING!) It's occurred to me that maybe part of me doesn't believe I'm sick, because people around me don't seem to (and maybe that's the answer to all the questions I've been asking lately?).
Well for me, this has been a huge issue lately. I guess I crashed a couple months back, kinda have to face it, now. It seems odd, because I never seemed to crash like most people with CFS & FM do. If I really pushed it, I might be out of commission for a a couple days, a few at most, and rarely. (Unless you count the 3 occasions when I crashed after going back to work for a few months.) This time, it seems endless, and I'm being faced with the fact that I'm NOT going back to normal anytime soon.
Monday, it took just a trip to the drugstore and browsing through their clearance items, and looking for a supplement to set me off into a downhill spiral. By the time I was on the way to my car, I was feeling woozy, seeing spots, sweating, heart was racing, out of breath, and I'd be willing to bet my blood pressure was plummeting. I rested for a couple of minutes, and unwisely talked myself into going to the next store. I ended up lying down in the car for about 30 minutes, went in, and barely made through the checkoutline before I broke into a sweat and collapsed into the car again. Tuesday I felt like hell. The next days were better; as long as I did next to nothing. Any activity (even getting dressed) left me breathless and weak with my heart racing and exhausted. My blood pressure was having trouble staying up, and the head rushes were getting so persistent that I started getting headaches.
Today, I was frustrated and a bit depressed, and finally decided, screw it. I'm just going to stay in bed all day! (After a brief sojourn on the living room recliner w/the laptop.) I was upset, but finally, after a good free-write and some soothing meditation music, I gave in. It felt good, and I ended up embracing it. I started thinking, hmm. Maybe this is what the doctors meant by resting...Two doctors have told me that. Take it easy. REST. I'm not good at resting though. I feel guilty when I rest. (I think I possibly feel guilty for being alive if I get nothing "useful" accomplished, but...)
Then I read this article titled Find Your Limits - How to Put the Push-Crash Cycle Behind You.
Just the title intrigued me, because I've often lately come to the realization that I don't KNOW how to pace myself, I can't get a handle on it, because I keep trying to be normal, but I HAVE no normal these days...
This article makes things far clearer though; it really makes a lot of sense. Apparently the author runs a website and has courses on pacing and dealing with Chronic Illness. They're not free of course; but if it can help me get a handle on things...maybe it's worth it.
Hmm. I had a realization. I feel kind of ridiculous doing nothing. I'm trying to get over it. Just to see. (Or maybe it's my way of saying SCREW YOU, I can't do what I want, so I'll do NOTHING!) It's occurred to me that maybe part of me doesn't believe I'm sick, because people around me don't seem to (and maybe that's the answer to all the questions I've been asking lately?).
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!
Monday, August 24, 2009
What a WEEK!
And thank goodness it's over! Even though I've been sick for several weeks now, this past week was the roughest yet. Antibiotics for my kidney infection weren't working, so I had to go get more. At that point, I was overheating, having hot flashes and cold sweats, and feeling nauseous. Somehow, I got myself to the doctor's and even got in a good mood. It was weird. I honestly think after spending so much time home in bed sick and not seeing anyone but my Dad, and briefly, my brain was just craving some human interaction like mad!
I guess that's part of why this whole "sicker than usual" spell has been so tough. Prior to it, I had at least 3 doctor's appointments a week. (No, I'm not some kind of crazy, it was physical therapy, or my allergist, or a therapist, lol. Just trying to treat as much as was treatable any way I could. Physical Therapy did wonders btw, I'll have to talk about that!) So, pathetic as it may sound, at least I got out and got to talk to real LIVE people at least a couple of times a week and feel like part of the world. I used to be okay with sitting at home alone, but it's just so great to be around people, get distracted, joke, laugh...But lately, I've had to give up on that. First because of financial issues, I had to cut back to bare minimum appointments, and of those, I ended up asking to be billed for most of the co-pays. I'm in such a hole!
Then, I've actually, without a doubt, been far too sick to do much. I kept trying, and trying to do stuff, because I'm stubborn, pig-headed, and that whole guilt thing, but after a few weeks of being sick...I could almost say it broke me a bit...but on the other hand, there was some of that whole "if you can't beat 'em, join 'em" thing going on.
I just had to come to the realization that, okay, I'm really, really sick right now. Nothing else to do but face it, especially when it's so bad I was starting to avoid even checking my e-mail because being upright was making me feel so ill.
Ah, yes. Dysautonomia. My blood pressure was no lower than it has been since I started on the Beta Blocker, but I could tell it wasn't staying up. I was having headrushes galore, to the point where I was starting to get headaches again, and being upright, sitting at the computer was making me feel just plain ill. It's almost like this anxious feeling, it seems like it's hard to breathe, the muscles in my upper body get completely tensed up, and I just feel sick. And an overwhelming urge to lie down.
It got to the point where I was getting all shaky, like a few weeks back, so I decided I'd better listen and keep lying down, cuz that stuff unnerves me.
PLUS, the UTI was getting so bad, my back was killing me, all the way around actually, and my stomach was swollen enough so it looked like I was pregnant, though I was hardly eating. (Eating made the pain worse, kidney infections seem to screw up one's digestion; at least with me they do...)
I started to get better after a day or so of antibiotics, but then the Dysauntomia flared back up, complete with a resting heartrate of 130. It was so bad I felt out of breath, like I'd been running. I figured, I've gone up to 150 on the eliptical trainer before (back when I was well enough to do that for 20 minutes or so) and there's a hospital less than a mile away, so if it got worse than that, I'd go.
(I think it may have partly been because I ran out of my Beta Blocker the night before, plus, in retrospect, I now see that infections always trigger the Dysautonomia symptoms.)
So all that was fun. I medicated myself any way I could. I had some Celtic Sea Salt, extra pouches of Emergen-C, and vitamins/supplements galore.
I've come (back) to an old conclusion. I need to help my adrenals. Yes, I may have chronic enterovirus infections, but they don't usually make me this sick. And in the past week, I've had different types of infections...so I knew it was my immune system that was having issues. Plus, the Dysauntomia always gets better when I treat my adrenals. I've had a couple of different holistic doctors tell me I was having adrenal troubles, and I KNOW one supplement for them that was key in getting me out of a Dysautonomia flare that was the worse ever (after my last "real" job).
So even if the virus is the cause of everything, treating my obviously exhausted adrenals SHOULD help right? Adrenals regulate your immune system, your digestion, blood sugar, BLOOD PRESSURE, electrolytes, stress response...all of which I've been having trouble with...I am happy to report, that I was pleasantly surprised to find that w/the purchase of some Whey Protein and a box of Emergen-C, I actually have many of the supplements that can help support my adrenals already! (At least for a couple more days...)
So I'm going to work on that, but most of all, just relaxing and accepting that I need to rest, and it's ok to be lazy. Sheesh, that Catholic guilt really does NEVER leave you! Hoping to start some chair yoga tomorrow. Must find my Zen, wherever or however my life is destined to be...
I guess that's part of why this whole "sicker than usual" spell has been so tough. Prior to it, I had at least 3 doctor's appointments a week. (No, I'm not some kind of crazy, it was physical therapy, or my allergist, or a therapist, lol. Just trying to treat as much as was treatable any way I could. Physical Therapy did wonders btw, I'll have to talk about that!) So, pathetic as it may sound, at least I got out and got to talk to real LIVE people at least a couple of times a week and feel like part of the world. I used to be okay with sitting at home alone, but it's just so great to be around people, get distracted, joke, laugh...But lately, I've had to give up on that. First because of financial issues, I had to cut back to bare minimum appointments, and of those, I ended up asking to be billed for most of the co-pays. I'm in such a hole!
Then, I've actually, without a doubt, been far too sick to do much. I kept trying, and trying to do stuff, because I'm stubborn, pig-headed, and that whole guilt thing, but after a few weeks of being sick...I could almost say it broke me a bit...but on the other hand, there was some of that whole "if you can't beat 'em, join 'em" thing going on.
I just had to come to the realization that, okay, I'm really, really sick right now. Nothing else to do but face it, especially when it's so bad I was starting to avoid even checking my e-mail because being upright was making me feel so ill.
Ah, yes. Dysautonomia. My blood pressure was no lower than it has been since I started on the Beta Blocker, but I could tell it wasn't staying up. I was having headrushes galore, to the point where I was starting to get headaches again, and being upright, sitting at the computer was making me feel just plain ill. It's almost like this anxious feeling, it seems like it's hard to breathe, the muscles in my upper body get completely tensed up, and I just feel sick. And an overwhelming urge to lie down.
It got to the point where I was getting all shaky, like a few weeks back, so I decided I'd better listen and keep lying down, cuz that stuff unnerves me.
PLUS, the UTI was getting so bad, my back was killing me, all the way around actually, and my stomach was swollen enough so it looked like I was pregnant, though I was hardly eating. (Eating made the pain worse, kidney infections seem to screw up one's digestion; at least with me they do...)
I started to get better after a day or so of antibiotics, but then the Dysauntomia flared back up, complete with a resting heartrate of 130. It was so bad I felt out of breath, like I'd been running. I figured, I've gone up to 150 on the eliptical trainer before (back when I was well enough to do that for 20 minutes or so) and there's a hospital less than a mile away, so if it got worse than that, I'd go.
(I think it may have partly been because I ran out of my Beta Blocker the night before, plus, in retrospect, I now see that infections always trigger the Dysautonomia symptoms.)
So all that was fun. I medicated myself any way I could. I had some Celtic Sea Salt, extra pouches of Emergen-C, and vitamins/supplements galore.
I've come (back) to an old conclusion. I need to help my adrenals. Yes, I may have chronic enterovirus infections, but they don't usually make me this sick. And in the past week, I've had different types of infections...so I knew it was my immune system that was having issues. Plus, the Dysauntomia always gets better when I treat my adrenals. I've had a couple of different holistic doctors tell me I was having adrenal troubles, and I KNOW one supplement for them that was key in getting me out of a Dysautonomia flare that was the worse ever (after my last "real" job).
So even if the virus is the cause of everything, treating my obviously exhausted adrenals SHOULD help right? Adrenals regulate your immune system, your digestion, blood sugar, BLOOD PRESSURE, electrolytes, stress response...all of which I've been having trouble with...I am happy to report, that I was pleasantly surprised to find that w/the purchase of some Whey Protein and a box of Emergen-C, I actually have many of the supplements that can help support my adrenals already! (At least for a couple more days...)
So I'm going to work on that, but most of all, just relaxing and accepting that I need to rest, and it's ok to be lazy. Sheesh, that Catholic guilt really does NEVER leave you! Hoping to start some chair yoga tomorrow. Must find my Zen, wherever or however my life is destined to be...
Friday, December 19, 2008
CFS & Viruses
Found this great link to an article about CFS & Viruses, an interview w/Dr. Chia.
Also, an article about Oxymatrine:
Unfortunately, it looks like I may have to change the name of my blog...
http://phoenix-cfs.org/TrtOxymatrine.html
Also, an article about Oxymatrine:
Unfortunately, it looks like I may have to change the name of my blog...
http://phoenix-cfs.org/IntChia1.html
http://phoenix-cfs.org/TrtOxymatrine.html
Friday, December 12, 2008
A Bump in the Road
Warning: This will probably not be a cheery post.
I had a pretty good couple of weeks. My head was clearing, the fog was retreating, I had more and more hours were the invisible barriers that sometimes seem to plague my existence were gone. More energy. A life I could live with seemed right at my fingertips, I could touch it but not quite grab it, and I wanted to do as much as I could to make up for months of business not taken care of. I knew it wouldn't last, but that doesn't make it any easier.
That's the kicker with these illnesses. If I were forever miserable, or lost a limb, I think I could learn to cope with that, maybe even overcome it; it's a constant. But going from good to bad at any given week, day, hour, or moment, that is the challenge. And it messes with your head.
That's what's getting me down right now. I'm a problem solver by nature. But I can't seem to adjust and figure this one out. I so would love to be one of those inspirational chicks who lives well with chronic illness. Sometimes, I wonder if maybe they had it easier, in that they had their illness to contend with, but everything else wasn't falling down around them. If that was it, I think I could finally be happy. If I knew I was safe and ultimately would have people to count on to watch out for me if things got too bad. But I don't feel I have that. I'm still in survival mode. (Granted, one never knows what really goes on in other people's lives, we see what they want us to see much of the time, and I'm by no means trying to diminish their success.)
So days like this, it takes all the strength I have not to go unhinged.
I'm exhausted. I barely slept last night, was woken up by heart palpitations. One of my most feared symptoms, are the cardiac ones, because even though I have an idea what causes it, and I know I'm not alone, most doctors don't. Days like this I spend torn between going to the Emergency Room, and telling myself nothing bad has come of it yet and I should just ignore it. Until, like now, it's definitely time to sleep, but when I lie down there's nothing to drown out the pounding of my heart.
See, I've been to the hospital about 3 times for this type of thing. Once by the time they saw me, it was better (though it came back later, but I wasn't about to go back to wait in the ER again, I was exhausted, and the chairs at county, and sitting for long periods are not Fibro-friendly) another time, I went and they did tons of tests and found nothing much wrong. The one time they seemed alarmed and took me seriously, all they did was temporarily fix it by dripping a saline IV into me for a couple hours and refer me for a test that was done incorrectly and was pretty distressing. (Try hanging upright on a table for 45 minutes w/people staring at you waiting for you to faint, then pumping you w/some drug to try it again, having your heart wig out, next thing you know it seems the doctor is trying to choke you with his hands on your throat digging down into your clavicle so you don't know what will kill you first, your heart and the not being able to breathe, or the doctor who seems to have gone mad but is really performing carotid artery massage to get your heart pumping normally again...)
The idea that I might go and they won't find anything and I'll run into a doctor who still thinks FM & CFS aren't real and that I'm a nut helps keep me home. I'm still bruised from a recent emotional upheaval, and not up to attempting to educate doctors.
I took some medicine, not specifically for that, but meant to address the CFS in general, and it seemed to help, which was very heartening. But it didn't last, and my next dose isn't for hours. I contemplate calling the answering service of the doctor who prescribed it and seems to be able to connect all these symptoms, to get his opinion, but I'd feel bad waking him up, if they even do that...
I'm so exhausted, but if I lie down, it's harder to ignore and it's hard to keep it from freaking me out. It seems different, too. Usually my BP is really low, and my pulse is racing. This time it's just pounding and occasionally the rhythm feels off.
My soul just feels so weary of all of this. Tired of fighting one thing after another. One day to breathe, another to be upright, another the fatigue, or pain, my brain feeling like a pretzel, or just attempting to overcome all the problems that come with not being able to hold a regular job, and having a condition the SSA is extremely skeptical of.
And then come those blessed good days that I'm so grateful for and make me forget the bad ones; until they're over, and the change isn't always gradual, sometimes it just hits you like a pile of bricks and it's like,
"Wait! What happened?"
All I want is to be able to make a living, be reliable, feel like a responsible, dignified, halfway normal adult again, have confidence that I can take care of myself, and move forward with my life and be happy. It really doesn't take a lot to make me happy...I reach out and grab happiness when I can find it, usually, and hold on tight.
I've been considering, and a dear friend today reminded me that there is no shame in taking anti-depressants. But I've been fighting having to add another pill to my array of meds and supplements, especially one that if I run out of will leave me with little electric zap reminders to the brain, tingly lips, and slight episodes of vertigo and the sensation of being off somehow, in its wake. I haven't even been that depressed lately, it's just the emotional rollercoaster...I'm a pretty emotionally sensitive person, and I've been through hell these last couple of years...at times, it could be an asset to feel things so deeply, but right now it seems like just another thing exhausting me, and I wouldn't mind getting off that ride for a bit.
Alrighty folks, my heart seems to have settled down for the moment. Maybe I can sneak off and go to sleep before it realizes I know...Shhhh... ;)
Oh, and any tips from anyone with experience with ,these kinds of symptoms would be greatly appreciated. I know you must be out there, somewhere...
I had a pretty good couple of weeks. My head was clearing, the fog was retreating, I had more and more hours were the invisible barriers that sometimes seem to plague my existence were gone. More energy. A life I could live with seemed right at my fingertips, I could touch it but not quite grab it, and I wanted to do as much as I could to make up for months of business not taken care of. I knew it wouldn't last, but that doesn't make it any easier.
That's the kicker with these illnesses. If I were forever miserable, or lost a limb, I think I could learn to cope with that, maybe even overcome it; it's a constant. But going from good to bad at any given week, day, hour, or moment, that is the challenge. And it messes with your head.
That's what's getting me down right now. I'm a problem solver by nature. But I can't seem to adjust and figure this one out. I so would love to be one of those inspirational chicks who lives well with chronic illness. Sometimes, I wonder if maybe they had it easier, in that they had their illness to contend with, but everything else wasn't falling down around them. If that was it, I think I could finally be happy. If I knew I was safe and ultimately would have people to count on to watch out for me if things got too bad. But I don't feel I have that. I'm still in survival mode. (Granted, one never knows what really goes on in other people's lives, we see what they want us to see much of the time, and I'm by no means trying to diminish their success.)
So days like this, it takes all the strength I have not to go unhinged.
I'm exhausted. I barely slept last night, was woken up by heart palpitations. One of my most feared symptoms, are the cardiac ones, because even though I have an idea what causes it, and I know I'm not alone, most doctors don't. Days like this I spend torn between going to the Emergency Room, and telling myself nothing bad has come of it yet and I should just ignore it. Until, like now, it's definitely time to sleep, but when I lie down there's nothing to drown out the pounding of my heart.
See, I've been to the hospital about 3 times for this type of thing. Once by the time they saw me, it was better (though it came back later, but I wasn't about to go back to wait in the ER again, I was exhausted, and the chairs at county, and sitting for long periods are not Fibro-friendly) another time, I went and they did tons of tests and found nothing much wrong. The one time they seemed alarmed and took me seriously, all they did was temporarily fix it by dripping a saline IV into me for a couple hours and refer me for a test that was done incorrectly and was pretty distressing. (Try hanging upright on a table for 45 minutes w/people staring at you waiting for you to faint, then pumping you w/some drug to try it again, having your heart wig out, next thing you know it seems the doctor is trying to choke you with his hands on your throat digging down into your clavicle so you don't know what will kill you first, your heart and the not being able to breathe, or the doctor who seems to have gone mad but is really performing carotid artery massage to get your heart pumping normally again...)
The idea that I might go and they won't find anything and I'll run into a doctor who still thinks FM & CFS aren't real and that I'm a nut helps keep me home. I'm still bruised from a recent emotional upheaval, and not up to attempting to educate doctors.
I took some medicine, not specifically for that, but meant to address the CFS in general, and it seemed to help, which was very heartening. But it didn't last, and my next dose isn't for hours. I contemplate calling the answering service of the doctor who prescribed it and seems to be able to connect all these symptoms, to get his opinion, but I'd feel bad waking him up, if they even do that...
I'm so exhausted, but if I lie down, it's harder to ignore and it's hard to keep it from freaking me out. It seems different, too. Usually my BP is really low, and my pulse is racing. This time it's just pounding and occasionally the rhythm feels off.
My soul just feels so weary of all of this. Tired of fighting one thing after another. One day to breathe, another to be upright, another the fatigue, or pain, my brain feeling like a pretzel, or just attempting to overcome all the problems that come with not being able to hold a regular job, and having a condition the SSA is extremely skeptical of.
And then come those blessed good days that I'm so grateful for and make me forget the bad ones; until they're over, and the change isn't always gradual, sometimes it just hits you like a pile of bricks and it's like,
"Wait! What happened?"
All I want is to be able to make a living, be reliable, feel like a responsible, dignified, halfway normal adult again, have confidence that I can take care of myself, and move forward with my life and be happy. It really doesn't take a lot to make me happy...I reach out and grab happiness when I can find it, usually, and hold on tight.
I've been considering, and a dear friend today reminded me that there is no shame in taking anti-depressants. But I've been fighting having to add another pill to my array of meds and supplements, especially one that if I run out of will leave me with little electric zap reminders to the brain, tingly lips, and slight episodes of vertigo and the sensation of being off somehow, in its wake. I haven't even been that depressed lately, it's just the emotional rollercoaster...I'm a pretty emotionally sensitive person, and I've been through hell these last couple of years...at times, it could be an asset to feel things so deeply, but right now it seems like just another thing exhausting me, and I wouldn't mind getting off that ride for a bit.
Alrighty folks, my heart seems to have settled down for the moment. Maybe I can sneak off and go to sleep before it realizes I know...Shhhh... ;)
Oh, and any tips from anyone with experience with ,these kinds of symptoms would be greatly appreciated. I know you must be out there, somewhere...
Wednesday, December 3, 2008
ProHealth Sponsoring Chat with CFIDS Association Director
Join a Live Chat with ME/CFS Research Expert Dr. Suzanne Vernon
**News of the Research program actually broke today: Read it Here
(Personally, I was too tired to make much sense of it all, except to get that they will be looking for Biomarkers to more accurately be able to diagnose CFS. Not the cure, but at least proof for the doubters still out there, and entities like the Social Security Administration.)
Also, you can take advantage of this deal if you see a supplement or product on their site if you like:
ProHealth invites you to join a Live Q&A with Suzanne Vernon, PhD - Scientific Director of the CFIDS Association of America, "Working to Translate Science to a Cure
for CFS."
The Time and Place:
Friday, December 5th, at 3 PM Pacific Time in the ProHealth.com Community Chat Rooms.
The Subjects:
Breaking news about the exciting & unprecedented ME/CFS research program Dr. Vernon has selected for CFIDS Association funding in 2009. Plus almost anything you'd like to ask about the "state of the science" current & future, in terms of CFS causes, diagnosis, and treatment. read more
**News of the Research program actually broke today: Read it Here
(Personally, I was too tired to make much sense of it all, except to get that they will be looking for Biomarkers to more accurately be able to diagnose CFS. Not the cure, but at least proof for the doubters still out there, and entities like the Social Security Administration.)
Also, you can take advantage of this deal if you see a supplement or product on their site if you like:
Wednesday, October 29, 2008
What FM and CFS Mean for Me, Personally
On the sidebar to your right you will see links to sites explaining exactly what FM and CFS/CFIDS/ME are. You'll probably see a whole laundry list of symptoms. Not everyone has all of them, and the ones that are required for a diagnosis will even vary in degrees. So I thought a good place to start would be to elaborate on what these diagnoses mean to ME personally.
Fibromyalgia
I consider myself lucky here. The main symptom of FM is pain. Thankfully, mine is not constant or as severe as some. Mine seems to come in flares. Sometimes it's my whole body. But usually it's a certain body part that acts up for a period of time, sometimes a day, sometimes months.
FM Symptoms
Pain
Comes and Goes
Neck/Trapezius Region
Hands/Wrists
Ribs
Lower Back
Knees (prone to tendonitis)
Bottoms of Thighs
Feet
Whole Body Aches
Vague Discomfort
Fatigue
Waxes and Wanes
Varies from:
Wake up dying for more sleep or feeling groggy/weak/dizzy
Low Stamina (Get tired easily, within hours of awaking)
Exhausted but can't relax
Complete lack of energy - Holding myself up in a sitting position takes effort
Muscle tension
CFS
See above, plus:
Fluish body aches and malaise (Feeling like I'm getting the flu)
Swollen glands
Swollen Lymph nodes
Dysautonomia:
POTS
Low Blood Pressure
Pounding or racing heart
Inability to hold electrolytes
Chest pain
Feeling of forgetting to breathe, or breathing takes great effort
Inability to stay upright for long periods of time (standing/sitting) (POTS)
Neurally Mediated Hypotension
Problems regulating body temperature - Overheating/Hot Flashes
Others:
Subclinical Hypoglycemia
Balance problems/Clumsiness
New Allergies/Asthma
Moderate to Severe Cognitive Dysfunction, including:
Memory Problems
Inability to recognize people's faces I don't know well
Word-finding problems
Forgetting what I was saying, or going to do
Disorientation
Trouble following verbal directions
Problems focusing and blocking out distractions
Inability to multi-task effectively
How does this affect my life?
In many ways, as you can imagine. I can't hold a regular, even part-time job. Even school, at this point, has become very difficult. (Though I'm learning that if you are up-front and honest, and keep the lines of communication open, anything is possible. Easier said than done...I don't like feeling like I'm using my illness to get special consideration, but if it well help me finally get that degree...For now I think maybe I just need to rest for a bit.)
My symptoms are unpredictable and can change quickly. One day, I might feel pretty close to normal, the next I might have to lie down most of the day. One week, I might be just fine in the mornings, then for the next month, I may be slower, stiffer, more tired...and if I try and push myself to hard too early, I trigger more symptoms. Then, sitting up for a couple of hours, doing nothing, is about the only chance I have at being able to accomplish something in the afternoon. It's like my body has to adjust to being upright or something...
It's hard to make plans, social, or otherwise. I usually have to rest and save up my energy when I have a social engagement.
Many times I don't feel like talking on the phone, because I'm tired, and that aggravates the cognitive dysfunction (dubbed "brain fog" or just "fog" by many of us with FM/CFS) and I might have trouble putting together a sentence, finding words, space out in the middle of a thought, or end up just being plain tactless, which I'm trying to learn not to be mortified about. Again, something I'm trying to work through and overcome. Part of it is self-consciousness, I guess.
Sometimes, I may get very overwhelmed, and end up blocking out everything but the bare necessities of getting by. I'm working on this though. (I think all the stress I've been under the last couple of years, on top of being sick, has pretty much made pieces out of my ability to deal with stress well; I've been told I have slight adrenal problems too, and supplements I've taken definitely help, so that might be part of the reason.)
When I list it all out like this, it really puts things into perspective, and makes me think maybe I should be a little kinder to myself. I've really spent so much time feeling guilty and feeling like I'm not handling things well enough, like if I just tried harder I could "pull off normal", that somehow it's my fault that I ended up I this mess...
I think about all the movies, shows, and books I've read, even before I got ill, about people being so brave and graceful, even successful, despite their disabilities...and that doesn't help. But I have to remind myself. That's not real life. It's either fiction, or just a narrow glimpse into their lives. Also, I think if you grow up with a disability or illness, I think it's different. You learn your limitations and how to deal with them, you don't expect things that are impossible for you. To reach the age of 23, believing that anything is yours for the taking if you just work hard enough and are smart about things, and then have that all taken away, to have to change your whole outlook on life, who you are, learn that you have limitations, and force yourself to learn to ask for help, well, that's a pretty huge task.
Fibromyalgia
I consider myself lucky here. The main symptom of FM is pain. Thankfully, mine is not constant or as severe as some. Mine seems to come in flares. Sometimes it's my whole body. But usually it's a certain body part that acts up for a period of time, sometimes a day, sometimes months.
FM Symptoms
Pain
Comes and Goes
Neck/Trapezius Region
Hands/Wrists
Ribs
Lower Back
Knees (prone to tendonitis)
Bottoms of Thighs
Feet
Whole Body Aches
Vague Discomfort
Fatigue
Waxes and Wanes
Varies from:
Wake up dying for more sleep or feeling groggy/weak/dizzy
Low Stamina (Get tired easily, within hours of awaking)
Exhausted but can't relax
Complete lack of energy - Holding myself up in a sitting position takes effort
Muscle tension
CFS
See above, plus:
Fluish body aches and malaise (Feeling like I'm getting the flu)
Swollen glands
Swollen Lymph nodes
Dysautonomia:
POTS
Low Blood Pressure
Pounding or racing heart
Inability to hold electrolytes
Chest pain
Feeling of forgetting to breathe, or breathing takes great effort
Inability to stay upright for long periods of time (standing/sitting) (POTS)
Neurally Mediated Hypotension
Problems regulating body temperature - Overheating/Hot Flashes
Others:
Subclinical Hypoglycemia
Balance problems/Clumsiness
New Allergies/Asthma
Moderate to Severe Cognitive Dysfunction, including:
Memory Problems
Inability to recognize people's faces I don't know well
Word-finding problems
Forgetting what I was saying, or going to do
Disorientation
Trouble following verbal directions
Problems focusing and blocking out distractions
Inability to multi-task effectively
How does this affect my life?
In many ways, as you can imagine. I can't hold a regular, even part-time job. Even school, at this point, has become very difficult. (Though I'm learning that if you are up-front and honest, and keep the lines of communication open, anything is possible. Easier said than done...I don't like feeling like I'm using my illness to get special consideration, but if it well help me finally get that degree...For now I think maybe I just need to rest for a bit.)
My symptoms are unpredictable and can change quickly. One day, I might feel pretty close to normal, the next I might have to lie down most of the day. One week, I might be just fine in the mornings, then for the next month, I may be slower, stiffer, more tired...and if I try and push myself to hard too early, I trigger more symptoms. Then, sitting up for a couple of hours, doing nothing, is about the only chance I have at being able to accomplish something in the afternoon. It's like my body has to adjust to being upright or something...
It's hard to make plans, social, or otherwise. I usually have to rest and save up my energy when I have a social engagement.
Many times I don't feel like talking on the phone, because I'm tired, and that aggravates the cognitive dysfunction (dubbed "brain fog" or just "fog" by many of us with FM/CFS) and I might have trouble putting together a sentence, finding words, space out in the middle of a thought, or end up just being plain tactless, which I'm trying to learn not to be mortified about. Again, something I'm trying to work through and overcome. Part of it is self-consciousness, I guess.
Sometimes, I may get very overwhelmed, and end up blocking out everything but the bare necessities of getting by. I'm working on this though. (I think all the stress I've been under the last couple of years, on top of being sick, has pretty much made pieces out of my ability to deal with stress well; I've been told I have slight adrenal problems too, and supplements I've taken definitely help, so that might be part of the reason.)
When I list it all out like this, it really puts things into perspective, and makes me think maybe I should be a little kinder to myself. I've really spent so much time feeling guilty and feeling like I'm not handling things well enough, like if I just tried harder I could "pull off normal", that somehow it's my fault that I ended up I this mess...
I think about all the movies, shows, and books I've read, even before I got ill, about people being so brave and graceful, even successful, despite their disabilities...and that doesn't help. But I have to remind myself. That's not real life. It's either fiction, or just a narrow glimpse into their lives. Also, I think if you grow up with a disability or illness, I think it's different. You learn your limitations and how to deal with them, you don't expect things that are impossible for you. To reach the age of 23, believing that anything is yours for the taking if you just work hard enough and are smart about things, and then have that all taken away, to have to change your whole outlook on life, who you are, learn that you have limitations, and force yourself to learn to ask for help, well, that's a pretty huge task.
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