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. ;)
Showing posts with label frustration. Show all posts
Showing posts with label frustration. Show all posts
Friday, April 22, 2011
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!
Friday, October 23, 2009
Sometimes I so want to go all Buffy the Vampire Slayer on CFS
That's how I felt today.
I just had a compelling urge to karate-kick CFS. But, unfortunately for me, it's invisible! And not only that, it's an illness, so you really can't, I mean, maybe if it was Cancer or something, you could remove a tumor, put it in a jar, and do it, or the karate-kick could take the form of radiation or chemo, but, that's probably not gonna do much here.
I guess I was just upset. I needed to do some research online, and my father wasn't home with his laptop, and my body was sending me the really annoying, barely perceptible but extremely insistent message that I should lie DOWN! ASAP! And I was trying to keep on doing what I was doing, but I couldn't focus, and I kept feeling worse. That's Orthostatic Intolerance for ya.
Grrr. Finally, very frazzled, I got up and lay down. But the frazzled wasn't going away, and I just kept wanting to karate-kick SOMETHING. I couldn't hold still, and I was just so frustrated. Finally a little desperate and unable to lie still, I put on some meditation music.
That has been my saving grace lately, meditation music. Something about those frequencies of sound seem to penetrate and resonate deep within me, and smooth out all the chi that is wrinkled, depleted, or bouncing off the wall. Okay, so I may have taken a Xanax as well. It seems to be a typical thing with me. I get worn out, and I know the only thing that will help is rest, but my mind is still bouncing off the wall, and I can't rest, I keep thinking of things I wanted to get done, or feeling like I should be multi-tasking. Being productive used to be my favorite thing, what made me ME. And now it seems it just drives me slightly mad. Or maybe it's what keeps me going? I can't seem to decide. This week, it seems like I've gotten a whole lotta nothing done. I can't seem to focus. And then, I get tired before I've managed to redirect and refocus to get anything done...I was feeling a bit better after laying there, listening to the music, half conscious, for who knows, an hour or so...
Then I went to the doctor. This doctor, he drives me crazy. I go in, and he asks me what I want him to do for me, like seriously. Not like, "Hi there, what can I do for you today hun?" But I tell him what's wrong, and then he asks me, "Okay, so what would you like me to do?" "Umm, I I was kinda hoping YOU could tell me that?"
(I had a UTI.)
Last time I was there, because he told me to follow up on some test results (for the third week in row, they'd always mess up, or not do them all, or...) And he asks me, "So what medication would you like refilled?"
I look at him, kinda confused...
"Vicodin?" he offers.
I tilt my head and look at him, and say, "Uh...no...that's okay..."
(Did I mention when I went online to check this guy out, there was a blurb from someone saying how he seems willing to give out prescriptions like candy?) I only went because he was one of only two doctors locally who take the County Sponsored insurance plan I'm on...and I already didn't like the other one. Her English sucked.
So I'm thinking, okay, so everytime I go he wants to run tests, take the same x-rays over and over again, and he offerred me Vicodin and I refused. So the last thing I figured I'd have to deal with is him accusing me of drug-seeking...
Well, not quite that, just when I asked him for the scrips, he told me these drugs were addictive, and if I wasn't already I would be addicted to them, and didn't let me get a word in edge-wise until he asked me what I would do if he didn't give them to me...(I'm going to a concert tomorrow, a very big deal for me, and one of the situations where I just take medication because I KNOW I'll be needing it...I rarely take hardcore pain killers when I'm at home, mainly, I use them for when I have to go somewhere, which is why 30 pills last me about 3 months...Normal dosage is 1 every 4 hours, and if I take 2 in one day it's a rare occurence, last time, it was pain from the UTI that wouldn't leave and only after Tylenol ceased to cut it.)
Haha, so do I sound defensive already?
You bet. I live with an illness nobody understands and that (at least at the moment) is invisible to the eye of any casual observer, but that a specialist was quoted in the New York Times as saying that she would prefer to have AIDS than have, because her AIDS patients are healthier than her CFS patients, and most of them can work and have a normal life, while the CFS patients mostly can't!
(Incidentally, I have to agree...If you have AIDS there are so many programs, too. Programs to give you medical care for it, programs to help you pay for your medications, programs to give you a place to live...and if you do get full-blown AIDS, I don't really see a Disability judge turning you away, saying you are too young, or your doctor is being overly generous in his assessment of your disability. So...)
Okay, sorry, this is beginning to sound like a whine-fest. I said I got defensive!
Everyone's going all crazy about this XMRV virus...but at this point I'm afraid to even get my hopes up. Besides, I already know I have another virus, and I can't get the medication for THAT, because I can't afford it. Incidentally, it's an AIDS and Hepatitis med. And if you have AIDS, and can't afford it, they'll hook you up. But if not, you're outta luck.
As for my doctor, I explained to him that I hadn't taken the Vicodin in two weeks, and hadn't experienced any withdrawals, plus, 30 pills lasts me at least a couple of months, and the other med, I take only at night and have gone without for 3 nights, at worst, I got to sleep a bit later, and if he liked I could bring in my medical records so he could see that I take them only as much as I say, and call my previous doctors. Grrr.
How ironic that he was offering me pain meds I didn't need last time!?!
Thank goodness the other reason for my visit was to get a referral to a Rheumatologist! (He looked surprised, asked what for, and looked surprised again when I said, "Because I have Fibromyalgia..." Yup. Seriously. That's why I took my records with my original diagnosis of FM from back in 2002.)
They can take care of all my meds, and hopefully I won't have to go back there for a VERY long time! (Fingers crossed.)
I so wish I could go in that mosh pit tomorrow. Concerts used to be such a release for me...Ah, well, I'm just happy to be going :)
I just had a compelling urge to karate-kick CFS. But, unfortunately for me, it's invisible! And not only that, it's an illness, so you really can't, I mean, maybe if it was Cancer or something, you could remove a tumor, put it in a jar, and do it, or the karate-kick could take the form of radiation or chemo, but, that's probably not gonna do much here.
I guess I was just upset. I needed to do some research online, and my father wasn't home with his laptop, and my body was sending me the really annoying, barely perceptible but extremely insistent message that I should lie DOWN! ASAP! And I was trying to keep on doing what I was doing, but I couldn't focus, and I kept feeling worse. That's Orthostatic Intolerance for ya.
Grrr. Finally, very frazzled, I got up and lay down. But the frazzled wasn't going away, and I just kept wanting to karate-kick SOMETHING. I couldn't hold still, and I was just so frustrated. Finally a little desperate and unable to lie still, I put on some meditation music.
That has been my saving grace lately, meditation music. Something about those frequencies of sound seem to penetrate and resonate deep within me, and smooth out all the chi that is wrinkled, depleted, or bouncing off the wall. Okay, so I may have taken a Xanax as well. It seems to be a typical thing with me. I get worn out, and I know the only thing that will help is rest, but my mind is still bouncing off the wall, and I can't rest, I keep thinking of things I wanted to get done, or feeling like I should be multi-tasking. Being productive used to be my favorite thing, what made me ME. And now it seems it just drives me slightly mad. Or maybe it's what keeps me going? I can't seem to decide. This week, it seems like I've gotten a whole lotta nothing done. I can't seem to focus. And then, I get tired before I've managed to redirect and refocus to get anything done...I was feeling a bit better after laying there, listening to the music, half conscious, for who knows, an hour or so...
Then I went to the doctor. This doctor, he drives me crazy. I go in, and he asks me what I want him to do for me, like seriously. Not like, "Hi there, what can I do for you today hun?" But I tell him what's wrong, and then he asks me, "Okay, so what would you like me to do?" "Umm, I I was kinda hoping YOU could tell me that?"
(I had a UTI.)
Last time I was there, because he told me to follow up on some test results (for the third week in row, they'd always mess up, or not do them all, or...) And he asks me, "So what medication would you like refilled?"
I look at him, kinda confused...
"Vicodin?" he offers.
I tilt my head and look at him, and say, "Uh...no...that's okay..."
(Did I mention when I went online to check this guy out, there was a blurb from someone saying how he seems willing to give out prescriptions like candy?) I only went because he was one of only two doctors locally who take the County Sponsored insurance plan I'm on...and I already didn't like the other one. Her English sucked.
So I'm thinking, okay, so everytime I go he wants to run tests, take the same x-rays over and over again, and he offerred me Vicodin and I refused. So the last thing I figured I'd have to deal with is him accusing me of drug-seeking...
Well, not quite that, just when I asked him for the scrips, he told me these drugs were addictive, and if I wasn't already I would be addicted to them, and didn't let me get a word in edge-wise until he asked me what I would do if he didn't give them to me...(I'm going to a concert tomorrow, a very big deal for me, and one of the situations where I just take medication because I KNOW I'll be needing it...I rarely take hardcore pain killers when I'm at home, mainly, I use them for when I have to go somewhere, which is why 30 pills last me about 3 months...Normal dosage is 1 every 4 hours, and if I take 2 in one day it's a rare occurence, last time, it was pain from the UTI that wouldn't leave and only after Tylenol ceased to cut it.)
Haha, so do I sound defensive already?
You bet. I live with an illness nobody understands and that (at least at the moment) is invisible to the eye of any casual observer, but that a specialist was quoted in the New York Times as saying that she would prefer to have AIDS than have, because her AIDS patients are healthier than her CFS patients, and most of them can work and have a normal life, while the CFS patients mostly can't!
(Incidentally, I have to agree...If you have AIDS there are so many programs, too. Programs to give you medical care for it, programs to help you pay for your medications, programs to give you a place to live...and if you do get full-blown AIDS, I don't really see a Disability judge turning you away, saying you are too young, or your doctor is being overly generous in his assessment of your disability. So...)
Okay, sorry, this is beginning to sound like a whine-fest. I said I got defensive!
Everyone's going all crazy about this XMRV virus...but at this point I'm afraid to even get my hopes up. Besides, I already know I have another virus, and I can't get the medication for THAT, because I can't afford it. Incidentally, it's an AIDS and Hepatitis med. And if you have AIDS, and can't afford it, they'll hook you up. But if not, you're outta luck.
As for my doctor, I explained to him that I hadn't taken the Vicodin in two weeks, and hadn't experienced any withdrawals, plus, 30 pills lasts me at least a couple of months, and the other med, I take only at night and have gone without for 3 nights, at worst, I got to sleep a bit later, and if he liked I could bring in my medical records so he could see that I take them only as much as I say, and call my previous doctors. Grrr.
How ironic that he was offering me pain meds I didn't need last time!?!
Thank goodness the other reason for my visit was to get a referral to a Rheumatologist! (He looked surprised, asked what for, and looked surprised again when I said, "Because I have Fibromyalgia..." Yup. Seriously. That's why I took my records with my original diagnosis of FM from back in 2002.)
They can take care of all my meds, and hopefully I won't have to go back there for a VERY long time! (Fingers crossed.)
I so wish I could go in that mosh pit tomorrow. Concerts used to be such a release for me...Ah, well, I'm just happy to be going :)
Friday, January 2, 2009
The Evil of Heels, 48-hour Backlash, on Painkillers, and Financial Frustrations
Happy New Year everyone!
I somehow managed to get out to celebrate a bit. I got superstitious after feeling too sick last year, and having the year from HELL. (Had to give up my apartment, moved in with a bitchy roommate, barely made it through school, had to move to a Sr. Community an hour away from the life I'd so painstakingly begun to form, and lost another appeal with the SSA for Disability Insurance. And that was just the major stuff.)
So I did get out this year, though I almost felt too ill at the last minute, but that was because my allergies were acting up. (Definitely allergic to dogs now too, as it turns out. Another consequence of CFS whacking out my immune system.)
I had a pretty good time, especially after the alcohol kicked in. For some reason, alcohol relaxes my muscles, numbs any pain completely, and gives me a ton of energy, all of which makes me very happy while it lasts. It's the next day that it usually kills me. I don't get a hangover, at least not like normal people.
Most of the damage seems to come from the fact that I don't feel the pain. So whereas if I had been sober, I wouldn't have been able to stand even standing in my inch & a half heels for long (I actually did have to sit down after about 5 minutes because my legs were getting shaky and hurting.) After a drink or two, none of that matters. I even had the gall to DANCE a bit in them. (How can you not have dancing at a holiday party?)
Now, I thought by some miracle, I'd escaped the consequences of my actions when I woke up feeling just a little sore today. (For some reason the worst pain of all comes the 2nd day after the offending activity, whether it be pushing a little too hard at the gym, dancing, or slipping & falling.) But by this evening I was feeling like I'd been hit by a truck.
But thank goodness for pain medicine. Until this past year, I hardly ever took it when I didn't have something absolutely pressing to do, usually if I was at home, I'd do everything else possible. But right now, my mood is a little precarious, and the hellishness of a severe flare can push me over to THE DARK SIDE.
Besides. One of the biggest reasons for my enduring the pain was the little voices in my head of people who did not approve of my taking pain medication. Usually people who couldn't take it themselves for one reason or another. (Their body's intolerance to it, or former addiction.)
I've learned to trust myself though, and especially as my pain levels have steadily increased w/the lack of access to chiropractic & other alternative care, I don't need to listen to those little voices anymore because they just don't make sense, and I don't need to justify myself to them.
I knew I'd made the right decision when I found myself making dinner instead of desperately wiggling on my massage chair trying to get all the bad spots and overheating myself to misery on my heating pad, and found my mood lifting back up as I no longer felt the mood crushing effects of my connective tissue burning and aching.
(I'd also carried a heavy backpack to my car, against my better judgment, so my whole upper body was aching too.)
And a good thing, too, because I soon found out that apparently my car insurance has been lapsed for weeks now. It's enough to make me want to work myself into the ground if I have to, just so I have some control over things like that.
I started wondering if maybe I should've pushed harder and tried to do things even if I was feeling super sick, instead of worrying more about taking care of myself at the moment. I tell myself I'm not going back to work because my body just can't take it, I'll just end up sicker. But then stuff like this happens, and I ask myself if maybe I should do it anyhow, because the stress of not knowing if things are being handled as promised is just about as bad...
Of course, then I realize I have been doing the best I can already. It would take too little time to work myself into the ground, not enough time to really make a difference or make it worthwhile, so I better just hang in there for now...
It's okay, I'm still hanging on to my optimism.
I somehow managed to get out to celebrate a bit. I got superstitious after feeling too sick last year, and having the year from HELL. (Had to give up my apartment, moved in with a bitchy roommate, barely made it through school, had to move to a Sr. Community an hour away from the life I'd so painstakingly begun to form, and lost another appeal with the SSA for Disability Insurance. And that was just the major stuff.)
So I did get out this year, though I almost felt too ill at the last minute, but that was because my allergies were acting up. (Definitely allergic to dogs now too, as it turns out. Another consequence of CFS whacking out my immune system.)
I had a pretty good time, especially after the alcohol kicked in. For some reason, alcohol relaxes my muscles, numbs any pain completely, and gives me a ton of energy, all of which makes me very happy while it lasts. It's the next day that it usually kills me. I don't get a hangover, at least not like normal people.
Most of the damage seems to come from the fact that I don't feel the pain. So whereas if I had been sober, I wouldn't have been able to stand even standing in my inch & a half heels for long (I actually did have to sit down after about 5 minutes because my legs were getting shaky and hurting.) After a drink or two, none of that matters. I even had the gall to DANCE a bit in them. (How can you not have dancing at a holiday party?)
Now, I thought by some miracle, I'd escaped the consequences of my actions when I woke up feeling just a little sore today. (For some reason the worst pain of all comes the 2nd day after the offending activity, whether it be pushing a little too hard at the gym, dancing, or slipping & falling.) But by this evening I was feeling like I'd been hit by a truck.
But thank goodness for pain medicine. Until this past year, I hardly ever took it when I didn't have something absolutely pressing to do, usually if I was at home, I'd do everything else possible. But right now, my mood is a little precarious, and the hellishness of a severe flare can push me over to THE DARK SIDE.
Besides. One of the biggest reasons for my enduring the pain was the little voices in my head of people who did not approve of my taking pain medication. Usually people who couldn't take it themselves for one reason or another. (Their body's intolerance to it, or former addiction.)
I've learned to trust myself though, and especially as my pain levels have steadily increased w/the lack of access to chiropractic & other alternative care, I don't need to listen to those little voices anymore because they just don't make sense, and I don't need to justify myself to them.
I knew I'd made the right decision when I found myself making dinner instead of desperately wiggling on my massage chair trying to get all the bad spots and overheating myself to misery on my heating pad, and found my mood lifting back up as I no longer felt the mood crushing effects of my connective tissue burning and aching.
(I'd also carried a heavy backpack to my car, against my better judgment, so my whole upper body was aching too.)
And a good thing, too, because I soon found out that apparently my car insurance has been lapsed for weeks now. It's enough to make me want to work myself into the ground if I have to, just so I have some control over things like that.
I started wondering if maybe I should've pushed harder and tried to do things even if I was feeling super sick, instead of worrying more about taking care of myself at the moment. I tell myself I'm not going back to work because my body just can't take it, I'll just end up sicker. But then stuff like this happens, and I ask myself if maybe I should do it anyhow, because the stress of not knowing if things are being handled as promised is just about as bad...
Of course, then I realize I have been doing the best I can already. It would take too little time to work myself into the ground, not enough time to really make a difference or make it worthwhile, so I better just hang in there for now...
It's okay, I'm still hanging on to my optimism.
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