Posts Tagged ‘fibromyalgia’

i would like to say that this is another journey i don’t want to see come to an end but i’d be lying. detoxing off of my psych meds has made my top three list of most difficult things to do. but to think that it ends here would be…well let’s say getting the drugs out of the system is a only a portion and beginning of journey.

as i learned from getting sober…more than once…there are a lot of life skills i need to acquire, to make up for what i was depending on the drugs to do. i was lucky in that i’ve had a great foundation and have worked with some people who’ve really put me to work! i see so many people living with the illusion that the drugs/meds are “the therapy”. gosh folks, if we don’t know by now, we’ll never learn…that they are only a brief/portion means to an end. they can help clear things up and and make a newly diagnosed person a little more capable of coping (which in the beginning can feel like a lot). but if you do not develop a good set of life skills to depend on…you will start heading off in an even worse direction. and, having mental illness, depression, bipolar, fibromyalgia, chronic pain, or any chronic disorder…we shouldn’t feel singled out as having an added burden of the need to learn these skills…granted we might have some more work to do, but all people would be wise, to be conscious of these simple, almost obvious skills that need to be created and sharpened.

i just have to say, that being on line with this journey has been one the greatest, free, adjunct therapies i could recommend. i’ve been able to put my stuff out there, and receive input. i’ve had the chance to read other people’s experiences and tips and have good exchanges of information and support! the support to gather more information and research…to be an informed consumer and participant in managing my life has been invaluable.

but, my journey is just beginning. the meds may be gone by the weekend but learning to live with out them is the next…the real part of the journey. i got off these meds so my life would be better and now it is time to set my sights on that process. i will still have the lyrica to contend with, but one thing at a time…doing to much at one time was part of the mess i got into.

in the past i’ve discussed various things that i’ve been picking up over the years and past months…such things to look at as: laughter, spirituality, brain exercises for mental acuity, using support groups (blogging), etc…there is a lot of discussion about diet, exercise and supplements in everyone’s blogs. all of these things are great life skills to work on that make our life’s great. i am still being exposed to more books and practices that support healthy living. that learning, is never ending.

i’m really looking forward to continuing my journey off meds both on line as well as…in my life. i do feel reeeeally good! (allergies and fibro…i can deal with that) there is much more to come thanks to being able to get off my meds (fellow bloggers), staying sober (AA), good living (counselor, friends, neighbors) and spiritual living (i should go back to church).

so moving forward here. my next effort is getting back into grad school. they could always just say “no”, but they could say yes (maybe with provisions)…but what ever happens…happens. as i get more busy with those ventures i will have less time to write here. but, my writing here is very important to me so, it is something that has to go on the list of “things to do”. if i don’t post much in a week it is likely because i’m doing well. of course when i’m having a more difficult day, i tend to not write either, but let’s go with the thought that i’m not here, because i’m out there putting the metal to the test!

this is just another beginning!

peace out!

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so many of us that have lived with a diagnosis of mental illness or chronic disorders such as fibromyalgia and chronic pain also suffer from a loss of mental acuity and function. it can be the result of long term use of psych meds, pain meds, benzodiazapines, etc….it can also result simply from atrophy, attributed to a lack of use…

in considering the horrible side effects of the drugs we have taken and are now withdrawing from, many of us have turned to suppliments and certain dietary guidelines along with excercise, meditation and various holistic approaches to being well. probably one of the most disconcerting side effects of the medication and withdrawal is what happens to our mental acuity and functioning. we become fuzzy, confused, struggle with memory, have “brain zaps”, our vision is poor, speach is difficult…our hearing, smell and taste is off and coordination is challenged…the list can be lengthy. and while we take various suppliments and eat certain diets, etc. all of which can be expensive, but, important to support healthier functioning of our body…there is another thing we rarely discuss that is free and freeing. exercising our brains!

yes, our neurological system needs a good workout on a regular basis, just as our muscular, skeletal and cardiovascular systems do. when we’re depressed and struggling with the horrible mental side effects our first reaction is to isolate and shut down. were no longer receiving any stimulus or forced to use our neurological system in the way we used to, in day to day living. comming out of “hibernation”, as i call it, is yet another difficult thing to navigate. but how we manage that, determines our whole interaction with the outside world. stop and think about all of the tasks you did or would normally do just in your morning routine. all the interactions being transacted…comming and going, from your system and the world around you! if you’ve shut down and you’re simply going from the bed to the sofa, sleeping all day or watching tv, maybe eating something but not really cooking, avoiding the phone and conversations…just barely existing (like me)…well with all that, (over more than a years time) you can probably see your muscles atrophy…i sure did…and, i lost bone density! i mean, the physical evidence of being sedintary or functioning at a very reduced rate, is overwhelming to look at.

now what do you think has been happening to your brain?

well, not only can the trauma from the meds, but becomming sedintary and barely functioning also, wastes away our brains. and, no wonder we’re foggy, have poor memory, can’t communicate well, etc! i’m struggling with it, as may be evidence in my writing! i’m embarrassed to have to mingle with people, talk on the phone and worst even…speaking in front of large groups! it’s a horrible struggle. few can imagine the mental gymnastics you’re doing to compensate! yes, i have (in the last week and few months) spoken in front of large groups…i’m in AA so even in a regular meeting…it proceeds around the room of 20 or so and it’s soon my turn! gasp! i mess up, loose my train of thought…but i’ve told people what’s going on with my meds and detox. i just get to a point where i’m lost so i laugh, flip my hand up  and pass! BUT I TRIED…that’s the important part of the exercise. simple social gatherings, time with friends and group sessions offer us opportunities to exercise our minds. (sound like a no brainer?) hell, i’ve even woven and stumbled my way through two leads in front of groups 15 and 50! 

those opportunities and others are my chance to share this experience with others. i get to show them first hand, what has happened and why.

i have so many encounters now, and i am “hyper-aware” of my neurological processes! (yet another mental obsession…AAs will get that one) facing all these interactions, as i’m trying to make my way back in to the world…well i just take a deep breath when i leave the house every day, and i don’t hold it! i take a lot of deep breaths all day (it slows me down, gives me a pause).

but it’s in the doing that we rehabilitate ourselves. our mental processing will improve if we use it and take it out to exercise too! no, don’t leave your brain behind…it may be a scattered mess and you may feel a shell of yourself…but with increased use you can see parts of you slowly return. it’s really no different than if you received a traumatic brain injury in an accident…consider what persons with TBI go through, to get rehabed. well, we kind of have to follow some of that model, i’m afraid. there is no pill or vitamin that is going to do it all. hell that’s how we got in the trouble we’re in with these meds…someone told us to take this pill and our bipolar, depression, pain….would get better. doesn’t work that way does it?  to even really deal with all of our problems, meds alone could not work. we would have to incorporate such techniques as behaviour modification, thought changing…they all require work….that dirty four letter word…work. we are not lazy people and in fact the majority of us are quite intelligent by all measures. so we’ve been misled and the social and medical communities don’t have enough funds or manpower to assist us 100%. well, if we want to get there…it is evidence to me by observing the blogging community…that the initiative must lie with in…each of us. we must draw upon what we can create and develop ourselves…we can read the research on the wall….”they” are not going to provide extra help for us, and things are getting worse.

so how do we repair our shattered minds. many very good therapies, approaches suggestions have been shared in the bloggesphere, and i’ve picked up on a lot for my own use! i love it…people helping people…awesome. this is how it works!

but back to the mind….i wander and digress (surprised?).  well i’m starting here…a simple search for “brain exercises”: http://www.ask.com/web?qsrc=178&o=0&l=dir&dm=&q=brain%20exercises just look! there’s a lot being marketed to this topic, but you can find resources that are free.

right off i find a simple article from webmd:

Train Your Brain With Exercise

“Exercise is really for the brain, not the body. It affects mood, vitality, alertness, and feelings of well-being.” to read more: http://www.webmd.com/fitness-exercise/features/train-brain-exercise

here is an article that says exactly what i’m trying to convey…but they have some creative and simple exercises you can incorporate into your daily routine:

Reviewer Name: Ferguson, Monica O. M.D.
Date Last Reviewed: 12-06-2005
Published Date: 02-06-2008

Just as cross-training helps you maintain physical fitness, using your brain in a variety of ways can help you keep your mental fitness, strength and flexibility strong.

“Presenting the brain with non-routine or unexpected experiences using combinations of your physical senses — vision, smell, touch, taste and hearing — keeps your thinking and perception active and growing,” says Lawrence C. Katz, Ph.D., professor of neurobiology at Duke University Medical School in Durham, NC, and coauthor of Keep Your Brain Alive. “It stimulates patterns of neural activity that create more connections between different brain areas and causes nerve cells to produce additional brain nutrients.”

Dr. Katz calls these brain-stimulating exercises “neurobics.” “Just like aerobic exercises emphasize different muscle groups to enhance coordination and flexibility, neurobic exercises involve activating many different brain areas to increase the range of mental motion,” he says. “They result in a mind that’s fit to meet various challenges — whether it’s remembering a name, mastering a new computer program or staying creative in your work.” to read more: http://www.healthline.com/sw/wl-neurobics-brain-exercises-for-on-the-job

ok so my formatting skills…don’t have them, but hang with me here…

here’s a blog: “Your window into the emerging field of science-based Brain Fitness, its implications for Health & Wellness, Education, Leadership, and more.”  http://www.sharpbrains.com/blog/ this may give you some interesting links about the brain and how we maintain it and improve it!

now when i mentioned exercising the brain i was talking about using techniques that are like “brain teasers” and other literal “brain exercises”. but this new york times article discusses how regular physical exercise can enhance brain function:

“Scientists have suspected for decades that exercise, particularly regular aerobic exercise, can affect the brain. But they could only speculate as to how. Now an expanding body of research shows that exercise can improve the performance of the brain by boosting memory and cognitive processing speed. Exercise can, in fact, create a stronger, faster brain. “

to read more: http://www.nytimes.com/2007/08/19/sports/playmagazine/0819play-brain.html

i checked out AARP (ok, i’m only 44, but who would know better than AARP, about this issue) and when i was talking about simple social interactions as being a good exercise, here goes:

“Social Connections and Brain Health

A major public-health study involving more than 116,000 participants found that people with strong relationships had less mental decline and lived more active, pain-free lives without physical limitations.

Other studies suggest that people with the most limited social connections are twice as likely to die over a given period than those with the widest social networks. Many experts believe that social isolation may create a chronically stressful condition that accelerates aging.”

to read more: http://www.aarp.org/health/brain/takingcontrol/stay_socially_connected.html

even if things are not specific…geared towards “off meds and detoxing”…for the most part, with in this topic,  they translate.

if i do too much research on this i take away an important exercise you can do to help your brain rehab from this horrible storm it’s weathered! time to get the fog out…

peace out!

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looking at how withdrawal can trigger other disorders like fibromyalgia and considering how to perceive and treat the symptoms. trying to find balance and watching how i can even abuse my own “natural highs”. laughter is a great medicine. remembering the freedoms and habits we came by naturally as children can aid us in how to re develop lost habits that will help us as adults. how does everyone navigate their mazes of healthy living?

i’ve been out trying to catch up on all that has been let slide, while the withdrawal process has been a little too rough to manage well. this spring weather and sun has been great medicine. and…i’m so sick of being stuck inside over the winter, not feeling well, that i just have to be out there in the sun! but i’m at .25mg of klonopin and hanging in there with the lyrica (and yes, the lyrica is a bit of a problem for me). i’m glad to say that i’m substance free, barring those two! (off lamictal, neurontin and wellbutrin to name a few) it’s progress! soon they’ll be gone too.

since i have my withdrawal tied into a re appearance of my fibromyalgia…navigating between what is fibro and what’s benzo withdrawal has seemed difficult. i guess i’m feeling that it doesn’t matter which is causing symptoms since they’re nearly identical. the protocol for managing either of them is really the same. so i feel trying to fritter away over the details may be time just…frittered away.

has anyone experienced such co existing conditions? i think the “trauma” of withdrawal triggered the fibro, as it might trigger other similar conditions (chronic pain, CFS). i’ve read a lot of research on fibro and usually there is a “traumatic” event (illness, loss, etc) that precipitates the initial onset of fibro and once you have fibro…such events will trigger a reappearance of symptoms.

since my ultimate goal is to be free of pharmaceutical drugs…i don’t want to follow my dr.s’ impulse to pull out the prescription pad at the appearance of a new symptom. fibro and benzo withdrawal host a variety of shared symptoms…that’s just how it is. but, we all seem to be on the same page now and my docs and i seem to agree that, for me, consistently working towards lifestyle adjustments are the best medicine.

maintaining momentum is hard. there are many times that i don’t feel i have the energy, or i have too much pain to deal with the physical therapy, staying on a certain nutritional path and doing all that i need to do to support myself. but when i can get myself on a roll…create a momentum from the time i wake up (yes, personal velocity!)…and maintain it, i do better. yes it’s a struggle. i get very frustrated as my symptoms and treatment pull me in seemingly opposite directions at times. it takes everything i have, to get going in the right direction and maintain it. i often want to stop and nap, but if i slow down part way through the day, i will find myself down for the count, feeling achy and bad. i need to maintain my momentum and use my personal velocity techniques. (the physics of the mind…a great topic!)

finding balance is hard. when i feel good…i really feel good (compared to having felt horrible for months)…i just want to go all out and…for example: i’m walking with a friend…we’re naturally high energy and kind of competitive…the walk will turn into walk/jog…then walk/run and of course it ends in a few races. i’m flying and laughing and it feels just so darn freeing and great! but then…there are the consequences of “over doing it”. i will usually go down for the count, for a day or even two for even a small burst of exertion! i guess it’s similar to being on a restricted diet for diabetes and taking a taste of a desert…well then it tastes so good you eat the whole thing and boom! the sugar high and then crash. well, and the temptation of anything mildly addicting as even exercise can be is hard to resist…as a bipolar…moderation is hard word to pull into my vocabulary…i love my “highs”…i’m also a long recovering alcoholic and addict and believe me…that also lends to my nature of “excess and exploitation”. yes, i can be addicted and abuse my own “feel good” chemicals that my body generates. i can trip my body into full production and ride that puppy! harmless? in excess, actually it does hurt me. abusing my own biological highs will drag me down. and i know a lot of people with similar histories to mine discover and exploit…for example…the “runners high”. another interesting topic to chase!

laughter helps pain, depression, immune system, etc. at least laughing, which helps my pain and depression immensely,  has no ill side effects (for an average person, not post surgery etc.). i can laugh to excess…well except for being seen as obnoxious by those not partaking…there really is nothing bad that can come of excessive laughing. so, laughing is a luxury i can indulge in. i do make an effort to laugh and my friends know the routine. i know all the good places to score a laugh from. i had to take a friend to “evil wal mart” the other day. if you go to the childrens’ toy section…seek out toys like “tickle me elmo”…set off as many as you can. juvenile…yes. but in matters such as these…the need to score a laugh…who cares what anyone thinks! it is never right to score laughter at another person’s expense (it’s not good for your karma, etc). no, no one or thing should be damaged in the process. well, some things can be damaged…i had a pile of old records that had been left in my garage…they’d been water damaged…i had brought my bb gun over and was shooting cans (yes, juvinile hill billy entertainment), but then we decided to play skeet with the records. i shouted “pull”, my friend tossed an album and i shot it in the center area! we laughed and played album skeet for awhile. the album i shot was an old grateful dead album. well…it was dead already.

finding the good, healthy habits in my childhood. i think of things that made me laugh when i was a child. it seems children laugh more often and more freely than adults do. it’s another healthy skill we loose as adults. we’re so groomed to behave ourselves and act like adults that it can smother the very healthful skills that can keep us well. (belly breathing is another skill well loose as we “mature”.)

yes, thinking back to my younger years, unfolds many answers to health in my…gulp…middle age.

so, that’s where the bb gun came from…my youth. when we were younger we spent a lot of time in the northwoods of wisconsin. our parents would be inside playing cards, talking and drinking beer. we’d go in and collect cans as they were emptied, put them up on the log pile and shoot them with a bb gun. as long as the cans kept coming we had a good time. it doesn’t matter that there was always a great presence of alcohol and drinking and thus the behavior issues…darn it the cans and shooting are what i’m going to remember! i may have not had the greatest childhood but i do have many good times i can refer to. looking back at my childhood in this way also helps me “reframe” what has been such a sad portion of my life. i’m learning to pull these great positive things from what was a dark and murky area. gradually, my childhood is becomming a wonderful resource! cool side effect.

looking at how withdrawal can trigger other disorders like fibromyalgia and considering how to perceive and treat the symptoms. i look towards embracing my personal velocity to hold on to my momentum which will carry me through the day. trying to find balance and watching how i can even abuse my own “natural highs”. laughter is a great medicine. remembering the freedoms and habits we came by naturally as children can aid us in how to re develop lost habits that will help us as adults.

just how does everyone else find their way through the mazes that can lead to healthy living?

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well…i haven’t written or really been on line for the last few days. i’m a bit rushed this morning but, i guess when you get to feeling better for a bit, things get busy as you paddle to catch up. and there’s just the catching up inspite of not feeling great. the darn fibro alone simply wears on me, trying to make all my appointments and obligations. when i get home i can barely focus to read, let alone write.

i still maintain that getting off the benzos is a good thing…it’s means so much to be completely clean and then, “on top” of what is going into my body and how it’s affecting me.  while i want to rush and just dump this last .25 mgs, i will have to try to be patient…this weekend i’ll cut to about .13mgs, then i will be off the benzo/klonopin by the next weekend. there will be “aftershocks” even after the final dose…but i’m familiar with that route. being a recovering alcoholic who was addicted to pain meds for years as well, has offered me many “benefits” in this arena…my personal experience and mostly those of my peers!

i have several friends who’ve successfully detoxed off pmeds and are living good lives now. they inspire me.

i will be off all of my meds when i take that last klonopin in less than 2 weeks! that means no more: lamictal, wellbutrin, neurontin and klonopin as well as a mix of other prn meds.

geesh…the docs were all too willing to get me dosed up for over a decade…well two…but where did they go when i wanted help getting off an addicting benzodiazapine that was only being maintained…really…to avoid going through withdrawal. after the first couple of months the benzo was no longer providing the desired effect at 2-3mgs! i was hanging in some suspended place all of those years…the dose simply being like a “space holder”. attempts to go off did reveal symptoms…OF WITHDRAWAL! but the doc and all, had me convinced that those symptoms were from my “illness”, i needed to stay on the klonopin…and no one…NOT ONE professional ever suggested, strongly enough, that prolonged use of a benzo could be causing the chronic depression and fatigue i had succumbed to after a the first couple of years of adhering to my doctors orders with my meds! granted i was wresting with the fibro too…but all the more reason to get clean!

i know i may be moving fast compared to the schedule many others maintain. there are many who do agree with my approach and have done a similar program. but, i have no physician or practioner supporting and guiding what i’m doing (not by choice). the side effects roll in like the waves in the ocean…but there would be side effects if i went slow and i can’t see dealing with this discomfort for a year if i can bear with it all for about a total of no more than 12 weeks. yes that’s me sticking to a schedule even if it’s rough on my body. but staying on this drug is more damaging than getting off could ever be.

i take a lot of supportive measures with nutrition, meditation, exercise, laughter and friends. for me, i have to try to be on track by june to hopefully start back to classes

yes, our bodys do tend to follow their own schedule but…if i followed this darn body around i don’t know where i’d be! probably where i am, because that’s what i’ve been doing!

…so i rush…at this point no set of symptoms can trump what i deal with, having fibromyalgia, and thus set me back to changing my approach to my taper schedule. as i see it…if i back off my schedule…maintain or up the klonopin dsg to way-lay symptoms…i’m prolonging the inevitable. i’m already sick and draging, so what’s a little more if i can have this over with in as timely a maner as possible. i’ve lost so many years and time is precious.

 it’s been a rough and bumpy ride. the days are unpredictable packages of fog, fritz, fatigue and pain, punctuated with a clarity that motivates me to get clean. i’m so grateful to be able to detox…

many won’t have the chance to detox for a variety of reasons.

rough as detox is…it is a gift.

there is no pain-free, side effect free, way to withdraw from anything! i know this from experience…mine and other’s.

i have had many good hours but few completely good days. when i feel good i have a habit of “binging” on my available energy and lack of pain. of course the flip side is that i get wiped out, and feel the “hurt” of my fibro. i think the lyrica is being helpful, the most severe pain symptoms have abated, but i fight the fog and jittery feelings (which can be debilitating).

i don’t want to mess with the lyrica right now because the only thing i’m changing for now, is the decreasing doses of klonopin. a few weeks after the klonopin is gone i’ll work with my physician to tweek the lyrica and make decisions about managing my fibro. with the flood of symptoms i have from detox it’s hard to weed out which symptom is attributed to detox and which belongs to the fibro. oh, lest we forget this issue of bipolar… so one thing at a time.

my driving reason for wanting off all of my pmeds was the crazy overlap and layering of drugs that led me to where i just couldn’t tell what emotions and situations were me or my meds!

from now on the motto is to “keep it very simple and stay the course”.

and for now,

peace out!

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     so far, i’m feeling a bit better today. i messed around with the dosage on my lyrica starting wednesday. i was feeling like i’d drank 2 pots of coffee…very uncomfortable…so i began cutting back a bit and…well, maybe the bottom fell out…but i also wonder if being so tightly wound for so many weeks may have not just worn me down…a little of both? the pain was comming back as i lessened the dose of lyrica…physical therapy was tough too. i pushed my dose back up last night.  gosh was i weak!  i’m holding steady at .5mg klonopin, but that comes down to apx 36 mg.s tonight.
      i fell asleep when i got back from town. but when i got home, it was so nice to have msgs from people who were concerned and it was nice to know people cared…i had gone to an AA mtg but just couldn’t make it to staying and going out to dinner (which i always do). having to back down because i was not feeling well was really a hard thing to do…i just try so hard to never let how i’m feeling come up or interfere. is that stoic or stupid?
     this sharing…that i’m not doing well or not feeling well…it is really hard for me. it’s hard to ask for help and it’s hard to let people help. that attitude has been a long time in the making. when i was young…if i said i wasn’t feeling well that was met with “you’re such a hypochondriac” and “stop trying to get attention”…so i stopped…got tough and learned to buck it up! it always felt like i had to be well or together so everyone else could be falling apart and sick. i mean someone had to take care of the cooking and cleaning! i never, never asked them for help…they wouldn’t have been there if i did. so…you live and you learn…some really unhealthy things.
       living quite far from town and my friends…well it’s a big deal for them to come all the way out here (esp. now with the gas prices)…everyone i know is long distance call from here. yes, if you’re about a mile from here, it’s a long distance call! so that whole long distance drive/call thing is an added barrier. (in the back of my mind besides my personal issue about sharing what’s really going on and asking for help.) “i can’t impose on people because the drive or calls would be too much”…that’s an easy out!
     the insane thing is that…my circle of friends is based on helping others (AA) and i really love helping others. but allowing people to help me…and maybe really allowing people to know me…i’m insecure that way. i guess i only feel people will be around if i’m needed or being useful. i believe there is a huge part of me that feels, if i’m needy people won’t want to be around me. yes, there are some big self-esteem issues flying around here…the pink elephant in the room! i know how good it feels to have someone ask you for help, and to be able to help. why can’t i give that opportunity to the people around me…even my counselor! some of it is a control issue…accepting help also means accepting advice and doing what others tell you to do.
     now, most of the people who i would talk with, have excellent advice…they are wise and have a lot of experience. would asking them for help, and doing what they tell me to do, be fatal?!  not likely…in fact, i’m sure most people’s advice to me, would be better/healthier than, the advice i sit around giving myself most of the time. by isolating this way, i live in a vacuum and that is not conducive to growth. i’ve always prided myself on learning, growing and…being open minded. but damn can i be a stubborn, closed-minded creature!
      it’s embarrassing to admit but, that is being so much like my family, who i loath. yes…i am a lot like them…in those regards. stubborn, and closed-minded. yuck, blagh, aarrghh…that was awful to say…but being honest here…that’s what i’m working towards. (i’ve also seen my family, and others, develop disabling issues with “learned helplessness”…having ailments and problems become a means of getting attention…that has turned me off a lot. i hate soap operas.)
     yes, letting go of some of the control i’ve taken over my life (that has overtaken my life) , and being more honest in the one area that i am in the most denial and dishonest about…my health and energy…that’s what needs work!
     this thing about being alone…it can be a hard thing to become comfortable with. normally, i love being alone quite a lot and rarely think of it. i’ve been running this farm over 11 years alone and it’s become a way of life. the last time i was married was over 15 years ago, and that was brief. most of the time it is a good life. it’s the “being alone” when i’m getting really sick, or the sickness is dragging along that…well, when you’re not feeling well…everything in the world that is remotely upsetting seems to come to mind and become magnified! but during an average to good day…don’t think about being alone at all. i prefer it (considering what some of my options where over the years!). besides, i have 4 dogs, a cat and 3 horses that are the best therapy and company, most of the time!
     it’s good to find friends and comrades in many places…even far away. the internet has been a life saver, as winters especially, can become very isolating (besides the illnesses). well it’s a small town here, and it’s also nice to know people who are not from here…for so many reasons.
      writing this blog is also helping me to see some of these really disabling issues…as writing this has also led me to read other people’s blogs and share…people have been awsome and the reaching out from others here is carrying over into how i’m living my “offline” life! thank you dear blogshpere friends…you are changing my life.
     oh gosh….feeling held back from chronic illness, pain, these meds,…it just gets really getting old sometimes. but…onward and upward (LOL).
     today i will tell someone how i’m really feeling and ask for help.
peace out!






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today i thought i’d just share a letter i wrote to my counselor this morning…maybe you can relate to it and maybe it’s really scattered and makes no sense but…this is one of those rough mornings….

hi d.,
i’m slow to getting around to things, but i’m sending you this e-mail so you have my address.
i’m struggling a bit today…no a lot…i just have such bad morning anxiety and it may be the meds and withdrawal. i’ve been trying to navigate this on my own and it’s just maybe a bit too much. some days i feel very good about what i’m doing then the mornings come and the anxiety and i get very frustrated and wish i could atleast cry and i can’t.
i’m so sure that getting a break from the meds is something i need…but when i hit these low points…which i’m sure most people do…i get a sort of panic. i guess the most difficult thing i’m dealing with is the aloneness of all of this. even though i do my blog and communicate with the other people trying to withdrawal…the futility of what they’re experiencing is not what i want to have going on for a protracted period of time! who does. i mean…i’ve been living with this same battle of mind and body that has way laid so much of my life already…i just can’t see what i’ve been living, how we’re living…being the story of the rest of my life! it just seems overwhelming for any of us to have to go through at times. i mean, basically, i think i’m a healthy person…after all these years i’m not convinced that i’m so sick that drugs are the only solution. i see a lot of people in AA get off the meds and do well. but the full lives i see people live, that enable them to do well…i can’t always pull myself up and do it all. the energy i’ve been running on is some crazy, disorganized kind of energy, that, while i appear to be doing well i’m not really able to tend to the “details” of my life as i need to.
maybe this wishy-washyness is part of getting off the benzos…but other people i’m talking with have health practitioners they can work with and i feel i’m really the only one who’s doing this on my own. no husband, no family…
i don’t know…it’s not feeling like such a good day today…well they’ve all been a little rough and when i’m finally around people i’m so happy to be with others that i don’t want to bog things down with my problems…but i go home and i’m alone with them, the emotions. there has to be a good balance. i will even have a bad habit of not sharing those not so good things with you when i come in because at that moment i will be feeling good and then everything will seem ok…for that time…
does any of this make any sense? i always feel very disorganized trying to talk about this and my anxiety is pretty high right now.
well i don’t think it’s a crisis…this is an ongoing issue…being “peachy” when i’m around people…even you as my counselor…then having these horrible times when no one is around. i really kick myself to pull through the rough spots…but even that gets old and i just want to…not…not do anything. i guess i had to bust myself and write this while i was going through one of those times because when i come in to see you i’ll feel…”just fine”.
just so you know an you can maybe pin me down on this one.
i started cutting back on my lyrica because i think the “crazy energy” is comming from that. as, a few friends who’d been put on lyrica shared about their anxiety and feeling like they’d had too much coffee etc.

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yesterday was an interesting day…i started off feeling pretty bad….fatigue, anxiety, brain zaps…but i was asked to give a lead so i had to pull it together and get into town in the later afternoon. i went to my women’s mtg (AA) and it was interesting. later i ran into a girl was having a very bad time dealing with her fibro and i went up and talked with her…we weaved through the usual and interesting thing…she mentioned the drugs she was on and said that a tiny amount of cymbalta had really helped her but then she mentioned the lyrica and i told her i was on that too. she said it was giving her tachicardia and anxiety type feelings…kind of like if you’d drank too much coffee! wow, i had to tell here that i had been having that problem too but that i was attributing it to detoxing off benzos. hmmmm, ok…then i gave another girl a ride to where i was going to give my lead and on the way we weaved through our med nightmares. we had both wrestled with lamictal and were comming off klonopin but then she said she’d been given lyrica (she wasn’t in on the previous conversation) and she said it made her feel like she’d drank too much coffee and i just blurted “me too!”. 

(aside here…fellow bloggers…what happened to the spell checker when they changed the format here? i reeeeally need it) 

so, this morning i opened my 150mg. lyrica and poured about half of it out…not the most exact way but my eye is pretty good and i can’t afford to get another prescription for 75’s right now. i know i won’t get a good reception if i say i want off so i’ve grown to avoid that discussion with my docs. but i don’t want to stay on this anymore.

i seem to see a trend in that, the more refined a drug is the worse the side effects seem to be. now i took neurontin (gabapentin, and lyrica is pregabalin…they’re related) and really had no lingering side effects (that i could notice) but it never made me real jittery like the lyrica. it could give me a lift at times but…so with all the bad press on lyrica…and i don’t have time to pull articles right now…

i want off my lyrica. since i’m in this rural and kinda underserved area and my docs are just not into my being off my meds i have to do what i can on my own. not medically sound but, around here the sound medical thing seems to be to load up on meds! so…i’ll be “unsound” for now. the worse thing that can happen (and i have well over 11 years of dealing with these drugs so…), is i won’t feel so super great…but anxiety and depression don’t freak me out and i have healthy ways of dealing with even extreme feelings…they’re not emotions…they are feelings from the meds, and for me…i can tell the difference.

worse comes to worse…i go to sleep…breath deep…go to my “special place” (guided imagery)…and sleep it off. i do some stretching, yoga and even when i feel like my hair’s going to fly off and my eyes pop out…i get outside, play with my dogs and throw out some laughs and “i love you”s. yes it’s the “fake it ’til you make it”, “behave your way into right thinking” and old “pull yourself up by your bootstraps” approach. (please bear with my tough gal stuff…things do get very bad for me too) but having few medical resources…being very familiar with my body and mind…having a lot of discipline in yoga, meditation etc., i can usually pull my “rough rider” approach to surviving this. i don’t expect others to do this and there’ve been times i can’t drag myself up to do either…but the alternatives are not good. yes i have my “whimpy” days when i curl up and sob and get angry at god…goodness have i had fights with my god. but, as my one friend tells me…”you have this can-do attitude” and i just barrel through things. i don’t expect others to have this sort of cowboy mentality and perhaps i don’t hope this for others either…

this attitude of mine came from years of abuse and being told by my parents that i “couldn’t be sick” (just not allowed)…i was a hypochondriac…”oh just stop complaining”. then there’s been a medical community that’s given me a similar reception at times…so what do you do? well if you mean to survive this crazy maze of life, and i started at an early age, i guess you cop an attitude like mine. i still keep to myself a lot. i’ve grown to embrace aspects of it. writing this blog is very out of character because (you don’t air your dirty laundy mentality) i tend to avoid admitting not being well or that i’m stumbling, i hide it from people as much as i can. i don’t call my sponsor when i should (AA). it leads to some isolation at times and i shouldn’t be so much that way. ya know…it’s probably ok for me to show up at my meetings looking like crap and dragging some days…when i feel like crap and i’m dragging…other people do it, and i guess it’s just part of being human and working through recovery…but that’s a hard pill for me to swallow!

i would have gladly accepted the help of a good doctor and i have had a few over the years. i think it’s great when people find a doc who works with them and they get help. having bad days and struggling is not a sign of weakness or failure…it comes with the territory. living with mental illness and then the meds is a very hard life at times. some tenderness and self-forgiveness…going easy on yourself is definately in line.

[please note:  this is aobut my experience and is by no means advice! if you have a doctor who will work with you…at all…use him/her.]

peace out!

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