Running out of steam—at least for now

My last personal update was tentatively optimistic. I don’t like posting when I feel like shit, but frankly, I feel like shit most of the time. I am chronically ill. That’s it. I said it. I have a chronic physical illness. It’s no joke. It’s seems undiagnosable and all I can attribute it to is withdrawal.

In the last few days I put out some emails to my benzo withdrawal groups. They are the biggest withdrawal groups out there. As far as I can tell any psychiatric drug withdrawal can be very similar. Many many people in this benzo group suffer from similar ailments to mine. Most notably fatigue so great you have to sit down every ten minutes. Sometimes I don’t make it ten minutes. For me the symptoms include the enervating fatigue, nausea, headaches which sometimes turn to migraines, (I’d never had a migraine before withdrawing) light and sound sensitivity which is sometimes quite severe and can lead to the headaches. Going to a movie in the theatre is almost impossible because of the noise at the beginning of movies. I have to bring earplugs and stand outside the theatre until the movie starts. And that feels like too much sometimes. Of course many times I can’t even watch TV. Especially shit like CNN with all the sensational bullcrap dramatic loud obnoxious music.

I don’t make commitments anymore except with my therapist. If I didn’t have my cottage/shack in town I wouldn’t make my appointments with her either. I tell anyone who wants to make plans with me that I will call them the morning of the day of the tentative plan. Most times I have to back out because I’m too sick.

One day I really wanted to get out. I wanted to go to this fun eclectic church in my area. My friend came to pick me up and I told her as I walked to the car hunched over with weakness that I was sick but determined to get out of the house. We got to the church. My friend parked a five minute walk away. I knew I couldn’t make it. I told my friend I’d wait in the car. I put the seat back and curled up in the car and lay there for an hour and a half while she went to the service. That was an all time low and my basic energy state fluctuates between that and good days when I can actually make it to the grocery store and stay out for about half an hour—those days feel like victories—of course it’s such a pathetic victory I hardly feel victorious.

I am not practicing radical acceptance. I guess I wasn’t particularly practicing it when I wrote that piece, but I am in desperate need of acceptance. But there is so much that is unacceptable. Not just the state of my health, but the state of the world. In my weakened state I suffer each time I hear about the state of all psychiatric patients and the psychiatric system, the state of health care, the crimes that big pharma commits—hell the crime that most major corporations commit—we are now entering a food shortage because ethanol, a fuel that does not help with global warming, is being pushed and valuable food crops are being forgone to grow corn which is turned into fuel—bad fuel that got hyped up for no particular good reason other than profit— the serious problem with global warming, our insane criminal foreign policy that kills people all over the world daily and has since the beginning of our history, racism, sexism, homophobia. We are one fucking hell of a mess and how can I help any cause in the world when I’m one fucking hell of a mess.

Why do I care about all this stuff. Why can’t I stick my head in the sand and worry about just myself like most of the people in America. Why do I read political blogs and feminist blogs and why am I on environmental and political email lists ad nauseum not to mention the endless lists on mental health? It all serves to disturb me. But I’ve always wanted to be a responsible citizen….I have to know. I have to know so I can DO something and damn right now I don’t know what I can do!!

My career was always a vocation. I chose my work with my heart. I worked with the dying, the homeless, the drug addicted and the mentally ill. I was engaged with work that made me feel I made a difference. Now I languish at home and do nothing for no one. I suppose if the world is going to implode it will do so with or with out me. This pathetic self absorption about my impotence is useless, not helpful, won’t change things.

I’m angry now, but not as angry as I’ve been. Things are changing. I targeted loved ones with my anger and I no longer do that. I am gaining perspective even if it’s hard to tell with this post. The burning embers of my anger will burn out and my soul will be left in ashes and then, perhaps then, I can begin to accept my purgatory. Perhaps then it will open up into some sort of freedom.

When I asked the benzo withdrawal sufferers about my ailments most people said the recovery takes years once it gets this bad. (granted, not everyone suffers this way with withdrawal—we are just some large minority) Since I still have a couple of years of withdrawing to do it’s entirely possible my chronic illness will last another 5 years if I’m lucky. I do know people with chronic fatigue triggered by things other than withdrawals that have been ill for 10 – 14 years with no end in sight. What needs to change then, obviously, is my attitude. If I’m going to be chronically ill I need to start accepting it and quit despairing. People do have it much worse than me. Lots and lots of people have it worse than me. Some of my readers have it worse than me. People starving and being raped in Africa have it worse than me. The Iraqis and Palistinians have it worse than me. I need to stop feeling sorry for myself—I still lead a disgustingly privileged life.

The feeling sorry for myself I assume is the habit of depression. Yes, I say habit. It’s not anything other than habit. Ingrained thinking processes and ghosts from my past and feeling hopeless and stuck in my unpleasant circumstances. People in much more dire straights have found pleasure in living. I’ve seen people in third world countries living in abject poverty that have joy on their faces. They are not a spoiled rotten American who expects all to be good—everything to fall into our laps—life to be easy. Life is not easy, most people suffer much of the time and accept it graciously but we Americans have been raised to think that it should all be a bowl of cherries. We feel entitled to a good life. Tough luck. Life is hard. For everyone and we’ve got it easy. I need to grow up and suck it up. I’ve got more than most people in the world have. I have people who love me. I have all the food I need. I have shelter. I have transportation.

I don’t have my health. Hmmm. So what? There are much worse tragedies. Okay enough ranting. Just thought I should show my face around here. I’ve been hiding.

Sorry for the bitterness and sorry for the unanswered emails and phone calls. I’m out of commission indefinitely.

14 thoughts on “Running out of steam—at least for now

  1. Susan,
    You are very sweet to offer your research assistance…I’m very touched by that…

    For now I’m sticking with what I’m currently doing. I hope to post soon on some new ideas that came my way today.

    Jazz,
    I’ve been enjoying your blog too! It’s nice to have another like-minded soul out there. I relate to what you say too. I just wish my withdrawals went as nicely as yours have—granted I know they were no fun for you at the time—I don’t want to minimize your suffering—- mine have now been going for 4 years and I expect another couple at least….granted the first 3 years weren’t too bad…I seem to be in an unlucky large minority that suffers protracted withdrawal syndromes. More on that in another post…

    cheers.

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  2. Gianna–

    Wow. Your world view is much like mine.

    I really feel for you with the medication withdrawal. I went through my own a few years ago–Lamictal hell for a couple of months, which I didn’t even realize was withdrawal until recently when I started reading blogs like yours. The doctor didn’t tell me anything–just told me to stop taking the stuff because I had developed a rash. I wish I’d known as much as I do now back then. Of course, if I had, I may have been too frightened to even try to get off the meds.

    Your blog is an amazing resource, and I have to thank you for that. Thanks, also, for your kind comments on my blog.

    You’re in my thoughts.

    Peace,
    Jazz

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  3. Gianna,
    I just want you to know how much empathy I have for you. It’s like being in “Hell” and then some. I don’t know what you’re taking so I don’t know if tapering off slowly is better or worse for you. In my case, there were drugs that I could taper off quickly (because they weren’t helping me in the least and it wasn’t a medical issue to go off them quickly–at least for me) and ones I couldn’t taper off quickly because even though I felt lousy taking them, I felt worse without them.

    And I tried all kinds of alternative medicines (mostly prescribed by quack healers although some were M.D.s) to see if they would help. None did. I also tried acupuncture and while it’s good for musculoskeleton pains caused by medication, it didn’t work for this. The only thing I didn’t try, which I might in the same situation was hypnosis. I don’t know anything about it, but if you want me to research it on your behalf, I will.

    Know that my heart and soul are with you!

    Susan

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  4. thanks everyone….your comments are all much appreciated. I’m sorry I’m not up to responding to you all individually.

    I do want to say to Susan…I’m still on meds…the withdrawal is not complete and when I’ve tried taking a bit of extra meds in the last few months to see if I might sleep better they actually make me even sicker…it’s like I’m developing a severe negative sensitivity to them. My only option is to get off of them. The big question is do I wait or do I taper by minuscule amounts while physically suffering like this…I just don’t know the answer.

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  5. You’ve got a circle of support around you and I’m standing in that circle. I think it’s horrible how this has caused and is causing such bad health problems to say the least–it actually reads like you have MS or Lupus; which says a lot at how bad the fatigue is that you are feeling, it is in fact life-altering, and I don’t think you need to write it off as feeling sorry for yourself at all! it’s disabling and it’s ok to say that. You can do it, time is the thing that takes the longest. Does that make sense? we have to give horrible things time, and in doing so, we know it can be done, and conquered but while in the process, time goes by far too slowly.

    Take care

    Stephany

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  6. God Bless You Gianna.

    Things will mend. It takes time.

    Look at dear old Clover Greene. Three decades Clover was a revolving door patient. Electroshocked till her hair fried and jabbed with major tranqs until her whole body jerked wildly.

    Yet today, she’s an upstanding member of her community a local councillor, an author, a survivor, a healer, and a friend.

    If we choose to reject biopsychiatry, then we accept a responsibility – that we ourselves can heal, through the power of our minds.

    It can be done. Many have done it before us.

    A dear friend of mine had a stroke about 18 months ago. I just looked at, her vacant eyes, her mouth drooping down, dribble pouring out, and I thought “Oh, hell, I’ve all but lost her”.

    And Britain being Britain, the health service didn’t give two hoots, either. The consultant neurologist was “too busy” to see her for a month.

    But the strength she found from within was astounding.

    Slowly, bit by bit, she recovered.

    And today she’s the very same person that she ever was.

    She did, you will do it, we can all do it.

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  7. Thank you for your message. You are writing about things that we all feel. I just got done watching the evening news, so I agree completely with your view of the world. So your thinking and reasoning, I believe, are quite sound. It could be worse–your thinking could be all screwed up.

    I’ve always felt like you–wanting to make a difference, to leave the world a better place because I lived in it for a time. I maintain that just keeping this blog up and posting articles here makies a difference. My problems in this area were that I wanted a lot of credit for the effort that I was making in helping the world and in getting very angry because so few people do anything to help out the world, yet they will laugh at someone who is trying to make a difference. Today, I probabably get the most satisfaction out of making the world a better place by picking up garbage along the streets. We are are limited, especially during certain periods of our lives.

    You are totally right about needing acceptance and that other people somehow manage with even bigger problems. I’ve been blessed at getting close to people who were greatly handicapped. One good friend is in a wheel chair, yet he skis, hunts, and rides a motorcycle. One of the most talented people I’ve ever met was blind. Besides having mental illness, I’ve had to live many years with my back that I broke. I went from doing judo and running marathons to nothing. Eventually, I found some acceptance and started to discover things that I could do with a bad back.

    There are no magic worlds to use to gain acceptance. It has to come from within. What you are doing is part of the process.

    Good Luck,
    Jim S

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  8. Geez, I don’t know what to say, except that I’m praying for ya.
    Like Pat, I don’t have much to offer except understanding & support…

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  9. Gianna,
    I know what it feels like to recover from medication, and it’s truly a soul-destroying experience. I also know about canceling plans, never being able to set anything up in advance, feeling so sick that you can’t imagine how you can survive one more day, and being so angry that I felt that if it wasn’t such negative energy, it might be fruitful to harness it as a new power source.

    That’s why I continue to take the few medications I do, albeit only when I absolutely need them. I don’t know if there’s anything that might help you or whether you’re totally opposed to all medications, but I did want to mention it. After years of having medication “rewire my brain,” I consider it a small price to pay so that I don’t have to go through what you’re experiencing. My long-term plan is complete withdrawal, but I’m not there yet.

    Susan

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  10. Gianna,

    I feel you. Silly expression and all, but really, I do. When I had my breakdown, some four years ago, I stopped paying attention to the news (and I was a political science major). I feel left out and stupid a lot of times now when people around me are having discussions about news and current events, and I remember a Pat from long ago who would have known all about the subject and relished the arguments and debates. This Pat from today doesn’t know a thing about current events. I don’t even pay much attention to the talk about the pharmaceutical companies and doctors, even though they, together with my irresponsibility, pretty much ruined my life, at least as far as I can tell. You can probably tell already that my mood ain’t much better’n yours right now.

    I have no wisdom, no perspective gained, no advice to give you. I only have understanding and support. Going through what I have gone though, I can imagine that your situation is much much worse, and I empathize and sympathize. I urge you to realize how much you’ve already accomplished and to have faith in yourself now. Acceptance is key, although I know I personally go through periods where acceptance of my present situation seems unfathomable. Being present is important, I know, being present enough each day to realize that you ARE having good moments – maybe more good moments now than you’ve had before. If this hasn’t happened to you yet, stay at your present dose and treat yourself well, and I think you’ll find that it will happen. I’ve had friends who would lose hope, and then look back and realize they feel much better today than they did three months ago, or six months ago.

    We CAN do this, Gianna, we can and we must. For me, I’m going to try to smile more. That’s all, just that. Whatever it takes – allowing myself the time to read email jokes or watch a funny movie or program every night – smile at my boyfriend just because he’s cute and he deserves it – he’s had to put up with a lot because of my benzo illness. I’m going to get back to exercise – very gently and very slowly. If all I can do today is walk down the driveway, that’s what I’m going to do. And I’m going to check at least one hundred times a day the following: am I breathing enough to nourish my body? am I relaxing my neck? are my teeth clenched? are my shoulders up at my ears or pressed back and down? are my stomach muscles clenched in a knot? are my legs relaxed? Okay, let it ALL go as many times a day as I can remember, cause every single time I do a similar body check, I find every muscle is clenched up tight, and I know that can’t be good for my body or my nervous system.

    I’m with you and all the other survivors of this psychiatric and physical onslought. Hugs all around.

    Pat

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  11. Thank you again for your blogging. The piece from the ex-pharma rep was really very good. Thank you for putting it on your blog. You seem to be going through a hell of a time. They say that when one is coming off meds, that the earlier unresolved stuff i.e. dating back to our first going on meds, comes back. When I came off meds last year, I plunged into an manic state whereby issues from the past came back to haunt me. The meds or should I say drugs keep our minds in such tight rein. When we do come off prescribed psych meds, the mind is free, and hence it can bring back memories that have been suppressed by the meds.

    I know you are going through a lot of suffering, but you are not far from the end of the trail. You will soon be off meds. Maybe your blog and other alternate psych sites are inciting guys like this pharma rep. to tell their story. Looking at this positively, life is changing, we have a choice with psych meds. We dont have to be on them for life. For me that issue alone is making me back into a whole person again one with a mind, body and spirit. Without these blogs, I wouldn’t have any contact with fellow survivors. I have to say thank you again for making your withdrawal a very public issue.

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  12. it’s healthy for you to put it all out there…even if you think what you wrote may be self absorbed…ok…you need to kinda be absorbed. but a lot of us get to or are at that point that you’re describing and well this is kinda sick thinking but others can read what you’re going through and not feel so alone in their own illness.

    it is horrible what you’re going through. i’ve been fighting this chronic fatigue/fibro-bullshit-what-ever-it-is since about ’01. i have torn in to more innocent bystanders than i care to admit…my poor dogs cower if i even laugh or talk too loud on the phone.

    constantly bailing on people, my no shows and just disappearing have discredited me and i was crushed when i was told that everyone thinks i’m undependable…that’s not me…i’m sure that’s not you. but the chronic pain and illness that comes from these sources….as if most of us weren’t putting up a good struggle before the onset of chronic illness.

    what ever you have to write here is important to this community. you’re good times and bad…all of your insight whether through lenses clouded with pain or clear contribute to the whole.

    loosing your voice here would be very sad.

    but sometimes a rest from all that is going on in this world is neccissary…we are entering some just not so good times. but this is all leading somewhere. any contribution for the good…even if you are needing to vent…is of value.

    even if today doesn’t feel like a good day…you’re till ahead of the curve because you’re trying and you give a damn. that’s more than i can say about most of the people on this planet.

    and i agree with ckricket…acceptance is key.

    you’re in my prayers and i’ll send good thoughts your way

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