The other day I made a comment on Polly’s blog, polarcoaster on this post. I said that my mood ranges these days were “in the realm of normal.” I’ve spent the last couple of days wondering what that meant and whether or not others who read my blog might agree.
What might be more precise to say is that I am moving more and more away from pathologizing my moods and energy states. I don’t find it useful anymore. I am what I am. I have days and periods of time in which I have more energy and have days and periods of time in which I have less energy. I don’t think so much in terms of mood anymore. My energy states don’t always correspond with my mood. I may be more productive during a “high energy” period and less productive during a “low energy” period but, again my mood may be good or bad in either state.
Also, the amount of meds I’m on doesn’t dictate whether or not I have these changes in energy. This is one of the reasons I believe more and more that the meds do nothing to improve my quality of life. I do, indeed, have a lot of evidence and experience that they, in fact, diminish the quality of my life and make me “sicker.” Also, since changing my diet and starting neurofeedback and withdrawing from more than half my meds my energy state has been more stable. There is a smaller range of change.
So I don’t pathologize my state of being and I say I am “normal.” (I don’t actually believe in such a thing as normal–I believe more in not pathologizing the great range of emotional experience the human being can experience)
In any case we come to the fact that I remain on disability–this is what was making me think about what I had said and what others might think. If she is “normal” why does she not work? Does this inability to work mean I’m sick? Certainly by society’s standards and the department of Social Security the term disability implies illness–and as you will see I’m not actually denying any illness at all–I just think the cause of it at this point are medications.
Why am I on disability? At this point in time the reason is two-fold. First, but perhaps not most importantly, I am in withdrawals. Each time I cut my meds I lose sleep for a few days. I function very poorly without sleep. For that reason alone I would have a very difficult time holding a regular job. But more importantly, I suffer from extremely low stress tolerance. What does this mean? It’s hard to describe, but when I have outside demands placed on me, demands that I do not intentionally choose–demands that most likely have a deadline and must be completed in competent fashion I get so worked up with a kind of frantic anxiety that it’s simply intolerable and it would be masochistic to try to hold on to a full-time job or to work even part-time all year long–it’s incredibly disruptive and painful. I do work part-time a few months a year(that’s the nature of the job)–and I have a very hard time doing so.
Now…this inability to work is not due to a mood disorder or any energy fluctuations I may have that might be labeled by some as bipolar disorder. It’s got to do entirely with a kind of super-charged anxiety. Here you might say, A ha! Pathology! But again, I don’t think so. Not organic pathology, in any case. What I think at this point is that this is drug induced, iatrogenic illness. So yes, I might call myself ill now, but it’s not a natural state for me.
I was prescribed benzodiazepines for sleep years ago. I was not prescribed them for anxiety. I have, however, over the years developed what was called by my psychiatrists, “generalized anxiety disorder” or the simple “GAD.” It could be argued that this is a comorbid illness associated with my “bipolar disorder.” But I see it another way.
I’ve spent almost a year now as part of numerous benzo withdrawal email lists. People on these lists have been prescribed benzos for a myriad of reasons–by no means are they all prescribed benzos for anxiety. Many never suffered from anxiety at all before starting benzos. All of them, once on benzos for a few months to years and once reaching a level of tolerance at which point they realize the benzo’s are making them sick and that they need more and more to feel normal, begin to experience anxiety. We have “benzo sickness” as they call it on the lists. A brief description, not nearly as graphic as what you learn of the benzo boards is here, written by benzo expert Dr. Heather Ashton:
Long-term use of benzodiazepines can give rise to many unwanted effects, including poor memory and cognition, emotional blunting, depression, increasing anxiety, physical symptoms and dependence. All benzodiazepines can produce these effects whether taken as sleeping pills or anti-anxiety drugs.Furthermore, the evidence suggests that benzodiazepines are no longer effective after a few weeks or months of regular use. They lose much of their efficacy because of the development of tolerance. When tolerance develops, “withdrawal” symptoms can appear even though the user continues to take the drug. Thus the symptoms suffered by many long-term users are a mixture of adverse effects of the drugs and “withdrawal” effects due to tolerance.
There was nothing wrong with me except a little insomnia when I started taking the benzos. Insomnia at the time meant sleeping no more than 7 hours, but I rarely slept less than 6. At this point I find that I can tolerate that amount of sleep and do–so I conclude it was never really an issue. My doctor however, paranoid that I might get manic, insisted on treating the “insomnia.” In any case unless I was getting 9 hours of sleep a night I would pop an extra pill–the doctor made me paranoid as well. I started with Xanax, a very short acting benzo and in a while I began to have “tolerance withdrawal.” That is after about 6 hours, once the xanax wore off, I would become anxious. Ah! The birth of my anxiety disorder!
My doctor switched me to Klonopin which again got me through the day for a while and I would take my nightly dose. First one milligram, then two, then finally three. I was not completely without knowledge about these drugs being addictive so at that point I refused to take more than 3 mg for more than a couple of days at a time at any given time. But I would take up to 6 mg a day PRN (as needed) many times a month and at least two to three times a week–the additional 3 mg were taken during the day to get me through until my night-time dose. I had reached tolerance on the Klonopin too and that was the end of me, once I refused to continue upping the dose. My doctor told me not to worry, too take as much as I needed–but I finally didn’t trust him. I was working in mental health in the public sector and doctors there are much more loathe to prescribe benzos as they work with so many addicts. I had acquired a consciousness that they might not be such a good thing. In the end my tolerance withdrawals are what sent me home and out of the job market–I simply couldn’t make it through the day without at least 6 mg of Klonopin and even that sometimes seemed to not be enough.
My anxiety was so extreme it led to two “manic” episodes after a 12 year career in social work. These “manic” episodes were not the usual “bipolar mania” by any standard in that I did not lose my sense of judgement, I did not have emotional lability or euphoria, I did not have racing thoughts and I was lucid. The thing that made them get labeled manic was that I stopped sleeping and I panicked–it was the panic more than anything else that made me feel sick in any way–I called these episodes manic–but really what they were was acute anxiety attacks–the doctor accepted my diagnosis of mania.
In any case after that I tried to return to work and I simply couldn’t make it through the day without feeling like I was going to have a meltdown. I’ve not been working now for about three and a half years. Not long after I stopped working I began neurofeedback. I got off my antidepressant within about 5 weeks. I started cutting out my Risperdal. I cut out 7 mg without changing my diet. (I had been on 11 mg.) I accomplished those decreases in a couple of years and then had to stop until I discovered dietary changes. My mood has been much more stable as I continue now to cut out meds. I’m now down to 1.25 mg of Risperdal. I’ve gone from 400 mg Lamictal to 300 mg. I’ve gotten off of 50 mg of Seroquel and off all antidepressants. I still have the god-damned benzos to contend with. They are the nastiest. They are the source of my disability right now, but they are also the hardest to withdraw from, so I wait.
I’ve heard of many people who take one to two years to get off just 1 mg of Klonopin. I take 3 mg–I’m hoping I’m one of the luckier people who don’t have the most hellish times. Most of the people I communicate with are not changing their diets so they do have a harder time and it scares me. I am in one group whose emphasis is whole foods and supplements like mine–these people clearly do have an easier time–there are far fewer desperate cries to the group than in other groups, but it’s still not a piece of cake.
In any case, it will be a while still before I take on the benzos. And until them I will remain in tolerance withdrawal and therefore continue to suffer my iatrogenic illness. I suspect I will be off the other two drugs I’m on by the end of the year if things go relatively smoothly. (coming off neuroleptics–the Risperdal–is no piece of cake either. The smaller the dose the smaller the increments of reduction have to be, so it can feel like forever–I just hope it will go okay and that I will be off both the Risperdal and the Lamictal by years end) Then the benzo withdrawal–well you can imagine, if I’m already in “tolerance withdrawal,” the actual withdrawal will be all the worse. It’s not an easy party I’ve taken on. And it’s no wonder most people never even dream of taking this on. I consider myself very lucky to be on disability. I could not do this otherwise. Anyone who wants to take on a massive withdrawal like I have would have to be unfettered by work. That is a luxury and certainly not everyone can pull that off. If someone is already on disability they have a much better chance of healing themselves naturally. That is a shame. Of course I wouldn’t be on disability if the drugs had not slowly further stripped me of my health.
Just to summarize. I did indeed have emotional problems when this journey on meds began, but had I had the means (or, I should say, access to information) to take care of myself naturally as I am doing now, I wouldn’t have had to go on this hellish downward spiral. Sometimes it’s damn hard not to be bitter.
So you decide if I’m “normal.” But I have to repeat–what is normal??? I think I’m doing pretty damn well.