It finally happened. Officially, I mean. I’ve reached the end of the line. After six-and-a-half years of extremely intensive psychiatric treatment, the first fiveish with an incredibly bright, creative, thinking-outside-of-the-box younger doc; the last year-plus with a man long experienced in the mood disorder game (not to mention numerous consults along the way), it has been made manifest.
There is no medication, no medication combo, no singular or plural that exists currently in this country that I can both tolerate and achieve lasting stability with.
Stamp it. Signed, sealed, delivered, done.
I got this news “officially” last Monday, when I saw my psychiatrist. But I think I had seen it coming for some time before that. Not consciously. I mean, I knew we — I — had been through it all, and after the last failed trials with amphetamines to treat my depression (they did, for about four hours in the morning, then I crashed, hard), I wasn’t actually expecting anything going into this appointment. In fact, I had reached a point of complete lack of expectation.
There is a word, adhedonia, which is a symptom of depression. But loosely translated, it means an utter lack of interest in absolutely anything. It’s not even sad, it’s just. . . void. And that’s where I was with my appointment.
It’s very strange for me to think about that, after nearly seven years of going into my psych appointments, every three weeks (excepting last year), always expecting something — we would add this, subtract that, increase or decrease a dosage — this one I went into with nothing. Which kind of confirms for me that I already knew.
So, that begs the question: What do you do with a woman who carries a whole alphabet soup worth of diagnoses — Bipolar 1 (with psychotic features), and four severe anxiety disorders (I won’t list them all) — who is now minimally maintained on a benzodiazepine and an anti-convulsant that actually failed all the clinicals as a mood stabilizer (I am not a clinical — but you knew that)?
My psychiatrist’s answer, one I heard repeatedly when I looked for a new doctor only a little over a year ago, is for me to look for trials. Go national. These studies have access to new medications that are not FDA approved, so he can’t prescribe them. Which would be awesome, I’m sure, if I had the money to do that.
He also made it abundantly clear that he will still be there to prescribe what I have now, and available if I need to see him. He is still my psychiatrist. But he didn’t think scheduling any follow-ups was necessary. I didn’t disagree.
When I wrote the opening few paragraphs to this post, I was — as one would expect — feeling extremely lost about what happens to me next. I’ve been facing some very hard truths for a couple of months now, and this was one more I could no longer avoid looking in the eyes.
But a funny thing has happened to me since then. I actually feel. . . Relief. Freedom. Happiness. Optimism about what lies ahead.
I am in complete control of everything once again. Control is probably my biggest potential trigger, and I began to lose it, slowly but surely, before seeking treatment in 2006. I didn’t start regaining real, meaningful control until just a few months ago. Now the rest of it has been handed to me, if not on a silver platter, then perhaps on one made of old copper. The kind that has turned so green you would initially discard it as worthless, but when you take a closer look and clean it properly, you realize its value is far more than you ever imagined.
So here is my answer to the question above, the answer which really matters. What do I do with myself now?
I exercise. I’ve been back to kickboxing and it has worked wonders, even when I’ve felt a misery at dragging myself out of bed at three a.m. (yes, really).
Keep my sleep sufficient. I can cheat a little here and there, but I need to be in bed, sleepers ingested no later than six p.m. (again, really), as a general rule.
I’m adding in yoga once again. New DVDs, new reasons to work my body while completely clearing my brain. I need the calm nothingness it provides. Kickboxing is for letting it all out, yoga is for forgetting that there exists anything which needs let out in the first place.
Keep my level of stress so low it barely registers. This is a challenge, but it is vital. And something as simple as committing to attend a certain event — or trying to stay on top of blog comments, say — when I’m not in a place for it can cause severe decompensation for me. That’s legalese for “total nervous breakdown”.
Get out more. Do positive things for me. Take myself out to lunch. Get my hair done. Go on a long drive. See my girls.
Be vigilant. The last and most important aspect to dealing with this. There are medications I can take very short-term, on a rescue only basis, as well as adjustments to my daily life that I know to make. I will keep contact with my doctor, but fortunately he has left me a decent supply of these drugs to have at hand so I don’t have to wait on him. The difference between one day and three when you are experiencing prodromal symptoms of a mood episode is the difference between preventing one and diving in deep. And after all these years, I have an unheard of ability to sense intimately and immediately when something is going amiss in my mind and body, and go straight into “triage mode” as naturally as if it were an everyday activity. Because it was, for so many years.
Last year, the year I healed and spent my time secure in the knowledge that this was different, that whatever happened down the line, I would deal with it — it would never again get bad like it had been for so many years — that time was more critical than I knew. Because what it taught me is the truth. I have no idea what lies ahead. What I’m looking at, what I’m facing, it’s madness — both in the literal and figurative sense. But I’m not frightened. At this very moment, I’m not so much as batting an eyelash at what may come. I can handle it, whatever “it” may turn out to be.
The road, for me, it’s come to an end. In front of me there is a dense jungle, filled with all sorts of dangerous things. But I have made myself a pathway in, and I know that while danger awaits, so does rare beauty.
It makes me think of The Princess Bride, and the Fire Swamp:
Princess Buttercup: We’ll never survive!
Westley: Nonsense. You’re only saying that because no one ever has.
(If you haven’t seen this movie, stop everything you’re doing and watch it. Now.)
“I’ve Just Wakened Out Of A Nightmare” (I Was Just Thinking. . .)
The Finish Line (I Was Just Thinking. . .)
Three Weeks (I Was Just Thinking. . .)
Once More Unto The Breach, Dear Friends, Once More. . . (A Canvas Of The Minds)
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Well done, you are now the proud owner of YOUR LIFE! Once you release yourself from the victim, patient, fix me role and accept that you are in control of your illness/life/ destiny, you are empowered! I have suffered with depression all my life and until I decided/realised that only I have the ultimate power to control this, things were bad. Acceptance is the key, we have an illness and it is not always ‘fixable’ so you have to seek strategies to cope with them and improve your situation. Good luck on your journey of discovery to your new life 🙂
denimfish, while I understand what you’re trying to say here. . . I was never a victim. I was only a patient in strictly clinical terms. I knew that no one could ever “fix” me except me — with one notable exception, I was always 100% in control of my care. I did the research, I asked the questions, I suggested, approved, and rejected the solutions presented. And once my doctor understood that when I dug my stiletto in, there was no moving me (which took about two visits), we got along nicely.
I have always accepted my illnesses. They were never “fixable”, only manageable. They are as much a part of me as my blue eyes and my Irish temper. You have no idea what I have gone through these past years with visits to the ED, catatonic depression, shocks to the brain, hallucinations, and paranoia that was debilitating.
My point in educating you here is that for someone who is as profoundly ill as I am to be virtually unmedicated is not only frightening for me and everyone around me, it is actually life-threatening. I don’t think I quite got that across in the post. And this journey is not new. It is merely a continuation of one I have been on for 32-plus years now.
All that being said, I am very grateful for your intention, your support, and your positivity. I just want for you to know exactly what you’re commenting on. It isn’t just this snippet I have shared right here. It’s every moment, past, present, and future.
I really like the “what next” you’ve added in here. You’re a wonderful example of how having medications fail you pretty much completely doesn’t mean you have to give up. You role model, you!
DeeDee. . . My words are tired. So when I say I love you so much, know that there is far more contained in those five words than that. ❤
I know. 🙂
I also really feel you on keeping stress so low it barely registers. I’ve been getting much better at banishing stress, but what it takes to achieve that comes at a very big cost in other ways. It’s hard on the ego to even start to admit that I have very real limits to what I can handle at any given time. But it is what it is, right?
You’re completely right on all counts. I had to come to terms with the fact that I couldn’t do everything, that I couldn’t keep doing for others and putting my own needs aside — I wasn’t “okay”. And it’s strange to think of how intimately tied up in my identity and sense of self that belief and behavior was. And then to accept. . . It exactly is what it is. I can’t change it, so what good does it do to lament that fact?
You and I are both better for ourselves and everyone who cares about us when we work hard to keep healthy.
Sounds like you’ve got a sensible plan there. I reckon you’re now building your own road. I’ll be praying for you as you journey.
Thank you for your prayers. Building my own road is the story of my life, and I thank you for your support as I continue.
I understand that feeling you mentioned – not happy, not sad, an utter lack of interest in absolutely anything. Void. Some people are just better fakers, I guess, and I’m a great fake. I hope you can hold onto this positive feeling – the control is an important thing. Now you’re out of the “not knowing” and you can just deal with what is. Good luck to you.
Alice, I think we could get up a healthy debate in those who suffer from depression about which is worse: feeling all the awful, or feeling nothing at all. I honestly have to say that for me the void is worse.
I think we all have to fake it sometimes. I used to be a great fake, like you, but it went way, way too far — I was faking even to myself. I still have times when I need to, but I acknowledge them within me.
I’m working on holding on to the positive. Unsurprisingly, it hasn’t been as easy as I felt it would be when I wrote this post. But, having the control (such as it is) and being rid of the not knowing. . . Ultimately, they make for a much more stable base from which to operate, even when I’m not doing so hot.
Thank you for always being so wonderful and supportive. 🙂
Hang in there, beautiful friend. You’re in control now. No more “who’s that man behind the curtain.” You’re the one with the Ruby Slippers. Now, while you know, write down, draw, whatever you need to do, to know where HOME is, where you need to point your inner compass to return to if you find yourself wandering in the woods. And by the way: clinical trials are free, if you ever decide you want to join one. Sending you much love and healing juju xoxoxo
This comment is so lovely, and warm and heartening to me, S/S. And it’s also a good mantra — the kind of thing I need to print out and paste somewhere as a reminder to myself. So thank you.
Oh, and as for clinicals, the trials themselves may be free, but getting to where they’re conducting them, paying for room and board while they go on. . . You can see how that’s a bit prohibitive.
Actually, most clinical trials are not conducted on-site. You get evaluated by phone and other ways, and they might have you come once or twice at their expense (Big Pharma, you know). You often get paid for participation, and it never costs the participant money, otherwise they would never have the numbers they need, because who can afford all that stuff? Plus it would skew the population data to show only upperclass (white) people. So for what it’s worth, don’t let lack of funds stop you from considering clinical trials if you wish to go in that direction. There is an online database of clinical trials, which I haven’t looked at in a long time, but you can certainly find it by googling. I know you’re a master googler! Love you xoxoxoxo
Thanks, S/S. DeeDee actually gave me the link a while back, but I haven’t much looked at it. My psychiatrist seemed to believe I would be responsible for getting myself there and paying for my own room and board. I looked into a trial at Pitt/Western Psych last year (since I have family I could stay with), and they wanted participants they could monitor in person (weekly appointments, I believe) for the duration. For the places my doc recommended, I think it’s likely they’d be on site as well. There are a number of other issues I have with the idea of doing a trial, anyway, so it’s not likely to matter.
I love your thinking, and I’m sending you positive thoughts……..the truth is that none of us knows what lies ahead, even if we think we do. You just realize it more than most people.
Janet, thank you. And yes, I definitely have a very keen knowledge of how uncertain the future is. It used to scare the crap out of my reigning control freak self, but now that I’ve sat down and learned to understand it, it’s actually very freeing.
Thank you for those thoughts, and for always being such a wonderful support. 🙂
Re: Princess Bride. Even my teddy bears love the Princess Bride!
So incredibly adorable! 😀
Wow. Amazing. I could never imagine that type of struggle and admire the strength you’ve had to endure. It seems like sometimes simple lifestyle changes are the best treatment one can give one’s self. And I LOVE The Princess Bride. Nice reference.
I think we all have our own unique struggles, and something that seems unfathomable for me may be something another can get through and thrive. But I thank you for your kind words very much. And it is amazing what profound effects making simple adjustments to how we live can alter things in wonderfully big ways, isn’t it?
The Princess Bride is the best! 😉
Ah the fire swamp, a very good simile to mental health issues
‘And what are the 3 dangers of the Fire Swamp? The fire spurts, which we can learn to avoid as they make a popping sound right before they go off, the lightning sand, and we have survived that, and of course the Rodents Of Unusual Size. Personally, I don’t even think they exist.’
It’s the rodents of unusual size that I really struggle with! 😉
You’re fabulous dear and I’m so glad that this ending has brought you some peace, some clarity and even some joy! Sometimes just getting an answer is enough to settle our minds even if the answer is not the one we wanted initially (((hugs))) xox
‘We know all the secrets of the Fire Swamp and can live there quite comfortably. . .’
You are fabulous for being such a wonderful friend and support! And you are so incredibly wise and right: “Sometimes just getting an answer is enough to settle our minds even if the answer is not the one we wanted initially.”
Big (((HUGS))) to you! xoxo
Go you! I find this post very inspiring because I’ve been struggling to find the right medication / cocktail that works for me. I’m full of so much frustration and uncertainty: Is it that the medication’s wrong? or the dose too low? (too high?) that I’m not taking it regularly / at the right times? that I forgot to spin around and clap 3 times and say “who ha!” while pumping my fist in the air?
Anyways I think it’s a bit early for me to give up on medication entirely, but your post gives me hope that if, somewhere down the road, I find that there is no right medication or cocktail for me, I can follow your example. Heck, even while I’m still on the road. What can I do to take charge of my own life, to help myself, regardless of whether the medication I’m on is working? Maybe I’ll try and answer that in my next post on my blog.
Thank you for the inspiration. All the best.
I know that frustration so well! There are so many variables that could be causing something to not work properly, getting them straight is nothing short of a miracle! (And I love the: “I forgot to spin around and clap 3 times and say “who ha!” while pumping my fist in the air?”, because it really does feel like some ridiculous ritual!)
I have to say, I’m not at all an advocate of people giving up on medication, even with all the frustration it can bring. I don’t believe in just pushing pills, either, but if you have a serious mental illness, I still believe medication is going to be your cornerstone of treatment. In my case, I think the medication more gave up on me.
Honestly, it makes me really happy to know this has you thinking about what you can be in control of. I think so often (I know it happened to me, still does sometimes) we get lost in all the control we don’t have — our illness has it, our doctors have it, our therapists have it, our meds have it. Just being able to recognize that ultimately, you are the one in charge and you can take steps on your own — the realization itself, followed by even a little implementation — I think this makes an enormous positive difference, and I’ve seen it happen to others, too. So good for you, you’re ahead of the curve!
And I send all the very best right back to you in your own journey. 🙂
I like your attitude Ruby, of what’s next. Keep looking forward must be the way too go. At the same time I wish I could hug you. I have been through this as far as medication for physical well-being goes. I live with it, but I think I’d rather my physical wellbeing was left to the gods (or whoever) than my mental well being. It makes me wonder why our doctors think that medication is the only thing they have to offer. I really hope your psychiatrist keeps being there, and supporting you. ❤
Cate, you’re so wonderful, and such a good friend to me. I know (on a very small scale) about dealing with this in aspects of the physical, too. I don’t really know if physical or mental is worse, they both have their frustrations and fears. But as far as looking forward, it’s the only way to go, at least in my experience. I have driven myself much crazier dwelling on the past, the “what ifs” and “if onlys”. Ultimately, I decided that there was no point in looking back on what didn’t work, because it didn’t and no amount of thinking would change that, so I had to keep my eyes front.
My psychiatrist has really been good and supportive. I think he just felt so badly because he wanted to pull that magic fix out of his hat for me. And while he doesn’t necessarily have an active understanding of what he’s offering me beyond medication, I still feel like him just being there and being willing to support me in the times I need him to — even just by giving me meds — helps me tremendously. He isn’t a therapist, but the faith he puts in my ability to gauge what I need for myself is its own kind ow medicine.
I had anhedonia for months once. Not a fun time–worse than despair, in my opinion.
Aren’t there some drug trials that you can sign up for that are free? I thought there were.
I love your fighting spirit!
I agree with you that it’s much worse, Angel. Even the most horrible things I have felt, at least some emotion was registering for me.
The drug trials are free, I guess, Soul Survivor made that point as well. But the difficulty for me would be in being able to travel to where they were conducting them, afford to stay and feed myself for the length of the trial, I just have nothing in my budget for that. 😦
And thank you so, so much for your support. Having you as a friend means a great deal to me!
I’m pretty sure that the cost of travel is included as well as all other expenses. Otherwise they would never get any participants. They’re Big Pharma, you know? Worth checking out. Love you!
The ones I’m looking at are actually government trials, and the one time I looked into one before (see above comment), they weren’t going to pay me for anything — and Pitt has done excellent and extensive research on bipolar, so I would think their practices would be fairly standard.
Amazing attitude! I love that you’re adding yoga back 🙂
Thank you! Yoga makes such a difference, it does wonderful things both for the body and the mind. There is just no downside there!
Good! I’ll take hula over yoga any day, but that’s just me. 😉 xoxoM
LOL, I could see you as the hula type! I also did bellydancing, which was lots of fun, but yoga for me has such a calming effect on my mind, I get so much peace from it. 🙂 xoxo
Got back from the doc today with two new meds and a really bad/hopeless attitude about the whole psychopharmacology thing. You’re free!! I’m jealous. 😉 Hugs to you.
I do hurt for you, because I know the kind of place you are. The whole feeling of ‘these drugs are awful, but they’re the (mildly) lesser of the evils, so I have to take them’. It makes me so sad and frustrated, because no one should ever have to settle when it comes to health and happiness. 😦
I am free. It’s a little scary, but so liberating, too. Of course, it means I have to redefine a whole new concept for how my life is ultimately going to play out. . . But that’s another post, for another time. 🙂
I was told recently how incredibly insightful and intelligent you are, Ruby, and I didn’t disagree even a bit even though I’m not nearly as close with you as who spoke those words. You have such an understanding of the traps and abysses of all of this and are so well equipped to write about them. I’m sure I’ve said it before, but you are an inspiring human.
More than that, I’m thrilled for you that you are finding that relief, and freedom, and happiness, and optimism. I hope they never leave your side.
Sid, all of your kind words, thank you. I am just overcome. I am glad we are now having the opportunity to become better friends, and I think I need to refer back to this often. I write well, think well, and know well about the traps and abysses. . . But sometimes, like everyone else, they still get me.
Fortunately I now have more support, more friends to help me fight the dragons. . . And I’m proud to call you a comrade in this fight.
“Thank you” is so not enough, but it’s all I have.
To me, “Thank you” speaks volumes. Sometimes the simplest words are the best, and so I give them back to you. Thank you for your kindness and support.