This Is My Brain On Pain

Posted on 2013/05/20 by Ruby Tuesday

As you likely know if you read my posts here regularly, I am no longer taking any real mood-stabilizers for my bipolar disorder. It isn’t an anti-medication stance, it’s actually just a place I ultimately came to through very little choice of my own (you can read a bit more about it here).

Now, being Bipolar I with psychotic features, unmedicated is a pretty daunting place to be, and I’m learning all the angles I need to cover. Some I already knew and had accounted for: exercise, sleep, stress, and situations I knew were very high on the potential trigger list. Others I knew, but didn’t really think about planning for, because they just didn’t come to mind when thinking of the day-to-day and what I needed to be vigilant about.

One major issue I’m suddenly finding myself scrambling to deal with is being in pain. More specifically, being in a great deal of pain for a prolonged period of time, without too many resources to treat it. Right now I am traveling, having a visit with family back in my hometown of Pittsburgh, PA. In a rather unfortunate pre-trip packing incident, I turned my back in exactly the wrong way. It hurt at the time (this would have been Monday last), but not too incredibly. After several hours on a plane, as well as lugging a 48 pound suitcase around — getting it in and out of the car, carrying it up the stairs both to the room and in the room — I was in a fairly severe state of pain. Tuesday night on a hotel mattress ensured that by Wednesday, I was eating Vicodin, muscle relaxers, and prescription anti-inflammatories in greater quantities than the really delicious chocolate thumbprint cookies I can only get on these trips.

Chocolate thumbprint cookies of deliciously addicting evil.

Fortunately for me, I was able to get my doctor on the phone and am now taking a steroid that is very rapidly mitigating the pain. Which is great for two reasons. The first, obviously, is that I’m not in such intense pain that three prescription medications can only take the edge off. The second is the way being in pain, particularly severe pain lasting for days (or longer), completely messes up my moods and my thinking.

I get irritable. I become easily stressed. I slip into a depressive state, and often begin to think things like I am worthless, a burden to the people in my life, and I have no value whatsoever. I never become suicidal, but I do still believe most everyone I love would be better off if they had never met me, even when I am told things directly to the contrary.

Now, I know that pain can affect the moods of those who have no mental illness at all. Just within the past day, my poor mom has done something to cause her back to become most painful (we’re a fine family for back issues), and she and I talked about this very thing. But when you have any kind of affective disorder (bipolar or depression, or anything that’s in their extended family, like cyclothymia), being in pain seems to pose a much more severe, long-term risk, a risk to overall mood stability.

I have experienced these same issues when I get truly epic migraines. Dealing with a migraine for a day or so is certainly no picnic, but I can handle it, and very rarely do I feel any effect on my moods or perceptions. But when I get one that lasts for three days, sometimes a week. . . I learned the hard way that when I’m unsure whether I should take my prescription opiates or try to ride it out with an over-the-counter NSAID, it’s better to choose the former and risk a bit of over-medicating. But then, I’m lucky, and I have never had issues with addiction or dependence in the 18 years I have been taking Vicodin for my migraines.

I have read numerous studies on how those with a firm bipolar diagnosis are much more likely to have migraines as well. I have also read studies linking fibromyalgia with depression, and not specifically in a “being in constant pain and having a lifelong physical illness makes you depressed” way, either — though that certainly doesn’t help depression. And premenstrual dysphoric disorder (PMDD) can bring on horrible “menstrual migraines” for those who don’t already deal with these types of headaches all month long.

I guess my purpose in writing this piece is twofold. First, it’s a bit of a “lesson learned, need to be vigilant about this as well if I want to maintain relative stability” post, and maybe it may even cause a few of you, my loves, to realize that pain has destabilized you in the past, and that it’s vital to make sure you think carefully about “toughing it out” if it has. Of course, I know not all cases are straightforward, sometimes medications for pain interact with other medications, sometimes you can’t take anything because of past issues with substance abuse, and sometimes (too often) all the options for treating ongoing pain have been exhausted — with limited success, or no success at all.

My second aim is to get your own input and experiences. Do you also find that pain can cause or exacerbate a mood state? Do you find it can distort your perceptions as well? What strategies have you developed for managing, mitigating, or ultimately preventing pain that others might find helpful?

Any way you slice it, the psychological and somatic aspects of our health are too intimately linked to be treated as though they existed as two separate, discrete problems. The whole individual needs to be treated, whether you are dealing with an uncooperative back or a badly malfunctioning brain.

And on that note, this particular individual needs to take her a.m. dose of Medrol (the magic steroid) — along with her gabapentin and clonazepam, of course! ;)

© Ruby Tuesday and A Canvas Of The Minds 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ruby Tuesday and A Canvas Of The Minds with appropriate and specific direction to the original content. This work is protected under a Creative Commons Attribution-Non-Commercial-NoDerivs 3.0 Unported License.

Preparations

Posted on 2013/04/26 by Ruby Tuesday

I have to go see my psychiatrist today.

Which means I have to do some work, prepare myself like I haven’t in a long time, not since I ended things with my last doctor almost two years ago.

Back then it was pulling myself together, checking the anger and rage I felt towards him for the ECT thing, ending the relationship cordially, making my exit like a lady.

My primary gave me a great strategy there. He told me, “You’re a great actress, act.”

(The fact that he could see behind the facade sometimes only undermined his words a little.)

And I went in, and I was Grace Kelly in every way: calm, patient, kind, understanding. . . graceful.

In the end, I was a lady, though I often wonder if that designation should ever be applied to me.

But, in the end, I left head high, knowing I had done the right thing.

Today will involve fewer “dramatics”, in every sense — well, perhaps almost every sense.

I have to get refills on three benzos in one visit.

It will be a neat trick indeed, if I can pull it off.

It’s a psychiatric trifecta: Klonopin, Xanax, and Valium, in ample quantities each.

My doctor is no longer watching me regularly. And he knows I have never been suicidal. Right now I’m not even depressed, or overly anxious, that feeling broke.

But I have a trip coming up, and for many reasons, for many people, I have to have in my possession all of the tools to seem downright docile in a pressure-cooker of a situation.

Which means that, despite how I may have appeared at the last of the real appointments – and I don’t deny I probably seemed a trifle. . . low. . .

At this appointment, I need to be together, I need to be convincing, I need to be winning, I need to be responsible, I need to look and act just exactly so, and most of all, I need to be strong, to show the good doctor he can trust me and he takes no risk with prescribing large quantities of heavy-hitters — all in 15 minutes or less.

Any bets?

Addendum: I won. Triple Crown.

An Important Note On Blog For Mental Health 2013

Posted on 2013/04/09 by Ruby Tuesday

Please, everyone: If you want to be included on our Blog For Mental Health 2013 Official Blogroll, and have your post shared by us via facebook, Twitter, and Pinterest, you must leave a comment on the page with a link to your Blog For Mental Health post specifically. Make sure to read the original Blog For Mental Health 2013 launch post, it explains the concept behind this project and gives you an idea of what your post should contain.

I really want to include everyone, but a comment on the blogroll page with the link to your Blog For Mental Health 2013 post is necessary for this (just a link to your site doesn’t help me!). Thank you so much for participating, and for helping me out here by following these three simple steps:

Read the Blog For Mental Health 2013 original launch post.
Write a post of your own that follows the directions for making your Blog For Mental Health 2013 pledge.
Copy and paste the link to that specific post into a comment on the Blog For Mental Health 2013 Official Blogroll page. You won’t see your comment, but I will comment back to you on that post on your blog so you know you’ve been added and had your post shared by us.

Also, as you write your posts, please make sure you pass this message along. You’ll want the people whom you pledge to have their posts shared through Canvas as well!

Love,
Ruby

When You Reach The End Of The Road

Posted on 2013/04/09 by Ruby Tuesday

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.)

Relevant Reads:
“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)

Coming Out

Posted on 2013/04/03 by Ruby Tuesday

An important note from Ruby: These words are not my own. I did not write this piece. I may wish (very much) that I had, but this is something written by Cate Reddell, who has an amazing gift with not just how she puts her words together, but how each one of them is imbued with her beautiful voice, and her beautiful conviction. Some of you may be familiar with Cate’s blog, Infinite Sadness… or hope? If you aren’t, have a look, it is well worth your time.

We’ve never done any “guest posts” on Canvas, and that’s not what this is meant to be at all. This is a piece Cate originally published on her own blog a few days ago. It struck me so deeply that I did something unprecedented. I asked Cate for her permission to reproduce it in its entirety as a post on Canvas. Cate most graciously agreed to let me do so. I have no intention of making this a regular event, we have so many wonderful writers who make up Team Canvas, and who are incredibly talented and dedicated to the project. But this one just got me and wouldn’t let go. You can find Cate’s original right here, should you want to comment to her. I’ll be fielding the comments below, on Canvas.

If your first thought is that this post is going to be about either my sexuality, or someone elses, you’d be forgiven. Coming out used to be about being presented to society, and more recently it’s been about coming out of the closet. Usually the gay closet. I’m not about to do either of these but coming out is something that I’ve been thinking about in terms of mental illness.

Lately I’ve been reading a number of blogs and articles about the stigma of mental illness, and more specifically the stigma of Borderline Personality Disorder (BPD). And each time I’ve finished feeling a little frustrated, like we haven’t quite hit the nail on the head yet in addressing this problem.

That’s why I started thinking about the way in which sexuality, and more specifically, different kinds of sexuality have been moving toward a more acceptable space in society. I know that there is a long way to go yet for the LGBT movement, to enable all people to feel able to be who they are without being stigmatized. I look forward to the day when we all accept people for who they are.

Image credit: Hugh Young

It’s got me thinking. Head back nearly 30 years ago, in New Zealand there was massive reform going on to see homosexuality legalised in 1986. It was a huge reform which saw many protests and arguments. Actually it was much along the lines of the Marriage Equality legislation that is currently being debated in many countries (including New Zealand).

As a young, (I was 21) heterosexual I could have chosen to ignore the 1980′s reform. At the time I was very involved in a Christian church (as I had been all my life) where homosexuality was frowned upon. Actually ‘frowned’ is not that word. It was regarded as wrong, and as a sin.

For me though, at the time I was working in an office where my boss was an openly gay man, and a co-worker was openly transsexual. It gave me a completely different view-point than the middle-class, Christian upbringing I had. At that time, to be open about your sexuality was a big thing. Not only were my workmates going against the norm, they were also going against the law.

I have to admit that it wasn’t until I knew those people who I realised that actually we are all the same and that no one deserves to be judged by another. At 21, I came to the conclusion that if they weren’t hurting anyone then why should they not be able to live freely the life they chose? I accordingly voted for homosexual law reform.

What has this got to do with mental illness? It strikes me that those of us who have mental illness need to ‘come out’ too. I know only too well that when we’re dealing with mental illness, we’ve got more than enough to think about let alone taking on activism. But it seems to me that it is exactly what had to happen (and still happens) for those of a sexuality other than heterosexuality. They had to come out in order to see change happen in our society. Maybe it’s not fair, but no one can deny that coming out has helped open society to different realities.

Image credit: GO LIME Awareness for Mental Health (GLAMH)

In the same way it is those of us with mental illnesses who have the vested interest in seeing the end of the stigma of mental illness. It seems to me that I will directly benefit if there is more openness and acceptance of mental illness in society. For my neighbours who don’t have a mental illness the benefit is indirect.Maybe it shouldn’t have been the responsibility of the LGBT movement to change the thinking of society. In an ideal world, I’d go so far as to suggest as this should have been a responsibility of all human beings. The thing is though, that the LGBT movement were the one’s who had a vested interest in getting laws and attitudes changed.

I’d like to think that everyone in society would want this, but the reality is that there isn’t the same obvious benefit for them, as there is for me. They’re not the one’s who have to think carefully who they admit their mental illness to. I do though, and in that respect I am little different from my transsexual work-mate of 30 years ago.

I believe we have a choice. We can sit and wait, hoping that one day society will magically change its attitude to mental illness. Or we can think about speaking up. Coming out about our mental illness. Because the more people who realise that they have a friend, neighbour, family member or work-mate with a mental illness, the more acceptable it will become.

It doesn’t need to be a big deal. I don’t think we need to list off all our diagnoses. Actually I believe that would be as off putting as if we listed off everything that was physically wrong. We just need to let people know that mental illness exists, and is not the scary thing society has thought it to be. If we can admit to our friends that we have, say diabetes, then why not mental illness? This is exactly what the LGBT movement has done… shown that different sexualities are actually normal.

I don’t for one moment think that this is an easy ask. There is a lot at stake. I’ve simply come to the conclusion that I can’t just sit and wait, hoping that one day things will change. It’s not going to magically happen. But if each person takes a small step, as the LGBT people have done over years, and as other minority groups have also done in the past, then we start to make a difference.

♦

“We learned three crucial lessons from LGBT activists: We had to build a movement. We couldn’t be afraid to challenge our friends in power. And we had to give our cause a human face.”

- Frank Sharry, America’s Voice

♦

“We have got some very big problems confronting us and let us not make any mistake about it, human history in the future is fraught with tragedy … It’s only through people making a stand against that tragedy and being doggedly optimistic that we are going to win through. If you look at the plight of the human race it could well tip you into despair, so you have to be very strong.”

― Robert James Brown

Relevant Reads from Team Canvas:

To Out Thyself Or Not To Out Thyself ~ Always (A Canvas Of The Minds)
Stigma? What Stigma? ~ Always (A Canvas Of The Minds)
Coming Out Bipolar, Round 1 ~ DeeDee (Disorderly Chickadee)
Coming Out Bipolar, Round 2 ~ DeeDee (Disorderly Chickadee)
Helping to Break Stigma ~ Hellosailor (A Canvas Of The Minds)

© Cate Reddell and Infinite Sadness… or hope? 2013. Reproduced with the author’s written consent. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited.