Category Archives: Newly Diagnosed

A Diagnostic Swamp – Defeated

The question of my diagnosis (at least, my particular bipolar diagnosis) has been something that has been under discussion for a long time. A lot of what I wrote in the early stages of this blog was centered around attempting to discern my true type, and if there was, in fact, one for me to fall into. After a time I gave up and forced myself to stop thinking about it because trying to recall episodes and memories was a tad too overwhelming to allow me look at things objectively on my own.

This issue suddenly came back up on Monday when I scheduled an appointment with a local psychiatric medication research team. My intention was to talk with them about what they do and how I could potentially fit into the research they are conducting around bipolar disorder, but upon making my appointment I was told that there would be a psychiatric evaluation and full physical to determine my eligibility for any of the current studies at the time of my appointment.

I was immediately filled with dread, something about the words psychological evaluation always send a jab straight to my stomach that spreads up through my chest. All at once I was terrified that the answer to the question I had been asking myself for years, my final bipolar diagnosis, would be revealed to me. Sure, it could mean a sort of closure or silencing of the nagging caused by not really knowing, but it could also mean having to face a series of specific words. What if those words felt defining? What if all of the research I’ve done has led me in the wrong direction -what if they weren’t what I was expecting?

Already nervous on Tuesday when I arrived at my appointment, what little enthusiasm I had vanished the instant my evaluating psychologist walked in the door. It was a man, and though my usual psychiatrist is a man, I have spent enough time with him that I am able to trust him at this point. Most men, however, I have zero trust for by default, something compounded exponentially when they work in the medical field. My anxiety gets too high and I have trouble being open with them when I first meet them, and I instantly took this as bad news for my psychological evaluation.

To my delight, however, he turned out to be quite the sarcastic oddball, which promptly brought him from intimidating straight down to nerd-level where I knew he wasn’t a threat. My body relaxed, the nervous jitters slowed, and I said, “just a minute, I brought some visual aids!

I showed him the color-band chart and as I hoped, he was delighted.

Right away he asked if I was type I or type II.

“I’m not sure, to be honest,” I said. When he began describing the difference to me I could only shake my head. “No,” I said, “I understand the types. The trouble is that this is tricky.” I didn’t want to rant about how different doctors see different things in me, something like a kaleidoscope. How I don’t know how to best get the truth across, or how there are periods and episodes where I genuinely can’t remember how much time had passed, or how I felt when they did.

We spent an hour while he deduced. He asked me questions about past manic experiences and lit up like a little boy under a Christmas tree when I told him about running away from home to live in the woods. About hiking for 8 miles a day because it was all I could do to keep from being engulfed by the energy. About feeling like a werewolf (yes, I had a psychotic manic episode where I thought I was a werewolf).

To these things he replied, “you have fun ones.

“You’d think that, wouldn’t you,” I said. “And actually,” I added, “they were all pretty fun at the time. Less fun, though, after.”

This is where the trouble always comes from in these situations, because the duration of these episodes vary. Many of them, the most intense portions may last for a couple days, but as I mentioned, there are many areas of my memory which are blank, and many times (like when I lived in Colorado) where time is not accounted for.

That, and the odd 2nd hospitalization where I excitedly convinced a woman to admit me to the psychiatric ward of the Boulder Community Hospital, and then after several hours I excitedly convinced her to let me leave again. My recollection of this situation and the lack of my recollection of the surrounding period of time leads me to believe that I was in the midst of either a mixed or manic episode (though I expect manic based on the manner in which I entered and exited the hospital), recognized it, and tried to seek help -only to be greatly un-amused once I entered the hospital, so I left.

Like I said, it is tricky. There are wild cards, and I don’t know that I remember things right, or at all.

“Bipolar type I, most recent episode mixed,” he concluded, scribbled it on his sheet, and moved on.

I left the facility feeling overwhelmed. Conflicted. Type 1? Are you sure? But he just met me, could that be right?

I mean, I was glad for an answer, but was this the right answer? After all, I had also once been given a bipolar type II diagnosis (many years ago), and another time a bipolar NOS diagnosis (a bit later). I only discovered these by reading the old files from prior hospitalizations. Nether of the doctors had spoken to me about why they diagnosed those things, or asked me questions about what I had been feeling. Their diagnoses were based largely on the feedback of others, while I was completely unaware of both the diagnoses and what bipolar disorder was at all.

Still, I had honestly expected his conclusion to confirm one of those two diagnoses, and I most expected NOS.

This whizzed through my head as I kept second-guessing what this man had concluded. My mistrust grew again. On top of that, I didn’t know if I wanted to be in a research study, especially since the study is for people with bipolar type I. What if I’m not? What if that is what I am today, will that still be me tomorrow?

Honestly, I was so confused that by Wednesday morning I couldn’t write a blog post. I had too much to say with no answers, or at least, no answers that I trusted.

(Paranoia, my psychotic symptom of choice, can you tell?)

I am extremely lucky that I had an appointment with my usual psychiatrist on Thursday or the whole thing might have gotten the better of me. I concluded I was going to walk into his office, tell him I wanted to take a break from trying new medications for a bit (at least for a month to give myself a rest after the trileptal fiasco), ask his opinion about the idea of me participating in a research trial, and to politely request he clarify the diagnostic swamp I had suddenly found myself in. After all, he had been seeing me for over a year, so if anyone would be able to get a good sense for my symptoms to make a diagnosis, he could.

You might wonder why I haven’t approached him sooner about this… and in honesty, I might have. My memory doesn’t work much anymore, so it is possible we had this conversation already. And if not, it would be because of

a) the aloofness of psychiatrists in general
b) my overwhelming anxiety about asking
c) my lack of trust in medical professionals

It would be fair to say this mess is of my own making, but even so, when I walked into the waiting room Thursday my anxiety was fast approaching panic attack level. For the first time I found myself feeling grateful he was running late, and spent the extra 15 minutes pulling myself back down into a relatively calm, only slightly-shaky state. I still had to clear my throat a few times too many before getting any words out when I entered his office, but the enormity of his windows (which I always find baffling) helped stun me into conversation.

First, he suggested I take a break from trying anything new.

He read my mind, I thought, this is clearly a good sign. We are totally on the same page!

So I asked how he felt about me doing a research study.

“You have tried SO many medications, I think that is a great idea,” he reassured me before telling me he has a high opinion of the man who runs the research facility I had visited Tuesday. “It would undoubtedly give you access to medications I can’t provide to you, and I heard they are researching several promising ones right now.”

Great! Two for two!

“So,” I went in for the final question, letting it out all in one breath, “I met with someone there and I just hoped you could clarify something for me because he gave me a bipolar type I diagnosis. I was wondering, since I have also seen possibilities for type II or NOS, if you would agree type I would be accurate for me.”

He looked stunned. I’ll never forget it, he actually sat back in his chair like something knocked him there, and then he blinked as if coming out of a stupor.

(And this is the part where I am pretty sure we must have had the conversation before, because he looked genuinely surprised…)

“I have considered you type I since the first day I started treating you,” he said, “and I am genuinely sorry if we haven’t talked about it before now. But yes, I agree with him.”

This time I felt relief.

By this point I had stopped caring what the diagnosis is, as long as I could get a clear answer from anyone. I feel like I’ve gotten the run-around for a long time by many doctors I’ve seen, and it did appear as if he was genuinely either concerned (because we’d already had this conversation) or sorry (because we hadn’t), which either way made me feel much better about the situation.

He said that it is the nature of my manic moments (the fact that they are intense and psychotic) that has led him to this diagnosis, and when I look back on my most recent episodes, their length may be as short as they have been because when any whisper of mania comes on I quickly bombard it with intense antipsychotics and forced sleep. It is likely at this point that if left unattended (as my episodes were previously) they would be as severe as they were in the past, possibly even more so.

So, that makes me two for two this week.

And that, would be just a portion of my intense week in a nutshell, as I find myself inducted into the bipolar type I club.

I don’t know that this is where I ever expected to find myself, but for me a diagnosis is just a tag, just a business card I can pass on when someone needs to know more in a hurry. It doesn’t make things feel any less complicated, and it doesn’t change the fact that none of the medications I’ve tried have worked out. What it does feel like is validation that someone has recognized that I have a genuinely hard time living my life, and acts as something of a reminder that the things I perceive to be my failures are sometimes outside of my control.

 

 

It has been 9 years, 4 months, 3 weeks, and a pocket full of change since my first hospitalization. It is almost funny that I didn’t wind up with this fortune cookie until now.

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Making a Map

I know I have been talking about this a lot lately, but honestly I am a little surprised at how much of a difference creating a sort of road map for my symptoms and episodes has been making for me. It has made the whole gamut easier, from trying new medications (and seeing if I am experiencing a change or not in my symptoms) to knowing when to say no to participating in stressful events (and thereby avoiding aggravating my anxiety).

Sometimes I get stressed out because I like to know myself, but there are times where I have felt like I didn’t know myself at all. Feeling like someone else (just an elusive someone, nobody in particular) has been overwhelming in any number of ways, and it is something that if I think about too hard I wind up feeling ten times more mad than I probably really am.

The trouble is that I knew myself, but I didn’t know the part of myself that was experiencing bipolar episodes. Depression is something that has a long history for me (going back to 13 or 14 years old, if not longer) so it is something I have been fairly familiar with, but the introduction of things like psychosis or full-on mania has been confusing as all hell.

Getting to know this portion of me has been interesting, to say the least, though extremely helpful and not quite as scary as I once had imagined. In any case, I’d recommend it.

I spent about 10 years having episodes, getting caught up in them and confused, and then feeling triumphant and forgetting about them as soon as they passed, so I didn’t spend much time learning about what they were or how they worked. I know there are people out there who have experienced this sort of thing for a long time but haven’t really wanted to turn and look these episodes in the face. That is totally ok, nobody can force you to do anything to learn about it, but from my experience the knowledge really does make things easier.

(Yuck, I feel a little bit like a commercial here!)

Also, there are those of you who are new to bipolar episodes and may have this overwhelming feeling that you don’t quite feel like yourself all the time anymore. Or, maybe you feel like an enhanced, really awesome version of yourself sometimes, but a stranger at other times. I really tried to keep a distance for a while between myself and these other sorts of… episodic occurrences of me, but that meant they were free to cause whatever mayhem they wanted. This might sound a little nutty, but now that I know how these episodes operate, I am able to negotiate with them better and find a common ground.

What has helped me the most with the understanding of bipolar disorder (as I experience it) is creating a map.

The map lets me know what to expect when I have an episode. It can help me notice an episode coming on, or that one is worsening. Basically the map is information about you, the different sorts of symptoms you have when different episodes occur, how long a typical episode is, how frequent, and more. Once you have a good idea of what to expect (which I call a good map) you can step into a place where you have a bit more power over what happens. That might mean predicting an episode before it is fully present, being able to take specific medications or talk to your doctor before an emergency occurs, or avoiding situations that will exacerbate your current state.

I know this sounds simple on one hand, and possibly a little ludicrous on the other, but it has really helped me, -a lot.

You might think this sounds all well and good, but how does one get from point A to point B? Or from somewhere in the middle to point B?

The catch is that this knowledge is not immediate. It takes time, but if you pay attention you probably don’t have to do much more than that, after a while it becomes easy to connect the dots on your own.

One thing that has really helped me is Mood Charting, something I talked at length about during Chart Week a few months ago. If you want more detailed information, doing a search for Chart Week here should give you more than enough.

What helps me in mood charting is that I don’t just track my mood itself, I also track what symptoms I am having, and when. I can reference this information to put together what symptoms happen early on in an episode, and can help me distinguish a low-level mixed episode from a low-level depressed episode (for me it is irritability and energy level that mark the difference).

Now that I know that irritability is an early warning sign of a mixed episode for me, I know not to go out on the town if I’ve been feeling irritable earlier in the day.

Mood charting is also great for understanding how long your episodes last, and how frequently they occur. There are a few people I know who experiencing cycling that they could set a clock by, while others (like me) cycle almost entirely at random. Are you someone who can count on an episode to be two weeks long, for example, or does it fluctuate? Are you stable for a few weeks at a time, or do you go straight from one extreme to the other without stable periods?

Journaling is a great tool for understanding what symptoms are associated with which kinds of episodes as well. I have a hard time re-reading journals, but many people find them very helpful.

It may well be that you don’t know what your symptoms are. Or, you know you feel something but you can’t quite put your finger on it. This is an arena where I really like to journal, because you can describe your symptoms however you like. I like to give mine names (if I don’t know the real name) and I also give the types of episodes I experience names as well, depending on how they make me feel. It might sound curious, but check out any posts involving “crazy girlfriend” for an example.

For a very simple exercise, I like to wake up and try to distinguish how I feel right off the bat. Am I leaping out of bed? Am I begging to go back to sleep? Is this normal for me? How do I feel? It wasn’t until a month or two of doing this that I recognized that my moods in the morning are significantly different than the moods I have in the evening.

As I said before, this isn’t something that one can really learn over night, but practice makes perfect …improvement. Setting up a map with signs for yourself to see what is coming can be very helpful, and can definitely give you an edge when dealing with bipolar episodes.

To me, the best part about learning about my symptoms and episodes is that it has helped me distinguish the emotions I am having as unjustified when I’m experiencing them in an episode. The emotional part of bipolar disorder is what has yanked me around the most, and not knowing when I could trust my emotions and when I couldn’t was extremely frustrating and detrimental. If I can identify a mixed episode before I start being ultra rude to those around me, I’d classify that as a win!

A Biopsy, Emotional and Otherwise

About a week ago I visited the dermatologist for the first time. I wasn’t really sure what to expect (getting poked with cold metal sticks? A giant skin magnifying glass? Maybe I watch too many science fiction films…) but I knew I wanted to ask a few questions.

After my general skin questions were answered (yes, the dermatologist said the most likely cause of my acne was the lithium I have been taking the last two years, surprise surprise) I asked about moles. Who should get them checked? When should they be checked? How does it work?

Instead of telling me she just began to look at them, and then quickly decided (though I am not at big risk for skin cancer, living up in Seattle where the sun never reaches my skin anyway) there was one mole that she wanted to biopsy.

For those of you (like me) who have never been to a dermatologist, biopsy just means they want to cut it off and study it, apparently.

I had no problem with it, jumped up on her table, she did her thing, and I walked away with one less mole.

The thing was, though… as I walked to the bus I found myself feeling increasingly alienated.

This is the first physical piece of me, I quickly concluded, that has ever been removed. Well, apart from teeth. But really, how often is a slice of your physical being removed?

Nausea crept in, and by the time I reached the bus stop the world began spinning and I had to collapse on a bench, sharing it with a silver life-size cast-iron statue of a naked man.

Over the course of the last week, this horrified feeling about a portion of me being taken has returned any time I needed to clean the area and replace the dressing.

After thinking long and hard about it, I don’t know that this is necessarily an unfamiliar feeling. True my horror and slight up-chuck reflex is a bit more present on the physical side of things, but that mental feeling of something being taken is what really bothers me the most.

I can’t help but wonder if anyone else has associated this feeling of loss, or damage to one’s being in response to receiving a diagnosis of mental illness?

I don’t remember many of the moments where I have been handed a new diagnosis of mental illness, bipolar disorder, OCD (which I remember slightly I think), PTSD, the anxiety disorder… but I do remember a range of different feelings upon hearing these things.

Initially;

  • Disbelief
  • Skepticism
  • Excitement (as weird as that is, I found it exciting to have potential explanations to what I was dealing with)

The same reactions I had when I heard the dermatologist wanted to remove my mole.

It wasn’t until the moment I’m alone and faced with whatever obvious wound remained after the discussion;

  • Racing thoughts
  • Depression
  • Panic Attacks

Suddenly I could see it in the face, this oozy, gross place, uncovered by the emotional biopsy done by whatever psychiatrist, Doctor X. 

And my response is the same as looking at the place where that mole was. Horror, a grimace, and the overwhelming nagging feeling like I have just been robbed of a piece of me. A piece of what would have been a normal life, perhaps.

What confuses me the most is that I’ve had time to look at this yuckiness enough to get used to it. The emotional yuckiness, anyway, -the mole thing still grosses me out. Over the last 10 years, I’ve had time to adjust (though, somewhat slowly) to living with this “missing piece” or “wrong piece” or whatever one might call it (maybe just an odd piece), and it is something I’ve integrated into my life.

So I admit, when the mole biopsy happened I didn’t think right away of that old emotional biopsy of a mental illness diagnosis. My thoughts went straight for the idea that there may be one day I could go to the doctor who would do an emotional biopsy that slices off my bipolar disorder. They will check it in the lab, and I will receive an envelope in the mail that says everything went well.

If these irregularities in me are removed, would I react in horror? Would I feel overwhelmed with the notion that a part of my being was now lost, the way I felt about a little meaningless brown piece of skin?

They say the mind grieves when a diagnosis of mental illness is given because of the loss of a life and many dreams that will no longer realistically happen. We have to adapt, to evolve as our lives continue -with whatever comes our way.

So would the mind grieve the loss of mental illness if it was suddenly removed? Absolutely.

Part of me feels terrified to think about that, but the answer is just the same as in the opposite situation. We adapt. We evolve. Life continues.

So I will adapt and evolve with my (minus one) mole situation. Maybe I’ll be gifted a really cool scar, but until then I’ll just keep cleaning it and throw a dab of ointment on there.

10 of the Most Common Reasons People Stop Taking Medication

The most common emails I get are from concerned parents, upset that their recently diagnosed teen/young adult has stopped taking the medications that were clearly helping improve their situation (from an outsider’s perspective). When something has proved to seem helpful to someone in the past,

Why would [anyone] stop taking their medication?!?

I realize that for a lot of people, this is an extremely baffling situation -and it isn’t limited to the young, the newly diagnosed, or the “unruly” patient. As someone who has gone through the process of trying different medications, it can be difficult for me to understand why this notion seems so foreign to people.

So, I wanted to take some time today to address some of the main reasons people stop taking their medications. People might think this sort of behavior is completely spontaneous or unjustified, but you’d be surprised at how much logic actually goes into the process of “quitting” whatever medication, for a lot of people.

1. Side Effects side effects are easily the number one reason people stop taking their medications. The side effects for psychiatric medications cover a huge spectrum of different areas (both psychological and physical), some of which can be quite unpleasant. If side effects are unpleasant enough for someone to consider stopping their medication, I would highly suggest speaking with the prescribing doctor as soon as possible. Stopping a medication abruptly due to side effects can potentially make matters worse if a high enough dosage is being taken to cause withdrawal effects, and trust me. You don’t want that to happen.

2. Fear of Dependance – a lot of people go through one (or several) period(s) where the idea of taking a medication for the rest of their lives sparks fear around the idea of dependance. What if I reach a point where I can’t afford them anymore? What if something catastrophic happens an I no longer have access to the medications I need? What if I want to travel? The idea of having something that is not only helpful, but now seemingly essential to your well-being can be terrifying, because what if it is suddenly taken away?

3. Fear of Losing the Self – this is another extremely common fear, especially for people who are just starting to take medications or are teens/young adults. Will psychiatric drugs alter or diminish my creativity? My intelligence? My personality? Most adolescents are just beginning to to discover who they are and  in that time it can be terrifying to imagine discovering that person (let alone building a life for oneself) with these things dampened or altered. I began taking medications around age 16, and this was a really big fear for me. It is important to consider that the right medication(s) will not damage this “self”, but for many adolescents trying to wade through however many medications it takes to find the “right one”, this can seem like a waste of important, younger years.

4. Cost – it is also extremely common (unfortunately) for people to quit taking their medications because they simply can no longer afford them. There are things you can do to get the medications needed, for more information I would check out Best Kept Secrets For Getting Affordable Treatment for Mental Illness.

5. Not Feeling Included – I would say this is also fairly common for teens or young adults who are in the care of their parents. If someone is not included in the decision-making regarding their own care, I would definitely expect some backlash. Many parents give their child a pill and that is the extent of their involvement in the process, and I am constantly reminding parents that that pill alone will not solve everything. Try to take the time to talk openly with your child about what they are experiencing, try to include therapy or group therapy if you can. If your child is not included in their own medical care (and decisions regarding medications as well), can you ever expect them to continue care on their own after they’ve left the nest?

6. Mania Addiction – this is something I am planning on going more in-depth about a bit further down the road, but addiction to mania or hypomania is a very real problem for a lot of people. If you can imagine, let’s say your body suddenly produces a natural high that lasts for days (often for no apparent reason) for a week every month. Now, you’re given medication that keeps this high from happening. Sure, it may alleviate the bad symptoms you were having, but it also keeps you from feeling that natural high. Do you keep taking the medication? It is a lot easier said than done, and in a culture where addiction is already prevalent (cigarettes, for example) this is something that acts as a stumbling block for a lot of people.

7. A Sense of Shame – there are a lot of ignorant people out there (sorry to burst your bubble about that) that have no grasp whatsoever on the concept of mental illness. Some people face bullies that make them feel ashamed to be taking psychiatric medications, and these people can be peers, co-workers, bosses, family, even parents. Anyone who has sought help for anything in regard to mental health deserves to be praised for overcoming fear, but unfortunately feeling a sense of shame (ingrained by whomever) is quite common.

8. Misinformation/Misdiagnosis – now, more often than you think, people are given misinformation by their doctor or a misdiagnosis (or a series of them, if you’re particularly unlucky). Being told, for example, that an episode that someone experiences is singular is definitely more likely for someone to shrug off medications more quickly (yep, this happened to me). This can’t be skipped over as a real threat to people’s willingness to be treated, and a misstep by one doctor can lead to a mistrust of many down the road.

9. Fear Around Performance at Work – in regard to what I mentioned with mania addiction, there people who rely heavily on this “natural high” to produce a lot at work in small periods of time. There are industries that have come to expect this kind of output from their employees (and rely heavily on it), so there is certainly a genuine fear by a lot of people that taking medications will hinder their abilities to perform as intensely as they have in the past.

10. No Noticeable Improvement – finally, when people don’t actively see any benefit from a drug they are taking, the are much more likely to stop taking it. To come full circle, this is something that should be discussed with the prescribing doctor as they are probably more than willing to try something else instead.

If someone close to you has recently stopped taking their medication without a doctor’s authorization, try having a conversation with them about why. Chances are, there could be some very real physical discomfort they are feeling, or that they have been experiencing some very intense fear around the idea of committing to taking medications.

I just want to note that people have a choice in the matter, so whenever there is a choice, people will choose whatever route makes sense to them at the time. The best thing you can do is be open and willing to have a discussion about where those choices are coming from.

Charting; a Year In Review

Now that I’ve had a chance to talk about mood charts, I’d like to finish off CHART WEEK by sharting a little bit of my own experience with keeping a mood chart.

One week ago marked my one year anniversary of starting my mood chart, and I was curious what kind of change has occurred over time, if any. To be honest, there have been times over the course of the last year where I felt very seriously like my bipolar and anxiety symptoms have been getting significantly worse, very quickly, and the sorts of things I’ve been experiencing lately would be enough to discourage anyone. 

Looking at the data I collected, however, makes me feel at least slightly better, and I’ve not only gained a different perspective on what is going on but I also feel like I’ve increased my understanding.

You can click on any of these graphs to see a larger version.

Average mood rating for the year: -1.55

Here is the standard mood graph for the year, and I’ve broken it down by month so you can get a little bit of an idea how completely sporadic things seem to be at times. I started charting while severely depressed (there on the left end of the graph) and despite a recurrance of some depressive symptoms in september it looks like my mood has been going steadily up from there. As you can see in the March portion on the far right, it has been very up, which is fairly abnormal for me considering the rest of the graph.

These values represent the average mood for each day data was taken, so they don’t quite represent the entire picture. On some days I can go from a -3 to a 3 and back down to a -3, and there is no real simple way to chart that here. For that reason, I’ve included a few additional graphs below to help get a better overview of what this year has looked like.

Average anxiety score for the year: 3.35

I began charting my anxiety level when I was hospitalized, which is why there is a blank gap in the beginning of the graph. The amount of green relates to the amount of anxiety I experienced on average each day. I was a little terrified to look at this one, because at first glance I didn’t see a huge difference over time -but if you look closely, the last third of the graph does show less anxiety than the first third. Even though there is a significant amount still there, the average the last few months is probably around a 3 instead of early on where it looks to be about a 4. As one might imagine, it seems like the stable portions on my mood graph line up with the areas with less anxiety. Go figure, right?

Average number of hours of sleep for the year: 8.68

That average surprised me a little, because I am normally someone who needs more sleep than others to feel rested and refreshed. Usually 10 or 11 hours is more realistic for me, so if the average for the year has been about 8 and a half, I certainly have not been getting enough sleep on a regular basis to feel refreshed.

Reviewing my sleep patterns has waved a big red flag at me, I think I need to start taking my sleeping habits more seriously. Honestly I thought I had been doing a good job of forcing myself to go to sleep when I was feeling elevated, but even so the amount of sleep I’ve been getting otherwise is totally sporadic at best. It is interesting that there does seem to be a loose pattern though, as every 15 days or so there is a deep dip to only 6 or 7 hours (which I intend to investigate further).

Average pain score for the year: 1.8

So the pain scale is based on both frequency and severity of pain. Did the pain reach a point where it felt severe enough to require relief? How many times per day? If the pain of that severity or greater lasted a period of time, how many fifths of the day did it last? So a day of pretty much intense, nonstop pain would be a 5, while a 2 (in contrast) could be an intense headache that pops up once, abates, and then pops up again later, for example. I included body pain/headache pain/& menstrual cramp pain and averaged them all together for the daily scores here. There has definitely been some improvement, and I think there have been a lot of things that have contributed to that.

The first third of the pain graph (with the most severe pain) correlates with the least amount of sleep in that area on the sleep graph, the highest anxiety on the anxiety graph, and the lowest mood on the mood graph. When it comes to mood, physical pain can play a huge role -which can be extremely frustrating for those that deal with chronic pain. In addition, the 3 points on the anxiety graph where zero anxiety was rated for the day line up with corresponding points with a zero score on the pain graph. Coincidence? I think not.

Average number of mood shifts for the year: 2.15

Ok, this one surprised me a little bit… this graph is based on the number of times my mood shifts per day, when the shift is greater than or equal to a value of “1” on my mood scale. You see, the mood chart doesn’t show the whole picture, because I can have a series of mood fluctuations in one day. Apparently anywhere from zero to 14 (the highest I’ve recorded).

That extremely high period that includes the 14 mood swing day (trust me, it was a doozy) took place when my psychiatrist tried to incorporate an antidepressant with my mood stabilizer. Needless to say, my mood didn’t remain stabilized, but he was really trying to make a last ditch effort to pop me out of the severe depression I was in. Unfortunately, it mostly just made my mood blast off in opposite directions every 10 or 15 minutes. So here is a great example of my mood chart helping point out a symptom to me that I wasn’t otherwise getting a grasp on, and when I brought this to my doctor’s attention we very quickly stopped the use of that antidepressant.

 This last graph has really been the eye-opener for me because I really didn’t have any kind of overview in regard to mixed states. I’ve covered all of the days over the last year that have included both depressed and manic or hypomanic symptoms with orange. The result completely shocked me.

Number of mixed symptom days per month:

March 2011 – 10
April – 13
May – 12
June – 6
July – 23 (!)
August – 8
September – 10
October – 12
November – 7
December – 8
January – 5
February – 2
March 2012 – 4

The month of July had twenty three days, 23! That is practically the whole month! If you take a look at the sleep graph, that is also the point where there is a huge gap in the amount of sleep I got (I went on vacation but wasn’t able to sleep most of the days we spent traveling).

I’ve clearly been experiencing significantly more days with mixed symptoms than I ever anticipated, and now that I know I’m planning on talking to my doctor about it next week. For me, those mixed moments can be so confusing that I don’t always put two and two together, so I’m honestly really glad I had the opportunity to see the bigger picture here.

Thanks for joining me through the CHART WEEK journey this week. I hope I’ve provided enough information to inspire some charting, because even as much as I tooted the mood charting horn earlier this week I hadn’t yet grasped just how much new information my own charting would provide me by the end of the week.

It may take a little while to get into the groove, but the amount that you can get out of keeping a mood chart is almost endless.

Keep charting!

Mood Tracking & Technology

Alright, so we’ve talked a little about why charting is a good idea, how to create a rating scale, and what other sorts of things you can track along side your moods, but maybe you’re thinking charting with a pencil and paper is so vintage. And not it the kitchy way, either.

We have a ton of technology at our fingertips, right? Why not use it! We’ve got everything from spreadsheet applications, apps for your mobile device, to mood tracking websites, so I wanted to take a minute to address a few of these programs.

For folks on the go, an app on your mobile device might be a good option. There are a huge number of mood tracking apps, though in my experience I haven’t been able to find the perfect one. The two I’ve listed here have pretty good reviews, one is for Android and the other for iPhone.

eMoods bipolar mood tracker, free for Android, 4.2 star rating

  • eMoods tracks amount of sleep, depression, elevated mood, irritability, and anxiety with an option to denote psychotic symptoms and therapy sessions. Plusses include being able to include depressive and elevated symptom scores at the same time, meaning mixed situations are logged. This is a once per day log with a monthly, emailable graph.
  • The downfalls? Some have complained that the graph is difficult to read, and each trackable item only has a 0-3 scale (with zero counting as “unidentified”).

Mood Tracker: By the Cheryl T. Herman Foundation, $4.99 on the iPhone, 4.5 star rating

  • Mood Tracker allows tracking of mood, amount of sleep, functionality level, and mixed states, as well as a medication tracker (what you’re taking, what dosage, and what time). Both the mood tracker and medication log have an alarm to remind the user to imput data & take medicaitons. Track up to 12 different attributes, once daily log with monthly graphs you can email.
  • Downfalls? Difficulty for some reading graph, and a handfull of complaints about bugs within the program.

Using a mood-tracking website is another idea, and as long as you are someone who doesn’t stray too far from the tendrils of the internet they can be an interesting, reliable way to track your moods.

Moodscope

  • I was just turned on to this free website by DeeDee, a fellow graphmatician over at Disorderly Chickadee so I haven’t done much to try it out yet. From what I can tell, this is a once daily tracker designed to judge your mood for you based on how you answer a series of 20 questions. Moodscope is able to show you a graph of a year (or even more) of your results at a time, which is pretty rare for most mood charting services, and definitely useful. I’m going to try it out for a bit, but going in I know my results will be skewed (since I can fluctuate quite wildly over the course of a singe day) depending on what time of day I decide to answer the 20 questions. Free, easy, and very cool, beautiful graphs!

HealthyPlace.com Mood Tracker

  • This mood tracker incorporates a lot of the elements I think are important in tracking, this is a website that I really think has got a lot of things right. The tracker incorporates mood, sleep, anxiety, irritability, medications, and weight (something you may want to track given the propensity of psychiatric medications to cause weight gain) and provides an area for you to make notes (hooray!). The chart appears to cover only 30 days at a time, but there is also the option of a calendar view to see ratings denoted on dates on a calendar. In the event of severely high or low episodes, the mood tracker can be incorporated with your doctor’s fax or email to automatically alert them. Also a free service, check it out!

Spreadsheets are a great way to keep a table of your daily/hourly information  (should you go that route in tracking your moods), and they are usually capable of creating some graphs with the information you log there as well.

Excel Spreadsheets

  • Excel spreadsheets are great for being able to hold a lot of information, and there is a graphing ability in the program as well (though it isn’t stellar). If you are interested in making graphs for 1-3 month’s worth of data at a time, Excel can do the trick -but don’t expect it to be able to handle a year’s worth of data in one graph. But, for people who get a little OCD about what their analyzing graphs look like, the data in Excel can be funneled into a number of programs that will read it and create a graph for you. The drawback? Having the software itself. Personally, I don’t own Excel, and I am not likely going to run out and buy myself a copy when there are a number of free alternatives (like the one just below) lying around.

Google Docs Spreadsheets

  • I have been keeping a lot of my logs (numerical values) in google’s online, free spreadsheet program through Google Docs. For me it has been a nice, online way to store information without being concerned I might lose the file, and I can open it on any computer with an internet connection (no need to carry around my laptop!). I think this service is free to anyone with a gmail email address, and it has free word processing as well. There is a graph feature in this spreadsheet, but it is very limited. You can use it to get an idea of what your graph would look like, but not much else. If you are using this spreadsheet to keep a log of your numerical data, I would suggest imputing that data into another source when it comes to creating your graph.

If you’ve got data that you’re ready to create a graph for, there are many different programs you can use, depending on how much data you have and how much money you are willing to spend.

Adobe Illustrator

  • Adobe Illustrator creates some nice looking graphs, but it is on the expensive side and unless you are planning on doing other design projects, I wouldn’t recommend splurging. If you happen to have access to it, though, definitely check out the graphing features. Fully customizable graphs with each element separate and customizable on its own. Unfortunately, the data entry portion when it comes to creating your graph is a bit out of control (and difficult to use as you can’t copy and paste) but supposedly there is an “import” feature that includes excel spreadsheets.

Smart Draw

  • Smart Draw is a (supposedly) easy charting and graphing software with a free trial at the link provided. The example graphs look pretty good, but I’m not sure how they would hold up with a large amount of data (say, a year’s worth). The program can be integrated with microsoft office products, includes a ton of templates, and offers customer support. The amount of charts this program can create is mind-boggling, but I don’t have much experience with this program first-hand. Who knows, it may be worth getting the free download to see if it works for your charting needs!

There are really quite a few programs (and practically any program that is a “drawing” program) that have a create-graph feature, but for the most part they are complicated and expensive. Chances are, you already own software that has the ability to create a graph (like Excel, you just might not know it yet) or you may want to opt for a free version, like Google Docs Spreadsheets. Don’t want to mess with the creation of the graph at all? Then I’d recomend something more inclusive, like a mood tracking app or website that turns your information into a graph for you.

There are a lot of ways to incorporate technology into your mood tracking and charting, or you can always opt out of the technological portion and do it by hand. The point is that there is no one particular way that is the correct way to keep a mood chart, and there are enough different options out there for you to be happy with whatever method you decide on!

What Else Can I Chart? Mood Chart Accessories

Now that we’ve talked a little bit about what kind of scale to use while charting and why is it awesome to keep a mood chart (if you haven’t checked those previous CHART WEEK entries out I might suggest you do so before continuing on) I wanted to give a few ideas on how to get more out of it. 

We’ve covered the basics, but as I mentioned in regard to when started charting, I was taking information down on both mood and headache pain. Since then I have expanded my chart to include the tracking of a number of different factors.

In my own chart I use a different colored pen on the same graph as my mood graph so I can see immediately how they are corresponding to each other. On a daily chart (that shows up as a monthly graph) you can do the same thing. You might want to consider tracking any of these additional things and more, if you think up any brilliant ones!

  • Anxiety is one of the first things I added to my original graph. I only use the top portion of my graph to chart it, so I keep the 0-5 scale modified to fit the mild to severe moments of anxiety I experience.
  • Sleep is a great thing to track because it has such a huge effect on our moods. Since I use an hourly chart with a daily graph, sleep is automatically included because I create a mark where I wake up and where I go to sleep. Since the graph covers 24 hours a day, I’ve also been using it to track how many times per night I have been waking up. On a daily chart/monthly graph you can start another line on graph in addition to the line you have going for mood, or a bar graph to contrast your mood line graph. The only trouble with having sleep on your monthly graph is that it is usually measured in hours, so the top value on your graph is no longer going to be 5, probably more like 13 or 14.
  • Pain is a big trigger for me, so I track it several different ways. I have one color that represents headache-type pain, another for other sorts of “body-pain” (including the pain I feel when severely agitated), and a third color for pain associated with hormones, like menstrual cramps.
  • Stress can be a killer, so it might be useful to track what sort of level of stress you are under, from day to day. Knowing how much stress you can realistically cope with and how much you usually crack under can mean possibly avoiding those stress burnouts.

In addition to things like this that are tracked daily, it is also seriously helpful to keep notes of specific things. I write notes in the margins, under the timeline, and even on the graph at times. The more specific you can be, the better, but it helps to have a few set things to keep track of at first until tracking becomes almost second nature. These things could be the inclusion of specific types of symptoms, specific triggers you’ve noticed before, medications, and good habits like exercise.

Symptoms like…

  • Psychosis/Delusions/Paranoia/Hallucinations are important to note for a number of reasons, as taking a note could potentially remind one to speak up about them to their doctor, for one. It also might be nice to know when these things are occurring in conjunction with your mood ratings, as things like psychotic depression are not unheard of and can be somewhat difficult to pinpoint.
  • Mixed states can also be very hard to pinpoint, and I know that for myself at least I didn’t realize I was having them as often as I have been until looking at my charts recently. Denoting the combination of elevated and depressive symptoms somewhere on your chart could be very helpful in helping to see the “bigger picture”.
  • Suicidal thoughts are another one that I make a reference to, and for my hourly graph I just write an “S” under the hour it occurs. This can help me discern just how bad an episode is, because I can quickly tell that a graph for a day that has 3 or 4 “S”s along the bottom is a lot worse than a day with just one.
  • Outbursts are another one that I take note of and it helps me alot. Sometimes I will be having a mixed episode without realizing it, so if I’ve jotted down an “O” because I’ve snapped at someone earlier in the day, that is a pretty good indicator that I’ve been irritable without noticing. Of course, hopefully I will have noticed when I did it because I thought to myself oh no, now I need to mark an “O” on my chart, but nobody’s perfect.

Really, any symptoms you want to keep track of at the same time -even for other disorders or physical problems, can be written down on your chart. And the more serious or bothersome the symptom, the better to include it in tracking.

Taking notes on potential triggers is a great idea and can be tailored to fit whatever your own personal triggers are! Some ideas of potential triggers you might want to take notes on are…

  • Yes ladies, that time of the month. It might be wise to make a little star symbol, or flower, or bar of chocolate, or whatever and be sure to jot down when it ends as well. If you’re a lucky person who runs like clockwork, this is probably a lot less of an issue, but for the rest of us this is never bad information to have on hand.
  • Drug/alcohol consumption would also be a pretty smart thing to track, if you’re planning (or even if you’re not but happen) to partake.
  • Working can be stressful on anyone, so you might want to denote what days on your monthly graph are spent at work, and which aren’t. On a daily graph, I usually mark down which hours I’m at work, because there are times when I can definitely see a big change happening due to the stress of working.
  • Travel can be another stressful situation, so it doesn’t hurt to take a note any time you spend in long-distance transit or traveling long-distance. If you are someone who faces extreme anxiety when traveling shorter distances, it is definitely ok to note those times too.

Personally, I would suggest taking notes on things that really stress you out or give you anxiety, so that if you are also charting the levels of either of those things you know where the big humps are coming from.

Mood charting can be great for discerning which medications are helpful and which aren’t. In the realm of medications…

  • Prescriptions are important to remember to take, so for me part of the ritual of taking them involves putting them in a log. Some of my medications (like for sleep) are as needed, so I want to track when I’m taking those medications to be able to really see what kind of effects they are having on me.
  • Side effects can be written down in the notes near your charting and this can help gauge how long a side effect has lasted, or can held deduce what might be causing it.
  • Over the counter medications are important to include as well. I am actually really thankful that I write down everything I take as I take it, because when I had the EMT’s in my apartment last November when I had that (almost literally) paralyzing panic attack, they had a very easy time seeing what kinds of medications I had taken, and even when I had specifically taken them.
  • Vitamins and supplements are another thing to include, and charting can help us see if they are making a noticeable difference in our moods or general health.

It is important to write down any medications, no matter how small, because part of the idea of the mood chart is to see what is affecting our moods. Many medications can effect them, even things like corticosteroids (which can be given for allergies or sinus infections) and everyone reacts differently. It is important to be familiar with how you react to the medications you take.

And finally, tracking habits like…

  • Food can be an overwhelming topic to take notes on, but there are theories that suggest specific dietary changes can help alleviate mood symptoms. In this sort of situation (as well as for many others) I would suggest tracking what you’re eating. If you want to go so far as to write down exactly what you ate and what time, that is fine (and usually what is required for things like testing for particular food allergies) but even something as simple as listing how many servings of fiber you ate that day -really anything you want to monitor in hopes of improving your health. This can be great for setting a goal for yourself and tracking your progress because you’re holding yourself accountable every time you have to write down what you ate for the day.
  • Exercise is in the same kind of realm for me, and I usually write down what kind of exercise as well as the duration. Yoga, 50 minutes. Running 30 minutes. It can be fun to see what kind of effects exercise have on our moods! I spent an hour on the treadmill while nearly manic last week and felt amazingly grounded for a few hours after. It blew my mind a little bit!
  • Therapy can be good to denote on your chart as well, as it can have a definite impact on our moods both in a short term and long term way.

So these are just a few examples, obviously there are an infinite number of things you can add to your chart and take notes on. The point is to consider what information will be useful to you, both immediately and when you consider what your symptoms are doing on a larger scale.

This may seem like a lot of information, and I know I certainly don’t track all of these things, but as you work on your mood chart you’ll also find that you generally don’t have to track all of these things at once because they usually don’t all happen at the exact same time. And hey, there is nothing wrong with making it up as you go! The idea is to have a personalized system that will help with the management of your symptoms. Accessorize!