I’m back…

[Started on December 9th]

“I’m back, baby doll…”

-one of favourite quotes from How I Met Your Mother

I’m baa-ack. It’s been a month, apparently. It felt a lot longer! I only know this fact of it being a month since I was here from opening my blog today for the first time since … so it tells me … the 9th of November.

Wow.

And during that time I actually thought up zero topics, had zero inclination to write anything and was pretty much happy to climb into a hole and be a hermit for the rest of my natural life. But the light has broken through and here I am.

It’s been a very full month. I’m trying. A trip away to Werribee, days out of the house doing stuff, hanging out with girlfriends, some actual real live housework. There were, surprisingly, some pretty great times.

And then there were days when I wore my pajamas until 5pm and only left my bed to eat. But you know, looking for the upside!!

There was one amazing week where I thought I’d finally broken through the depression glass ceiling into what normal life could be like, and I loved it! So did my GP: ‘Imagine if this is how life could be from now on? That would be f*@%*^# awesome’. His words, not mine! Just to clarify. But yes, why yes, yes it would.

Sadly for me and anyone my life bumps up against, it was mania.

Oh mania, you heartbreaking devil you. You get us so excited and hopeful and relieved and let us sniff “normal” for 5 minutes, before depression overcomes us again and we all sink back into the swamp!

Normal, or a bit more overdone than normal; either way, it’s a nice change from blergh, uff and erk!

But it wasn’t devastating when mania went this time. Well not as devastating. This time. I’m getting more resilient gradually.

[Updated from here in later December but the computer wiped all my additions and made me so angry I gave up on it! Then I vowed to complete it on January 9th but when the date came around I was staying in a motel without WIFI…ahh the horrors of modern life! So here I am, Feb 9th…and finally I’m back! And saving my draft after every word!!]

Thankfully, bit by bit, episode by episode, high by low by high by low I am taking it less personally, getting less excited and less distraught when my brain chemistry flicks the switch and lands me somewhere I wasn’t prepared for.

So says my mouth, and my head. So I wish, so I hope. And maybe sometimes that’s the case, that I’m less wrung out over it. Maybe.

But actually now that I’m slipping down the slidey slope again I find myself not so okay with that. I don’t want to go down there again. I don’t want to be like that again. But it seems that I’m not being consulted in the matter of what goes on in my own head.

Ironic, isn’t it? My own head, taken hostage by chemicals. Chemicals that don’t even have brains or thinking power or motives – but they pack quite the punch! We’re doing all we can to oppose them but it’s turning out to be more of a war than just a battle.

I’ve been told over that I have tricky brain chemistry. At first I thought it was one of those placating remarks all doctors make to help ease you through the rough period between the diagnosis of depression and the onset of full medication effect, which can be up to 6 or 8 weeks at times in some people.

Although I guess I didn’t hear it said first until I was trying the 5th antidepressant; but I definitely needed to hear something at that point to convince me that I should still hold hope that this one would work! My doctor told me that every time an antidepressant didn’t work, we were one step closer to finding the one that would; we were one step closer to getting better; the depression was one step closer to showing us how it was working and what we could do to oppose it.

That’s a lot of talking for a chemical to do!

Time and experience have unfortunately proved the fact to be true. I have tricky brain chemistry. It’s difficult for the medications that we have available to match the chemicals that are lacking from, but should be in, my brain keeping me from becoming anxious, depressed, manic or a swinging monkey between all three moods!

I’d love to be one of those people who gets diagnosed with depression, gets prescribed whatever antidepressant their doctor has on their mind that week, tolerates it well and after a year or so with successful treatment and other supports, undertakes a careful withdrawal of their medication under supervision of their doctor and continues on with their life drug/medication free. Not trivialising their sufferings, just envious of their rapid and successful long term improvement and freedom from medications.

Of course that doesn’t happen in bipolar disorder; only in depression. Bipolar is not a condition that remits; it’s a life sentence. It’s not going anywhere, and it’s quite unlikely that I’ll ever be free from taking medicines.

But it’s the dream, isn’t it? To be medication free, drug free, not drug dependant; isn’t that the dream of any person tied to medication?

As a pharmacist I have to ask every person/patient I deal with if they take medications. Apparently this is the most annoying question that a person could possibly ever ask! Or maybe I’m just asking it wrong; that’s always a possibility.

When I was working, a distant memory just now, I’d get 50 people a day saying “I’m not the kind of person that takes medication”, “I’m not the type of person who takes tablets”, “I’m not some kind of druggie”! Or my personal pet favourite hate: “I don’t like taking pills”.

Really? Well who does like taking pills? And what exactly is the type of person that would take medications? I guess having to take medications to get by makes me more sensitive to these types of comments spoken from ignorant minds. It’s obvious that they’ve just never given the issue more than a seconds thought, or they’re basing it on inappropriate pill popping they’ve seen on TV.

But just a suggestion, if you ever come across me actually working as a pharmacist in the indeterminate future, please just answer no or pass me a printed list of all your meds with doses, thank you so kindly!

 Moving on.

Tricky chemistry, multiple antidepressants, additional diagnosis of bipolar on top of depression and anxiety.

The diagnosis of bipolar disorder, after the initial shock and rejection of the idea as stupid and crazy (oh the irony of calling it crazy!), was actually not that surprising, looking at it rationally. The failure of antidepressants to work or to work fully is actually an indicator of bipolar disorder, which I knew somewhere in my mind from when I studied mental illness as half of my post graduate studies. Another irony!

What if I’d had the clarity of thought to see it that way back when? To look inside my brain in a rational, systematic, logical manner. But that’s not how mental illness works. It takes a regular brain and clouds it with so much doubt, fear, hurt, pain, sadness, hopelessness etc that you just can’t see.

I’d go to my doctor and say, I was so bleak and black yesterday I nearly couldn’t stand it. And he’d say, how many Valium did you take?

Valium. Brand name of diazepam, used in my case as a sedative and anxiolytic, remover of anxiety and worry.

And every time he said it, it would be such a revelation to me: oohhhh! RIght! I should have taken a Valium! That would have made me feel better. Of course, how did I not think of that? I say every time because there were quite a few times he had to say that to me!! And I’m a pharmacist! Turns out being a good pharmacist doesn’t always extend to yourself! Luckily my husband is happy to jump in and now whenever I’m complaining of my mood he puts on his doctor voice and asks me, did you take a Valium??

I had this sanctioned stash of tablets capable of taking a stressed-to-the-eyeballs or suicidal girl and transforming her into a warm, fuzzy, calm girl ready to take a nice comfy little sleep to get her through the hours until her chemistry improved or she crawled into the doctor’s office, totally empty and out of ideas and ready for the next injection of hope, help and medication changes.

I had it. I still have it. 13 months later! I think I’m getting better at remembering how to render psychiatric first aid to myself when the complicated muddle of meds I’m on just isn’t cutting it, or the depression is just a bit too strong, or the mania is making my limbs dance a jig of agitiation. Or everything is just all too much and the circuit breaker has to be activated to prevent the whole place from burning down! Metaphorically, not literally.

 Because there are still those days. Bleak days. Blank days. Flittering days. Storm in a teacup days. Meltdown days. Frustrating days. Agitated days.

There are less of them. They come less often. They do less damage. They don’t get full control of me. But they do come. They’ll always come.

The key, as they always say, is management. So here we are, my and my team, managing. We’re managing. And that’s pretty great!

Thank you for taking the time to read my great big long shambles and hope to chat again soon x

“Totally incapacitated”

Here’s one of the perks of being a health professional.

When the tables are turned and I find myself on the other side of the bench/bed/clipboard, I can understand the language.

When a doctor, nurse or other health professional forgets to translate the Greek/Latin into English I still know what they’re saying.

I know the medical terms. I know the diagnostic criteria. I know the treatment plan. I know the drill.

Because it’s my language, usually.

“Take these tds. Experiencing anhedonia. Query gets elevated. Ruminating. Appropriate. BP1”

I spent years learning all the terminology so that complex medical information can be quickly and easily communicated to other health professionals. And then spent years of practice learning how to translate it back in a simple, un-involved way to patients and non-health professionals.

So now, when I see a doctor it doesn’t matter whether they use the Greek/Latin or English; I can understand.

This has its downsides.

Sometimes doctors use Greek/Latin code to communicate sensitive information amongst themselves that the patient doesn’t necessarily need to know at a point in time. Information that may have a negative impact on the patient. Information that may alarm the patient unnecessarily. Information that may skew the way the patient sees themselves and reports information to the doctor. Or many other reasons.

Patients don’t like this most times. They want to know. They want to be told. They want the translation of doctor-speak.

And so they end up asking for information that is unnecessary; that will later prove to be irrelevant; that scares them for no good cause; that gets them looking for specific signs and symptoms that may not be there and creates a degree of paranoia; that gets them reporting biased information to the doctor instead of giving the full range of  information that the doctor needs to determine a diagnosis or treatment plan.

For example a patient comes to the doctor with a dry cough that has been going on for a couple of months.

In the doctors’s mind the common causes are viral, post-nasal drip after a cold/flu, or chest infection. The less likely causes may include tuberculosis (TB) or lung cancer. But of course no doctor will tell a patient who has just walked in to the surgery that they may have lung cancer or tuberculosis. That would create panic, scare them for no reason and bias the patient to give information that they think is related to lung cancer or TB. It would create a lot of emotion that would take a long time to deal with and is unnecessary.

Instead the doctor runs through a series of questions to rule in or rule out different diagnoses and comes to a conclusion, makes a diagnosis and comes up with a treatment plan. Without causing bias or terrifying the patient by telling them the options that they are ruling in and out. Without giving them unnecessary or irrelevant information. Without telling them information that somehow they think they need to know.

They communicate the diagnosis and treatment plan and send the patient on their way.

(This is an example only and not a comprehensive diagnostic description!)

The unfortunate thing about knowing the language is that I get these sensitive bits of information. I get information that I don’t need, that may end up being irrelevant. I get information that scares me, that changes the way I think about myself and the way I look for symptoms. I get information that is more than I can handle, that weighs me down.

Here’s a translation of the terms above:

“Take these tablets 3 times every day. The patient is suffering from an inability to experience pleasure in, or enjoy, day to day life. There is a possibility that the patient suffers from episodes of mania including high energy, extra happy moods, enhanced appetite, lack of judgement and self control. The patient is experiencing circulating thoughts on the same subject that keep going around and around and prevent other thoughts. The patient is behaving in a reasonable manner and is not demonstrating any unusual symptoms. Bipolar 1 disorder, otherwise known as manic depression where a patient can experience episodes of severe depression and then alternatively experience manic episodes of high energy, excessive behaviour and ultra happy moods.”

So you can see why health professionals are taught Greek/Latin!! It makes communication so much simpler and easier. Saves a lot of talking in critical situations.

But for me, instead of hearing a few blah blah words, I get the whole lot dumped into my brain. Which is a lot of information. Especially about things that aren’t confirmed and are only a “query” or possibility. It changes the way I scan myself and look for symptoms. It changes the way I think about myself. It confirms the negative symptoms. Sometimes it confirms that I’m doing okay. Sometimes it confirms ‘maybes’. Sometimes I just don’t want to know!

A few colleagues have said to me at different times: “so what antidepressant did you choose?”

I guess it’s a tendency of health professionals to semi-diagnose themselves, think out a probably treatment plan and consider the pros and cons before going to another health professional, usually a doctor.

But that’s just not how it has been for me. I got sick. I felt awful. I got desperate.

So desperate that I just wanted to put myself in someone else’s hands, to not have to take care of myself anymore, to give the responsibility over to someone else.

I didn’t want to think about treatments, I didn’t want to know about the decision making process, I didn’t want to have the burden of deciding which antidepressant was most appropriate for me, a 26 year female of child bearing age with irritable bowel syndrome, reflux, previous clotting disorder and high blood pressure while taking an SNRI, venlafaxine, exercise-induced asthma, previous failure of therapy while taking an SSRI, fluoxetine, feeling suicidal despite taking 2 antidepressants for the prior 2 months.

I didn’t want the knowledge. I didn’t want the automatic analysis that I’m trained to give to any clinical scenario. I didn’t want to have to think it all out. I just wanted someone else to figure it all out and fix me.

So my message: think before you ask for knowledge, before you demand a translation from your doctor. Do you want the knowledge? Will you be able to handle it? How will it affect you? Do you really need it?

Or is it better to sit back, trust the doctor, and believe in the treatment that they have tailored specifically for your personal characteristics?

I’m not suggesting blind faith, or unearned trust but my recommendation is to think about what you ask of the doctor. Because they do have to give you the answer, even if it will only harm.

Because some words you can’t un-hear or un-read. Like when a doctor writes an insurance report for your income protection payout and gives it to you unsealed because you understand this stuff. And you read it and the reason he’s written for you not being able to return to work is that you are:

“totally incapacitated”.

That will hit you like a brick! It will make you re-evaluate your progress and current state of sickness/wellness. It will get you wondering if you are actually worse than you thought. It will get you wondering if you are useless.

It will start a chain of self-doubt and pondering. Suddenly you’ll think “can I” instead of “I can” or “I will”.

Am I actually a capable person who lives and breathes and cooks and cleans and drives and makes decisions and has responsibility?

Or is that a delusion? Am I actually not doing anything at all?

KNOWLEDGE IS POWER.

But can you manage the power or will it overwhelm you?

BE CAREFUL WHAT YOU WISH FOR.

Are you wanting to know details that can have no advantage or benefit to you, and are best left well alone to someone else’s responsibility?

Take it from me, if you will: you may save yourself a load of stress and anxiety, sleepless nights, fretting and worrying by leaving be details that will only weigh you down.

Let alone and be free.

wooden boat on an Amazon tributary at sunset

Peaceful serenity at sunset in the Amazon Rainforest near Puerto Maldonado, Peru