I did a bad thing…

I did a bad thing.

I got sick, and then I started getting better, then I stopped. I didn’t get better. I just stopped.

I’m in illness limbo. I’m much better than I was when I was severely unwell, but much worse than I was “before”, before I ever got sick. Well okay, maybe not much worse, but worse. I’m not going forwards, I’m not going back. I’m not bad enough to complain to my doctors, but I’m not where I thought I’d be, back to “normal”.

It’s been a long time now since I got sick, and I’m definitely well over the acute phase of crippling anxiety, black depression and the odd weirdly happy and effective days of mania.

I was just commenting yesterday that I never have dysfunctional anxiety anymore; just regular, everyday person anxieties that are reasonable and well founded and manageable. But I was wrong. At that very moment it was sneaking up on me again and bam! it got me!! But only a bit dysfunctional. I don’t have the darkness and hopelessness of depression, just the sluggishness and lack of motivation and tiredness…but even that waxes and wanes giving me better days and worse days due to no particular reason. Mania continues to be a little brightness on the horizon that breaks through any residual depressive effects and gives me a little happy and useful and wish-I-was-like-this-all-the-time day or so, here or there!

I’m medicated like you wouldn’t believe, and a recent experiment my psychiatrist and I tried of reducing my meds has shown me very clearly that without these meds, I’d be right back in the thick of my acutely unwell stage!! It’s not like they aren’t working; they are, they really are! My moods have been a very difficult case to crack and it has taken 4 medications for mood and months to years of appointments to get on top of the main symptoms. And they work. I can, somewhat distantly now cos it’s been a while for some, remember how I was before and after starting each one, which may just be my saving grace down the track when I, like every bipolar patient, get to the stage where I think I might just be better off not taking my meds. One request of you, friend: don’t be the person who suggests I should go off my meds. The consequences of taking on that responsibility may well be more than you can bear. You take my life in your hands if you suggest any such thing. For all I complain about where I am, I always know very clearly that I would be so much worse off without my meds. No question. Ever. Life isn’t perfect but taking away the crutch holding me up isn’t going to help. So save it, keep it, sit on it, hold it in, swallow it; you are not helping anyone, almost ever, by making any such suggestion. You are warned.

But here we are. I’m not sick, but I’m not as well as I thought I’d be. As I hoped I’d be, planned I’d be, “knew” I’d be. Isn’t this the dilemma of every patient with a chronic illness? I go to the doctor with my illness, the doctor says okay I’ll treat your illness, I hear “I’ll get you back to normal”, and go on my way happily ever after. I think I’m presenting the doctor with a chest infection that he can fix, and then return me to my previous health. But this is not a curable disease. The treatment works, the doctor says I’ve treated your illness, I look forward to getting back to being me, my old self, and then, as the Goons would say…suddenly, nothing happened!! Yes the treatment worked. Yes the doctor has done his job. But this illness doesn’t go away. Because that’s not how it works. The illness stays. The treatment stays. The illness has just been put back to bed for a while. But there are some residual effects that haven’t been buried and they remain and irritate me. Because that’s how it works. I don’t know what it would take to get every last little bit of it under the surface…I don’t think I want to know because it either isn’t possible, or the trade off would be too severe.

I’m starting to think “normal” isn’t a reality that I’ll ever reach again. I’m starting to think that my life has been permanently changed. I’m starting to think I’m stuck here.

I don’t know.

All I know is I’m here, and everyone seems to want me to get fitter, healthier, stronger, slimmer or shall we shall less large (keeping it to reachable goals), more energetic, more involved in my own life, more something or other. And don’t mistake me, I want that too. I want it all. It’s just that I can’t see how. I can’t see how to get there. Some people say, well you made it this far through, I’m sure you can do it. But my little/big secret is, all I did so far was hang on. Through all of it, I didn’t really do anything that active; I just hung on. Now the goals require something more active and I don’t know if I can do it. I’m not sure that I can do what’s required. I guess that’s why I’ve stalled here. The next step possibly requires more than I can give.

Aaaaahhhh. Sigh. I did something bad. I stopped getting better. Can I start again?

Advertisements

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

Progress

16th August 2014

Dear friends,

It’s been a while! My apologies. Would you believe that the reason for this is that I’m moving on, happily living my life? Joyfully and happily I can tell you that this is the new way of life here around about me. It’s very exciting and I’m very relieved because for a fair while there I just wasn’t sure how it was all going to come together for me.

I read a meme recently that said that depression lies and I can absolutely concur with that!
Depression lies.
It tells you that you’ll never be happy again.
It tells you moreover that you CAN’T and WON’T be happy ever again.
It tells you that there is no change that you can make, no addition or retraction that will make enough difference to lift you up into an acceptable life.
It tells you not to bother, it’s not going to make a difference anyway so it’s all pointless.
Might as well just lie down and wait for the inevitable end.
In fact, why not help yourself out and hasten that end, save yourself and everyone else a lot of feeble meanderings and bother, all for nothing; just get it over.

And so on and so forth, forever and ever! No reason to rehearse all of that again. Even now remembering these things reminds me of the lethargy, the tiredness, the sadness, the alone-ness, the can’t-do-anything-ness of these lying words.

So when I say I’m relieved to be living happily, I mean megaly relieved! It is an ecstatic feeling to be out and away from the big black cloud, out in the sunshine, living life like the “ordinary” people.
Whoever and wherever they are. If I’ve learned anything through the experiences of the last long 18 months, it’s the fact that nobody has a easy comfortable trouble free life. Everyone everywhere has troubles and problems and you just don’t know who where is suffering what. So truly all we can do is to be kind to each other. That’s not always easy, and I haven’t learned the secrets of it but it can be a life goal to aim for at least.

I’m not saying that I’m out and away from the black dog and that I’ll never be troubled with him ever again. Far from it. But for the first time in literally a year or more, I have had two months of stable moods and this is such an amazing and thrilling thing that I could just dance!

For two whole months I have had no episodes of deep depression, no periods of mild depression and in fact have not been depressed hardly even a little bit at all! I have not had any mania, any intense feelings of can-do or rush rush rush or hilarity or overdone-ness. Not even at all. Two solid months of just being even. Sitting pretty. Same mood day in day out, week in week out and I’ve finally clocked up month in month out!! YES!!!

Ah it is truly glorious, out of the shadow and into the light 🙂 Can you tell that I’m a little bit happy and excited?!?

I’m not saying everything is hunky dunky. There are still issues. But that large top layer of major problem has finally been cracked through and it’s a beautiful thing! Being human, of course once the major problem is looking to be in good order, our brain that is programmed to scan for problems 5 times more than benefits starts kicking up other smaller, but in their own way relevant problems. Which we’ll come to later on.

But for now, I’m blissfully enjoying this feeling of having the weight of bipolar lifted up off my shoulders for the time being. It’ll be back; it’s here for life after all. But we can enjoy every last bit of this period of respite.

Thank you for every person, every thought, every word, every kindness, every message, every email, every prayer, every visit, every coffee, every meal, every anything that has given me a booster along the way. You all have helped build this success and I hope that each one of you can join in my happiness and delight right now.

Much love to you all and look forward to catching up with each of you soon,

Danika,

“But you don’t look depressed…”

Sometimes when people experience clinical depression, they can end up showing how they feel in their facial expressions and body language. Maybe not a lot. Maybe not at all. But there may be similarities in their demeanor to how they feel inside.

Comments that have been made to me over time like “you don’t look depressed”, and “I never would have thought you were depressed”, and “you are always so happy” have me wondering often what other people really understand depression to be. And how they think it should present.

Depression is a chemical imbalance, a shortage of serotonin which is a hormone that influences your emotions. It exists in the mind but can affect the body too. It’s classed as a mental illness.

It’s presence anhililates your mood, leaving you intensely worried about anything and everything that you previously had never even thought of, very sad about memories and thoughts and life, negative about daily life, unmotivated to live and succeed, tired of living, lacking interest and enthusiasm in anything that you used to love and enjoy, and finding life very difficult to live..

Other chemical imbalances that are classed as illnesses include shortage of insulin (diabetes), shortage of thyroxine (hypothyroidism), shortage of iron (iron deficiency anaemia).

Why is it that there is an expectation that there should be some sign of depression in your looks? We don’t say to people, “you don’t look like you have diabetes/hypothyroidism/iron deficiency anaemia”. What is the difference in our thinking between depression and deficiencies that affect our physical body? How do we expect a hormone imbalance to show in someone’s face or body?

How should it look? How should I look? Should I not smile, to show that I’m depressed? Should I be giving a better impression of being down? What sign are you looking for in me that would tell you that I am depressed?

I am genuinely interested in the answers to these questions and would love replies!! Please let me know what it is that tells you that a person is depressed.

I sometimes feel the symptoms of my mind showing in my person. I notice that on “off” days or “down” days my face falls into a stare or a frown by default. I sigh a lot. My shoulders sag; it’s just too much effort to hold them up. I get dry eyes from staring into space without blinking, so my eyes get sore and red. My smile takes effort to paste on and I worry that it ends up looking a bit fake or forced; it feels that way! I laugh but it’s a bit feeble and forced too. These are my “slump” days.

‘And when you’re in a slump,

You’re not much fun,

Un-slumping yourself,

Is not easily done”

– Dr Seuss

I literally drag my feet; my legs feel heavy. Sometimes getting up the stairs to bed feels like climbing Mt Everest! And I trip over my feet! I become ridiculously clumsy. Walking more than an inch out of my way feels like a marathon. I hear words like ‘gym’, ‘exercise’, ‘go for a walk’ and my inner person shudders and wants to go into shut-down mode before I can be forced to do something so very impossible! I hate the idea of leaving the house.

But that’s at my worst. On medium to good days there’s probably nothing to notice in my person that would really give you any clue to what’s going on in my head. On these days I have a bit to a lot of energy, a bit to a medium amount of motivation and I have effort to put into living my life.

I might start to talk about or actually go to the gym, I might start having lists of things that I want to accomplish. I might have plans for social catch-ups, entertaining or going out. I’ll start to have projects and hobbies again.

I might start chatting your ear off, although that’s more likely when I’m getting a bit over the line into mania land. Then I have loads of energy, epic plans and motivation to boot!! In mania land I start planning my return to work, how I’m going to do 50 million things in a day and get excited about everything! I smile, I laugh, I giggle!! It’s fun, but never lasts too long. But it gets me hopeful that I’ll be happier in the future.

And on days like this, there’s really nothing to see! Nothing to show what’s inside, what’s under the surface, what’s going to come right back in a few days. These are the days when you’ll see me out and about, smiling and enjoying life.

Then there are the anxious days. Days when my heart is racing, my breathing is fast and my fingers, my hands, my head, my feet, my legs are tap, tap,tapping, shaking, clicking pens, jiggling, clenching, stretching, moving moving moving! These days are easy to tell. I can’t sit still. Literally!!

And so you can see that there is a continuum here, a line in the sand that shows the variation in my moods. From deeply depressed and almost catatonic to mildly depressed but able to drag myself through life to okay but buzzing with stress hormones to too anxious to hypomanic, a milder form of mania.

So: when I look in the mirror, what do I see? A pair of eyes looking back at me. Do they shine, or stare, or cry? Does the mouth smile, pout or sigh? Is the hair washed, shining or dirty? Do I think myself gross or pretty? It can be a different answer every day.

And what do you see? Unless you come to my house and let yourself in and climb up the stairs to my bedroom you will never see me on a bad day. You may see me on an okay-ish day, an anxious day or a manic day. But if you see me, it pretty much means that the signs of major depression aren’t in my face or my person. They might be in my mind and my thoughts but you probably won’t see them. So how I look probably isn’t the best indicator.

So you will likely see me with a smile, with a laugh, with some enthusiasm for life. You won’t see me with my worst frown, at my most catatonic, in my slowest state dragging my feet around. On those days when I get up mid-morning and have a nap before lunch and another one after lunch I rarely leave the house. I’m not interested in anything, I’m pretty much waiting out the day til I can go back to bed for the third time and shut off my brain to escape the day. I’m just filling in time, surviving til my mood swings up again.

It’s a chemical imbalance, a shortage, a lack. There may not be anything to demonstrate my state. It’s just another day in the life of illness, managing as best I can with the aids I have to get back closer to where I left off, before my brain snapped!