Accidents happen: Part Two

Did I say “accidents happen” the other day??

What was I thinking?!

It’s like saying its q___t at work; never say the Q word!! It invites chaos and busyness and problem scripts one after another. But I said accidents happen, and so they did! Fate heard me, even though I don’t really believe in fate…oops, is that another invitation to the world to punish me?? Well punish is a bit dramatic, but you know what I mean.

So I’ve been recovering from accidents and errors ever since I wrote about accidents!! It wasn’t enough that I had my first ever minor car accident last Friday. On Wednesday, I had to go and fall down the stairs!! Like a really idiot!

I think it was sleep stupor, but to be honest I don’t really know. It was morning so sleep stupor could cover it; not much of a morning person, me. I took one step down leading with my right foot, another step down now with my left foot, another with my right and then I just slipped off the far edge of the next step with my left foot and I was gone. Our stairs go halfway straight down, turn 180 degrees then the other halfway straight down. Pretty standard. I slipped on almost the last stair before the turn. It might have to do with the stairs being shaped as wedges for the turn and I hit the tiny point of the wedge. I don’t really know how but somehow my left heel hit close to the edge of the stair and just slipped right out from under me and slipped over stair after stair after stair with no grip on any of them. My left leg was a useless slippery pointy thing sticking out in front of me causing nothing but trouble!!!

wp-image--1541538314

Brain kicking into overdrive trying to figure out what to do, hoping to hit the wall at the bottom of the first half of the steps, grabbing the railing by instinct rather than thought, left leg useless sticking straight out front and can’t get a foot hold anywhere, getting half a grip on one stair after another but slipping over each and every one, poor right leg tucked underneath getting banged and scraped stair after stair after stair!!

wp-image--1038676967

Luckily, and there is always an aspect of luck with me somehow, I was trailing my hand down the banister and managed to grab it! And even though my grasp slipped down the banister, it got caught on the post halfway down at the corner and I managed somehow to haul myself to a stop. I’ve seriously wrenched my neck and back and arm because of stopping myself but at least I didn’t go head over heels or something worse. And at least my hand was in contact with the banister when I fell; usually I don’t hold on at all! So it could have been much worse. Apparently its a workplace OH&S recommendation to have 3 points of contact with stairs at all times: 2 feet and 1 hand, or 1 foot and 2 hands if you are that person who just has to push the envelope! So maybe I need to put up some OH&S posters in my stairwell!

Panic as several steps went by and I missed the wall at the end, turning instead to start going down the next flight! Finally gripping the railing at the post as I slid to it and holding on for grim death!! Or is it life? Either way, I managed to stop on that poor banged up left hip with my useless left leg still sticking out in front, and the even more useless right leg underneath and my arm twisted backwards at some weird angle. So by the time my hand found a hold on the midway post, I was through the corner and heading down the next straight with my right leg tucked well under me getting cheese grated on each and every step where the carpet is bare and the strings are coming through. Basically I got a combination of carpet burn and grating right down my shin and a good few bumps on my left hip, which is swelling up nicely. I was feeling pretty shabby!!

So I was pretty stoked to have come to a stop, even if it was at the cost of the whole left side of my torso and arm. But how to get up?? I’m not a little thing, as most of you probably know. And unable to engage to use of either leg and one arm and side made getting up some kind of origami exercise! I actually can’t tell you how I got up, but there were a couple of bad moments where I started to slide again. But here I am to tell the tale!

So I grabbed on for dear life and managed to stop my fall. There was a moment of real horror thinking that the post might let go; I definitely felt it give. But when I went back afterwards it was as solid as ever. But as it turns out 120kg dangling by one arm is not only a threat to the wooden stair railing but to the muscles and soft tissue behind my shoulder blade. OUCH! Before too long I couldn’t turn my head to the left more than 20 degrees, behind my shoulder blade was singing and I was rapidly becoming frozen stiff. So a trip to the physio to get ironed out.

To look at you can’t even tell I’ve had an accident. Well not until I covered the grazes along my shin with white dressings that is, they kind of stand out on my tan! Not intentional but there you go. It saves me feeling like an attention seeker telling people about my accident; the bandages seek your attention on my behalf!! Is that the same thing?

Its amazing the pain and irritation such superficial scrapes create. Bed sheets, leggings, any clothing just rubs so I headed down to the pharmacy for some dressings so I can at least be a bit more comfortable. Now at least the stinging doesn’t keep getting set off again. But stretching the skin by moving it any way including walking is still aggravating. So here we are, another accident. What to make of this one? I really don’t know what went wrong so that I can avoid it again. Just one of those things? Or I should take more care?

So that was my fall. I thought that was enough, how about you?

But no. I get to work and start my usual Thursday; you know, all the packs and stuff that I wrote about recently. Then my boss brings one of the packs to me and says it has been brought back to the pharmacy over an error! That shoots straight through the heart. Especially right on the heels of having experienced a dispensing error and making (possibly) a big deal about it. As it turns out I hadn’t seen that there were 2 loratadine (you know, Claratyne the anti-histamine) tablets instead of one in Tuesday morning. It’s a robot error, but my job is to pick up that type of error, and I didn’t.

I could justify my omission by saying that its not that serious an error; in all likeliness there would be no side effects as loratadine generally has no more side effects than placebo (sugar pill). But the point is that I missed the error.

I could justify it by saying that the patient hadn’t taken it yet so it wasn’t so bad.

I could also justify the error with the conversations I’ve regularly had with other pharmacists checking packs discussing how extra tablets in packs is the hardest error to pick up, compared to other errors: broken tablets, missing tablets, wrong tablets. But I still missed the error. Not good. But it has made me further reconsider my response to the dispensing error that happened to me.

But wait, there’s more!! Unfortunately.

This, I suppose, is what happens when you only work twice a week. Short of them texting you about issues on your days off (it happens!) they save them up for next time you come in!

So, it seems that I dispensed a patient’s 500mg Epilim (valproate) correctly, then attached the labels to 200mg tablets. THIS is a problem. This is a big problem. I don’t know why the patient was taking Epilim but irrespective, taking this error over weeks to months WOULD have resulted in a relapse had the patient taken it: a relapse of epilepsy resulting in seizures, a relapse of bipolar resulting in depression, mania or suicide or worse. As someone who takes Epilim and dreads the probably inevitable day that I relapse, I can totally empathise with the patient in this scenario, as well as my position as pharmacist!!

I could justify this error by…nope, nothing!! I should have scanned the medication against the dispensing; this would have shown the error. I should have compared the original script to the box of tablets to reconcile the strength; this would have shown the error. I could have reviewed the history, but that’s an extra step. All I needed to do was the 2 steps mentioned; that would’ve prevented the error. Luckily the patient identified the error, brought the medication back and no harm, no foul.

Sound familiar?? My high horse is sinking through quicksand and I’m about to go down with it, unless I jump off and acknowledge that I just made an error as significant as that other pharmacist, and how do I want to be treated over this? What lessons do I need to learn? How would I feel about being reported to the pharmacy board? My boss knows, so that aspect can’t get worse, but he was very good about it actually.

Can I console myself with the errors that I did pick up today? 5 missing doses of magnesium in one pack, 2 missing dose of metformin (for diabetes) in another, a broken Panadol tablet making an underdose, a broken clonazepam tablet (for seizures or spasms) underdose, double the Efexor (antidepressant) dose in one slot, a random thyroxine (for underactive thyroid) tablet found in a pack where the patient doesn’t take that medication, and more. Does it make up for letting a more severe error pass through to the keeper? In short, no.

But it does make you think. Here I am, on a squared playing field, accepting that human error exists but there are systems to obey to minimise it, and ignoring the systems is just not on!

Finding the light

Hello friends,

I’m back. Sorry about missing the blog last week! I tried. I came up with one draft, then discovered it was totally over-dramatic and not what I wanted to say. I did another one, but when I read it back over it just didn’t really seem like much of anything! So, here I am with two discarded drafts, no post for last week, overdue for this week and next week is coming around fast! A bit frustrated!

Why am I so stuck? Why am I spinning my wheels? I want to write about suicide, but this time it’s real, somebody that I used to know. And despite however much distance you’d think “used to know” would put between me and this event, it has gotten under my skin.

For people who suffer with mental illness, hearing about another person’s experiences can be a trigger for a worsening of your own condition. We’re so susceptible to worsening when we’re unwell. It’s different when we’re doing well; we’re resilient and strong. This is especially true abut suicide. Talking about suicide, hearing about suicide, reading about suicide can be a trigger for someone who is unwell to start thinking in circles, over and over about suicide. That’s not to say that someone can cause another person’s suicide. But to a person on the edge metaphorically, it only takes a tiny bump to over-balance.

I’m not suicidal. I’ll clear that up now, and relieve any worried minds. I’m actually doing quite well, but this event has given me pause to think about not being well. It’s quite a long time since I have been suicidal. I have been very fortunate that suicidal thoughts have only been a small part of what I’ve experienced over the last 3 years. I tend towards grey days, nothing dramatic. But still, hearing about someone I’ve known, someone who was one of my first childhood friends, someone who I grew up with ending their life creates a moment of questioning of the situation and myself.

Of course there’re so many questions that come with any death by suicide. Thankfully in this case some of those were answered before the last day. The family were well aware of the mental illness and very supportive of their son, including providing a flexible workplace. Relationships were good, things had seemed to be going well. But there was no questioning why he died because the answer was clear: mental illness. Of course there was the question of could we have done more? But the answer is no: medications, counselling, support all given in full. Just an overwhelming sense of wishing it hadn’t ended this way this soon, but feeling that maybe it couldn’t have gone any other way.

Could something have stopped it happening that day? Yes. Would that have stopped it ever happening? No. Could we the long lost friends have done more, kept in touch? Yes. Would it have changed anything? No. Because it’s not about us, the friends and family. It’s about the mental illness battle ground in a person’s head. However much we love someone and want to help them, we can’t climb inside their head and fight the fight for them. We can only do what we can do from the outside.

Someone with mental illness has different questions that are all for themselves. This person had depression, I have depression; he ended his life, so where does that leave me? If it took xyz for my friend to take his life, what would it take for me to get to that point? They took their life this way, could I do that; if not, what would I do? It’s like being inactively suicidal and contemplating ideas and theoretical points of view, but you have no plan to carry them out; no active suicidality (the medical term for being suicidal). It’s like ruminating on whether I’ll get to go on holidays this year, and if I do where will I go, and what luggage will I need to pack? When patients are actively suicidal they will often have their will written, letters completed to their family, plans for handing over the business and literally will have signed themselves out of their life having hoarded enough poison, collected enough rope, built up the nerve to jump in front of the train etc. Then again sometimes it’s pure impulse on a background of ongoing suicidal thoughts that are just eating away at your will to live. A tipping point is reached, and that’s that.

So I’ve had a period of questioning myself: how am I? Am I doing okay? Are things still under control like they were before I heard the news? I run through my “on the edge” symptom check but there are no tell tales signs; maybe I’m a bit more shaky in my left hand, maybe I’m a touch more anxious, a bit more fixated on anything changing. But after giving myself a few days to take the impact of the news, attend the funeral and debrief, things are okay. I’ve gotten through a potential trigger okay.

Which is bully for me! For the family, the friends grieving now and for a good while to come, where is the light? Where are they to look to find something good out of this? One place that I’ve found comfort is to see the men and boys in my old friends life passing the okay sign around on Facebook in a campaign to vow to listen to each other, to talk about mental illness and suicide, and to try to prevent this from happening again. This has to be one of the best ways to commemorate a death by suicide; a pledge to fight it’s influence and talk about it openly.

I know that its difficult for people to talk about this awful thing that’s happening in their heads. And it’s hard for others to hear what they have to say about it! But we have to be brave; be strong and talk about it. Bringing it out into the daylight is the only way to make it less scary, and to take away its power over us. Talk, talk, talk, talk, talk. And remember the souls who couldn’t fight it’s power anymore. It wasn’t their fault, they didn’t mean it or even want it, but they were overpowered. Remember that. They were fighting the battle and lost, through no fault of their own. Remember them. Talk about them. Share their story. There is someone out there that you can help if you talk about suicide.

Check out Conversations Matter for videos, fact sheets and resources for talking about suicide.

Use one of the umpteen helpline services that are available in this country. You don’t have to have a mental illness to call. You can call to talk about a friend, someone you knew who died, or just to learn more about mental health. So many people are reluctant to call, so go ahead and buck the trend! Call! Ask questions, learn things, talk to someone on the end of the line anonymously before you talk to a friend. Whatever you do, do something to improve awareness of suicide and prevent it occurring again.

beyondblue 1300 22 4636

SANE 1800 18 7263

Lifeline 13 11 14 (crisis support and suicide prevention service)

Suicide Call Back Service 1300 659 467 (free service for people who are suicidal, caring for someone who is suicidal, bereaved by suicide)

Kids Help Line 1800 55 1800 (5 to 25 years old)

Victorian State Suicide Help Line 1300 651 251

Mensline 1300 78 9978

Veterans and veterans families counselling service 1800 011 046

Qlife 1800 184 527 (lesbian, gay, bisexual, transgender and intersex communities)

Carers Australia 1800 242 636

Many more helpful phone numbers and web sites can be found at Mental Health Commission’s Get help page

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?

The end

A medication order comes to the dispensary late in the day. It’s from the adult psychiatric ward, who only have an attending clinical pharmacist for half of the day, and a pager service for the rest of the day. Because the order is up to the 7th day and the bottom of the page is initialed by ward pharmacists from 3 different days that show they have reviewed the whole chart, it seems straight forward to supply with no need to page the busy ward pharmacist. Especially as the last initial was from the day prior. This shows me that all of the  work has been done to make sure the order is safe, appropriate, avoids their allergies, is monitored as necessary and is okay with all of the other medications. Not a lot of people see the work that pharmacists do to keep them safe while they’re in hospital, but those 2 letters at the bottom of the medication chart mean a great deal!

I go to dispense the medication in our software, and it comes up that the patient is in the oncology ward! Confusing, since the order clearly has the psych ward written on it. So I ask the oncology pharmacist and get a story like no other that I’ve heard yet!

This patient has met SCLC. That’s medical shorthand for advanced lung cancer that was possibly incurable from the the start, most likely caused by smoking, which has spread from the lungs throughout the body via the blood stream and deposited in the usual place that lung cancer goes to: the brain. Isn’t medical terminology amazing? 7 letters that tell me all of that!!

When a cancer spreads the medical term is that it metastasises. The cancer clumps that have spread away from the primary, or first discovered/diagnosed cancer are known as metastases, shortened to mets. This patient has brain mets. The cancer has spread from the lungs into the bloodstream and traveled around the body before settling in the brain and growing there. This is now a secondary cancer because it has come from the primary cancer. We can prove this by taking samples of both cancers; they will have the same histology or cell type, and the same structure and growth pattern. Each type of cancer has a typical pattern of where the mets will appear. Patients with lung cancer will be screened for brain mets. Breast cancer patients will be scanned for bone mets and etc.

I sometimes hear or read of people saying that a person has breast cancer and bone cancer and brain cancer, as though they were 3 different types. The odds of that are really absurb; it’s a once in a lifetime patient sort of odds. Much more likely, it’s breast cancer which has spread to the bone and then the brain. That’s nothing to do with the anything, just something that I’d like people to know.

SO getting back to the story! Our patient has advanced, likely to be life-ending lung cancer that has spread throughout the body and has established in the brain. At this point they cannot be cured of their cancer without very extensive surgery to remove the cancerous lung and brain tissue, and severe chemotherapy and radiation therapy…and even then it’s doubtful! And its a very high cost to pay, especially removing part or all of the lung/s and part of the brain!! Brain and lung surgery? And possible transplant to replace them? for no guarantee? It would be a very brave doctor to recommend that course of treament, unless the patient were very young and fit…which is unlikely given this cancer is caused by smoking.

So at this point we offer palliative care, or end-of-life care, or comfort care. Or try to.

Usually we try to get the patient back home with the appropriate supports of doctors visits to the home or at their usual clinic, nursing care in the home if the patient can’t do for themselves, plenty of medications and basically whatever it is that they’d most like to fill their final days or weeks or months with. If they can’t be sent home we at least give them a private room, unlimited family visits, their little dog/cat coming in, vases for flowers, unobtrusive nursing care and medications, comforting doctors rounds, limiting anything not fully essential like blood tests or blood pressure checks, and again, basically whatever they want that is feasible.

Once we had a wedding, in the patient’s garden around the side with the couples children and close family then day leave and permission for one alcoholic beverage. She died 3 days later at 40 something. Everyone cried about the wedding, either at it, or thinking about it, or seeing her come in from home in her wedding dress on oxygen holding her kids hands.

I’ve seen patients is deep distress changing completely when their little dog is brought in. They coo and talk to it, cuddle it, put their face next to it, and just relax so much. It’s such a tear jerking experience! The change in them, that peace, all that matters is they’ve seen their little dog and it’s going to be okay, and all is okay with the patient somehow.

But in this case, that isn’t going to be an option as such. In this unfortunate patient, the cancerous growth of the brain mets has set off a full blown psychosis! The pressure of  the extra growth onto the brain stretching the brain sac, the location of the mets pushing on certain areas of the brain, physical and chemical changes etc can cause different symptoms like confusion, delerium but I’ve never heard of this before. Think hallucinations, delusions, aggression and violence…such that the oncology ward wasn’t able to deal with the patient anymore and they’ve been sent to the psych ward! That’s not the place for comfort care, for a nice big room with flowers and family spending quality time at the end of life. Instead it’ll be sedation, anti-psychotics, possibly restraints, surrounded by other disturbed patients in an environment that’s hardly welcoming.

And that’s how little control we have over the end of our lives.

Medical conditions eventually get us all, one way or another. I think we should recognise that. We will all die of a medical condition, and can I add, or mental health condition. And we don’t have a lot of control over any of it!

Now it’s full psychosis as a result of lung cancer as a result of smoking.

It might be kidney failure and second daily dialysis as a result of diabetes as a result of a fatty diet.

It might be suicide as a result of desperation as a result of depression.

Where is the control?

So wouldn’t it be nice if we thought of them all the same?

I would love to live in a world where no one ever described death by suicide as selfish.

Because if we can call suicide selfish, what on earth would we call the death due to smoking or a bad diet?? We feel very emotional about the unfairness and randomness of cancer, but is that really in line with how we think about suicide? Depression can be very random and is never fair. It distresses us to see patients on dialysis and in the inevitable spiral to death that comes with kidney disease, but isn’t that just exactly how we could describe the progress of an unwell patient with insufficiently treated depression?

I’d prefer there be no blame on anyone.

As a fatty who is struggling to exercise and diet through her medication haze and bipolar up and down blips, am I really going to say I told you so to diabetes, high cholesterol, and all the consequences thereof, stroke, heart attack, high blood pressure, kidney failure to name a few?

As a depressive who has spent 3 years trying, trying, trying through all the low mood, low motivation, low energy, low self esteem, low interest, low care and everything that comes in that huge big black box, I certainly can never blame anyone who just couldn’t take it anymore, and doesn’t know how else to escape but through death.

The smoking one I’m still in debate with myself over. I guess because I’ve never smoked and I’ve never had to quit, I can much more easily see why it’s a bad idea. However, my judgement is reserved for those who didn’t know it was bad when they took up the habit. People who grew up in my era (can I call it an era yet?) know it’s bad, and took it up anywhere. But again, because my mind sees all angles, I realise that there could still be a lot of factors as to why they did take it up: parents who smoked, peer pressure left over from the 90s, depression/anxiety, and a bunch more. Point being, I don’t think you should smoke but I do know it can be incredibly hard to stop, just like the gym is something I should do and find hard to!

My aim for us all: let’s work together to realise that in the end, we quit, we exercise, we try, but that’s not a guarantee, just a higher likelihood of control.

 

Partners

This one is for the partners.

My head doesn’t hurt today, so let’s do this.

Without partners, many of us wouldn’t be here today. So many of us owe our partners our lives and our health, however much of that we have.

Who’s we? Could be anyone. I’m referring to myself as someone with mental illness. But it could be anyone with a physical disability, a handicap of any kind, some issue that needs regular treatment and support.

In the background, often silent, are the pillars that we lean on, often heavily, to stay upright.

I don’t think these amazingly supportive people are known and recognised enough. They deserve all kinds of medals, and recognition, and prizes, and awards.

But that’s not why they do it. They simply love us, even in our un-lovableness, and do their best by us and give us the greatest gift ever; someone who will stand by us through it all. That is amazing!

What’s even more amazing? In a lot of cases, they didn’t sign up for this.

They committed to us long before they knew, or we knew for that matter, that we were going to be a burden on them. They could be excused for feeling “I didn’t ask for this, I shouldn’t have to do this, this isn’t fair!”. But that’s not how they react. At least not outwardly, and who would blame them for thinking this inwardly??

They give us love and kindness and support, and that is a beautiful thing! They have such a capacity for longsuffering, even when we are a real trial to them!

Speaking for me, my husband has had to deal with panic attacks, paranoia, depths of depression including being suicidal, not showering for a week, doing nothing around the house, hypochondria, manic episodes, non-existent romantic life, sleeping all the time, having to come home from work to cook, clean, do the washing etc, me not working for 16 months, my absent memory and recall function…I could go on. But this isn’t about me.

This is about him. Sure he occasionally gets frustrated, angry, fed up, feeling overworked and underpaid. I’m not surprised! This is a thankless job! I’m trying to make it more thank-full. And he gets worked up a lot less often than he could!

But without him, I really do often feel like I would surely fail.

He stood by me in the emergency department arguing my case when I was beyond being able to argue anymore. He sat at home for days on suicide watch. He’s been to countless appointments, suffered through my drug side effects, tried to coax me along when I was cranky as anything because I felt lousy!

I’m trying to stand on my own feet more, and I am, a bit. I’m trying to notice the dishes, the washing, the cooking, the cleaning more and do a bit more. Because it means something to him mostly. Also a bit because it makes me feel a little less worse about my uselessness around the house.

I’m back at work, and it’s going well. So I’m contributing to the household a bit more, and feeling a bit more confident in myself.

All things that I do not think I would have achieved by myself. Maybe I would, who knows? No way to find out.

But I do know this. The support, the encouragement, the listening ear, the pep talks from my husband went a long, LONG way to getting me to where I am today.

My GP, my psychologist, my psychiatrist have all commented about what an amazing support he is. I sometimes think my psychiatrist likes to see my husband more than me! Haha!

But seriously, it’s a hard gig when you suddenly have someone on your hands who’s mood is liable to change before you’ve even got a hang of the last mood! In fact

Who is useless with deep depression, sleeping, eating and not showering; who is bouncing off the roof with boundless energy and babbling at 100 mph with mania; who has weird turns of suspicion and paranoia about how the partner is out to get them! This one gets my hubby the most, and afterwards I can completely understand why! After all he has done for me, which is unable to be actually counted up because it’s so vast, for me to turn and say he’s out to get me? That goes like a knife to the heart. Of course it’s not something I even feel, let alone would say on any normal day, but this paranoia has really shown me again who’s boss in my brain, and it isn’t always me!

I’m sure the same applies to many other situations. The question of ‘what would I do without them’? I have another example. A paraplegic man, twice the size and weight of his mother who has cared for him, to the detriment of her physical health, for 40 years!!

How can you thank them enough? How can you ever repay them? How can you ever begin to even out the balance of power?

They don’t ask for thanks, or repayment, and they don’t even consider the balance of power. They just give, and give, and give. What can we do to make it up to them?

I don’t know the answer, but for me it feels like the repayment is getting better and staying better, and getting back to doing my fair share, and giving him a break. How about that? Let’s give that a go.

Of course I’m a lucky one. Not all people can get better. I don’t know the answer in these cases. Maybe it’s one of those challenging things in life that you somehow have to eventually make peace with. Of course I can’t make myself better for life, it will recur at some point, but I can do as much as I can when I can, I guess.

At this point I remember all of the people going it alone.

I feel for you! I don’t say that because you are alone you can’t do it. I think you can. I think maybe you are stronger because you lean on yourself, not anyone else. But I wish that for a little while I could give you the relief of someone to lean on, someone to do the things you feel you can’t, someone to give you a break.

So partners.

Thank them today.

They are amazing, their role in improving our health is immeasurable, and most of all they do it out of love and don’t begrudge us the effort and time and strength that it costs them.

I can only aspire to be such a selfless, loving, caring, forgiving, understanding, giving and undemanding person towards others! Well that list certainly gives me a lot to work on!

Perspective

[Written in 2014, finally finished today!]

One of the techniques that I’ve been working on is looking at life differently.

My psychologist first got me onto this with a technique called cognitive behavioural therapy (CBT) which tries to redirect thought processes.

For example, people with anxiety and depression often catastropise. I would have a thought like, I’m not working at the moment, which would then lead to, I’m not contributing to our finances, my husband is looking after everything and I’m doing nothing, and, what if I never work again and become a vegetable, and I’m totally useless and live forever with other people having to take care of me, and hating me!!

Obviously, to an outsider this is a drastic way of thinking and a rapidly snowballing thought process! Which is not even factual, as I’ve never had it suggested to me even once that I will be doing anything but returning to my previous active, contributing life. Neither is it at all likely! But depression just has to nut out the worst case scenarios and get you to think, ‘what if’?! And the thing is, at the time, you can’t see it for what it is. It feels totally real, and scary, and awful even though other people may dismiss it as illogical.

Depression, does not have logic.

But depressive thoughts can be changed. It isn’t easy, but if you work at it in the right way, you can slow or stop the snowballing and start to prevent the catastrophising.

Around the same time as I started to see my psychologist, I was already involved in the 100 Happy Days photo challenge that I’ve talked to you about before. Happy. Depression. The two don’t naturally go hand in hand. They’re kind of opposites. Making this a real challenge! This involved, every day, taking a photo of something that made you happy. I knew I was suffering generalised anxiety when I took it on, and during the course of the challenge got diagnosed with depression and bipolar.

Finding something in the day that makes you truly happy takes a real change in thinking. It takes noticing the detail in the day, the little things that are often overlooked, appreciating what is often taken for granted.

These were not the happiest days of my life! Needless to say. In fact, some of the worst days that I have ever experienced were smack bang in the middle of the challenge. But did you know that it never once crossed my mind to not go on with the challenge? I never once considered not doing the challenge, even when I was sitting in the emergency department beside myself with suicidal thoughts and in so much mental pain that I didn’t know how I would live. My happy day photo that day? I was wearing my favourite dress with the huge rosettes around the hem and I was eating my favourite Snickers bar!

There’s always something. That’s what the challenge taught me before I was even conscious of it.

Depression is called depression because it’s depressing.

It lowers you down, it lowers your mood, it lowers your mind. It’s the mind version of walking along in life looking at the gutter. All you can see is the dirty, the trashy, the boring, the bleak, the wasteful, the dead, the mundane.

I’ve always been a stare at the ground in front of me and watch for snakes kind of girl. You know, just in case. But now, instead of physically looking down and stomping along to the train to go to work, I started looking up, casting my eyes around me and began to see all kinds of things in that 10 minute walk alone. The wood ducks nibbling on grass beside the path; never even knew they were there! How beautiful the pond looked shimmering in the morning like. How green was the grass, how blue was the sky. How beautifully kept that lady’s roses are so close to busy Box Hill Central!

And it got me mentally looking up. Instead of snoozing my alarm until the last possible minute, and dragging myself begrudgingly out of bed, I started to wake up wondering what I would see today that would make me happy. There is no mistaking that my mental health was in a dire situation, but at least for a few moments of the day there would be something that I found that would give me a glimmer of a smile, a bit of satisfaction because I found it! That thing that could make me happy. And the memory of it could be taken with me throughout the day. It truly proved to me that if you put yourself to the effort of looking up, mentally or physically, you will surely be rewarded.

So in an effort to lift one’s mind’s eye to a more beautiful view we try this technique of purposefully, intentionally looking up. Some call it mindfulness, some call it practising gratitude, some people call it thankfulness; doesn’t matter what it’s called, it’s a thing. A method to get out of the grunge and into the pretty meadows, or paddocks since this is Australia.

Probably this is the most powerful method of changing perspective, although I’ve way under used it! I came to it as a compulsory part of my insurance, and having someone tell you that you have to do something that you think is stupid is never a good starting place!! But I had to change my thinking. I had an amazing logical sensible teacher who was on my wavelength, and the lessons I learned were incredible!

Mindfulness teaches you to slow down, to take more time to take in the things that we usually just rush by. By doing this, you get greater fulfillment out of life.

I’ve also always been a person to try to scrape the most out of every second, minute, hour, moment. I always got up at the last possible moment, showered for as long as possible til I absolutely had to get out, dressed as fast as possible and left the house only when leaving a minute later would make me nine minutes late instead of eight! Because I was always rushing I’d often leave my lunch, my wallet, my phone, my brain at home! I always squeezed the most time possible into my breaks, felt jibbed every time I had to go back, put off going back to bed so I could fit more into the day. Etc, etc!

But anxiety made me realise that this is not a feasible way for me to live anymore. The extreme anxiety I feel when I’m rushing, late, overcommitted is so awful with the nausea, the sweating, the palpitations. And mindfulness reinforced this again. What if you could walk slowly and calmly without a care in the walk on your way to work? How would that be? Wouldn’t that be nice? Mindfulness is kind of addictive in it’s own way, because it’s highly rewarding to your brain. Of course then there’s the real world, but for a little while, you are in total control and that is amazing!

Mindfulness also teaches you how not to judge yourself and others!! Could there be a more powerful tool than this? In mindfulness, you sit with yourself, which sounds funny to start with, but you just sit with your thoughts and all you have to do is acknowledge each thought as it comes, without it being “good” or “bad”. Do you know how often we are bagging ourselves out in our head and we don’t even consciously know it? It’s terrifying! That’s the worst 3 second wrap ever, but I do highly recommend it, and not only for people with mental health disorders; it can help with a lot in life.

Changing perspective.

Looking for the happy, the good, the joyful things in life.

Some people call it being positive, but I’m not a fan of that description. I feel like being positive is ignoring the reality and the badness, and trying to paste over it with being chipper and perky and upbeat!! Maybe that’s unfair but I feel my arm hairs raise and my spine tighten when positive comes up!!

I prefer to fully acknowledge exactly what is present, what the problems are, and try to work with that to change it for the long term good, not for the short term glossing over it. I’m sorry if that’s offensive; but I feel that if the problems aren’t realised, the treatments won’t be effective so it’s important to be honest.

Changing perspective is hard. It’s hard. It takes effort. It takes perseverance. It takes time. It takes motivation. It takes emotional energy, sometimes physical energy.

Most of these are the things that depression takes away from you. Before you even have a chance to notice, depression whisks away your energy, motivation, ability to exert effort. And leaving you a blob sitting in a chair, staring at a wall wondering what to do next, and how on earth you’re going to do it?

Looking up. Changing perspective. Mindfulness. Gratitude.

The outcomes are so worthwhile if you can put yourself to the trouble.

I highly recommend engaging a psychologist, a mindfulness coach, a doctor trained in CBT because it’s much easier to be guided than to have to do it all yourself. If the session is pre-booked and all you have to do is turn up and be coached, you are already on an easier path, from someone who knows.

Of course you have to participate, and at some point in time you will have to do it on your own, but let’s focus on getting started and you will absolutely benefit from whichever path you go down.

100 happy days is different. You can do this on your own, and unlike me doing it all through Facebook, you can do it by yourself in a notebook and nobody has to know. I can’t recommend blurting everything about your journey onto Facebook like I did; it worked for me, but not so sure about all the poor readers, and it might just not be something you are comfortable with. It’s your call, and there are lots of other options out there.

I wish you well on your perspective changing journey!

Avoiding a missed dose

Remember a little while back when I was talking about what happens when I miss a dose of my meds? [Tales of a Missed Dose, 22nd June, 2015]

It’s not a fun experience, and so I go a fair way out of my way to make sure that I avoid it as much as possible! Probably my motivation is just as much to avoid the unpleasantness as it is to keep on my prescribed regimen.

So, how do I do it? How do I manage my medications? What is my system?

strips, tablets, capsules

The strips. This is where the real stuff begins

Is it hard? Yes. Is it worthwhile? Absolutely! Does it get easier? Not so far.

Up until the last few months my medications have been all over the place, add one here, add one there, add one here…that went on for a while! Then the doses were changing and the psychiatrist was fiddling with timing and so on. But lately I’ve had the same meds at the same doses for a while, at least until a week or so ago, so at least I got into a bit of a rhythm with what I’m packing into my tablet box. Although then there’s the thyroxine which must be kept in the fridge, and you can only take 14 days’ worth out at a time. And there’s my lithium dose where I take two tablets every morning, but two and a half tablets on alternate nights with three tablets! That takes some keeping up with!

medication box, dosette

Blank canvas – my weekly medication box exhausted and ready to be repacked

Then there’s valproate which literally cannot be taken out of the foil stripping until you need the dose. I found this out the hard way! The problem arises because I take the lowest strength available which is soluble, and therefore designed to absorb water as fast as possible once exposed. So the first week that I packed valproate into my box, I went to tip out my tablets the next morning and had more-than-soggy valproate! In fact it was more of a glob of paste that smooshed on your fingers and fell everywhere all at once! So I had to fish out all the goopy bits from fourteen small sections of my box and throw out some of my other tablets that had also become soggy and learned my lesson. So NOW, I get out my scissors with my shaky fingers and cut out all the tablets of a ten tablet strip, fold each of the sharp corners of the square into the middle so that it’ll fit into the box compartment, then put it on top of all the other tablets, and try to jam the lid shut. P.S. DO NOT swallow the tablet still wrapped in foil! It has been done, but thankfully so far not by me. I think the sharp edges would give me the hint well before it got as far as my throat; or so I hope!

Epilim

So Valproate, I cut the strip into 10 squares, then fold the squares until they fit into the medication box with the other pills

But you’re a pharmacist, it’s probably easy for you?

I’m a pharmacist second, but a patient first. My systems and medication knowledge is invaluable in understanding my condition and sorting out my meds! In fact, I constantly wonder how people without that knowledge get by at all!! I say that because at times I feel like I’m barely keeping it together: what scripts do I need when I see the doctor (among all the other things I need to talk to him about!), what scripts do I have to take to the pharmacy to get dispensed this week, and when will I get there? What tablets are in low supply, do I have a current script for that? Have I got enough thyroxine downstairs in the fridge, an inconvenience to my medication box packing that the company did not consider strongly enough when developing their product?! Have I taken today’s tablets? Did I take the right time, like did I take the morning tablets in the morning or did I not look closely enough and accidentally take the sedating night time doses in the morning? Did I remember that I must not have fizzy drinks within two hours of taking valproate because it will dissolve much more quickly and make me drowsy? Loads of questions and loads of answers, and it’s still tricky matching them up properly!!

The many faces of scripts, handwritten, computer generated and the pharmacy yellow slip. And yes, my doctors have terrible handwriting!

The many faces of scripts, handwritten, computer generated and the pharmacy yellow slip. And yes, my doctors have terrible handwriting!

So here are my many systems.

A very short time into my Prep year, my teacher commented that I’d lose my head if it wasn’t screwed on! This wasn’t prophesy or prediction of how my life would turn out, but simply a comment on how I was then. I was only 5, but I remember it clearly. It was a kind of epiphany moment. She didn’t mean it maliciously, but it was a pretty apt saying at the time, and for quite a few years to come!

Being organised probably comes from my Dad’s side. Every week he would strip back his tradie van to the bare essentials, remove all the Coke bottles and get it stocked, clean and ready to go again. Of course a lot of his motivation was listening to a footy match on the radio on his own without noisy kids! He would come home at night and the messy house was a constant trial to his patience!! He would get up a head of steam and do a week’s worth of chores before dinner! We all just vanished into the paint work and let him get it done; making any kind of noise meant you might get a faceful of steam!! When I was in primary school, he taught me how to pack for a holiday systematically, starting from the feet and working all the way up to make sure you don’t miss anything. Shoes, socks, tights, skirts, tops, dresses, hair ties, hats etc. I used this for packing, but the rest of my life was less designed and more accidental. Rushing from place to place having too many things to physically fit into the hours of the day and accidents happening all over the place! That came from my mum. Surprisingly, since my mum’s mum is uber organized. Forgot my lunch, forgot my jumper, left my USB with my presentation at home, missed a deadline etc! None of this really taught me the life lesson you would think it should!

boxes, bottles, tablets, capsules

The real deal, all of my many tablet boxes and one bottle…and there’s one box in the fridge

Studying pharmacy was a revelation to me, and it really has gradually changed my approach to life. So has the last 12 years with my now-husband, who is very systematic and had taught me a lot about being organised. Pharmacists have to be so systematic that there is almost no possible way that an error can occur. Each of us has to work out our own system that doesn’t fail when curveballs come out of nowhere, but is a failsafe as much as possible. I’m not going to go through that because its tedious from the outside, but next time you’re waiting in a pharmacy, and they’ve told you the script is going to be 10 minutes even though that’s not possible, and you’re wondering what they’re doing, distract yourself wondering how that pharmacist is ensuring your health and safety.

pink bag, surprise, treat

Bag of medications disguised as something pink and desirable! Cunning

So my medication taking has become a system. It didn’t start that way, because at the start I was on one antidepressant. That doesn’t take a lot of managing apart from remembering to take it! Then I was on two antidepressants, one in the morning and one at night. That took a bit more remembering. Then the pivotal moment when I was diagnosed with bipolar and started on a mood stabilizer, and another one, and another one. It got too much to keep in my brain, so I took the old person option and got myself a medication box so that I could make up a week’s worth of pills at a time, and stay ahead of the game, instead of waking up in the morning to get ready for work, and finding I didn’t have any more of a tablet! Having to squeeze a trip to the pharmacy into my already tight getting-to-work schedule was essential, but stress-inducing!

medication box

Nearly done, got to visit the fridge and fold the silver squares

I have an up-to-date medication list that I’ve written on the back of the box, and that I keep a copy of in my handbag, and a copy of in the NPS Medicines app on my phone, and which I update after every doctor’s visit if any medication changes have happened. This is vital. If anything ever happens, the first thing your hospital pharmacist will ask for is your medication list. Having it up to date means increased safety for you. That’s the most important thing. We don’t want to give you something that will make you worse by allergic reaction or by interaction with your current meds or your medical conditions.

medication list

The ‘official’ medication list, updated every doctor’s visit…maybe I should type it out to make it look less made up!

Every week when there are only a couple of doses left in my box, I repack it according to my list. I cross check each tablet as I pack it, i.e. I take venlafaxine 450mg, which is 3 capsules of 150mg, so I check the list and pop out that many tablets. It sounds so easy, but an error right there could be catastrophic. Cross checking makes sure every prescribed medication ends up in the box, in the correct amount, at the correct time of day, every day. So I sit up on my bed and surround myself with boxes and strips and bottles, my list and my box. It’s actually a satisfying job, ticking each med off one by one and ending up with a neat and tidy box of lifesaving pills. I end up with a massive pile of rubbish, mostly in the form of popped out strips. Pharmacy isn’t exactly a green industry; the medications demand certain wrappings and changing that order would be unsafe.

medication box

Ready to go! Time to concentrate, accidents do happen but good idea if they don’t!

Unfortunately the names of the days have rubbed off the box and remembering the order wasn’t working so I had to relabel the medication spots. I ended up writing AM or PM as well, because a couple of times I’ve taken the morning medications at night and ended up not sleeping for hours, or taken the night meds in the morning and been doped out all day! That was because I started checking on autopilot and not really checking. So now reading the label of the dose reminds me, hopefully, whether I’m meant to take that dose or not.

System change #71! Always updating and changing to improve my safety

System change #71! Always updating and changing to improve my safety

Forgetting is a big part of my life now. I start a story and can’t remember why I was telling it, I can never remember names, I forget a conversation from earlier that day, and many other things. Pity help me if I get to 80!! My husband will have gone mad by then! So I have alarms. I’ve always done this since I only had one med. First it was an alarm that you switched off. Then I’d forget all the same. So I changed my alarm to being able to be snoozed three times. I’d snooze it three times, and forget! Procrastination much?? So I found the NPS (National Prescribing Service) excellent Medicines app and put some alerts in there for the morning and night. These can be snoozed endlessly so I know that it won’t let me forget!

reminders, alarms

The cool app from the good folks at the National Prescribing Service – recommended!

When it’s time for my tablets, I go to the box and look for the day and the time. I tip out all the tablets, and take the foil off the valproate. I count the tablets against the mental dose list, or actual dose list if I can juggle the tablets in one hand and box in another. I check that each tablet for that time of day is there, and in the right dose then scull them! My husband hates this, he thinks that I should take them one at a time, but that would take forever! I’d rather just get them down as quick as possible.

20150520_093805

I’ve developed a new system now. My alarms go off at 8.30am and 8pm. I’m meant to take my tablets when the alarm goes off, but however systematic I am I’m still a procrastinator. I know that my tablets are keeping me in the good life, and that without them I’d be in all kinds of awful, but there’s still that little part of me that doesn’t want the tablets, because it doesn’t want the illness! A small part of me that has the hopeful thought that maybe if I don’t take them everything will just go away. Of course that’s ridiculous! But it’s just how it is. So I snooze, and snooze, and snooze. Ridiculous and childish but there you have it! I can’t imagine how much more difficult it must be for people who don’t acknowledge their illness, are in denial, believe the medications are evil or unnecessary or poison, or are being medicated against their will.

My husband does a good job of asking me if I’ve taken my tablets, but my memory is absurd and I remember taking my morning tablets and say yes I’ve taken my night tablets. A couple of times I said yes yes, and I hadn’t taken them. So now, once I’ve taken them, the lid stays up, I don’t clip it down again, and so both of us at a glance can tell if I’ve taken them or not, no confusion.

Some are empty, some are closed and it helps me keep track and avoid slip ups

Some are empty, some are closed and it helps me keep track and avoid slip ups

Well that’s about all my systems. I try to avoid anything that relies on memory, and try to have a clear, repeatable, systematic way of keeping well. At the end of the day, its fingers crossed and trust in all the steps that have been taken to take care of me.

Hope you enjoy the pretty pictures!