Hard questions #1

*WARNING: this is a blunt and honest account of hygiene, specifically the lack thereof – you may not look at me quite the same after reading this, but remember that I am the same person, just struggling to keep my juggling balls in the air*

What I write here, I write to share with you the side of mental illness that isn’t necessarily obvious to the onlooker, be they aware or unaware of the illness. Or maybe its obvious, but not understood. I write it to break through the stigma, if I can, that still settles over the mentally ill and to raise awareness of what life is like inside a head that doesn’t let you be the boss very often.

I know this isn’t going to be glamorous. But believe me: I’m not trying to sensationalise the truth. If anything, I’m under-selling the real story. So here we go:

Some questions are hard to answer.

Some questions are unanswerable.

Some you just wish were!

Like,

“How long is it since you last had a shower?” – husband

 

Ummm…well…

I’m not really sure…ahhh…

Maybe…I don’t know…

I think it was…

Hang on, when did I last work? Was it then…no, that’s right, I dry shampooed…

So, then…maybe on the weekend? Which day was it…

You changed the towels a week ago?

I haven’t used mine yet? Hmm…

…well then I guess…well then I guess that’s when…ah, yeah…so…a week you say…

Now where was I? let me just…slowly walks awaydrowns in shame

Plans to shower tomorrowknows it probably won’t happen

more shamethat’s life!

There are a number of questions that you try your best to avoid hearing, and therefore having to answer, once chronic illness has set in.

Like, when did you last have a shower.

I was never a shower-a-day person. I grew up out of town in drought years and whenever the rain didn’t come we had to buy in tanker loads of water to fill up our concrete tanks because we weren’t connected to town water. For longer than I liked we didn’t shower, we bathed because it was much more economical for water use to run a bath tub full of water rather than have individual showers. Plus when we were little its just what you do; everyone piles in. When we were little the bathroom was also outside in the mud brick section of the house: shower and bath in one room, laundry in another, and toilet at the end. Later on in our school years we got an inside bathroom (toilet still outside) and it was one after the other, and you got to top it up with hot water if it ran cold, which by the time the 4th person got in was a high likelihood, never mind the parents. Especially because some people liked to have a sleep in there, regardless of those following! Okay I was one of those having a sleep in the bath, but I went last or close to last. If you were washing your hair you got to quickly rinse the conditioner off in the shower, given that the bath water wasn’t the cleanest by that point. Then again, showering wasn’t all it cracked up to be since the shower head was too short! It was half a gym workout doing squats under the tap while rinsing your hair!

So I was an every second day washer, basically just when my hair needed washing or my leg hair was getting to liberated woman stage! So when I got sick I didn’t exactly have the best routine to fall back on.

Why is showering so difficult and so irregular now?

There’s no simple, snappy one-liner answer.

It’s a few things.

My shower is in a bath. Lifting a leg over the tub just always seems so…HARD! I think about having a shower, and I think about getting one leg up and over, let alone 2 legs into that bath without over-balancing, the effort of getting my big self up and over into the tub and its just…its…its so…its just, yeah, well, maybe tomorrow.

So there’s that. Plus it takes energy. If I had a store of energy, like in a barn, I would go get the amount of energy that I need with my forklift and bring it back to the bathroom and have my shower. It would be simple, straightforward. I would just take the exact amount of energy needed, use it to have a shower and it would be all good! Sadly, unfortunately, regrettably, energy doesn’t store. It just comes and goes, waxes and wanes. You either have it in the moment or you don’t. There are things that help or not, but there’s no guarantee of having the energy you need when you need it. So, lying in bed thinking about having a shower and I ask myself, do I have the energy to do this right now? And it’s an easy answer, it’s a yes/no problem. So it either happens, or it doesn’t. I.e. it doesn’t. Because all that thinking just used up my having a shower energy! Isn’t that ironic? So now no energy, no shower and I turn my attention to covering up not having a shower, if its been more than a day.

There are things that make it a bit easier. Hubby getting the shower running and frogmarching me to the edge of the tub for instance. Well that’s about it, actually. There are hardly any things that actually motivate me to the point of getting up off my tush and having a shower, even my amazing husband. Even when he asks me to, as a favour to him. This is a point that a lot of people don’t understand.

“Don’t you want to do it for me?”, “Yes I do want to do it for you”.

“Do it for me”, “I can’t”.

“Can’t you even do it for me?”, “I’m sorry, I just can’t, even for you”.

It hurts me to give these answers. I love my husband more than anything in the whole world. We have been best friends since 2003, since we met practically. We’ve been married for nearly 8 years and have shared everything together. If I could do it for him, I would! Come to think of it, if I could do it for myself, I would! But its not about that. Its about not having the energy, the motivation, the drive to do it. If one of those questions comes up, it just makes me feel worse about the whole thing, which is not the intention I know; that I wouldn’t even do it for him, after all he’s done for me. How selfish!!

And maybe it is selfish. A lot of times depressed people have to make selfish choices for their own survival, be it mental, physical, or emotional survival. And it hurts us to do it. But we need to, even if you don’t see why. It’s not about you, its about us; that sounds selfish right there. But we spend a lot of time conserving our resources and we know what we can and can’t manage. But doing that means a lot of navel-gazing, inward looking so you’ll have to excuse us while we’re busy sorting ourselves out, please.

I think it is a severe understatement to say that my husband is long-suffering! He is beyond patient and kind with me, beyond what I deserve for trying his limits so severely with such things as:

  • unwashed hair looking and feeling greasy
  • the same hair tangled into dreadlocks-style clumps that have to be cut out after who knows how long of not brushing my hair, then dry shampooing, then not brushing, then dry shampooing etc
  • eyebrow/underarm/leg/bikini waxing abandoned I don’t even know how long ago anymore!
  • tooth brushing I also don’t know…well I do know cos I brushed them last week once, but before that its anyone’s guess and he suffers them orange with food stuff and still bravely kisses me when I must be repulsive with plaquey teeth and bad breath
  • BO is one area that I think is mostly under control thanks to Dove Invisible Dry with 1/4 soap
  • avoiding hand washing except when its absolutely necessary, meaning much less often than I should

You would think that because I love my husband so much, and because I know that I owe him so much, and want to please him, that these emotions would motivate me to fix these areas. He hopes that I would do it for him, and I’d love to be able to do these things for him, but wanting to do it and doing it are separate entities that rarely collide, I’ve found. Because while I DO want to do it, especially do it for him, wanting it doesn’t give you energy, the kick, the ability to actually get up and do it. I wish. So often, probably daily, my husband may well think that I don’t care enough about him to do one “little” thing for him like clean my teeth. But there’s just something so difficult to overcome in myself to just start to think about doing one of these things. I want to in theory, but practice hasn’t really tallied out on my side.

It’s difficult to explain why its so hard to do these things. After all they’re easy things that most people just do without even thinking about it. But its a common happening in depressed people to get slacker on these things. It’s just one of those things that goes when your mind and your body slow down. It takes 10 minutes of pros and cons to decide that I absolutely can’t go another day without showering, that even my soapy deodorant, dry shampoo and perfume aren’t going to cut it today. Then it takes a good 10 minutes to plan how I’m going to get up, walk the 9 steps to the bathroom (actually 9 steps), clamber into the bath and get the shower going. Then I may actually have a shower, or can it after all and skip another day.

I’m not alone. I was relieved when I found this out. Depression tells you that you’re a slob, and disgusting, and no one wants to be around you, and maybe thats not far off. But knowing that this is a common symptom of depression takes a little of the pressure off, which helps you to take it easy on yourself, which in its own twisted roundabout way means that you’re MORE likely to pick up some of the hygiene slack. So here’s what others have said

“Literally not showering for months. Not changing your clothes for weeks. Not combing your hair for days. Not brushing your teeth for weeks. With depression, hygiene goes out the window.” — Zoe S – The Mighty ‘Worst Symptoms of Depression‘ article.

“Not keeping in touch with anyone, bad personal hygiene and extremely bad reactions to seemingly trivial things.” — Jenny B – Upworthy ‘30 Things Depressed People Do‘ article.

“I love not having to decide if I’m mentally and emotionally prepared to spend time drying my hair after a shower” – a friend who just shaved her head for cancer awareness and fundraising.

“Thinking about going to the gymhaving a shower like”…hopefully this opens to a visual aid giving you an idea of how I think about showers.

But now, a new directive:

“Danika, I strongly encourage you to shower daily” – my psychiatrist

Rats!! *snaps fingers* I was hoping to avoid such a direct instruction!

“Not for hygiene…”

Well that’s surprising! All I’ve considered so far is hygiene.

“…but for your own self-worth. You aren’t showering because of low self-worth, and then not showering further lowers your self-worth. *cue light bulb moment* You have come from a long way back to get back to work and it hasn’t been easy, especially having issues with the pharmacy board and your current job, but you made it. As far as work goes you’re back to where you came from, more or less. Showering daily will reinforce to you that you’re back to where you came from, and improve your self-worth. Your actions inform your mind, just as your mind informs your actions” – my psychiatrist, quoted as near as I can remember.

Well that was all a revelation, I can tell you!

Showering to improve how I think about myself. Not cause its the thing to do, or for hygiene, or cause someone thinks I should. In fact, its all about me! And don’t we like that?

So, here I am the day after yesterday when I talked to my psychiatrist, 5.26pm, wondering when exactly should I have this shower? Cos I’ve managed to not have the time for it so far: dropping off the car to get serviced first thing then doing a jobs run of picking up clothing repairs/script dispensing/groceries/posting a parcel then walking home, breakfast, a nap, another little nap, house inspection, groceries delivered, pick up the car, Officeworks. And now going out to dinner…is there time before? Or when we get home? Hmmm.

I do feel like my head is in a different space though, after that chat. Shout out to my darling husband for dobbing me in to the psychiatrist!! Sheesh!! So, about that shower…

MYOB

[6th June, 2017]

Okay, wait. Just give me a minute, read on and it will all (hopefully) become clear.

“What other people think of you is none of your business” – various, or unknown

I had never heard of this philosophy until I needed psychology and psychiatry to fix my mind, or before I got into self improvement-type thoughts and ideas to do my part. Before the last 4 years, what other people thought of me was a major part of my daily life. Anxiety about who thought what about me, insecurity about how others saw me, fretting over any less than perfect social interaction, losing sleep over a joke at my expense, nightmares about potentially horrific social scenarios; I could go on. But I’ve tried hard to put these things in the past with helpful sentiments like the one above. It doesn’t always work, but it works a lot better than it did before I ever tried it! Now I try to mind my own business when it comes to my life, and just do my own thing.

It doesn’t always work out that you can afford to ignore other people’s thoughts about you. This last week I’ve been dealing with a not-so-hot probation review, a first  ever for me. It seems like it doubles as a first warning so its been pretty hard to process that one without losing sleep and getting pretty ruffled in my mind! More about that later. In the meantime its a challenge to work out what is my business to attend to, and what I can let pass through my brain and somehow spit out without it doing too much damage on the way through. And isn’t this the central dilemma of this philosophy? Applying it 100% would lead to big problems, but knowing what degree to apply it to a situation is not a science; its definitely an art!

So…any ideas? I’m still thinking.

For now, I’m going to go and do the things that I know I can do, and do well, which today is bird watching and photography. And isn’t this a clincher for bird of the day? It’s slightly out of focus here due to how WordPress handles cropping photos, sorry.

IMG_6641

Superb Fairy Wren, male at least 4 to 5 years of age

Something to enjoy, to feel good about, to distract from unpleasantness in life: that’s birding to me. Never mind that for about half of the 3 hour walk it was showering rain. Doesn’t matter that my socks and shoes got thoroughly wet and I squelched all the way back to the car park. Don’t worry that my legs got chafed and my feet got sore. Can’t help it that the long distance photos were all blurry and foggy from the rain and mist.

It was a day out of the house, where I had to get dressed, and eat meals, and talk to other humans; lovely humans who wanted to talk about our common interests and nothing else. Where all I had to do was mind my own business and attend to my own interests and needs. Somewhat selfishly I suppose, but in a therapeutic way. I saw 41 different types of birds myself in 3 hours, which has to come close to being a personal record. I walked for hours in picturesque surroundings which were beautiful, even through rain. And captured photos like the one above, like this one here. Photos that soothe my mind, pictures to look back on maybe, to publish somewhere possibly. And it made the day a good day. Today was a good day. Better than any day since that review. This is a good thing. So for now, I’m good. The rest will come back in time, and I’ll deal with it then, but for now I’m minding my own business.

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Red-browed finch

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.