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…

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Slowing down

If you look carefully, and you shouldn’t feel the need to, you can see the signs of me slowing down. Mornings get harder (and they’re never really my strong suite, but I’ve impressed myself lately), I stop answering the phone (which is always my strong preference but sometimes I’m better at it), I stop doing anything much around the house (which isn’t saying much but still), I stay in bed longer and longer, getting up and going is harder, and I dive into my laptop and live there because its more predictable and controllable in there than in the outside world. I jump into a world that isn’t reality, where beautiful music and sitcom laughter falsely pep me up. But I take falsely pepped up over no pep most days.

This week I haven’t been doing so well. I know why, but I can’t seem to shift it and improve my mood. There’s just been this one thing that’s bugging me, and I haven’t been able to physically do anything about it to this point and its just biting and biting. That has worn me down as well as consuming my thoughts with less than impressive ideas about myself. It’s brought about a constant level of fight or flight instinct in me, and between palpitations and just feeling amped up it hasn’t been fun.

At work on Sunday a patient came in desperate for something to help him sleep. He really seemed quite beside himself, saying he can’t get to sleep til 2am, doesn’t sleep long, and then is bombed out all day and can’t get anything done for being tired. It seems like a pretty clear case for handing out a Pharmacist Only sleeping tablet, but this man is on an old school medication that interacts with EVERYTHING! He was well aware of this and told me about it before I could ask about other medications. So I did the proper thing and checked to make sure that I could offer him a safe option. Most of the medications we can sell are sedating antihistamines like Phenergan and Polaramine which you may well have heard of. But these interact with his medication so they’re out. There was only one option (other than referring him to his doctor whenever he could get in) so I set him up with that, explained it all to him, reassured him that it was fine, advised him to take a half dose to start with and we both went on our way happy.

Then I got a call from him saying he’d read the leaflet in the box (of course, he would be the one in twenty to do so!) and it said not to take it. I explained again that the reason not to take it with his medication was because of drowsiness not another side effect, and in his case we wanted the drowsiness. At this point I recommended he discuss it with his doctor before taking it if he didn’t feel confident, but he said I was the medicine expert so if I said it was okay, then he was okay with it. Flattering to hear, but a bit of a terrifying responsibility at the same time. But I was happy from what I read so all good. But that call back set off some doubt in myself, some insecurity that maybe I got it wrong and I just cannot get rid of the [insert adjective] questioning in my head!! I looked it up again, and again, and although it seems right, there’s just something!! Did I do the wrong thing? Should I have not given him anything and hoped he could see his specialist soon? Is my knowledge still not up to date enough? What if something happens?? That last one is a killer of peaceful thoughts! Is it likely? No. But…and that is pretty much the loop my brain is feeding me.

I’ve tried to breathe: in 2 3, out 2 3 4 5. I’ve tried distracting myself, thinking of something else like our holiday to Queensland sometime later this year: I now have put together the most thorough bird watching to-do list that you’ve ever seen, have an order pending for a Cairns specific bird book, and GPS coordinates for good locations! I tried eating: fail. Telling a colleague: they weren’t concerned but what does that mean? The responsibility doesn’t rest on their shoulders so…I was asked to work yesterday so I was going to look the patient up and give them a call to check everything is okay, but my shift got canned. So that phone call got pushed out til tomorrow. It’s been a long week!! I’m just stuck in quandry, in limbo waiting for the knife to fall, the bell to toll, the consequence to descend on me. ARGH!

So my mood has struggled. Monday I was in bed til lunchtime, or after lunchtime; sometime around 3pm possibly. I don’t think I did a single thing. Wake up, sleep, wake up and breakfast, sleep, wake up and snack, sleep, wake up and drive 2 minutes for KFC, sleep, dinner, sleep. Very interesting. I was bugged by this sleeping tablet business all day, but I didn’t realise how much it was sapping my energy, motivation, interest in anything else til later. But every time I woke up either overnight or during the day it was right there, clear as crystal in the front of my mind!

Yesterday I managed to get out because I had a voucher with a use-by date to redeem at the aquarium, and at Pancake Parlour; freebies are a good motivator. Breakfast/brunch near an open fire while sorting bird photos on my laptop was pretty fun!!

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Then on to the aquarium where I enjoyed walking around in a removed kind of way, apart from the lovely shallow rock pool with little rays and elephant sharks (which are so ugly!!) and little fishies; that was awesome. Then on to the behind the scene package where we got in a glass bottom boat and watched rays and sharks and fish swim just beneath us. That was pretty cool. But the breakthrough was feeding the rays. I’m not talking about the little ones, I mean the Smooth Stingray species that is 3 or 4 metres across. They come up to the side of the tank for feeding, and they aren’t meant to, but they flap flap flap their “wings” against the side and cause huge splashes!! So naughty, and so fun fun to watch and take photos of! That got me laughing out loud; I really enjoyed that. I was smiling for ages after that.

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Then I went down a couple of levels to the bottom of that tank so I could watch the big sharks and rays swimming around through the glass; another wonderful experience! That really did it for me, and it is SO important to have things that do it for you on not so great days. Last stop was the penguins, and a cute penguin onesie for a baby who I know will be coming later in the year. I was still wrecked by the end of the day, I was still dragging myself around the levels of the aquarium, I was still tired but I got some smiles and laughs in which makes it a win as far as I’m concerned. It didn’t take much to suck that out of me, but at least it was sucking from happy to regular, not from regular to down. That’s a good thing too.

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We had a chat last night, hubby and me. Something about me being in a rut, lost in my laptop, not really engaging with the world or him. And I recognised it then as a symptom, that I really was down a bit and struggling a bit and it was cause and effect happening right there in my easy chair. I was almost at a point to make an appointment with my GP for a pep talk and pick me up, but I’m still holding that card because I see my psychiatrist next Tuesday.

So what about today? There is purely one reason why today worked. Wheel Women had a ride on that I had RSVP’d too but wasn’t sure if the weather would turn out good enough. Last night hubby said: “go even if its raining because there’s only meant to be a small amount of rain, so if it’s raining its probably nearly done”. And it happened exactly like that. Even though it was POURING rain when I woke up, I got up, got dressed, got ready, checked in to make sure the ride was still going ahead, and drove over to Kensington. It rained the ENTIRE way over there, except the last 1 to 2km, and then it was the most spectacular morning you could possibly imagine. Blue skies, the Maribyrnong river was looking stunning in blue as it reflected the sky, the grass was green and it was good to be alive with friends enjoying the sunshine and the fresh morning. That alone does it for me, and I would have been so disappointed had I stayed home.

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Instead we had a lovely time chatting while we rode, chatting over coffee and chatting all the way home again!!! And then, because I wanted to check out some birds (so wishing I had my camera in these perfect conditions!!) and get some shots of the city that I couldn’t take while I was riding, I did the whole thing again!! Yep, 2 loops along the Maribyrong and I can’t think of a better way to spend the day! Right now, I’m happy. I have a low level of anxiety still going on but I think I might take a Valium to give me a bit of a break from that so I can enjoy this feeling of happiness and friendship and accomplishment. Every time I do that ride along the Maribyrnong I remember the first time when I thought it was the hardest thing in the world! Now I just spin along and enjoy it for the scenery, and don’t even notice the kilometres going by. It’s nice having landmarks to show how far you’ve come!! I always appreciate them.

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What else was good about today? I went back again to look at birds and I found some terrific ones!! A Hardhead duck so close I could touch it when they’re normally shy birds. A stunning male Superb Fairy Wren in full blue plumage on a fence post in the sun (oh camera, wherefore art thou camera??!!). A group of Little Black Cormorants fishing together. A pair of Red-rumped Parrots flying off JUST in front of my wheel! A Great Egret in slow, graceful flight. Beautiful, lovely day. Plus a new Wheel Women friend. And watching a recent Wheel Women member improving with every ride; I love that!! Let’s hold on to that happy!!

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She didn’t want to bother anyone

Last week a patient on my ward was discharged home and I went up to the ward to go through the medicines with her. She was going back to the care of her dedicated daughter who was there to hear all about the medications changes. The patient, despite being in her late 80s, was still sharp and with it and until only a year earlier had looked after all her medications herself, which is very impressive.

I admire patient’s who take the initiative and really get to know their medications and take charge of their own health. It just adds another layer of checking to the medication system which can be vital.

So I sat down with the daughter to educate her about the current medication regimen, with the patient listening in and nodding.

And although I was there to teach, I learnt a whole lot!!

First medication. The dose of prazosin has been reduced to once a day rather than twice a day as it was when she came into hospital, I say. Why has it been reduced when she’s had high blood pressure while she’s been in here? she asked. Well, I was taking over from another pharmacist and didn’t know the answer. Did she know what the blood pressure had been, had she seen the chart? I ask, stalling. No but she just knew that it had been. So I get the obs chart which shows an occasional reading of high blood pressure, maybe one in 5 or 6 so I explain that treating those one off higher blood pressure readings to bring them down to normal would put her mother at high risk of low blood pressure the majority of the time, which explains why they dropped the dose. But the kidney specialist put her on that dose, she says. I understand that, I say, but blood pressure changes and so the dose has to be changed to adapt; I’m more than happy for her specialist or GP to change the dose at the next appointment if that’s appropriate. Oh well, it was probably just high while she was in hospital, they’ve treated her horribly, I’m told!

This is always a big disappointment to hear, because I’ve gotten to know a lot of the nurses on this ward and I’ve seen how they care for their patients, even the difficult and hard patients. This patient was easy and lovely so I find this hard to swallow. I’m not saying that awful patients are treated worse, but I’m saying if the nurses can do their best for stressful patients, I’m sure they would have given outstanding care to this sweetie.

Really? I ask, surprised. Oh yes, she nods, and her mother, the patient, nods. We’ve had the most terrible time while she’s been in hospital! Well I’m very sorry to hear that, I respond. Oh it’s not your fault dear, I shouldn’t have mentioned it.

Second medication. This is the anti-fungal cream that we’ve been applying three times a day to your mother’s groin (sorry people, TMI) to treat the rash, I start. Oh yes, do you know that those nurses left her in a wet nappy overnight, for 8 hours?? How terrible is that, she asks me, starting to wind up the tone and intensity? Really? I ask again, because I just find it very hard to believe. The patient nods, yes that’s what happened. Well I’m very sorry about that, I say, that shouldn’t have happened. I wonder out loud to the patient, did you tell the nurse about it? No, she shakes her head. The daughter chimes in, she doesn’t like to bother anyone.

For serious???

You are complaining, and I find out later that there’s an official complaint, or rather several official complaints, about wrongdoing by the nurses but you just sit there and let it all happen when you have a mouth that you are fully capable of using, and a hand to press the buzzer, and surely a desire to not sit in urine for 8 hours just for the sake of not using your voice or your hand!! I find that ludicrous, and really, unacceptable. This isn’t about victim blaming by the way, the incident happened no doubt about it, but it’s about why it shouldn’t have happened and it could have been prevented.

We have patients that can’t speak, or can’t put their thoughts into coherent speech, or can only make sounds, or who take what feels like forever to get the words out. We have patients who are immobile, paralysed, unable to move their limbs, or unable to know what to do to get help. She ain’t one of them!

I don’t think anyone likes to make a fuss, or a scene, or a big deal, or call attention to themselves, complain or whine. Maybe the odd person. But this isn’t about that. This is about bringing attention to an issue that needs to be fixed for the sake of your health. You aren’t putting someone out, or bothering them, the nurses are there to help; that’s their job! If they have something more pressing to do, they’ll let you know and come when they can. But the 8 hours overnight that she stayed in that wet nappy are the quietest hours in the hospital. Often nurses don’t have much to do other than be on call for patients…so call them!

Again, not victim blaming but a patient has to take responsibility for their care. If the nurse doesn’t know the nappy is wet, she won’t come and change it for a dry one. You aren’t a baby, your parent doesn’t come along and stick a hand down your pants into your nappy to check if its wet; it’s not someone else’s job to come by every 20 minutes to ask if you need a change. You’re an adult. You tell someone when you need something, right? No, apparently not! And this was only the start of it…

Medication number three. Trying to move along and get past that one. Codeine has been stopped while your mother has been in hospital, I start. Yes I know, that’s why she’s been in pain the whole time she’s been in hospital, she counters. Oh my, here we are again! Who leaves their mother in pain for 8 weeks instead of saying something? Who doesn’t speak up for themselves when they’re in pain? Oh I didn’t want to make a fuss, says the patient. Give me strength!! You either weren’t and aren’t in pain because if you actually were and are you would be begging for help, or you are competing in some martyr awards that I haven’t heard of! You don’t sit there in pain and not say anything. Do you? Am I on the right train here? Well, codeine is not the best pain killer, I try to continue, and we weren’t aware of any pain. She certainly hasn’t requested any pain relief. And I think, although nurses, doctors and allied health staff may be brilliant, we still can’t read minds! Surely anyone can see that making an official complaint about a patient being denied pain relief when no one knew that the patient was in pain isn’t quite logical!! And don’t tell me that she was never asked if she was in pain. It’s a rehab and geriatric progress ward, every pain is continually asked about pain, about their bowels, and obs are taken regularly. It all seems so unnecessary!

Well, what a way to start the day! I did get through the rest of the meds eventually, but I was ready to get out of there!

Didn’t want to make a fuss, didn’t want to bother anyone, didn’t want to get in the way, didn’t want to be a burden. I get that. Sometimes it’s hard to speak up when you need something. But you can’t have both sides, not speaking up AND making official complaints against care givers. I believe in the complaints process and wouldn’t discourage anyone from making a valid complaint. But this feels like making a scene over something that could have been nipped in the bud at the start. It feel like an attack on the nurses who try their very best, and who couldn’t have prevented any of it without the patient doing their part.

So maybe its something more people need to know about – for your own health’s sake, you need to speak up. Don’t wait til discharge to complain about problems when you never did your side of the job in speaking to your nurse during your hospital stay. It’s a two way street, nurses aren’t psychic so you need to tell them what’s on your mind. Is it too much to ask?

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?

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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!

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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!

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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.

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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!

Unwilling or unable?

Unwilling, or unable?

This is a difficult call to make.

It’s so subjective.

All that we have to go on is my opinion versus your opinion, with whatever evidence each of us has gathered plus whatever balancing knowledge we have at the time the call is made.

It’s something that I’m still battling with, and because I’m battling with it, I assume that there are others out there fighting with themselves over this. I don’t know for sure if there are, but I’m writing this anyway, for me and for anyone else who gets it.

Before I got sick. Such a statement! Also hard to define but I’ll use it anyway.

Before I got sick, I found this line easier to determine.

I’d get home from work, tired out and ready to relax and the thought of having to get together the where withal to get up and going again seemed impossible. Everyone has felt like that at some time.

So it comes down to a battle of the will.

I know I’m tired, will I allow myself to sit down and relax or will I get myself up and going to an exercise class I love and know I will enjoy/the supermarket for groceries to make a better dinner/the week night Bible study meeting which I’ll feel so refreshed after?

Will I, won’t I, will I, won’t I? It was a mental battle. From experience I knew that if I pushed myself I would get through whatever it was that I had planned on doing. It wasn’t physically impossible despite my tiredness. It was a matter of setting my mind to it being a non-negotiable task and doing it! Like work. You don’t wake up in the morning and think will I, won’t I go to work. You just get up, do what you have to to get organised and go!

Well at that stage I did. As the stress of my last job accumulated and compounded I did find myself waking up with a feeling of dread (hello anxiety!) and thinking do I really have to go? What if I just don’t go? What if I say I’m sick? What if I just stay in bed instead?

I guess I should have known that that was something else. That this was more than usual reluctance to get out of bed. I’ve always been a mid-morning person. Getting up has never been easy, but then again it had never been like this. Lying in bed watching the clock tick around to when I should be leaving. Feeling dread and stress and fear with a little smidgen of hope build up until I thought they could physically burst out of my chest.

But in our house growing up, the words “lazy-bones”, “wuss”, “sook” were tossed about like “hello”, “goodbye” and “how are you?”. As a consequence of those terrible words being acceptable to apply to children, I always question my own judgement towards myself, and wonder if indeed I am being a “wuss”, a “sook”, “weak”, “lazy”, lacking in having a backbone or courage or dedication or commitment or appropriate drive?

I think I’m learning these days to give myself more credit. To remember that I am a dedicated, committed professional who knows her responsibility in the workplace and fulfills her duties creditably; who wouldn’t “slack off” or “be lazy” or “not pull her weight” unless there was a solid decent reason. All words that no one else has used against me by the way, except for my old inner voice that I’m slowly chipping away.

I’m learning to know my limits and to communicate these to others. Not with the phrase “sorry to be a wuss but…”! With the phrase, “I have done x and y and z today and I’m pleased that I have accomplished so much. That is all that I can manage today. Thanks for your understanding”.

I think it’s called being assertive. Having been terrified of confrontation all my life I never really got the practice of asserting myself. I knew the theory but that only gets you so far. These days I’m realising that I am a person with valid opinions and thoughts. I’m finding that communicating this directly to others results in a better outcome for everyone. And I’m not so fearful of confrontation anymore. Because now I know that I am an equal part of the conversation/discussion/interview. I’m not the weaker part having to make up to the stronger part anymore. These are truly great days for my personal development!!

But it still comes down to this: what and where are the limits?

When is it enough without being too much? When could I push myself more? When am I taking it too far and risking exhaustion? Do I have more energy than I think I have? Could I maybe do just a little bit more, or should I call it a day?

How can anyone know the answers to these questions?

And then there are the other factors: I just don’t feel like talking to anyone today so I don’t want to go, I feel very anxious about going so I think it’d be better if I stayed home, I just can’t get my head together to go today, I’m too drowsy/sleepy/exhausted/tired.

I’ve been told to push myself, but to be careful not to exhaust myself. I’ve been told to learn to know my own body so it will tell me when enough is enough.

Who teaches these things? How can I learn these things? How can I know the difference between my body being tired and my mind being tired?

My body tricks me all the time. I’m sitting here an hour after a good dinner and my body is telling me it’s hungry. I know its not, but that’s not how it sees the situation! So how can I be sure about my body telling me when it has had enough? It feels like a marathon getting up, showered and dressed some days; my body tells me that it enough but surely that can’t be the limit.

If I can’t tell the limits, how can anyone else? I suppose this is my main point after all. Here’s me: I’ve got these limitations of conditions, medications, recuperation. How, considering all the variables, can any other person tell me what or how much or where or when I should be doing what I’m doing?

Not that many have tried, to give credit where credit is due. Most people have been endlessly helpful, patient with me in my disability, considerate of my limits and thoughtful of me in the middle trying to make me work.

I really do appreciate that!!

I guess it’s always a work in progress. The fact is that I can’t do everything that I would like to do; that’s just how it is right now. I am learning to accept these facts as they are without judging them or myself; that’s huge progress!

With the energy and motivation I do have, I do what I can. I get tired and worn out faster than I’d like. I don’t have the stamina I want. Some days I wake up and it’s just not my day. Then after a nap suddenly I’m firing on all cylinders again. And tomorrow, I might be rearing to go! I just don’t know, and can’t tell. It’s a trying, sometimes frustrating game trying to figure out my agenda for the week, or even the day, not knowing when or how or what I’ll be like with any definite prediction.

Another thing that it is very hard is to differentiate between what the condition causes and what the medication causes. Am I suffering from a side effect, or is this just the part of the condition that we haven’t got under control yet? I think only a trained doctor could answer that with any certainty, and maybe not even then.

So, in the meantime, I hope I’ll do what I can, but not too much, and hopefully figure out just what that is!!