Rain, rain, not so bad…

[Monday 21st August]

It’s always a good day out with birds.

Even when the day is one of the worst this winter.

It’s raining lightly but steadily, the temperature is heading from a freezing 4 degrees to a frosty maximum of 6 degrees for a chilly winter’s day, it’s slippery and slushy underfoot, I missed my bird watching group meet time by a few minutes but saw them crossing the road as I parked, then they disappeared on me while I was getting my stuff together!!

But with some of my new resilience I decide to power on. It sucks that I missed them, but I can’t find any fault with them at all. It was a typical Danika move.

Looking at the forecast the night before I wondered if I was up for the task of wandering around for 5 hours in not only the cold, which you can dress against, but the wet. I’ve gotten wet and cold on one bird watching outing recently, feet and legs mostly, and it wasn’t fun. But I can dress warmer this time and be prepared. About that wet though, do I really want to be walking around in it through thick undergrowth for 3 of the 5 hours, according to the forecast? I couldn’t decide. Originally I definitely wanted to go because this birding outing was one that I haven’t seen come up before, a walk through the Sherbrooke Forest and…ding ding ding…lyrebirds! I’ve glimpsed a couple in the wild, and seen one at Healesville Sanctuary in their awesome recent lyrebird exhibit, but I’d love a better look!

But that wet…and so I dithered all night, didn’t make a decision, looked up what time I’d need to leave by, couldn’t decide when I woke up in the morning, called the leader to confirm it was on, slept a bit more, thought I wouldn’t go, thought I would go, left it too late and took too much time putting on my two pairs of socks, three tops, packing my 3 jackets and so I had no time for breakfast before I had to jump in the car post-haste.

This is a big flaw for me that I’m trying to work on: skipping breakfast. Actually not skipping breakfast as such, because I can’t make it to 10am if I don’t eat in the morning. I’ve always felt nauseous and faint if I don’t eat breakfast. And taking a handful of tablets on an empty stomach doesn’t go well. But I’ve also never been a morning person since I was a baby. So it’s a tussle between getting up in time for a proper breakfast and getting up, full stop! Lately this has taken the form of skipping a sustaining breakfast like my standard 2 pieces of toast with spreads for getting out the door on time, then making a 2 minute stop at the local Coles Express for something less sustaining but at least food and drink. I reserve the right to tell you what kind of food or drink I would usually pick up!

Google maps told me when I left that I was going to be 3 minutes late, as in arrival time 10.03am. This is okay, most times you can make up this difference along the way and arrive on time. Although not properly on time, which is 5 minutes early as my husband will say. In this case probably 10 or 15 minutes early would be ideal for putting on jackets, unfolding umbrellas, getting the camera ready etc. So really I’m  way behind, but I’m telling myself that 10am is okay. But still, no breakfast yet and I can’t walk around in the forest for hours without breakfast, let alone without lunch that I haven’t accounted for, and the Dandenongs aren’t really ideal for ready to go food. But luckily I did find a quick mart type general store at Tremont just before Sherbrooke forest and got some Twisties and drinks; not ideal but it’ll keep me going. Forgot to get lunch but at least this is a start. Except…

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This doesn’t even show how deep the colour blue was on my tongue, fingers and lips!! What the heck?? Apparently although these Twisties look like Twisties, smell like Twisties, taste like Twisties, they are Blue Tongue Twisties! Well that’s new, and not necessarily great for me. Busted about eating Twisties though; hubby will be happy. Luckily after my afternoon nap the blue on my tongue had been digested by my mouth enzymes, but I had to scrub the life out of my lips to clear them up, and I’ve still got blue around my nails 2 days later!! Argh!

But I got myself going, and I got these:

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The charming Eastern Yellow Robin

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They are so skilled at gravity-defying grip onto trees

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A clearer shot finally: the rain really messes with clarity

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Murdering the “snake” by whipping it and mashing it and tearing it into bite sized pieces

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Nearly got its head off, now to…

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“Bang”!

 

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“Is it dead yet?”

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Another flick through the air and whack! against the root

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See how far around it can rotate its head? Somehow with such a large prey compared to its body it manages to get the right amount of acceleration then bang it against something hard

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See how its eye looks weird? Its called a nicitating membrane. It like a second eyelid but its see-through. Birds use it to protect their eye when they still need to see but are at risk of, for instance, having half a worm flick them in the eye

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Finally a bite sized piece! Yum yum, down the hatch

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“Get away from my snake!!”

 

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Uh oh. An invader. Territory wars over a juicy worm!

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Standing on it should keep it safe

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“Are you done yet?”

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Oops, spotted me!

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This is a fully zoomed out view of the little birdy. It was probably 3 metres away by my judgement, which isn’t the best. I love zoom!

A good day that came out of a shaky start; I love these days. Now home for a lovely nap.

 

 

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Canberra Day Eighteen

Wednesday 28th September, 2016….yesterday still to come.

Well this is all out of order but I’m struggling a bit to keep things together. I took my tablets, and went to bed by 10pm last night to give myself the best chance for today. Slept okay I think, hard to remember, thought I was too drowsy and hungover when hubby was going off to work and tried to psych myself up, but he was actually getting up for his 5.30am morning bike ride!! So…back to sleep, and it’s always a struggle waking up from that second morning sleep. When my 9am alarm went off I just couldn’t feel like it was time for the day, and rolled over. Actually can’t remember now what time it was that I got up, somewhere around 10 or 10.30am. Had brekky around 11.30am, hubby reminded me to have lunch around 2 so at 2.30pm I finally got started on that.

Hubby is being my hero, yesterday and today. Not that he isn’t always; he is. But I really need a helper right now, and he’s being that. The photo of the day is his reminder to me of what I could eat for lunch. I have NO imagination for lunch, I’ve always eaten leftovers and when there aren’t any leftovers, I just stare at the pantry, in the fridge and I can’t think! So I default to drive-through which obviously isn’t ideal, but it’s so close to home, a quick drive away. You may have noticed that weight is a bit of an issue for me. Speaking mildly. It’s become a bit of a thing though, buying drive-through, and even when I don’t really want it, that’s what I do because I know what’s there, and it’s always there, and it’s no bother, and it’s just easy and doesn’t require thought or planning. Sad, you probably think. So do I, often. The rest of the time I’m just pleased that that’s lunch sorted for another day. Plus it tastes good sometimes; not all the time.

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I’m sure that hubby thinks its sad too, so I hide it. That’s become a thing, too. Not quite admitting to what I’ve eaten during the day. Burying the evidence at the bottom of the rubbish bin, or in the bin bag that’s on my side of the bed and only taking it out when I’m taking the bins out to the road, or worst comes the worst putting it in someone else’s bins. And that is not the way to have an honest relationship, which I’ve surprisingly taken a long time to figure out! It just puts up a little wall, stone by stone until you realise that there’s a barrier in the way of the two of you really connecting. Somehow it took an honest conversation last night about me hiding my food habits to start taking down some stones and building a bridge. It’s horrible to think we would have something between us! I’ve hated it lately. We have always been best friends and partners with no lies, no hiding, no buried pasts, full openness and honesty; and this is no time to change any of that!!! It’s hard enough keeping an equal relationship with mental illness on one side. It wasn’t intentional; I was doing the self-protection thing. Which does boil down more or less to selfishness, really. Where to avoid an uncomfortable discussion of my obesity, and eating food that can only contribute to more weight gain, and spending money of unhealthy food and so on, I’d hide anything to do with it: receipts, food scraps and packaging, and even pay cash so it doesn’t show on our credit card statement! It’s all become a sad rigmarole, embarrassing, and many other things; I’m sure you can fill in some of gaps.

But, we’ve opened the door, so here’s the new thing: planned lunches. So far today, so good. A nice toasted sandwich with prosciutto, cheese and tomato. Yum! I’ve got pies to cook with frozen veg, some bacon and cheese topped rolls, and a bit more confidence that I can do this! I can eat regular lunches like regular people and go back to the times before when the day manager at KFC knew me and greeted me with a smile every time I drove through, and had a joke with me! She’s a really lovely girl, is it beyond tragic to say I miss her? So much for new city, new habits!!

Well, that was a lot of spewing of internal bile that I hadn’t really planned on sharing today! But there we are.

All I can say about today is my planned ride and bird watching didn’t eventuate. Owing to the fact that it took me 20 minutes and a few sit downs to get dressed for the ride after a phone call to hubby for an inspirational speech, and after procrastinating all day! It didn’t seem like I could throw a leg over a bike! My main achievement was sitting around on the couch deleting a few MB of photos from my computer so I can fill it up again with the 800 or so photos that I took yesterday!!! Eventually I’m going to need my own server! And that was my day! So…not the greatest. Not one to remember. Quite frustrating really watching the brilliant sunshine and blue cloudless skies go by, knowing its the last fine day of the week! If only…but no, as hubby says, it wasn’t my day. Maybe tomorrow I’ll be firing on all cylinders just in time to watch an inch of rain pour down from the skies! Who knows? There doesn’t seem to be a rhyme or reason to me as to how I’m going to be each day. I am missing the routine of getting up early to take hubby to work, I think, but I doubt I’d actually have been up for it today and yesterday. I wasn’t up for it last Thursday; needed a sleep in. And he rode to work on Friday. Maybe this was coming all along and was just inevitable; after all I did surprisingly well for the first 10 days. It’s just annoying, because I can’t say one way or another. Am I just having a bad couple of days like anyone could? Or am I having a down swing with my moods that I should monitor and that might need some intervention? And on and on, my mind is just going round and round and round, on a slight downward trajectory. Things that don’t usually bother me are getting in my craw, so to speak. I’m thinking too much. A good nap has helped a bit, but in total that means that I slept from 10pm last night to 10am this morning, then for another 2 hours from 4.30 to 6.30pm. 14 hours a day isn’t really sustainable. I don’t know whether having a job would have helped or hindered today. Would having to get up have worked, or would it have been another sick day? I wouldn’t have been the best customer service! Enough! No more thinking for now. Off I go at snail’s pace to potter around about dinner. Hubby’s late, poor him. So here we go, off I go. Off I go…

Canberra Day Three

13th September, 2016

I promise that my posts are getting (okay, will get…) shorter as I progress through the 90 days that I anticipate I’ll be spending in Canberra! The writing to photo ratio is all wrong. And I’m aiming to get them in line with the days themselves; I’m confusing myself writing the day after!

It was a bit of a funny day. Same start to the day today, albeit more sluggishly cos I left going to bed, and more significantly taking my tablets, until 11pm. Meaning I was a bit “hung over” when it came time to wake up. Nevertheless, I jumped in the car early with hubby to drive into his work with him by 8am, then took over the wheel and started off on what is becoming my morning “pick a road at random and explore before breakfast” drive. I had woken up by then; I promise I didn’t drive hung over.

“Peak hour” traffic was really not a thing yesterday, at least not between Harrison and Dickson. Aiming to get to hubby’s work by 8am today did take a tad longer, like 4 minutes longer! I love the traffic!!! I might as well be back home in Shepparton, a town of 25,000. No waiting, no kilometre long lines of traffic, delays of half an hour – instead you just go where you want when you want and the traffic just flows. You could get used to it…

Today I headed south across the bridge over Lake Burley Griffin towards Parliament House then took a left and passed by what I assume are some of the embassies with flags in front of grand houses. The highlight was Mugga Drive in a suburb somewhere which has a fabulous view over the city and to the mountains beyond.

Home again for late breakfast, then writing up yesterday’s blog, trying to sort out the glitch in my website, adding the list of birds that I saw at Black Mountain yesterday into the ebird database, phaphing around doing nothing in particular but spending a lot of time! Oh, and unpacking my suitcases! That was fun, not. I mean, it had to be done sometime, but I was putting it off for some obscure reason. Anyway, its done. I forgot to bring clothes hangars but luckily our awesome hosts have spares. Then back to bed by lunchtime cos the drowsiness was just persisting and I couldn’t think straight!

Got myself up after a couple of hours, and even though the day had been a bit of a wash out, and nothing much in particular was happening, I just decided not to let that go any longer. Time to get my bike out and hit the trails, especially since the rest of the week could be rained out. So I did it. I pulled myself together (to me that’s the most impressive part), got dressed, got my gear together and didn’t forget anything, successfully drove there and back with the car on the roof and it stayed on the roof! Hubby has me on a training schedule and this week I’m doing 15 and 20km rides. Well, kicking that off I rode the western loop of Lake Burley Griffin by myself, and clocked up over 19.5km! And it was beautiful! The skies were really dramatic looking like they’d start raining any minute, and the lake was so still and the trees, the grass, everything was so lovely! Stand by for a Lake Burley Griffin portfolio! I stopped and started a bit too much to take photos; I got a bit cold, which is rare for me. It was challenging with “undulations” but so worth it. I’ll definitely do that again!

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So this has to be my photo for today. A bike ride on a not-so-hot day AFTER my nap, and late in the day when I could have decided not to bother. Pushing myself through the undulations, but loving the downhills. My first bike ride in Canberra. A solo ride, my first for Canberra. First ride around Lake Burley Griffin. Lots of things to celebrate! So here I am at 3.30pm deciding to make something of the day despite it all.

It should have been 16km, but I’m having some issues reading signs! Not literally, my vision is fine. But it’s like I decide what I’m doing to do before I even read the sign based on what makes sense to me, then I read but don’t register the sign, and carry on doing my own thing regardless. So far in the 3 days I’ve been in Canberra I’ve done 2 laps of the entire city in the car after missing my turn TWICE while trying to find my own way and refusing to use GPS, I’ve walked for 3.5 hours instead of 2 hours on Black Mountain cos I didn’t pay attention to where I should have parked and thought I was somewhere else, and now a 4km detour into the Australian National University because I skimmed the sign and thought I should go straight ahead instead of veer off! Oh and the shower. It’s a new shower to me and doesn’t have the symbols on it…tell me though, isn’t it always hot to the right and cold to the left on those mixer taps? Someone agree with me. I was getting very annoyed at whoever used up all the hot water, and my hair was half wet so now what was I going to go, etc, until my hubby pointed out that I was turning it the wrong way!! I feel that there must be a lesson here somewhere…

Lastly for the day, a really enjoyable night out with loads of new people at a baby shower for a girl I’ve sort of known over a few years, and reconnected with this year. I forgot that there would be so many new people until I was inside the door, which I’m really pleased about because it has happened twice in our 3 days that there’s been a bit group of new people, and I haven’t had any anxiety about it at all! Hubby and I agree that I’m not high, I’m not low, and we feel like maybe this is what normal will be like; and we’re happy with that. Some great days, some struggling days, and some middling days. Isn’t that life for someone who isn’t mentally or physically unwell? It’s not all excitement and performance, sometimes it’s just step by step. This would be my photo of the day if it weren’t for my bike ride.

Last thing.

I’ve finally had success getting more photos onto my website after a technical glitch. I have to commend Fran from Adobe for being super helpful! The link for yesterday is below, and there’ll be more to come with coming posts. I’m so pleased with my website and the individual portfolios!! I love my photography, it’s so satisfying and fulfilling. Having somewhere other than Facebook to share it, and share it professionally is so exciting! I really hope that you find something you enjoy, whether it’s scenery, birds, my journey in Canberra or life in general.

For more photos of today, see my website: Bike ride and baby shower

See also my Canberra Day Two photos: Black mountain views and Black Mountain Birds

Anything!

Lately I’ve forgotten how much nicer it is to spend my day doing something, rather than nothing!

When I’m down, flat, depressed, I just can’t think of what to do. No ideas come to me, I think and think and it goes nowhere. I wake up in a fog, get up only when I can’t force myself to sleep any longer and lying there gets unbearable, and spend the rest of the day using as little energy as possible!

This is reflected in all the things that I don’t do. I don’t put the used knife at the sink or in the dishwasher; it stays on the bench with the butter and the spreads that should be put away in the cupboard. The bird bath gets filled up with rain or nothing, and the seed feeder empties and then sits empty: the very worst kind of bird feeding there is that; supply then cease. The dirty clothes can’t make it to the washing machine, I drive instead of public transport or walking. The ironing sits, and sits, and sits until my poor over-worked husband gets fed up and does it, while I watch in shame and guilt and secret gladness that it’s done, at least for today, until it piles up again. I do so miss my ironing lady!

I have lists of things to do, but doing them is more painful than transferring them to tomorrow’s to-do list. It’s been a few weeks of this kind of la-la nothing-ness, and it’s been getting tedious.

So I decided to muster my strength and drive myself the 10 minutes up to Doncaster Shopping Centre to go to a couple of stores. Did I remember that it was the school holidays? No, unfortunately! But never mind. Turns out, neither of the two stores that I went to visit exist there anymore!! This is such a typical palm to forehead moment from me that it has become laughable to my husband and I. A phone call to tell him such a story gives him a great big laugh and helps me feel a bit less stupid and wasteful of my limited resources.

Then he said this helpful thing. Oh well, since you’re there, take the chance to look around at any other clothing you need/want?

Usually I’d be straight back to my car and home to safety, but for some reason this time I thought why not? I looked up one of the stores I had come for, and it turned out that their brand was stocked in a couple of places although their name brand store didn’t exist anymore, so I went off looking for those stores and 3 hours later I emerged having had a pretty good day! I’d bought a pair of boots that I really liked and had been thinking about looking for/buying for a while; actually quite a long while! It all happened kind of painlessly. I’d even talked the staff into giving me 50% off instead of 30% because of a miniscule defect! Quite proud of that one. Bought a couple of fat tops, but not in the fat section; in the young cool people’s section. I’d chatted to service staff, talked to a couple of shoppers spontaneously and tried on every shoe I vaguely liked. I’d even photographed some shoes I’ll think about if I get a job or at sale time, like I’d ever remember that I’d taken the photos or where they were from! Another palm to face moment: I was meant to go to one department store to find the brand that I was after, and I spent all afternoon in the other one!! No wonder I couldn’t find what I was after! Oh dear! Again!!

So there it is, just by getting myself out of the house and being willing to/having the energy to push a bit further out of my comfort zone by staying out, several good things happened and I felt like I’d lived a day in the life of a normal person, shopping the sales in the school holidays.

That was the 7th of July, 2016.

Now, on the 27th July I’m in a totally different zone! A happy, energetic, functional, even efficiently effective zone! It’s so good! I truly literally have not felt this good since I got sick. Let’s rephrase and say that I’m feeling the best that I can remember since early 2013!!

It sort of makes me mourn all of the time that has gone by in the last 3 years – wasted hours and days and months, but they can’t be recovered so I just have to put them in the past, and put my attention to the excellent present that is making me feel good.

This is a solid proof, once and for all, that justifies me for defending myself over these years: my disease bipolar is all about the chemicals. When the chemicals are balanced, this is what I can be like, my best self.

When the chemicals aren’t right, I can bust my gut to be better, and exhaust myself in the endeavor, and get nowhere. But finally, all the hard work, all the psychiatrist’s appointments, all the tablets, all the heartache, all the problems and difficulties are just faded away and I’m well! My husband is so relieved. I think we had just about resigned ourselves to the fact of our lives just being sucked into the vortex of this evil disease. But now we know. We finally know that it doesn’t have to be that way. It can be better, to the point of almost normal. And I’ll take almost normal any day!

Of course the story isn’t over. This isn’t the end. This is a good cycle, but it’s still a cycle. That’s how bipolar works, one cycle followed by another; good following bad, and so on. Our aim is to cycle less often and less severely. Proving that I can get to a good cycle is just such great news, a huge relief and gives hope for the future. The medicines do their part, my psychiatrist and GP do theirs, all of your support does its part too and I do mine, and sometimes we hit the jack pot! Let’s celebrate it while it lasts, and know that when we go down again we’ll have more hope for coming back up!

 

 

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!

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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.

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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!

Victory Part Two

[20th June 2015]

Where was I?

Ah yes, bicycle, perfect timing, much enjoyed.

So this week was going to be epic! Until it rained, and rained, and rained. And spoilt my plans! I had my diary set: Tuesday ride from Strathmore, new one for me so that should be fun, Thursday repeat of an earlier ride from Maribyrnong to Williamstown, but hopefully no head wind on the way back this time and so a more enjoyable return! Then there was a ride on Saturday, to follow up our skills session with Bridie O’Donnell, along Beach Road for a road ride. That was a tentative. I haven’t done a road ride in years, and never in a bunch, and not since uni days, and was I really up for it? Definitely a query! In the end I read the updated description and it was for riders above my level so I let that one slide.

Tuesday I was up and at ‘em! This being the most recent morning after the night before when I missed my tablets! So I was firing on all cylinders! Chatty, energetic, ready to kill it on the ride! Etc! But it was cancelled. It wasn’t actually raining but it had been pouring with rain at 3am when I woke up for the day on a short amount of quetiapine-absent restless, fractured sleep! Our leader had been out to check the course and it was wet and slippery. And honestly, I’m having such a good time, and haven’t crashed since my chest infection-induced stupor in week 3 and I’d like to keep it that way. Don’t need any discouragement! So it was cancelled, but there’s always coffee and cake,Whee girls!! So I traipsed across town anyway for a good old catchup! And a divine cookie sandwich!!! I haven’t come across these till now, other than a Maxibon, but these are two yummy flaky bikkies with, in my case, vanilla bean cream in the middle! Very indulgent and just the best! Pin Oak Crescent, Flemington, people, opposite Newmarket Station! Wolf and Hound if I remember correctly! Worth the drive.

biscuit, latte, cafe

A Butterbing cookie sandwich and coffee at Wolf and Hound – not my coffee obviously

So that was all good, no ride for understandable reasons, and nothing could bring me down that day in any case, so a great day to bear with not getting to do what you hoped! When I say nothing could bring me down, I mean being too scatter brained to bring my phone charger, and my phone going flat from running GPS directed maps just as I got to the edge of my comfort zone and needed directions! But bipolar brain is super human and says, oh well, just drive up Flemington Road; you’re looking for an address in Flemington, you might get lucky! Well now we’re in Moonee Ponds so let’s turn around (not easy to accomplish!) and find a 7/11, surely they sell Melways. No you don’t? But I see a copy there, maybe I can just look up an address? Use your phone, are you sure, really I can look it up? Thanks, you’re a lifesaver, actually look it’s just nearby, 2 turns from here! Perfect, and I’m right on time! Thank you manic bipolar brain, you got through that mishap easy as pie. Of course, it is your fault about the charger…but everything else was great!

Cue Thursday. Restarted quetiapine on Tuesday night. There’s still some in my system, but miss a dose and boy, does the next dose feel like the first one! That first dose gives you the full side effect gammit: drowsiness like I’ve been dosed up with morphine, absolutely stupid after half an hour of taking it, cannot form words or walk anymore! Dry eyes makes them fully red which is just perfect for looking like a slurring, incoherent, stumbling lunatic if you happen to need the loo bad enough to get your eyes open and magically force yourself out of bed! Nose, eyes, mouth as dry as the desert, can’t pee or poop as much and boy is it hard to wake up the next day! Even if you wake it takes all morning for the sedation to wear off. Often I’ve just given up and gone back to bed at 9am, 10am, 11am. So Wednesday was not much of anything! In fact I sat in the same spot for the majority of the day once I finally got up at 11am to get breakfast. Think I did a load of laundry. Watched some Agents of Shield. Played Words with Friends. Ate lunch at 4pm. Tried to get my brain around our Wednesday bible study chapter. Started to think about dinner, then waited for my hubby to come home and make it. Bit of a washout day. But I knew that was coming, so yeah.

games, friends

Love this game! My husband isn’t such a fan, reckons I let him win so he’ll keep playing with me…so he stopped playing with me! Always happy to play with new people. This is one of the few activities that helps me feel like my brain isn’t rapidly shrinking!!

Thursday. Plan: repeat ride to Williamstown, without the head wind on the way back, if it please the Weather Bureau! 28 kilometres, gorgeous scenery, good friends, what more could we ask for? The forecast was 13 or something, but I have my neck gator, my head scarf, my new arm warmers, gloves, and a vest and coat to layer over my jersey, so no worries, plus I’m always warm on the inside! Despite the hangover effect, when my alarm went off at 8am I jumped right out of bed! Miraculous! Truly miraculous. The joy of the ride, the pleasure of good company, the scenic delights awaiting; my brain is on full anticipation mode, waiting for the lovely things the day will bring, which will in turn deliver to me those much lauded blessings of endorphins, serotonin, dopamine, etc. It’s the dopamine that has the upper hand if you ask me. Once I finally got to that place of enjoying in my riding, my dopaminergic system started its reward seeking behavior that drives addiction. There, I said it, my brain is starting a powerful connection between riding and good things, and it wants more!

I’d organized to car pool with a friend from the course, the first time Little Miss Independent has let someone else take the wheel and do the driving. A big moment of letting go the control, and making friends! So nice to be trusted to go to someone’s house, meet their family, share an experience together. I’ve always considered myself a bit awkward socially, a bit challenged at making friends and as a little kid especially this was true. I’ve had my own friends, my school friends, and work friends. But I’ve always had my own space, where no one else goes. I’m finding it’s different with riding, because you really share common experiences so we have something together that binds us, and no external person can really share in it because they weren’t there. It’s fascinating to me, to see how this works, and to be a part of it! We share our insecurities, our weaknesses, our doubts in a way probably none of us would fully own out loud in any other situation, and probably not with our partners or other friends. Because in this course it’s okay to be scared, to not know, to be worried. It’s ALWAYS okay to be how you really are and what you really feel and no judgement is even thought of, because this is a place of learning and building up skills and encouragement and doing it together. That’s why we love it!

boardwalk, pond, rushes, bike

One from the archives. Back when I could still fit into my wardrobe, barely, March 2014. Remember I told you my hubby took me for a ride and it wasn’t the best? This is it! A brave smile!

—RIDE CANCELLED— As I’m walking out the door, socks, runners, leggings, jersey, neck warmer, ear warmer, gloves, vest, coat, lights, ready to go to my friend’s house to car pool, my phone beeps. I’ve got my bag with helmet, bike computer, bike mechanic kit etc on my shoulder, I’ve grabbed breakfast, filled up my drink bottle, got the car keys in my hand, bike in the car…cancelled! Cancelled! Ohhhhh. Deflated! But I’m ready to go! But that was the last organized ride for the week that was at my level! But I’m up, and if it was any other day I’d be asleep til 10am while restarting quetiapine, but I’m up! I’m up! Okay, so it’s wet and slippery, but I’m up!

This is no criticism of Wheel Women ride organization! They do an amazing job many times each week, and absolutely made the right call! No disagreement. But I was up! And I wouldn’t be if it weren’t for the anticipation of friends and bike riding. Which is obviously a powerful thing, more than I would have ever expected from myself! So what now? Honestly I was flummoxed, wind taken out of my sails, left without purpose! So I sat down at the kitchen table, stared blankly at the wall and tried to think of what to do! Called my husband cos I was all out of ideas! Couldn’t think what to do next! It really had hit me for six, even though I always knew it was weather dependent. But I was going to go out and tackle that ride anyway, and do better. And now I wasn’t going anywhere! Huh!

blue sky, silver gulls, court house

A stunning Williamstown day on another ride

That was a great lesson to me, to find how much I depended on going riding, and expected to go, and could go the extra mile to get to the rendezvous point on time and all organized, because I wanted to go! Here are some powerful abilities that I can harness and use!

So, what to do? Actually I had a pretty flat day, which is so interesting to me, and something I can work on for next time for whatever disappointment inevitably comes. How can I response differently, better, not let myself get so deflated? I was still in a pretty soggy condition when my hubby got home so he set me to think up rides that I could do the next day. It was a great idea, but I parked it on the shelf. Right now though, I’m inspired so I’m going to try to do that, write a to-do list of bike rides for the future so that I always have a backup plan.

Inspired. Me, right now. Why? Its two days on from Thursday, and today I went and did that ride that was planned and cancelled with my husband, and it was great! The weather was cold but sunny, the scenery is always spectacular on that route and we had fun! Then we went and checked out the cyclocross race nearby and I got my fix of bikes and I’m feeling fine! Better than, in fact. It’s 10.48pm and I’m still tap tapping these ideas that were floating in my head while riding. Turns out riding really gives your head space to process ideas!

cars, blue sky, silver gull

Silver gull parade!! These ‘rats of the sea’ are standing guard waiting for the woman to finish her meal and hopefully leave some chips so they can all swoop in and grab the scraps

And that’s not the end of the victory parade.

The following Tuesday our ride was cancelled before the actual day. But I woke up that morning to a text from one of the lovely girls in our group asking if anyone wanted to do a replacement ride. What a genius, and what a great idea, and perfect for feeling like we haven’t missed out. Yes I did want to do a ride, so we met up really close to home and did an 18km ride together. It was a bit tougher than a lot of our other rides with a few challenging hills but we looked out for each other and I felt so satisfied by the time we got back. We had a nice coffee and cake at a cute new café, and I just loved it! Being independent, and able to tackle a decent ride on our own, and feeling like we’re capable and equipped; satisfaction! And it feels like a victory! I still want to do as many organized rides as I can, but what a feeling to be able to run our own ride if it falls through! Yay!!

So on Thursday, when the ride was ‘only’ 13km, we improvised and went the long way back to the cars together to draw the ride out to 24km. Imagine that! After such a slow, difficult start, I now feel a bit cheated if we don’t do 20km! I mention ‘only’ because the leaders would sometime say this to us, it’s only 6km, its only 13km etc. And I would think to myself, only, ONLY?? What are you talking about, only! I’m not at the only stage, every peddle stroke hurts. It was fascinating on Thursday because we rode the first ride we ever did to the bike store, which I thought would never end as I wheezed and sweating and burned my way along the ‘only’ 6km. And this time we got there in 10 minutes, before my legs had even warmed up, and suddenly we were there and I couldn’t believe how it didn’t hurt, or require much effort and we passed it like it was a kilometre from the car park!! That’s progress, and it’s so exciting!!

Tales of a missed dose

[Written 16th June 2015]

This is a story of what happens when I miss a dose of medication.

What happens depends whether I miss a morning dose or an evening dose. As I write this I’m suffering from missing an evening dose so let’s go with that.

At night I take several tablets: quetiapine, lithium, valproate, rosuvastatin, pantoprazole. Mood stabiliser, mood stabiliser, mood stabiliser, anti-cholesterol, antacid. Yes, it takes that many stabilisers to keep me going!

In the morning I take thyroxine, venlafaxine, Levlen, valproate, lithium. Thyroid hormone replacement, antidepressant, contraceptive, mood stabiliser, mood stabiliser.

All done! Hopefully...I'll still count the tablets out every morning and night to double triple check

In terms of missing a dose, lithium and valproate aren’t the worst to miss as a patient because I’ll be taking some again soon. This is not an official pharmacist, GP or psychiatrist recommendation! Lithium and valproate should ALWAYS be taken twice a day, as close as possible to 12 hours apart for the best effect! And I repeat! This is because for lithium a healthy person’s kidneys clear it out of you in that time frame so to keep a steady level you should take it consistently. And for valproate it’s your liver. That’s why you should respect these two organs very highly! They are very important. But what I’m meaning is its not the worst in terms of the adverse effect of missing a dose. If I miss taking lithium at bedtime, I take it first thing the next morning which gets it back in my system before I physically notice that it even left. My overall level will be a bit lower for a few days which isn’t ideal, but it will work back up to speed soon enough. And I do have a level at least.

Whereas for medications that I take once a day, I’ll miss the effect for 24 hours. Which sucks. Plainly and simply!

boxes, bottles, tablets, capsules

Quetiapine is one of the once a day tablets. It is prescribed to me to prevent mood swings, reduce my anxiety and has the handy effect of giving me a good night’s sleep. It was doing this a bit too well for some months there and I was doped out all of the time, but my awesome psychiatrist recommended a change in the times I take it and we’re back up to speed. Yes!

So, do I get a mood swing if I miss one dose? No. Really not. The chemistry isn’t that reactive. In the same way that it takes weeks of first taking the medication to get the benefit, it takes longer than one day to mess up the whole thing. But I do have a rough day afterward, and a rough night too! It’s a bit like I’m sitting in my car going along nicely and I know where I am and where I’m going and how I am and suddenly another car rear ends me, or bumps into the side of my car at a right angle. Slowly of course, not fast. So my mood just takes a hit, a bump and suddenly I’ve jumped along or across and I find myself somewhere other than where I just was, a bit disorientated about how I got there and sort of catching up with what just happened and where am I now and how I am and are we still okay? That following day I may be in quite a different mood from the one before, either peppy and edgy and anxious and manic, or slow, and silent, and flat and a bit away with the fairies. But that doesn’t qualify as a mood swing, just a sudden small change that affects my day.

After missing a dose here and there I have now gotten the side effects of missing my nightly dose of quetiapine down in a pretty clear timeline. Yes, there are side effects from NOT taking your tablets, as much as taking them. Something to consider.

So here’s the quetiapine absence timeline.

strips, tablets, capsules

10 to 11pm: I can’t get to sleep.

This is a terrible thing. I need my sleep. Always have, and always will I guess, but especially since I’ve been sick. So does everyone, I realise. If I don’t get a good night’s sleep the next day is a struggle, emotionally. So I toss, and I turn, and I turn, and I toss. After an hour of this, if I’m alert enough, I’ll think to myself, self, why can’t I get to sleep? I usually go straight to sleep! Then I’ll look in my pill box, see my tablets, mentally or physically hit myself in the head, take them and all is good in the world. Just like that. If I’m not thinking too clearly, I might think to take a Valium and at least get some sleep. If I’m dull-witted, which is at least half of the time, I’ll eventually wrestle myself to sleep. It sounds funny to say, but I’ve become very good at putting myself to sleep. I nap most days from necessity, and there is a skill involved in going from activity to sleep in a short space of time. I guess shift workers eventually excel at this sort of thing. So I’m quite adept at getting myself in a comfortable position, getting the temperature right (cannot sleep well unless it is right!), darkening the room, doing a conscious relaxation of as many muscles as I can, and stilling my mind into sleep.

Say I managed that. Next time check?

3am. Yep, wide awake, fresh as a daisy, ready to go at 3am. I toss, and turn, and can’t get comfortable, and I’m restless and my poor husband is rocking and rolling every time I turn and I’m messing with his sheets, and he has to go to work tomorrow even if I don’t, so I try to lay still and physically can’t! Why am I awake, I’m usually asleep, what is happening, oh….ahhhh! Tablets! I forgot them! Duhh! I hate that moment! I try to do my utmost to prevent it, but it still happens and it does feel like a failure every time I somehow mess it up! So, should I take them now? The dilemma! It’s 7 out of 12 or 24 hours through the medication time period. So I can’t take all of them. Maybe just some of them. Can’t take quetiapine, I’ve missed the boat on that one otherwise I’ll sleep all day. And I’ll be taking lithium and valproate soon anyway, and can’t double dose. What about the rest? Which are nothing really, in the scheme of me being wide awake at 3am! Cholesterol and stomach medication. Sure I can take them, they should be taken regularly but it’s too late for my sleep. The next dilemma then: try to force myself to sleep again, or just get up, take my laptop to the spare room and do something else? Who knows? Depends what I’ve got on the next day really. I can never decide!

medication list

8am: I’ve finally given up the ghost on sleep so I’m up and peppy and full of life and only just partially anxious and ever so slightly manic and energetic and going to run the world! If I haven’t already taken one to sleep, now is the time for a Valium to wind back the jets on being super woman and achieving all my life goals in one sweet day! And talking my husband’s ear off and planning one hundred chores like a complete going through of the entire kitchen plus 3 loads of washing on a rainy day and lunch with girlfriends and all kinds of magical things. ‘Woah, says my husband, that’s too many things for today. No do that another day, you’ve got enough things for today. How about you sit down for a minute, what about some mindfulness? I think you should do some mindfulness…how about you go and do that now?’ At around about this point I have now blown my nose for literally the THIRTIETH time since waking for the final time. THIRTY. You just can’t blow you nose till it feels empty; there’s always residual. And it’s pretty much like a tap. The medical term is rhinorrhea, like diarrhea but your nose is melting and there is a constant liquid dripping, dripping, dripping!! Quetiapine dries you out like anything so you get dry mouth (and want to drink Coke all the time!), dry nose which leads to sores and blood noses, some degree of constipation which no one wants to know about and some urine retention. The last one isn’t noticeable on any other day, until the missed dose day and then I realise that yes I really have been holding back! TMI I know, but you wanted the whole story right?

But the nose thing really gets me! If I notice nothing else in the middle of the night, I do notice my nose dripping incessantly! It’s an instant giveaway! It’s different to regular waking up in the morning and blowing your nose. It’s more like hay fever without the sneezing but the medication to stop it cannot be taken til nighttime!!! Cue fierce under breath bursts of ‘idiot’!

And then it’s just getting through the day like usual, but bearing well in mind that you’re a bit high today, a bit edgy, a bit fiddly, a bit anxious, a bit overstrung so remembering to breath, relax, calm, easy, gently does it. And I should mention that the other things ease off too, just not in such an obvious diagnostic way. I have the right amount of saliva in my mouth (who knew that was a thing!) and going to the toilet is a breeze, like really easy, like maybe a bit too much and too many times! So happy thoughts!

medication box, tablets

Now the morning lot and venlafaxine. Anyone who is involved in the prescribing, dispensing, and before too long taking venlafaxine knows about the withdrawals. It’s described in the textbooks and it happens like the textbooks. Exactly like. I used to think this was pretty cool. I still do theoretically, but in practice I either love or hate that they’re so reliable and unavoidable. I love them if I notice it before I’ve left the house for a work day because I immediately fix the shortcoming. I hate them if I notice once I’m already on the way to the bus stop and I don’t have time to turn back, or I’m on the bus, on the train, on the tram, in the building. Then it sucks because I know what’s coming and I can’t do a thing about it! Unless I can get to my doctor for an emergency script but that means paying full price, and after all it’s nothing life threatening. Not bad enough to pay three times the normal price! And believe it or not borrowing stock from the shelves is not strongly encouraged by my employers nor is it in any way legal!

What the symptoms/adverse effects of missing venlafaxine are: electric shocks/tingling in your fingers, light headedness/feeling like my head is spinning/wondering if I’ll faint, nausea. Nothing fun. Nothing dangerous. They don’t make for a good day, and I have to wait til the next morning to fix it! More banging of palm to forehead and severe muttering to oneself!

So that the what. The why is a whole other adventure and I don’t have time today, but hang in there and soon we’ll have another chat and look at the other part of the problem. Chat soon!