Claire

Let’s change it up.

This morning I came across this video, Claire Wineland on How to Live When You’re Dying, from an amazing young woman, and she has a very fresh and inspiring view on living with an illness that is incurable.

I almost feel like I don’t fit in any category with her because her illness is very physical and her life expectancy is so short. Yet here she is talking about the pitfalls of dating, the joys of living overseas and travelling, the experience of going to university, and the fun of going out with friends. Almost as though she wasn’t sick.

How’s that for a radical life? Putting your illness in the corner, and going on regardless.

She embraces a life of living so that when she dies, however soon that may be…and compared to most of us its very soon, she will have lived a full life that she can be proud of. Her fears? That she won’t have lived. That her illness will have been her whole life. That she lived to die.

I tell you, I admire this girl so much! It is hard not to think about your illness all the time: how it affects you, how its changed your life, what you don’t have compared to other people. And I don’t have a life expectancy date hanging over my head! Sure, I’ll always have this illness, and there’ll always be issues to deal with, but death is not a guaranteed part of the package. Not any more than any other person in the world.

Check out this girl.

Whether you have a chronic illness or not, her take on life is so refreshing and I feel like it gives me a kick in the pants to try a new philosophy. This is not about being fake and pretending nothing is wrong. That is never helpful, or useful. Something is wrong; lay that on the table to begin with. But life goes on. This is about finding a way to live around your illness, and still living a fulfilling life.

It will always be something of a struggle to push past illness to life. But it can be done, at least some of the time. So let’s give that a go!

Find a way to glow

 

For an extended version of Claire’s interview video, check out Cystic Fibrosis taught me there’s no “normal life”
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Canberra Day Twenty Eight

[Saturday, 8th October 2016; 10pm]

Another lovely day. Any day now that has sunshine and warm temperatures is a good day. The number of rainy or cold days has outnumbered the sunny lovely days so I’m not wasting any opportunity to get out when I get a good one, just with sunscreen on this time!

It was going to be good day anyway cos hubby’s brother arrived last night from Melbourne for the weekend. He’s only one week back in the country from England where he taught in a select entry girls school for the 9 month teaching year, and then most recently from 3 months backpacking around Europe. SO much to catch up on! And he’s a green thumb so that suits my interests!

First of all brother in law and I hit the National Arboretum because it was their open day. We got the usual talk at the discovery centre, checked out the fascinating bonsai exhibition and then went for the drive through the lower section that was just open today; usually closed to visitors so you’d have to walk all the way through, which is a long way! The whole arboretum is 300 hectares!! Lots of walking, and lots of it steep. A very interesting place, I think there’s plenty of scope to go again, putting in mildly! And the views! Well you can see for yourself. Lastly we checked out the cork trees which are an amazement on their own. It was intriguing to hear how the Burley Griffins planned for all of this a long time before it came to be.

img_8702

Cork trees brought to Australia by Burley Griffin in 1912, showing evidence of harvesting which can only be done every 10 years, and may take up to 3 crops to get the best quality!

Home for a yummy lunch of nachos, we are being very spoilt here! Then an afternoon trip with EVERYONE to Floriade! Finally got hubby there after the disappointment of their night festival being cancelled for wind and rain. And our hosts came, and brother in law. Always beautiful, but especially in the sunshine and with good company. It was awesome to see that the tiny Purple Swamphen chicks are growing up, feeding themselves and much bigger than the first time I saw them a couple of weeks ago. I’m glad that the crowds haven’t phased them or their parents; it can be very disruptive having people near their nest or young…but these are all just going about their business. It was incredible to see the change in all of the garden beds as older plants have gone and new plants have come up. It really has to be seen to get the full impact.

Another amazing fact is that I took my meds on time last night, and lo and behold I woke up on time! 7am! Other than hubby who was already out riding, I was the first one downstairs this morning! Some kind of record. By 5.30pm when we got home from Floriade though I was feeling pretty feeble! So nap time, then dinner, now bed!

But my camera is upstairs with my sleeping husband so I’ll post this tomorrow when I can get at the photos.

Change

I have some big news! HUGE news! We’re moving cities!

What?? Yep we’re moving interstate! Not what we thought we’d be doing for the rest of the year!

Why?? My husband has been chosen by his workplace for a project. It involves tailoring and implementing his workplace’s software, and the customer wants him on site to help smooth the whole process.

Where? We’re moving to Canberra!

When?? Well apparently his start date is still Monday 12th September, as it was set a couple of weeks ago when the project came up. Yep, as in next Monday!! It seems that that is still going ahead, despite the fact that his workplace still haven’t organized our accommodation at all!! They are meant to be covering our moving costs etc, but right now it feels like what move?! Are we really moving? In a week? Like next weekend??

How long? The project is meant to be for 3 months, but you know projects…we’ll see. We might still be up there in February!

So! Once the shock subsided, I think we like this idea! I think we like it a lot. So many new things to be experienced.

Of course the list of down sides can be significant: missing friends and family, feeling displaced or lonely, far from my doctors/support network, leaving my stuff behind etc. But let’s leave all that til it happens. Right now, the opportunities are spilling out in front.

It’s going to be exciting!

What better time to be an unemployed pharmacist with no job ties? Talk about silver linings! This has to be a pretty big one. No taking leave, or a leave of absence. No having to quit a job I like. I can just up and go at a moment’s notice; which as it turns out is just as well, since it might come down to that!

I’m going to be a tourist in a new city with unlimited time to check out all the fun places it has. I’m smiling spontaneously and getting a buzz just thinking about the endless possibilities, the sights I might see and the people I might meet. And I’m off the hook about jobs! It is a relief. I’m unlikely to fall across a short term part time job while I’m up there so free time! Like last time when I was off work, when I was still sick enough to not need to think about returning to work, but well enough for short daytime adventures. Like an organ concert, a blogging class, a river cruise, taking the tourist bus or the city circle tourist tram around the city, a couple of hours at the zoo or wildlife park, sketching in the botanic gardens…I had so many hobbies and attempts at hobbies and really tried to get around the city as much as I could for free or cheap.

Remember this, self, remember the excitement when your anxiety about not knowing when you’re leaving for this new city, when you need to be packed up by, where you’re going to be living, what you need to take, how you’ll get around, if you’ll miss home, if you’ll find new friends, if you’ll….argh!! The big ol’ IF!!

I don’t deal as well with change these days, not like I used to. I tend to get anxious and become stressed about the unknowns in life which I would have sailed right through before I got sick. I need more notice, more time to think and consider the options, and I’m generally just more of a pain in the butt about the details! I need details!! Ask my poor long suffering husband! I have to be reminded, and reminded that things will work out just fine and not to get bogged down in the minutiae of a situation. Just breathe, and things will be fine. Of course they usually are just fine, but my brain doesn’t keep a record of all the times things have been just fine. It still goes straight to the what ifs.

And now I’m feeling thoughtful and pondering after that little detour, instead of happy and anticipatory of the future! Annoying. Let’s get this back on track: excitement, happiness, adventure!

I started a list of things to do once I get there, whenever that turns out to be. A reminder of all that I can look forward to, and a prompt for me to get out of the house once I get there and make the most of my time.

I’ve looked up places to go bird watching and practice my photography. I’ve ordered some tourist brochures for all the typical things to do. I’ve thought of a couple of friends I have up there, as well as my brother and sister in law. I’ve started checking out women’s bike riding groups and places to go riding. I’ve planned visits from people who may not yet be aware that they are coming to stay! I’ve chatted to some people who live an easy weekend away from where we’ll be living. Actually there’s so much to look forward to if you put your mind to it. Which I try to do these days.

I’m still writing my packing list and checking it twice. But since nothing has been happening about accommodation and no new information has come up, I’ve sort of put the packing thing off until I know for sure there’s a furnished house with our name on it that I can direct my things to. I had my initial freak out about which knives we must take and which tea towels were essential, but a Valium and a good night’s sleep mostly calmed my heart rate and thinking speed down to normal levels about that, and I’ve only been a normal level of anxious since. Well I think so anyway.

I will miss being close to my doctors. I think that will be the hardest thing. I don’t want to find new doctors; I’ll stay with the ones that I have. That probably means a couple of trips back for my psychiatrist, and I’m not sure what I’ll do about GP appointments. I know I can always call them on the phone so that’s reassuring. I’ll need to get new scripts for everything before I go. I just have to remember that I’m only a phone call away, rather than thinking of it being a 6 hour car ride away! Or however long the flight is. But nothing is impossible really. Just have to think of another way around it.

All of this shows, I think you’ll agree, that I’m going pretty well right now. Being able to see the positives, the blessings, the advantages, is not something you can force while you’re unwell, however much other people try to get you in the frame of mind. It comes with time, and with health. I’m grateful to have been able to take this enormous change so calmly, for me, and so positively. It could have thrown me well off kilter and returned my to bed for days. I’m glad that’s not the case.

So, all things being well, I’m off Canberra to have a fun and adventurous time for a couple of months, and I’ll certainly be filling you in on my life living above the blue line!

Back

Before I post this week’s missive I just want to say a huge thank you to each and every one of you who stopped by my little blog last week and read my disturbed thoughts. I was very much of two minds whether to post anything so personal and dark, but you all were so faithful in reading what I wrote, and those who contacted me were so kind that you restored my faith in writing the whole ugly truth. I love you all, and watching the stats rise was such an enormous encouragement to me! THANK YOU!

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Back

Written late April 2016 after my latest work contract ended; updated 20th June 2016.

“I worked my a*& off to get back, really back; harder than I’ve worked at anything my whole life. ” – Detective Marcus Bell, Elementary

…”because there’s nothing like getting back for getting better” – current WorkSafe Victoria Return To Work campaign

Getting back; it’s what everyone recommends for getting better. I resisted it for a long while in my original sick leave but in the end I found that it was true! Occupation, purpose, time consuming work; it all helps to develop an inner feeling of being better, getting  back to normal.

But, as my deepest darkest suspicions have been humming a tune all along, it’s not enough. I’m not enough. My efforts are not enough. It was a dark moment! Or two…

There have been tears, and more tears; it was so disappointing!

More doubt, more undermining of my confidence that was fickle at best, more breaking through my denial of recovery to let the truth of ongoing illness in. Then there are moments of resolution, mostly led by my husband’s sensible, problem solving , kind voice where I decide actually I will be okay; I’ll be okay, I’ll figure it out.

It’s not what I want; I think that’s obvious. If I could do anything to change it I would. I tried to see if there wasn’t any way around this decision to relieve me of my job by not renewing my contract. I spoke with the powers that be reminding them of my loyalty, commitment, long term intentions and proximity, for goodness sake, if nothing else! But I can’t fight my way out of this. Maybe I have to let it be.

Oh that so does not sit well with me. But a good friend reminds me that maybe that’s the point; maybe this is a long term play for my strength of character not a short term game for my own convenience! Ahhhh…it’s hard to swallow but maybe I need that.

So here’s the situation: the workplace I was working in when I got sick doesn’t have any obligation to me, to rehabilitate me. I was working there on a one year contract when I got sick at the half way point, and wasn’t able to return to work for any more than two mornings a week in the last 6 weeks of the contract. And that was just a desperate scramble to try to be okay enough to stay on there. I was utterly unable physically, and not even slightly ready mentally to apply for a new full time contract, the only way that I could’ve stayed on. So the contract, and with it, the obligation, ended and I went back to bed. Not what I wanted, but I couldn’t do anything about it; I just wasn’t in a state to change things. It was what it was.

So then, after another 9 months at home, I started back at work with a short term contract at the next place that would take me. They also have no obligation to me, other than to offer the same support that they would offer any other employee. They took me on when I was returning to work; they knew that, and made some allowance. But it’s not their fault, not their duty. No special exemption or workplace mentors; no keeping a place for  while me while I convalesce and struggle to get back into the swing of things. You have to compete with every other well person and that’s just how it is. And when it’s over, it’s over!

Done                     3rd May 2016

I’m overwhelmed, I’m in dismay,

The job I had, the work, the pay

It did me good, it helped me stay

Above the blue line, come what may.

 

Now it’s over, my sad reply,

Tears of hurt and loss I cry,

Feeling useless, have to sigh

For fear of dark days once again nigh.

 

It did me good, it kept me busy,

Filled my days and weeks, and nearly

Convinced me that I was now surely

“Better”, “fixed”; was I silly?

 

Silly to be believe in “health” so easily,

Of usefulness, I thought sincerely

That all was good, I did feel truly

That this was it, “I’m better, really”.

 

The routine and the structure, see,

Work and occupation the key,

Helped me build life, ABC,

From sickness to health; 1, 2, 3!.

 

I got me carried away, and planned

To stay and work, but now that’s canned!

“I have no hours for you ma’am”,

It’s over; nothing to be gained.

 

You’re done here! Well it hit me hard,

I did not see it coming, barred

From that which made my life less marred,

It feels unfair, am I so tarred?

 

By that which has my brain entangled,

Bipolar, why have you now mangled

This, above all else was dangled

Hope, that by work I’d disentangle.

 

Please let me stay, I love it here,

The colleagues; the task; the jolly cheer,

And to my home it is so near,

Please let me stay, just anywhere.

 

I’ll type the scripts, talk on the phone,

Check the work that others have done,

I’ll smile, be nice, work with anyone,

Please, please, please don’t say I’m done!

 

 

 

Perspective

[Written in 2014, finally finished today!]

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

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

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

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

Depression, does not have logic.

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

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

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

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

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

Depression is called depression because it’s depressing.

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

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

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

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

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

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

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

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

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

Changing perspective.

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

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

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

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

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

Looking up. Changing perspective. Mindfulness. Gratitude.

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

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

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

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

I wish you well on your perspective changing journey!

Avoiding a missed dose

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

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

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

strips, tablets, capsules

The strips. This is where the real stuff begins

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

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

medication box, dosette

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

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

Epilim

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

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

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

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

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

So here are my many systems.

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

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

boxes, bottles, tablets, capsules

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

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

pink bag, surprise, treat

Bag of medications disguised as something pink and desirable! Cunning

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

medication box

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

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

medication list

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

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

medication box

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

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

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

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

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

reminders, alarms

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

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

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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!

And it stings like…

“A little twist of the knife, yeah. A little salt in the cut, yeah. A little thorn in the side and it stings like hell”

– The Veronicas, ‘Cruel’ lyrics.

Lazy. Not listening. Not trying to help yourself. Making yourself sick. Not doing what you can to get better. Doing things to make yourself sicker. If you really wanted to get better you would… .

Exaggerating. Everyone’s getting sick of this. Everyone else has problems too. You think just because you have a problem that it means you’re worse off than anybody else. I have problems too.

When I read this out loud or run it through my mind, it sounds like the negative self-talk that I had way back a year or more ago when I was really depressed. But I thought I worked though that? Didn’t I spend all that time in therapy with my psychologist specifically addressing this type of self-talk, bit by bit by tiny itty bitty little bit? I think differently now, for the most part. I try, in any case. And when a bit of negativity comes up, I think I have the skills now to recognize it, to dissemble it, remove its effect on my mood and thoughts and carry on regardless. For the most part; I’m not impervious!

What is it then, this string of insulting, hurtful words? It does sound quite a bit like one of the soundtracks a person with schizophrenia might be subjected to listening to. But I don’t have schizophrenia. I’m very sure of this. The number of mental health reviews and tests and interviews I’ve been through have shown up a string of illnesses, but psychosis has never come into the mix. I’ve never had voices as such, delusions or hallucinations as such, or this kind of audible insulting persona living in my brain.

What then? It must be an actual voice coming from an actual human. You wouldn’t think this would be a way a person would speak to me, to anyone, even if they did think it in their mind. Not like this. The words are awful things thrown with an angry, reactive tone. Who would know enough about me to think they were able to say such things with such venom?

Not my dear one, my husband. He watches the struggle daily and knows what effort I put in. It wears thin but he never throws blame. What an angel.

Not my friends, not one of my precious friends could say these things. They support, and support, and support. They are lovely, kind, genuine, helping, caring.

And there, aha. It sheds the light on who it is, who it can only be. And a shard pierces the heart, again. Again. I hoped.
I thought in my hoping that things would change for the better; that knowledge and understanding would temper such words. I looked for empathy, love, kindness. Not too much to hope for?
Disappointed again.
Sorry again to find that expected allies are enemies still, slashing and stabbing and wounding and delaying the healing and brutalizing the hope.

Well fooled me. Fooled in hope, in desire, in wanting, in needing something different. Fooled again. More fool me. Well, fool no more. Hope no more.

I see the scene, and I see that change cannot be brought by me. Nor by my dear one. Nor by my friends. I tried, it isn’t for want of trying. But I failed, and can’t stand to fail over again.

I don’t know where the change may be able to come from, or by who, or if it even can come.

But I turn my eyes away, I do not look for it anymore.
It is finished, for me. I have my love, my friends, my allies some. They are enough for me. I am enough for me. We will be enough.