Slowing down

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

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

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

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

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

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

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

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

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

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

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

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

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

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Upbeat

Well let’s try something a little more upbeat, shall we?

– Amy Adams, Miss Pettigrew Lives For A Day

Time for some good news, don’t you think? The last 2 week’s blogs have been a tad depressing. But then again, that’s what we’re dealing with; depression. And it is depressing!

But, time for some good news. Just as long as you don’t think that’s how it actually works in real life. Good news following bad in a nice little ratio. It doesn’t happen neatly like that. The depressing topics can go on for quite a while without relief!

Thanks to my amazing psychiatrist I actually am feeling quite a bit better this week. My meds have been upped again and within 3 days of increasing the dose I was coming up from the depths and feeling better, and my energy and mood have kept on coming up. Thank goodness!

My belief has been renewed that it is possible to get properly medicated and live a reasonably normal life. I stopped believing over the last little while, thinking I was living a doomed life. I have been reminded how closely the analogy of diabetes fits my disease. When a diabetic’s sugar levels go off, they feel awful but they go to the doctor and the doctor changes the level of medication. I just forgot that I need to go to the doctor and ask for more meds when I start sinking; I tend to think it’s on me to fix myself, as if I could! I’ve been reminded very clearly this time that when I’m struggling, it’s not just that I’m struggling, but that there’s something chemical going on in my brain that needs a doctor to sort out. I need to recognize it, and ask for help. That sounds obvious, but it’s not obvious to me, not when I’m sick. I just blame myself, feel like I’m not doing enough to be better, and I hibernate.  So I’m reminded it’s the level of chemicals in my brain that are dictating how I’m going, and when I need more, I need more and I need to ask for it. I’ll try to remember for next time…

I have faith again now, faith that things can be better, and will get better, and will be better. Something I lost lately.

But if I wasn’t feeling better, I was planning to write something “positive” anyway.

You know, so you wouldn’t worry. So you wouldn’t think it was all bleak and dark. To balance out the last two posts. To alleviate your concerns and to reassure you that everything is okay. Because that’s what we do, or at least that’s what I do. People who are emotionally and mentally unwell.

I want you to know when things aren’t going well because I believe in my friends and family knowing the truth. I want you to know, I really do. I think it’s good for a lot of people to know how these things work; so you understand, and maybe so it’ll help you help someone else.

Until all the condolences roll in and everyone is so worried. Until dear friends get scared, and fret about how I am going. Then I think about you, and how it’s affecting you and it makes me anxious, thinking of more questions and concerns, and I back peddle. So sometimes I tell you its all good so you can relax. And so I can relax, and I’m no longer fielding afraid questions from loved ones. My husband says this is insulting to people. To coddle them, and not let them in on the whole truth. To decide what they can handle and what they can’t. To give them the amount of truth that I believe won’t overload them, and by extension, me.

I’m sorry to do this! I don’t mean to take control of the information stream, or insult you, or lie. But it quickly becomes too much for me. Despite this, I don’t want you to change a thing. Please don’t stop feeling concern, or asking me about what’s going on. I’m just letting you in on my crazy brain!

But I think this is a very common thing in people with mental illness. I read a piece recently about “smiling depression” and so many times it IS easier to smile. I try not to be fake, but it’s still my fall back, the easier option.

It’s not about restricting your access to information about my illness and how I’m going. Like I said, I want you to know; at least theoretically. I have a limited capacity for emotion, including other people’s, when I’m not well. This is why sometimes I still say “fine”, “okay”, “not bad”, “good thanks” to skirt the question of how I’m going. Because when I’m really not well, just a simple “how are you?” is enough to bring me to tears, and have I mentioned how much I hate crying? Especially in front of anyone else! But I’m trying to be honest and open, so bear with me.

Sometimes I want you to think I’m okay, or not so bad so I can slink back to bed without attention.

It’s not that I don’t appreciate your concern.

I want to promote understanding of mental illness, but sometimes the kind concern and loving questions, while so touching, are a lot to deal with when I’m operating at low emotional capacity! When I’m better it’s a lot easier to process and when I’m well it’s easy, just the same as you or anyone, but of course the same thoughts and  questions don’t apply then.

But I am well this week. I’ve got energy, motivation, stamina. I feel good! Everything is easier. I’m doing more, and it’s draining me less, and not exhausting me just to move. My husband is happy, the house is in a little bit shape, things are just good. So none of this is fake. These are the real positives that I can see clearly with my eyes right now. Yay!

  • I’ve gotten out of bed every day this week, and sometimes before noon! Really!
  • I’ve talked to a potential employer via email and on the phone, and done an in-person job interview
  • I’ve done groceries, dropped off some clothes to be mended, washed and dried sheets, posted some clothes for refund, tidied up my side of the bedroom, even cooked dinner one night! Don’t get your hopes too high though, that’s about all I’ve done!
  • I’ve been to my GP for an appointment, to a doctor for an ultrasound, to a careers counsellor for help getting a job, and to KFC when I couldn’t figure out what to eat for lunch! That’s a lot of outings and socialising for me! On the days I went out, I went to bed when I got home, usually for an hour and a half…but I didn’t nap on the days that I didn’t go out, so that’s something
  • All this out and about meant I got some sunshine on 2 separate days. Actually on the skin sunshine!

So that’s me for this week. It’s not a lot from the viewpoint of my old life, but these days I take whatever I can take, and this is relatively awesome!

How about you? How are you? I’d love to hear from you.

 

She didn’t want to bother anyone

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

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

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

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

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

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

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

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

For serious???

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

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

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

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

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

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

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

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

I did a bad thing…

I did a bad thing.

I got sick, and then I started getting better, then I stopped. I didn’t get better. I just stopped.

I’m in illness limbo. I’m much better than I was when I was severely unwell, but much worse than I was “before”, before I ever got sick. Well okay, maybe not much worse, but worse. I’m not going forwards, I’m not going back. I’m not bad enough to complain to my doctors, but I’m not where I thought I’d be, back to “normal”.

It’s been a long time now since I got sick, and I’m definitely well over the acute phase of crippling anxiety, black depression and the odd weirdly happy and effective days of mania.

I was just commenting yesterday that I never have dysfunctional anxiety anymore; just regular, everyday person anxieties that are reasonable and well founded and manageable. But I was wrong. At that very moment it was sneaking up on me again and bam! it got me!! But only a bit dysfunctional. I don’t have the darkness and hopelessness of depression, just the sluggishness and lack of motivation and tiredness…but even that waxes and wanes giving me better days and worse days due to no particular reason. Mania continues to be a little brightness on the horizon that breaks through any residual depressive effects and gives me a little happy and useful and wish-I-was-like-this-all-the-time day or so, here or there!

I’m medicated like you wouldn’t believe, and a recent experiment my psychiatrist and I tried of reducing my meds has shown me very clearly that without these meds, I’d be right back in the thick of my acutely unwell stage!! It’s not like they aren’t working; they are, they really are! My moods have been a very difficult case to crack and it has taken 4 medications for mood and months to years of appointments to get on top of the main symptoms. And they work. I can, somewhat distantly now cos it’s been a while for some, remember how I was before and after starting each one, which may just be my saving grace down the track when I, like every bipolar patient, get to the stage where I think I might just be better off not taking my meds. One request of you, friend: don’t be the person who suggests I should go off my meds. The consequences of taking on that responsibility may well be more than you can bear. You take my life in your hands if you suggest any such thing. For all I complain about where I am, I always know very clearly that I would be so much worse off without my meds. No question. Ever. Life isn’t perfect but taking away the crutch holding me up isn’t going to help. So save it, keep it, sit on it, hold it in, swallow it; you are not helping anyone, almost ever, by making any such suggestion. You are warned.

But here we are. I’m not sick, but I’m not as well as I thought I’d be. As I hoped I’d be, planned I’d be, “knew” I’d be. Isn’t this the dilemma of every patient with a chronic illness? I go to the doctor with my illness, the doctor says okay I’ll treat your illness, I hear “I’ll get you back to normal”, and go on my way happily ever after. I think I’m presenting the doctor with a chest infection that he can fix, and then return me to my previous health. But this is not a curable disease. The treatment works, the doctor says I’ve treated your illness, I look forward to getting back to being me, my old self, and then, as the Goons would say…suddenly, nothing happened!! Yes the treatment worked. Yes the doctor has done his job. But this illness doesn’t go away. Because that’s not how it works. The illness stays. The treatment stays. The illness has just been put back to bed for a while. But there are some residual effects that haven’t been buried and they remain and irritate me. Because that’s how it works. I don’t know what it would take to get every last little bit of it under the surface…I don’t think I want to know because it either isn’t possible, or the trade off would be too severe.

I’m starting to think “normal” isn’t a reality that I’ll ever reach again. I’m starting to think that my life has been permanently changed. I’m starting to think I’m stuck here.

I don’t know.

All I know is I’m here, and everyone seems to want me to get fitter, healthier, stronger, slimmer or shall we shall less large (keeping it to reachable goals), more energetic, more involved in my own life, more something or other. And don’t mistake me, I want that too. I want it all. It’s just that I can’t see how. I can’t see how to get there. Some people say, well you made it this far through, I’m sure you can do it. But my little/big secret is, all I did so far was hang on. Through all of it, I didn’t really do anything that active; I just hung on. Now the goals require something more active and I don’t know if I can do it. I’m not sure that I can do what’s required. I guess that’s why I’ve stalled here. The next step possibly requires more than I can give.

Aaaaahhhh. Sigh. I did something bad. I stopped getting better. Can I start again?

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!

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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!

Epilim

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

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

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

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

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

So here are my many systems.

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

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

boxes, bottles, tablets, capsules

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

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

pink bag, surprise, treat

Bag of medications disguised as something pink and desirable! Cunning

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

medication box

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

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

medication list

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

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

medication box

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

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

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

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

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

reminders, alarms

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

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

20150520_093805

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

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

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

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

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

Hope you enjoy the pretty pictures!

Hindsight

Everything seems obvious in hindsight; we often remark on this theme:

If only I’d known that beforehand…

Well it all seems clear in hindsight…

With hindsight I would have…

But that isn’t how the world works.

We do not have a crystal ball with magical views of life and what is to come. We don’t have a written score or script to tell us what the path will be and when each event will occur.

We have the blessing of life, and breath, and relative health and wealth, and a brain and body and have at it! Go to and create out of what you have, what you will.

Some people argue, probably very rightly, that if we could see the path that our life would be, we wouldn’t be anymore equipped to face it, and the unknown bad moments ahead would ruin our happiness right from the start rather than at the time.

Imagine how it would be if you knew before you were born or in your early life which of all of your loved ones would leave you in death or in circumstances. Would you draw away from them to protect yourself? Would you cling to them to try to make the most of every moment? Either way, and I’m betting there are many other ways that people would respond too, it would make life unnatural I think.

It’s a moot point of course since it’s an impossibility that we could ever have that knowledge, or any other similar knowledge of the types of experiences that face us in our life.

I believe that God is in Heaven and has set us on earth for his pleasure. I believe that Jesus came from Heaven to earth to live as we do with all our limitations, temptations and experiences. I believe that He himself was tempted in every possible way that a human could be tempted and still never sinned so that He could buy salvation and eternal life for us by his sacrifice. I believe that God has planned every teeny tiny step of my life, of your life, of every life. And I believe that if we ask, and it’s right for us to know, that God can give us a glimpse of some past, some future, some present obscured moment to help us better understand and cope with our life as we live it.

Not our whole life’s map or pathway or span. Just a glimpse to help us on to the next step. In eternity I think we will see why everything happened as it happened for God’s good reasons.

You may believe the same. You may believe differently. You may not have a belief about a greater being. That’s up to you.

What I’ve been thinking about today is hindsight.

Imagine if, say, eighteen months ago I had been able to look into my crystal ball and see my future.

At that time, I had been suffering fairly severe abdominal distress for four months or so with frequent, sudden, violent and painful bowel motions each day, terrible wind and muscle spasms on and off. I’d had tests done for bowel cancer, Crohn’s disease, inflammatory bowel disease, rheumatoid arthritis and a bunch of other bowel and inflammatory conditions.

I’d had to give bowel movement samples and urine samples and have my blood taken. I was stressed to the max over all of these potential diseases, besides being embarrassed and inconvenienced by uncontrollable bowel movements, appalled at having to take poo samples, and absolutely shamed at having to hand these over to my doctor! My work was affected because I’d have to dash off to the loo in the middle of something and come back fifteen to thirty minutes later exhausted and horrified once more. My home life was affected by me having this uncontrollable loud angry painful stenchy monster inside of me that wouldn’t be calmed down even at crucial moments.

I was feeling pretty crappy about the whole situation!

I was given a diagnosis of irritable bowel syndrome, a fructose elimination diet and a reassurance that I could return to the tummy specialist at any time in the next twelve months. So hindsight.

What if, at that point in time, someone had said to me, Danika, have you heard that irritable bowel syndrome is usually diagnosed when people have some kind of stress in their life that’s gone on for a while? Tell me about the things going on in your life that stress you out. What things are putting pressure on you at the moment? Is there a chance that you have been undergoing stress for some weeks or months? Tell me what we can do to manage or alleviate your stress.

If they had then reassured me that none of the diseases I’d been tested for were going to happen, had assured me of the success of the fructose elimination diet and how my symptoms would all go away, and referred me to have a chat with someone sympathetic and capable of helping me with my stress, maybe my path would have changed.

Then again maybe not; who knows?

If at that point in time they had said to me, Danika, here is your pathway for the next eighteen months: your bowels will improve on the new diet, but your immune system is compromised from stress so you’ll be more susceptible to minor but irritating afflictions like colds and yeast infections. You will be diagnosed with generalised anxiety disorder and truly stress about EVERYTHING; the medications don’t work that well and the one that works best you’ll have to stop because of bleeding. While you’re off medication you’ll get sick again and you’ll be diagnosed with depression; the new medications won’t work that well and you will eventually have a nervous breakdown before finally they find out you have bipolar disorder. This diagnosis will change your life because you’ll start new treatments and they’ll work marvelously and you will get well for the first time in eighteen months!

What would my reaction have been? I’m guessing it would have been, and certainly was along the way, oh no that’s terrible, I can’t possibly have or go through that! Or would I have been far sighted enough to look through the pain to the end and decide to go with the pathway shown? Probably not, we humans with myself as the main example are pretty jolly keen to avoid pain of ANY kind!

Would I say, wait, I can’t let that happen, and take leave from work straight away to recuperate and sort out my life, removing all the major stressors (which I did six months later but maybe too late)? Would that knowledge followed by these actions have stopped me from continuing along the pathway? Would I have only got to halfway down and no further? Would anything have kept me from reaching the endpoint I got to?

What if they’d only told me part of it: you will change your whole lifestyle and method of cooking to eliminate fructose and will completely overcome your bowel issues; however not having your bowels to stress over will shift your conscious awareness of stress to the actual source: working with high workloads, no extra workforce in sight and in a group of similarly stressed colleagues that are piling additional stress onto each other. You will stress over your work ad nauseum and to the nth degree and it will severely affect your sleep, your motivation, your energy levels and your commitment to your job and profession and your general joy for life.

What would I have done then? Would I have looked more closely at my work situation and realised months earlier than in real life that I was putting way too much energy and thought and adrenaline into a dead-end? Would I have realised way sooner that the situation was never going to change and was only going to become more and more toxic as I advanced to a more and more senior role and shouldered more and more of the responsibility? Would I have cut my emotional and sentimental ties months before I did, and saved myself anguish and conflict? Would I have found it much easier then to walk away before the chaos descended? What if…?

What if they’d told me this much? You will seek help for this stress through the employee assistance program with a delightful lady who will be your mother and guide for the next six months. Then neutropenia and recurrent infections will send you to the doctor who will ask how do you do? causing you to melt down into a panic attack and this will start the diagnostic pathway to generalised anxiety disorder. You will learn many methods of controlling displays of anxiety but you still aren’t conscious of the severe degree to which your work is affecting you. This will come and you will start accepting that you need to leave this septic workplace and find work elsewhere. You will do your best to handle all of these things together with a friend your own age dying suddenly bringing death right into the room, your mother’s diagnosis of breast cancer with subsequent surgery, chemotherapy (in a naturopathic, homeopathic, everything alternopathic system!), your major supports in the workplace also having to leave for their health’s sake and whatever else this bully of a life has to throw into the mix!

Surely by now you would do the bleeding obvious: quit your job, look for a new one, cut ties and uproot yourself and do an anti seachange! Which you did, at this time. So would knowing earlier really change things? Would anything have made you move and change sooner? I just don’t know.

I don’t know. I don’t think anybody knows. There are so many combinations and permutations of thoughts and actions and decisions and autopilot and words and instincts. Can the past ever by viewed from the present, and a different path traced? Can we ever say for certain what would have changed the outcome? I don’t believe that we can.

What I can do is suggest; I can infer; I can consider it very likely. But fortunately or unfortunately there is no going back and changing the path we took. It’s done; it’s fixed.

Regrets? It takes some consideration but actually, I don’t think so.

I wouldn’t have wished myself a nervous breakdown. I didn’t enjoy all of the stress that was actually placed or that I mentally thought was placed on my metaphorical shoulders. I never ever want to be within 10 miles of suicidal ever again if possible be ANY means!

But, the slippery slope that I skidded down and down and down led me to make decisions I would never have made otherwise, to seek out opportunities and advancements and personal development that I wouldn’t have thought necessary in different circumstances, and to change my thinking, my behaviour and my take on life to (hopefully) come out at the end with a splash into a new and improved life!

It might seem strange but there is so much that I wouldn’t have today if it weren’t for this pathway that I may or may not have gone down if I’d been a different person or acted differently in the past.

All for the best? In hindsight, yes I think it was 🙂

Voices

 

I’m friends with the monster that’s under my bed

Get along with the voices inside of my head

You’re trying to save me, stop holding your breath

And you think I’m crazy, yeah, you think I’m crazy

Well, that’s nothing

-Monsters by Eminem feat. Rihanna

 

I love this song called Monsters by Eminem with Rihanna and always sing along when it comes on the radio while I’m driving. The chorus mainly, I’m not skilled enough to rap along with Eminem! “I’m friends with the monster that’s under my bed”. To be friends with whatever our own particular monster is; what a great goal to have!

To accept that I have a monster in my life, to accept that it isn’t going away and can’t be gotten rid of, to accept that it will always be right there lurking under the bed is one of the biggest parts of reaching remission with mental health disorders. Acceptance is key.

That’s what I’ve been told by my therapists and I really do think that this is true. I’ve seen enough patients with mental illness, mostly schizophrenia and sometimes bipolar disorder, and every now and then depression, anxiety or panic disorders who do not believe that they are unwell to know that believing the diagnosis and accepting the need for treatment is the biggest advantage you can have on your side. From then on out, having a good relationship with your doctor, having faith in the treatments given and doing what you can for yourself are added bonuses towards successfully managing your condition.

Fighting against the diagnosis, disbelieving the doctors, resisting the label, not wanting to accept the idea of illness takes so much emotional energy, so much mental energy and makes you prey to so much more time exposed to the condition that is ravaging you. It can also make your condition harder to treat once you finally succumb to the idea of needing help as it has had so much more time to get a strong grasp in your mind and the symptoms may be a lot more advanced. You wouldn’t do this to your body if you had diabetes, leave your body exposed to high levels of blood sugar damaging your blood vessels and nerve endings while your organs starve for sugar. So why do it do your mind?

Because at the end of the day, mental illnesses like diabetes or thyroid disorders or heart disease are conditions that are not curable, in the sense that they never go away but can be well managed. Bipolar disorder doesn’t just pop up then vanish away again. But it can be managed away to the extent that it no longer controls your life and so that people around you have no idea about your condition, and maybe you even forget that you have this monster.

Here’s to becoming friends with whatever it is that scares the pants off us! To becoming friends with our monsters.

 

[ I ] Get along with the voices inside of my head”

 

I don’t have voices inside of my head.

That sounds like a statement of denial, but it isn’t. I’m just telling you a fact about me. Trust me; I’ve been thoroughly checked for voices! By my GP, my psychologist, two psychiatrists and a number of nurses. And myself, just to quintuple-check.

I mean that I don’t have voices in the sense that most people expect voices. I don’t have auditory hallucinations such as people can have if they suffer from schizophrenia, psychosis, some forms of bipolar or delirium. I don’t hear people who aren’t physically present telling me things, commanding me to perform certain actions or speaking to me through objects like the radio or TV.

But I’ve come to learn about other types of voices that can be just as damaging. The inner voice. Everyone has one, to whatever extent they allow it to be heard in their own mind. The little voice that chats away in the background carrying along beliefs, ideas, thoughts, judgements, criticism and hopes and dreams. And sometimes not only one voice. There’s my inner voice that carries the weight of history, experience, self esteem and knows me well. There’s the inner voice which is other people’s beliefs projecting as their voice and most importantly, my new inner voice!

One of the things I’ve been trying hard to work on during my recovery is to change my inner voice, or develop a new inner voice. Depression and anxiety can both have a large self critical and other people critical component. When my current voice criticises or judges or makes snide remarks, I try to correct it. Not with judgement, or criticism, or rudeness. If I took that approach, my new voice would be as difficult as my current voice!

So when my old inner voice sparks up a thought train that I don’t want to follow, my attempt is to gently override it with a better thought, or kindly redirect it. When a critical thought comes to mind, I try to tell it, no that’s not how I want to think about people anymore, and then I try to impose a better thought onto that thought to overcome it.

Maybe the idea pops into my head that that girl over there is fat. But that’s not how I want to think about other people, and I have to bear in mind that I myself can be classed as fat, so instead of thinking those thoughts about her and me, I’ll think about her beautiful hair and her lovely smile. Which will make me smile, and enjoy these nicer thoughts 🙂

It is not easy! It takes a lot of hard work to get along with the voices inside of my head! Being friends with the monsters is much easier for me! I don’t know if everyone has the same difficulty, but it’s taken me a lot of work to get to where I am and there’s still a way to go. I know consciously exactly how I want my mind to be, but it doesn’t change just for me wanting it to! It takes practice and repetition and solid thinking!

But at least I’m on the way to getting along with my voices, a little progress is better than no progress!