Hard questions #1

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

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

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

Some questions are hard to answer.

Some questions are unanswerable.

Some you just wish were!

Like,

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

 

Ummm…well…

I’m not really sure…ahhh…

Maybe…I don’t know…

I think it was…

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

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

You changed the towels a week ago?

I haven’t used mine yet? Hmm…

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

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

Plans to shower tomorrowknows it probably won’t happen

more shamethat’s life!

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

Like, when did you last have a shower.

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

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

Why is showering so difficult and so irregular now?

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

It’s a few things.

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

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

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

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

“Do it for me”, “I can’t”.

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

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

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

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

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

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

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

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

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

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

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

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

But now, a new directive:

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

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

“Not for hygiene…”

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

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

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

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

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

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

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Canberra Day 93

[Tuesday 13th December]

Alright lovely readers, we’re on fire! So let’s keep it moving with the next Canberra day; promise we don’t have far til the end.

Today is a bit about goodbyes. The days are increasingly more about leaving and less about Canberra but I’m still fitting a few things in. I had lunch today with a new friend who has been super lovely to me and hubby while we’ve been in Canberra, and we had a great time catching up, albeit for the last time. I also realised that I’ve gotten behind in keeping family and friends up to date so I wrote some postcards, and then bought a few souvenirs to remind me of the experiences we’ve had. As I was popping into the souvenir store at National Portrait Gallery I saw that they had a new exhibit: this one was digital so photos of it don’t do it justice, but some incredible talent in short videos.

I started thinking today about things I needed to organise before I get home: firstly make an appointment with my psychiatrist for the first time in nearly 4 months! He gets booked a month or two in advance so no time like the present to make sure I can see him soon after I get home. I can’t believe that its been 3 months without meeting with him. I guess it shows how far I’ve come that I went off to Canberra so cheerfully knowing that I wouldn’t be able to see him for at least 3 months. Any early in the piece and I wouldn’t have been prepared to go more than a month without seeing him. It helped a lot that I have his mobile number and have the okay to call at any time, definitely. And hey, I’ve survived 3 months without any debrief or counselling. It’s not something I’d recommend but I’m pleased that I got through it, and got through it pretty well. But nevertheless I’ll be glad to touch base again.

Today I had a couple of things I wanted to do. First off was yet another trip to the National Library which has been a surprising treasure trove of interesting exhibits and fascinating behind-the-scenes insights. Today I’m checking out an exhibit of Robert Ingpen called Wonderlands. Does it sound random to you? Maybe it wouldn’t be if you saw his paintings, or illustrations, in such books as Wind in the Willows, Alice in Wonderland, Pinocchio, Tom Sawyer and more. He’s a genius artist and the display was wonderful, if brief. And of course I had to poke my nose into The Sell exhibit once again; can’t get enough of cheesy advertising!

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Alice in Wonderland

I also wanted to walk next door and sit in on the High Court, but unfortunately they had concluded earlier in the day; much earlier at 11am. But hey, why not have a look around at the courts while I’m here, especially as you can’t take photos while the court is sitting, but you can photograph the rooms empty. And I have to say, the staff at the High Court couldn’t be more lovely and helpful! I highly recommend making time to talk to them if you visit. They have such a mental dossier of interesting facts and figures about the courts, the judges, past cases, upcoming cases, history of the courts, the decor…really anything that you’d ever want to know!! Just ask; you won’t be sorry.

Then on the way home I drove around the rear of Parliament House, an area you don’t see in pictures or in person much at all. Turns out, Australian Federal Police don’t really like you seeing it, at least not if you pause the car and take photos!! First time being pulled over by federal police! Oops! That’s an experience I don’t have the nerves to go through again. They were perfectly lovely and just asked me to keep driving, but still, flashing lights and the word “federal” have a way of pushing your heart rate up!

Last and most important job of the day: take dinner to Chester at work. This poor guy is working his butt off 60 hours a week at the moment, and barely seeing daylight!! They just will not extend the deadline despite the extremely poor chance of it reasonably being met. So we’re going down the path of it being unreasonably met! I say we: I’m not really doing anything, but I feel terribly about it, even while swanning around enjoying myself.

Canberra Day Thirteen

How can you not have a wonderful day when it starts with these gorgeous flowers and this much sunshine?? I am so loving the flower festival Floriade. It’s been open for 7 days and this is my third visit; YAY for free entry! This would never happen in Melbourne. And YAY for fantastic weather every few days that makes it such a pleasure to be alive and out in the sunshine soaking up the beauty of flowers; you know, in between the rain! And YAY for being well enough so that I actually feel joy and enjoyment of things, rather than hating the sunlight and covering my head in my doona. When the chemicals are balanced, magic happens! So as always I want to enthusiastically recommend my psychiatrist whose knowledge and skill has gotten me from not wanting to live life to loving life! If that isn’t a miracle…

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I don’t have much of a garden myself in Melbourne but I do love gardens. My hubby will tell you that I like the IDEA of a garden more than the actual gardening behind the garden. I tend to love high maintenance flowers but want a low maintenance garden filled with high maintenance flowers. It doesn’t really  work out…so currently I have a variety of succulents and geraniums, all pretty die hard stuff that I never water or feed or tend to in any way. But they flower for me which is delightful. And the rest of the time I get my fix from other people’s or public gardens. Today I got my fix from the ferris wheel, a great idea given by a friend. It really gives you an idea of the patterns of the gardens and just how awesome the whole garden is.

What else did I do with my day besides admiring flowers and taking another hundred or so photos of flowers? I went for another bike ride: 21km this time around the western (=hilly) and central (=flat) loops of Lake Burley Griffin; got some overdue blood tests done by another of the seemingly all grumpy phebotomists; chatted to my grandma on the phone for her birthday (one of the major things I miss about Melbourne!); got some scripts dispensed; mailed a couple of postcards; got some groceries; had a nap. Just another day. But another day where I enjoyed life and put in an effort to live life to the full. It’s a beautiful thing.

Anything!

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

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

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

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

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

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

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

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

That was the 7th of July, 2016.

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

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

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

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

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

 

 

Dozy

Dear lovely readers, I am having the best time! I’m well, I’m happy, I’m productive, I’m energetic, not needing as much sleep or naps, I’m doing stuff, back on my bike, I’m out taking photos of birds, socialising, I’m having house guests, getting organised, spring cleaning of all things!! It’s remarkable and it’s thanks to my psychiatrist, thanks to the extra purple pill per day that I’m taking and thanks to my brain for accepting the intervention gracefully and allowing these happy days. I owe thanks to every lovely person who checks in on me when I’m unwell, so thank you so much; I’m glad I can write good news!

[Written a couple of weeks ago on One Of Those Days! I’ve been too busy living a happy life to write this week! YAY!]

Today I didn’t wake up, not altogether. I’m feeling a bit dazed, and a lot like there is a thick fog well settled well over my brain, and down over my neck, my shoulders and half way down my chest!

I’m struggling to open my eyes, and to keep them open, more to the point. They certainly aren’t fully opening. They just have an irresistible almost magnetic draw to close, and the sleep in the corners of my eyes clagging them together is adding to the problem. You know those moments, when people say they need matchsticks to prop open their eyelids? Except that’s usually at the end of the day, not the start of it. Bleary eyed, irritated and itchy, my eyes just aren’t ready for a new day. I realise this isn’t a first in the history of humans. Other people wake up like this too, it’s not just me. But this is after a full night’s sleep, a good rest. I should be rearing to go.

My whole body feels like its wrapped in a deliciously warm lovely blanket from which it would have to put up a great and tiring fight to escape. Well, I guess that’s not so metaphorical; I am still in bed, and I roll around enough in the night that it’s quite likely I’m twisted tight in the sheets by morning. My body is heavy and weighty and it just seems too hard to move it at all. And why would I want to put in that level of effort when I’m in such a nice situation? Oh yeah, to be the adult that I apparently am. But I can’t really think straight enough even to start planning what shape the day is going to take. What time do I need to get up again? And do I really need to get up, or can I cancel whatever I had planned? Assuming I can actually get this hefty body up out of bed. It’s like I’ve lost all muscle tone and I have to use my mind like a lifting machine to lift each dead weight limb, one at a time and they won’t cooperate! You know, one of those caterpillar diggers with the lifting clamp? Or one of the machines that nurses use, whichever environment is easier for you to visualize.

Drowsy, thick in the head, awful eyes, impossible body, can’t see where to start. And it’s my fault, my husband would remind me! Love you, baby; you really know how to phrase these statements. I am of course joking, he only says it nicely and when I know its the truth anyway.

But it’s true, it is my fault, in a manner of speaking. I took my tablets too late last night, and now I’m hung over. Basically.

I take my tablets by alarm, sort of. When you are prescribed a medicine that has to be taken twice a day, you should ideally take the 2 doses 12 hours apart. Says Miss Pharmacist, but what does Mrs Patient do? So, when will you take it?

It actually takes a bit of working out. Will you take your tablets at 7am and 7pm? 8am and 8pm? Really anything 12 hours apart works. Except there’s a complication because one of the tablets that you take at night with the second dose makes you drowsy and then comatose! It kicks in anywhere between 15 and 30 minutes usually. Sometimes it doesn’t really kick in for ages and I can stay up for an hour longer or more, but sometimes it kicks in fast and that’s it for the day. When I feel it starting to make my eyelids heavy and my insides warm and fuzzy, I head upstairs before I can’t stand straight anymore from dizziness and lack of balance! Please never try to see me at this time of night: the whole whites of my eyes go reddish and I scare myself looking in the mirror! It’s all gone by morning thankfully. In the past I’ve tried to push through the sedating effects but they won’t be argued with! I’ve crashed my way around my bedroom, lurching from wall to wall unbalanced and unable to see straight, and unfortunately having to go to the bathroom! There I sit, having done with the toilet, unsure if I can stand up and get back to my bed next door, feeling weak and heavy as a dead weight. Ask my husband, I think he’s had some interesting amusements in the early days of me using this drug! I’m talking about quetiapine, a mood stabiliser very well known for the drowsiness that it causes, among other things.

So, theoretically I could take my morning tablets at whatever time, then most of my evening tablets 12 hours later, then the sedating medication when I’m ready to go to bed…but that means having life interrupted 3 times a day instead of 2. It sounds trivial when I’m taking so many meds crucial to my health, but when I’m well I’d rather not spend all day taking tablets. So I want my meds in two convenient slots, but what times? If I’m working, this is especially critical. I want to take my meds before work, say 8am. But I don’t want to take my sedating tablets at 8pm and go to bed with the children. Plus its so early in the evening that I’m be sure to be awake bright and early at 4am or something inconvenient! So I tend to push out the night dose to 9pm, 10pm or later. If I’m busy, I just wait til I’m finished doing whatever I’m doing and I’m ready to go to bed and THEN I take them. I intend to get to the point where I’m NEARLY ready for bed, take my tablets and get a little sleepy while finishing off whatever, and go to bed nice and drowsy read to go off to a deep sleep. But I often forget and finish what I’m doing completely before taking my meds. The later I take them, the more likely it is that their effect will hang over into the morning. By much trial and error over 2 years, we’ve figured out that 9 to 9.30pm is the ideal time to take my meds at night, giving me possibly up to 10pm to do whatever in the evening and allowing me to wake up fresher. But unfortunately last night I took my sedating tablets at 11.30pm! Which messes up my system, although it is a fairly flexible system to be honest! When my night tablet alarm goes off I’m just as likely to snooze or ignore as I am my morning alarm. Some little rebellion in me about having to take meds. It never works out well for me. And so, here we are. Sedated, drowsy, heavy, tired; finding it hard to get going.

It’ll get better but slowly, across the course of the day, and it’s probably just going to be one of those days where I shouldn’t drive, need to find something riveting to do to keep me awake, or just succumb and stay in/go back to bed! I guess this is one of those days where not having a job works out for me. I might manage to get up and go to work on a day like this, but it’s questionable what quality of work I would produce, and it’s probably in most people’s best interest that I don’t go at all. So if I’m working, I need to be a lot stricter with myself in taking my meds on time. There’s a fascinating concept called presenteeism which I recently became aware of. You know, like absenteeism where you’re absent from work? Except this is when you are unwell, under stress or otherwise compromised in some way, but you turn up anyway and consequently put in a worse day of work than you might usually. A workplace was looking at how much presenteeism cost them as opposed to absenteeism, and whether it is really better sometimes for staff to just stay home. Doing so would theoretically reduce errors, complications, injuries that may arise from incomplete focus. I don’t know how they’ll measure any of it, but I’m watching on with great interest.

So yes I supposed you could say that being hung over and non functional is my fault. I get tempted to have late nights, to be like everyone else, carefree and not worrying about things like tablets. I know it’ll catch up with me the next day, but in the evening when it’s all going down it doesn’t seem as bad as it will be in the morning. So I push out the time a bit here and a bit there, a lot here, too much there! I do have to be careful that I don’t get myself into a different time zone, taking my tabs at 11pm and 11am or worse and really messing up my hours. While I’m off work I can be a rebel and mess up my sleep pattern and sleep in til lunchtime. Who cares, basically! But work is something that I want and need, and when it comes it’s back to taking tablets by the alarm. Like a good girl. For the best.

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.

 

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?