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.

Tales of a missed dose

[Written 16th June 2015]

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

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

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

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

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

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

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

boxes, bottles, tablets, capsules

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

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

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

So here’s the quetiapine absence timeline.

strips, tablets, capsules

10 to 11pm: I can’t get to sleep.

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

Say I managed that. Next time check?

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

medication list

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

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

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

medication box, tablets

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

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

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