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.

 

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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!