Calling me

This is probably a long overdue explanation. Actually I can’t believe we haven’t talked about this before. But to save hurt feelings and offense, here’s the deal.

Since I’ve been sick, starting with generalized anxiety disorder and progressing to bipolar 2 disorder, I’ve hated the phone!

Well I hate the phone function of my phone. I actually quite like the rest of my phone, and we spend a lot of time hanging out, my phone’s operating system and I.

What I hate is answering the phone, dialing numbers on my phone, calls coming up on my screen, making calls from my phone, talking on the phone.

There are some known reasons why, and some unknown reasons why. I rationalize it as best I can, but at the bottom of everything there is this primal aversion that I can’t remedy; an involuntary reaction that overcomes some of my attempts to change it.

I guess part of the response is about uncertainty. If there is one thing that anxiety fears it is the unknown. It has such a field day when a thing is not known or not fully known. An unknown phone number coming up on my touch screen sends my heart rate, my pulse, my blood pressure, everything fight or flight about me into a tizzy and I put the phone as far away as I can be by arm’s reach and stare at it as it rings, until finally it stops. Then a missed call message comes up on my screen, then maybe a voice mail. It’s a lot to deal with! Suddenly my day’s calendar has exploded! By end of day I have to get up the nerve to open and read the missed call message, and, shoot me now, listen to the voice mail and hopefully not, but possibly, have to respond to it. Having a known contact’s number pop up on my screen isn’t much less exhausting. Answering the phone, opening my ears up opens a direct pathway to my heart by emotions foreign, unknown. Here’s hoping that responding to the message only takes an inner acknowledgement, please not a text and please please please not a phone call!!

So, the uncertainty. What is so uncertain? Everything, to anyone inclined towards anxiety. Who is it going to be, what are they going to want, how long is it going to take, where are you going to be when they catch you off guard? When are they going to call? What are they going to say, what will I have to say? Nothing can be known in advance, and therefore nothing can be controlled which is how I prefer to operate; controlled. I constantly worry about what emotional toll happenings around me will have on me. How much emotional money do I have today, and how am I going to spend it? Because once it’s spent that’s it for me, off to bed to recharge for as long as it takes. It’s inconvenient, but it works. So I feel that I have to carefully monitor the cost of happenings around me, and what capacity I have to pay for them. That’s just how it is.

That’s if I’m having an anxious day. On a depressed day, it’s much less complicated. The sheer act of reaching my arm out to my phone, having to lift the phone up, transport it to my ear, roll over so that I can put the phone to my ear…just far too many moving parts for me! I’m going back to sleep, they can call later. Or never. Let them leave a text message, a voice mail. Let them leave 10, I’ll deal with it at some undetermined later date which may never come, although that brings it’s own anxiety around having something outstanding awaiting my attention and the same what ifs as before, except I can control the when with a beating heart and shaking hands. So, same result, different motivator and vastly different range of emotions assailing me.

Please don’t take me wrong! I love that you care enough to call. The thought behind it is precious to me, always. Consider your good intentions registered and appreciated even if you never get through to me; even if I’m not thoughtful enough to call you back and tell you so. It’s not you that I have a problem with; I like you. It’s my insides that are roiling and writhing regardless of who it is coming across the telephone network. So many lovely friends, and I let you go to voicemail. It hurts me in the heart to do it, but my jiggling stomach and nerves win out most of the time. I just can’t do it, I just can’t pick up that phone! I do mean to get back to you, somehow. I think about it, about how I’ll let you know that I did get your message, I did note your call. I think, maybe I’ll text you later, or maybe this time I’ll manage to talk myself into calling you, you know, later. But maybe I won’t, and I’ll feel bad, very bad about it. Not bad enough to call, necessarily, but bad. I’m sorry. You don’t deserve this kind of treatment, but I so often just can’t find it in myself to do better. Lately I’m improving, but it’s early days, we’ll see how those nerves go.

So, I text. I love texting! I can read and reread your message to get the absolute fullest meaning out of it, then I can draft and redraft my response, leaving some waiting time in between if I need to ponder new information or digest new events. When I’M ready, and composed, and emotionally calm, and in control, I can text you a reply. No sudden information overload, or rush of emotions. No misspoken words, or “I didn’t mean it like that” moment. It’s just better!

I tend to mostly not pick up the phone, except to my husband who is always safe. Some closer friends also are on the okay list, but that list doesn’t apply at all times on all days so if I let you ring out, please don’t be upset or offended or think that you aren’t a great friend. I just don’t have the emotion to spend today, sorry. Not to suggest that you suck the energy out of me; all interaction does, it’s not personal. As a matter of fact, I tend to put my phone on silent. I also tend to leave it around the house, or in my handbag, or upstairs, or in my work locker; I don’t tend to carry it around with me. So it may be the case that I just didn’t hear your call, or see that you were calling, or maybe I did see it and just couldn’t make myself answer. Either way, I still love you! I’m just dealing with my demons!

If I answer a call, it’s like metaphorically throwing myself off a bridge. It’s a mentally drastic action that I can’t take back once I’ve hit that button, risky to my emotional state, putting myself out there exposed and open to injury inflicted by unknowing people. Will I be hurt, will I get through unscathed? Am I okay today and able to get through what this potentially might be? Or will I regret trying to be better by answering? I would like not to assume that everyone and everything is out to get me, and I don’t really. I just don’t have the emotional capacity that I used to have, that “normal” people have. So I tend to be overly wary, overly self protective. Maybe it’s over the top, maybe it’s insulting. But it is what it is.

I know it’s etiquette to return your call. About that. Deliberately dialing a number with the intention of talking to someone brings every bit of fight or flight flooding in, again! How many times can I take this experience without permanently depleting my adrenaline stores? Add to that an enormous lump in my throat so that I can hardly speak normally, and an overwhelming urge to hang up at every ring! If I actually get to say hello, it’s possibly been an ordeal! Mostly. I have good days. Better days. When it’s not so hard. But mostly I’ve had to take myself firmly to task, and work myself up to dialing back.

Here is a not uncommon scenario: I let the phone ring out cos I just can’t answer, then when I feel ready I text you back. You assume I’m free now and wasn’t before so you call me again. I let it ring out again cos you know, then I text you again. Until you get tired of calling me, I guess!

I suppose I’m trying to condition anyone who rings me to leave me a message. Then I can call back if and when I’m ever ready, or I can text you safely from the comfort of my own home, at the time of my choosing, controlled by me, no risk to my emotional self. Texting is good. It’s safe, I can compose what I want to say, I can respond at my leisure, no one rushing me or hassling me, it’s all in my hands, in my control.

But I guess sometimes I need to be challenged to do it the “normal” way, so don’t stop calling. I want you to stop in that I want to stop having to answer, but really it’s your choice and I’m trying to be better, to deal with it somehow. After all it’s the thing, it’s not you. You are my friend, and I like you, so I’m trying. Make me try.

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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?

Minor issues

[Started Tuesday 27th October, 2015; continued Wednesday, Thursday, Friday, and finally got to the point, sort of, on Saturday!!]

SOo I’m over my deadline again! It’s Tuesday, not Monday. And it’s Tuesday night! Oh dear.

I’ve been trying, but the other two pieces that I’ve been trying to get publish ready are just not ready. I need my chief editor, my husband, to review them and he’s away…poor me! Of course I’m joking about poor me, no poor me whatsoever.

But, since I’ve had some minor issues lately, let’s talk minor. I’m not sure who it is that decides what’s minor and major. I’m guessing someone who doesn’t have issues either major or minor, because if it was anyone with any issues, they would no doubt rate their own issues as major a fair bit of the time.

That’s what we’re like, isn’t it? Whatever affects us, feels like the most important thing going on. There’s nothing wrong with that, it’s just how we are. It’s hard to feel for an issue that doesn’t actually affect us, without a great deal of thought and effort, which we don’t always have to spare.

The issues that I’ve been having are medication related. Side effects; well side effect-ish. Sometimes they’re non specific and vague, or even unexpected and the dots don’t get connected.

You know that I’m a pharmacist, and therefore you expect me to know the side effects of medications. I expect that of myself as well, and I do know them; it’s my job. Naturally I can’t know every single one. The aim is that pharmacists know the majority of side effects, definitely the vital ones, and know where to look for the others in our reference books. Our mantra is: until proven otherwise, assume every symptom is a side effect. Umm, did I read that right? Hmm, seems that I may have forgotten that in relation to myself. Oops!

Side effects are ranked as common, uncommon and rare with a special mention for life threatening effects. Common side effects are those that we expect in around or upwards of 10% of patients; uncommon means around 1% occurrence; and rare is 0.1%. Something like that, as a general rule.

When I counsel a patient on a new medication, we talk about all of the common, and some of the uncommon, side effects, and we discuss rare side effects if they are very severe. Must say, I have been surprised at how much of this information I’ve retained despite such a long time off work! I quite expected to have forgotten a lot! But that part of my brain is still alive and kicking, fortunately! Learning it again would take a great deal of time and effort, and I think I’d give up before I began! So I’m glad that all I have to do is remember the path to that information, and it’s all sitting waiting for me.

Side effects don’t occur exactly as the math indicates, obviously; the math just gives us a ball park of what to expect when a patient takes a medication. Some patients never get side effects, some people get a really rough go with lots, some have one or two, and some people can’t even breathe the air of the pharmacy without developing severe side effects. It depends on all kinds of things; genetic, psychological, race, age, number of medications, how you process the medications through your kidney and liver, and more.

I know the side effects of my medications. But the pharmacies I’ve been to don’t know that. Some gave me CMI leaflets, some mentioned a side effect or two; but I’m ashamed to say that most of my pharmacy encounters have involved a pharmacy student or intern or practicing pharmacist handing me my medication and asking, have you got any questions? This is infuriating! How do people know what they don’t know, and therefore how can they ask questions? Pharmacists really need to pull up their socks on this! The responsibility is on the pharmacist to ensure the patient has enough knowledge to safely use the medication, and if I wasn’t a pharmacist myself, this would not have been the case with a single episode of having a script dispensed.

Did you know that 1 in 3 hospital admissions are medication related? That’s a very serious statistic. Imagine how that could be improved by pharmacy staff just taking a little extra care! I know they do care, and I understand that the sheer volume of workload is very oppressive, but surely we can do better.

Some of the side effects I’ve had have been textbook examples, and I actually find this very satisfying! It impresses me when what I’m experiencing is exactly what someone has described in the medical literature. How clever of them, and how observant! Of course when I say I’m impressed, I don’t mean that I like it, or appreciate it. But I think that the person who wrote it down was very intelligent, and perceptive especially for the era that they worked in which was often centuries ago, and the fact that we still find their information relevant however long later is such a testament to them.

So my textbook issues impress, but frustrate me: sweating, hunger, weight gain, sedation, increased blood pressure and cholesterol, suppressed thyroid, heart burn, memory impairment. And the consequences really get me wound up: chafing thighs, red face, jiggly bits, lethargy. Not all minor, of course.

But as an example, I would never have thought sweating was a big deal. So what? Everyone sweats. It’s just natural. Or perspires; if you’re ladylike! You’re exposed to heat, you exert yourself, you sweat. You wear deodorant to prevent smell, you take a towel to the gym, you shower as often as necessary; and that’s the end of the story. There was this one guy at my old job, an orderly, and by the time I walked into work at 8.30am he already had enormous arm pit, neck and back sweat patches going on. I felt very sorry for him, only a young guy! He is really a candidate for botox injections into his sweat glands to block them permanently and give him some dignity! Or aluminium deodorant, much easier and available at your friendly local pharmacy.

And now it’s me. As always the subtleties fascinate while irritating me. I don’t sweat how you’d think: armpits, back, neck line, like you get from exertion. I sweat like a normal person, with the addition of sweating on my face! Nice and visible, up front and prominent! In defence of this sweating I armed myself with a whole host of clinical anti-perspirant products: under arm roll-on, face gel, leg and groin gel, and used them liberally. Under arm: success, leg and groin: success, face: fail!! To be honest I’m not sure that the others do a lot, cos I don’t sweat there anyway…but the one I really need fails! Or just doesn’t work as much as I want it to, I guess! I’m a bit hap hazard with remembering to use it, but at the end of the day if its slightly warm, if the sun shines, if I have a shower, if I wear too tight or too much polyester clothing, if I get stressed or upset or nervous in any way, I sweat from my face!

sweating, cooling

My doctor recently gave me the medical reason: my core temperature has been increased by as much as one degree Celcius by my anti-depressant. It’s to do with the increase of serotonin. It doesn’t happen with all antidepressants; mainly the class that I’m on that also increases noradrenaline. 1 degree isn’t much as far as the outside temperature goes; I doubt you’d notice it. But our body is extremely finely tuned and our core temperature should always sit between 36.5 and 37.5 degrees. If you’ve ever had a fever you’ll know how crook you feel when your temperature is about 38.3 degrees. But that’s where I am all the time! I get hot, prickly, sweaty, slightly nauseated, and irritated at the rolling sweat beads multiple times a day!

My new comfort zone is when the outside weather is below 20 degrees. I’ll be the one in a T shirt deliberately sitting outside just soaking up what its like to not be hot, not be sweating, and just comfortably existing!

Is there a solution? Yes. It involves a maximum of two layers of thin cotton clothing, fans, air conditioners, face gel (might as well keep using it!), tissues, handkerchiefs, anything that will mop a brow, a bicycle to create my own breeze, and suppressing my pride. For every time someone looks at my forehead while talking to me, asks me if I’m okay because I’m sweating, every painful time I’m forced to use my hand to mop my brow because I’ve run out of nicer options, for every time I’m counselling a patient at the bedside with my hands full and sweat is starting to roll down my face! ARGH! I know I’m not the only one, but you can only feel your own problems, can’t you? No one else sweating makes me hot and prickly!

But, this is the only antidepressant that has ever truly worked for me, so I’m sticking with it! Reluctantly, unfortunately, but the show must go on. And if I’m not on this medicine, the show will rapidly cease to go on. This brings up an interesting concept: what side effects are you willing to exist with, in order to get the benefit of your medication?

A lot of people have asked me whether I’ve considered stopping my medication. The answer is distinctly NO!!! Seriously, without knowing anything about my condition, my medication, and the subtleties of mental health, how could you ever ask that? And IF you ask it of anyone, you have to be responsible for the outcome, which may be dire, just like a doctor would be!! I understand that you are asking out of care an concern, I do. But it’s not an option with me.

Some have asked whether I’ve considered natural therapies: well NO, I want medications proven to work. And the ONLY natural therapy with evidence for depression is St John’s Wort which is only recommended in mild to moderate depression, which is not what I have.

So this is life. I sweat, not that big a deal when you consider the grander scheme, but oh so degrading on a day to day basis. A minor, but not so minor problem. Still, it’s not a suppressed immune system, or clots in my legs, or a physical disability. I can live my life, mostly do what I want, and be functional. That’s a pretty good hand to be dealt!

I promise I won’t hate you if you can’t resist looking up when we next talk. I won’t be annoyed at you for noticing. It’s just how I am now, and I’m trying to roll with it. Because in the end it is worth it, you know? I couldn’t live before; now I can live pretty happily. It’s just this one thing, and that other thing, plus the other one that take some dealing with, but it’s okay. It’s worth it!