Canberra Day Nine

Today was THE BEST DAY of BIRDING EVER!!! EVER!!! So far at least, I’ll try to improve…not that seeing a greater number of species of birds is something that you really have a lot of control over, but still.

Two hours, THIRTY EIGHT different species of birds, no idea about the number of actual birds, and every single one WITHOUT MY CAMERA!! Screams and wails of horror! As a comparison, when I spent 3.5 hours in the bush at Black Mountain last Monday I got 19 species! I got ready for a bike ride this morning, kicking my week off to a good start. I headed off around the central loop of Lake Burley Griffin planning to go around the eastern loop as well, and the birds just kept appearing one after the other after the other! I finished my ride but never again am I going without my camera! Canberra is certainly living up to it’s birding potential! 38 different types of birds and quite a few that I’ve seen only a couple of times if that: Golden Whistler, Black Faced Cuckoo-Shrike, Tree Martin…I wish I could show you, but I can’t.

So I’ll settle for this adorable family of Wood Ducks! 11 ducklings with their parents and another pair of ducks; could they be any cuter? And to all of my Wheel Women friends: no one was hurt in the photographing of these ducks! No crashes, no injuries, all parties went their separate ways happy and unharmed!

P.s. I went to Floriade today, photos to follow, and an even cuter event happened! So I’m changing my photo 🙂

[Note: but you’ll notice that I’ve snuck in the original photo as the header…]

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Tiny little baby Purple Swamphens (AKA Maori hens) which must be pretty recently hatched! But despite their fluffiness and having 3 toes instead of webbed feet, they are great swimmers!

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.

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.

 

The end

A medication order comes to the dispensary late in the day. It’s from the adult psychiatric ward, who only have an attending clinical pharmacist for half of the day, and a pager service for the rest of the day. Because the order is up to the 7th day and the bottom of the page is initialed by ward pharmacists from 3 different days that show they have reviewed the whole chart, it seems straight forward to supply with no need to page the busy ward pharmacist. Especially as the last initial was from the day prior. This shows me that all of the  work has been done to make sure the order is safe, appropriate, avoids their allergies, is monitored as necessary and is okay with all of the other medications. Not a lot of people see the work that pharmacists do to keep them safe while they’re in hospital, but those 2 letters at the bottom of the medication chart mean a great deal!

I go to dispense the medication in our software, and it comes up that the patient is in the oncology ward! Confusing, since the order clearly has the psych ward written on it. So I ask the oncology pharmacist and get a story like no other that I’ve heard yet!

This patient has met SCLC. That’s medical shorthand for advanced lung cancer that was possibly incurable from the the start, most likely caused by smoking, which has spread from the lungs throughout the body via the blood stream and deposited in the usual place that lung cancer goes to: the brain. Isn’t medical terminology amazing? 7 letters that tell me all of that!!

When a cancer spreads the medical term is that it metastasises. The cancer clumps that have spread away from the primary, or first discovered/diagnosed cancer are known as metastases, shortened to mets. This patient has brain mets. The cancer has spread from the lungs into the bloodstream and traveled around the body before settling in the brain and growing there. This is now a secondary cancer because it has come from the primary cancer. We can prove this by taking samples of both cancers; they will have the same histology or cell type, and the same structure and growth pattern. Each type of cancer has a typical pattern of where the mets will appear. Patients with lung cancer will be screened for brain mets. Breast cancer patients will be scanned for bone mets and etc.

I sometimes hear or read of people saying that a person has breast cancer and bone cancer and brain cancer, as though they were 3 different types. The odds of that are really absurb; it’s a once in a lifetime patient sort of odds. Much more likely, it’s breast cancer which has spread to the bone and then the brain. That’s nothing to do with the anything, just something that I’d like people to know.

SO getting back to the story! Our patient has advanced, likely to be life-ending lung cancer that has spread throughout the body and has established in the brain. At this point they cannot be cured of their cancer without very extensive surgery to remove the cancerous lung and brain tissue, and severe chemotherapy and radiation therapy…and even then it’s doubtful! And its a very high cost to pay, especially removing part or all of the lung/s and part of the brain!! Brain and lung surgery? And possible transplant to replace them? for no guarantee? It would be a very brave doctor to recommend that course of treament, unless the patient were very young and fit…which is unlikely given this cancer is caused by smoking.

So at this point we offer palliative care, or end-of-life care, or comfort care. Or try to.

Usually we try to get the patient back home with the appropriate supports of doctors visits to the home or at their usual clinic, nursing care in the home if the patient can’t do for themselves, plenty of medications and basically whatever it is that they’d most like to fill their final days or weeks or months with. If they can’t be sent home we at least give them a private room, unlimited family visits, their little dog/cat coming in, vases for flowers, unobtrusive nursing care and medications, comforting doctors rounds, limiting anything not fully essential like blood tests or blood pressure checks, and again, basically whatever they want that is feasible.

Once we had a wedding, in the patient’s garden around the side with the couples children and close family then day leave and permission for one alcoholic beverage. She died 3 days later at 40 something. Everyone cried about the wedding, either at it, or thinking about it, or seeing her come in from home in her wedding dress on oxygen holding her kids hands.

I’ve seen patients is deep distress changing completely when their little dog is brought in. They coo and talk to it, cuddle it, put their face next to it, and just relax so much. It’s such a tear jerking experience! The change in them, that peace, all that matters is they’ve seen their little dog and it’s going to be okay, and all is okay with the patient somehow.

But in this case, that isn’t going to be an option as such. In this unfortunate patient, the cancerous growth of the brain mets has set off a full blown psychosis! The pressure of  the extra growth onto the brain stretching the brain sac, the location of the mets pushing on certain areas of the brain, physical and chemical changes etc can cause different symptoms like confusion, delerium but I’ve never heard of this before. Think hallucinations, delusions, aggression and violence…such that the oncology ward wasn’t able to deal with the patient anymore and they’ve been sent to the psych ward! That’s not the place for comfort care, for a nice big room with flowers and family spending quality time at the end of life. Instead it’ll be sedation, anti-psychotics, possibly restraints, surrounded by other disturbed patients in an environment that’s hardly welcoming.

And that’s how little control we have over the end of our lives.

Medical conditions eventually get us all, one way or another. I think we should recognise that. We will all die of a medical condition, and can I add, or mental health condition. And we don’t have a lot of control over any of it!

Now it’s full psychosis as a result of lung cancer as a result of smoking.

It might be kidney failure and second daily dialysis as a result of diabetes as a result of a fatty diet.

It might be suicide as a result of desperation as a result of depression.

Where is the control?

So wouldn’t it be nice if we thought of them all the same?

I would love to live in a world where no one ever described death by suicide as selfish.

Because if we can call suicide selfish, what on earth would we call the death due to smoking or a bad diet?? We feel very emotional about the unfairness and randomness of cancer, but is that really in line with how we think about suicide? Depression can be very random and is never fair. It distresses us to see patients on dialysis and in the inevitable spiral to death that comes with kidney disease, but isn’t that just exactly how we could describe the progress of an unwell patient with insufficiently treated depression?

I’d prefer there be no blame on anyone.

As a fatty who is struggling to exercise and diet through her medication haze and bipolar up and down blips, am I really going to say I told you so to diabetes, high cholesterol, and all the consequences thereof, stroke, heart attack, high blood pressure, kidney failure to name a few?

As a depressive who has spent 3 years trying, trying, trying through all the low mood, low motivation, low energy, low self esteem, low interest, low care and everything that comes in that huge big black box, I certainly can never blame anyone who just couldn’t take it anymore, and doesn’t know how else to escape but through death.

The smoking one I’m still in debate with myself over. I guess because I’ve never smoked and I’ve never had to quit, I can much more easily see why it’s a bad idea. However, my judgement is reserved for those who didn’t know it was bad when they took up the habit. People who grew up in my era (can I call it an era yet?) know it’s bad, and took it up anywhere. But again, because my mind sees all angles, I realise that there could still be a lot of factors as to why they did take it up: parents who smoked, peer pressure left over from the 90s, depression/anxiety, and a bunch more. Point being, I don’t think you should smoke but I do know it can be incredibly hard to stop, just like the gym is something I should do and find hard to!

My aim for us all: let’s work together to realise that in the end, we quit, we exercise, we try, but that’s not a guarantee, just a higher likelihood of control.

 

NO

I have a few problems. We all know this.

My latest one: why doesn’t no, mean no?

When I say no, why is that not a clear message that I will not be doing, saying, participating in, involving myself in whatever was asked of me?

When did no become an invitation for appeals to my better person, elaboration of why I should change my answer of no into a yes, and “encouragement” to push through whatever reasons made me say no and find that I actually really meant yes all along?

It kind of suggests that I don’t really know my own mind, that I don’t really know what’s good for me, what I “should” be doing, how I “should” be spending my time.

But how can another person really know what is best for me? Surely no one is more equipped to decide than me.

I am no longer a baby who needs decisions made on it’s behalf, or a child who doesn’t have all the information to make a good decision.

I may not have my full faculties in some regards, but no one has ever diagnosed me with inability to know myself and what is best for me. In fact every single doctor, psychiatrist, psychologist and nurse that I have seen has told me that I have excellent insight and great knowledge of how to manage myself in all aspects of life.

That’s enough of a stamp for me. I wish it were enough of a stamp for everyone.

But I guess that’s life. You have your hopes and expectations of people, but you can’t control them. I think I’m getting a better understanding of this. And slowly starting to accept it.

I can’t control you. But I do control me, and I will continue to do what I believe to be best for me.

Sorry that you don’t agree. Maybe it’s time to consider that I have different goals and a different direction in life to what you thought I had. It doesn’t really matter.

All that matters is that I do what I do, and that’s all there is to the whole situation.