A bad day

**Usually I write in a very controlled way. I write on my good days, and although I access sadness and badness and evil, I do it in a way that I can manage easily without things getting out of control. Yesterday things were out of control. I was having a bad day and a bad moment of despair and crying into my pillow and thoughts just exploding all over the room and I thought, you know what? I need to write this down. If I can’t write down the darkness and disorganised-ness what am I really showing you of the “real” diseased me? So this is raw and I apologise if it’s too much of anything. By the time I am writing this, things have been sorted out and we’re back on track. There’s still the diet thing, I’ll get to that another day, but for now here is the thoughts as they spilled out of my head in my crying despair**

Stayingquiet

I’m the Monster. The one under your bed. The one that jumps out and scares small children and large adults alike. The obese monster, morbidly obese by the books. The one who side on, at a glance, could be confused with a large tree trunk or concrete pylon! Who has been asked TWICE this week if she’s too far into her pregnancy to fly! And another two times in that same week if she’s pregnant, once before a massage and once before a dress fitting. Cos that’s relaxing!

I’m the Destroyer. I start with memory foam beds and crush the memory and the foam out of them. I move onto brand new leather couches and triple my husband’s imprint in the first 3 months. Time to change sides! Then I grind the life out of said husband until he doesn’t care, or hurts so much from caring that he leaves. Well that’s my mental image of how this goes, in any case, and I’ve had a couple physical images to assist with the mental image; that’s the extent of his distress.

I break laptops, drop mobile phones, spill anything remotely liquid, trip over power cords ruining plug connections, slip down inclines, fall over pebbles, draw ink on bedspreads, stretch clothes in the wash,  wrench roof racks and bikes off the car roof bending the metal and stripping paint off bikes and car alike!

I’m fat, so fat, so very very fat and it’s ruining everything. I’m told. It’s hard to see from the inside. I’m ruining my marriage by being fat. I lost my job from the consequences of being fat. I’m slow, I’m too slow, I need to lose weight, I need to speed up, I need to change, change, change change, stop being me, be someone else. Someone not fat and not slow who isn’t ruining everything.

My husband is fed up. And why wouldn’t he be? 3 years of me being sick, 16months of being off work before, 9 months in a job and here we are, back at the beginning. And if I just lost weight it would fix everything. I wouldn’t be ruining the couch, wrecking the bed, sitting at home doing nothing. If only I would lose weight. Because it’s difficult for him, me being fat. Every day it’s hard for him, me being fat, he tells me. It’s hard on him. I’m fat and it’s hard. He says we can’t do things, be things because of it. It’s fair for him to ask me to lose weight, because he has to deal with it too. And me not losing weight makes him think I’m not trying, I’m not trying for us. Can’t I do it for him? Can’t I lose weight for him? If I won’t do it for myself. It’s been 6 weeks. 6 weeks since I saw the dietician and starting a food diary. And I haven’t lose any weight. Why? Because I’ve been snacking. Why? Because I eat in emotional situations. So instead I’m meant to be dealing with my emotion. Here you are, here is my emotion. I’m dealing with it.

thunder inside

I hate to cry. Crying is weak. I know, I know; I shouldn’t say that. Especially me, advocating for mental health. But to me it’s weak, I hate it, and I avoid it. But here it comes, crying, because of my diet. If I cry, I don’t store and if I don’t store, I don’t eat because of the store. Apparently. So I’ve cried twice since starting my diet.

I want to see that you’re putting in an effort. But you won’t see it; change is gradual and you don’t see weight loss for a while, a good long while. So what do you want to see? It’s such a lot of pressure, proving something. Proving you did, defending that you didn’t; proof. I’m trying. But I want to see that you’re trying. Well I am trying. Well how can I see that you’re trying? It goes round and round.

And now, one in the bed and the other one said I can’t stand this anymore. Is it cold? How cold? Who cares, I’m storming out. And I’m crying my tears because I have to put in an effort and one can’t bear it and the other can’t wear it, and it’s a mess. Royally a mess. What to a fix? I promise sincerely I will truly really do what I’m told, and I will make the numbers go down, and I will make them keep going down. And then we will live happily ever after because I’ll be able to energetically walk everywhere that I’m asked to walk, and I’ll enjoy physical activity and my fatness won’t slow me down and make me sluggish and I’ll be fixed. And if my condition and cures continue to prevent that from ever being realized? Well at least I’ll be skinny. Life is better when you’re skinny. Time for my daily walk and my diet jelly. Adieu.

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.

 

Recovery

 

“You will get there when you are meant to get there and not one moment sooner. So relax, breathe, and be patient.” -unknown

 

Last Wednesday was an interesting day for me.

Another new start, another new pursuit, another new hobby, another new lifestyle angle.

I began a new journey, a new pathway towards I don’t know what exactly. I participated in my very first formal mindfulness class.

When I was in my first year of university and had my first panic attack, I went to see the campus counsellor. She was a really sweet lady and helped me through some difficulties, frustrations, emotional strain and odds and ends in our one-on-one sessions. She also got me involved in a lunchtime class where we tried meditation and mindfulness as stress reduction methods.

I don’t have a very clear memory of that time; I had a lot going on I guess. But I do remember one mindfulness exercise that we did with a mandarin and I’ve gone back to that a few times over the years since then.

This year and last year while I’ve been seeing a psychologist pretty frequently the idea of mindfulness has come up briefly a few times and the last time I was able to borrow a mindfulness CD from my counsellor by well known Dr Craig Hassad, lecturer at Monash University. That was a good reminder of what mindfulness is and how it can be used.

So now I’m doing this class for two and a half hours every Wednesday for eight weeks. So far, I’m very happy. The lovely group leader is a practical, kind lady who has made me feel very at home and the other members of the group all seem like they are very nice as well. I was a bit worried that it might be really alternative and other worldy, like rituals and incence and weird stuff; but thankfully its all very normal and logical and helpful.

We arrived on a freezing cold morning to a delightful old church done over for other uses. Not only was the heating on high but we were able to help ourselves to lovely fleece blankets that had been warming in front on one heater to keep ourselves soft and cozy! Plus cushions and pillows; how lovely! Off to a good start!

What I’ve been thinking about most is not the course so much, but how I introduced myself to the other ladies; no men in this particular course. My introduction of myself was that over the last year or so I’ve been progressively diagnosed with anxiety disorder, depression and now bipolar disorder. I told the other ladies that I’m now in the recovery phase of resting, starting medications, having doses changed and getting used to medicines.

Recovery phase.

Interesting.

When I got home that day I thought about that a bit more. And realised something. I tell other people that I’m in the recovery phase; resting, medications etc but I don’t let my brain get that memo. I’m telling myself a whole other message, which is hurry up and get your stuff together because your life is waiting for you and it won’t wait much longer!

See? A whole other message!! And quite a lot more stressful! So time to help myself out.

Danika, you are in the recovery phase.You can rest, you can allow time the healer of all things to have its place to work. You can allow medications to take their effect, you can attend your appointments with your doctor, psychiatrist and psychologist. You can go to your photography course, your mindfulness course, to free meditation class, on bird watching walks, on interesting day trips and excursions. You can take naps when you need them, rest when you are tired, socialise if you have the energy.

Can you take five minutes to realise how amazing this is? You have free rein to do whatever you feel like to help yourself and heal yourself!

Don’t think about how you can’t do everything that you want to, don’t worry about your limitations, don’t get put off by tiredness or weakness or feebleness. You can do whatever you feel like and are up to with whatever resources you have. That is amazing!

And make a new attempt at perspective, please. You have been on six different antidepressants on less than a year, each one taking a month to six weeks to show its full effect then needing to be washed out and a new one started. You have been on varying doses of a mood stabiliser since March and each dose or formulation change had its own issues. Remember that you started lithium not even eight weeks ago, and that the last dose change was just three weeks ago!

Three weeks. That’s not forever ago, you aren’t taking forever to get better, please remember that you are still taking step after step and every change takes some kind of toll, so you need time to roll through each new wave of turbulence.

 

 Don’t even think about work.

 

Those are the words from the psychologist provided with my insurance.

 

Don’t even think about it. Just relax, take it easy, take your time, get yourself better.

 

At my last psychiatrist visit we checked in again about my colossal weight gain and high cholesterol. He’s still thinking about putting me on a cholesterol lowering drug.

 

Its pointless trying to diet and exercise right now with all the changes in medication. You aren’t going to be able to do much about it until we get you stable.

 

Stable. We aren’t there yet. You are still in the figuring out what’s what and getting everything straightened out stage. You’re still adjusting to having this condition, and having to take medication twice every day and having to take life at a different pace.

But as always, instead of taking the psychiatrist’s words face value, I debated with myself and am still debating whether using that information is a cop out, and maybe I can do more about it than I think, and maybe I’m just being lazy and not trying etc. Typical!

But no, rest, relax, take advantage of this amazing time that you have. You’re young, you have time to fix your cholesterol, time to fix your weight, it doesn’t have to happen three weeks after changing doses of lithium! Sure, if you have the emotional and physical energy you can small changes now, but let’s resolve to postpone the big changes until 2015!

You’re in the recovery phase. You’re only job right now, is to recover. So off you go, recover. Rest, relax, enjoy, feast on this unexpected piece of time that’s been given to you, make the most of having very few responsibilities and hardly any “have to” claims on your time. Recovery.

So tell me…?

Something that I’ve found out along this journey with me, my head and I is that questions are really important.

It was that question that has become an advocate for helping others with mental health concerns that first triggered my understanding of the need for questions; R U OK?

I’ve always been interested in mental health and I saw this group pushing people to understand and use the question R U Ok? to start talking to others about what’s going on, what’s wrong, what’s troubling you, what’re your concerns? I thought it was a great idea and I bookmarked it in my head to use someday if I saw someone having a hard time.

I wasn’t sure that it would be effective but I planned to give it a go anyway; nothing ventured, nothing gained, right?

But then, before I had a chance to use it to help another person, someone asked me, and I burst into tears!! Just like that! That is how powerful the question is and how right on target it is to really hit the spot when someone is down, anxious, fearful, despairing etc.

I didn’t think it would work. But I walked into a doctor’s room to get some routine results, she asked ‘are you okay?’ and it turns out I wasn’t, to a severe degree which I had not even realised up until that moment.

When she said, ‘how are you?’, as I walked in the door I said fine. That question is just too automatic and we are too programmed into a standard response that doesn’t really give an answer. We know when we ask it that it’s more for form than for really enquiring into someone’s health. It has become a greeting more than a query. Not to say that it can’t be used as a question; some people can inject that something extra that shows that they genuinely are enquiring about your health, but usually that’s not the case.

But there is something unique, direct and unusual about the question ‘are you okay?’ that hits a nerve, that registers with a person as an actual question and that demonstrates some extra kind of care and interest on behalf of the asker.

Questions are so important in mental health.

We can’t lay open a wound, or show an obvious dislocation, or contusion, or register a positive blood culture, or low blood level as evidence of our condition.

We may not look ill, or sick, or injured to other people.

All the evidence of our ailment is locked inside our heads.

It is literally all in our minds, but not in the way that that saying is usually used, to suggest that it’s a figment of our imagination!

There is nothing imagined or exaggerated or fictitious about any mental illness.

However there is a level of difficulty for anyone treating a mental illness, be it doctors, nurses, psychiatrists, psycholgists, counsellors or any other health professionals.

To diagnose a mental illness, as with any other condition, a set of diagnostic criteria must be met. But none of those criteria are obvious when a patient walks in the door.

The diagnoser (doctor or psychiatrist) must be able to draw out the information that they need to make a diagnosis by asking questions. They need to ask a lot of questions. Questions designed to gather information, to confirm suspicions, to determine signs and symptoms of the condition.

They have to be very skilled in asking questions AND in listening to the answers for clues about what is going on with the patient.

It takes time! Sometimes a lot of time. Sometimes questions are asked over and over. There is a purpose to that; it is to gather the right information so that the right diagnosis is made and the right treatment given. It might seem repetitive but every question fills a useful part of the overall picture. It’s not a sign of incompetence on the part of the person asking the questions; its a part of their professional skill.

Patients most often don’t know what is going on with them. I’m a health professional with a clinical understanding of mental illness but I still didn’t recognise mental illness in myself. I just thought I was stressed at work. The fact that I was constantly obsessing over work all day and night, that I couldn’t sleep, that I was being clingy and petty and being a huge strain on my husband with my concerns and fears and anxiety didn’t occur to me to be an excessive reaction. So I can’t even imagine how patients with no prior knowledge of mental illness feel when they start to suffer from symptoms.

They might be scared, afraid, stressed, anxious, overwhelmed, confused, in denial or fearful of what the diagnosis will mean and what treatment will be prescribed. So the doctor also has to tread carefully around the person’s soft or sore spots but still trod and poke enough to get what they need to do their job.

In any emotional state a person has more difficulty remembering and recalling, trouble giving an accurate history, limited ability in listening and responding, and struggles with taking in information. This is one of the reasons why questions need to be repeated; to be sure that the right answer has been given. It’s also why seeing multiple doctors on different occasions can be useful in building a clearer picture of what is going on.

Often a patient may not be diagnosed immediately, because of these factors. It may be considered in the patient’s best interests to allow them time to go away and calm down, to give more thought to the history of symptoms that they have experienced, and then to bring them back and ask further questions. Of course it isn’t safe for all patients to be sent away; some need to be kept for their own safety, some need to have treatment started immediately. For those who are sent home to return late, maybe the same questions will be asked all over again, and although it seems tedious to the patient, it is all for the purpose of gathering as much information as possible so that the best outcome can be achieved for every patient.

So, questions.

Tell me what’s been going on?

How have you been feeling?

When did this start?

Who have you already seen about this?

What treatments have you tried?

Has anyone in your family experienced any mental illness?

How long have these symptoms been going on for?

How severe are your symptoms?

What symptom is the most difficult for you?

What has brought you here today?

How are you today?

Compared to then, how are you now?

What do you think has triggered these symptoms?

What has happened that might have caused this?

What do you know about your condition?

What do you know about the treatment for this condition?

What’s the worst symptom that you are experiencing?

How are you coping?

Are you experiencing any side effects?

Give me a run down on how the last week has been for you?

How often do you shower?

How often have you been getting out of the house?

Are you finding enjoyment in life?

How has your motivation been?

What have you been getting up to?

Have you been hearing or seeing things that don’t exist?

Has anyone been speaking to you through other objects?

Are you suicidal?

Have you had thoughts of harming yourself or others?

Do you have a plan to harm yourself?

Have you had suicidal thoughts?

Have you had thoughts that are frightening to you?

How has your sleep been?

Tell me what you are afraid of?

Do you ever have periods of great energy when you can achieve a lot? Or when you don’t need sleep?

When are you not anxious? Are there any places where you feel comfortable?

What things make you anxious? What things trigger a panic attack?

There sure are a lot of questions that can be asked!! And this is probably the tip of the iceberg really, these are just the questions that I can remember from the health professionals that I saw. I’m sure there are many others for other mental health disorders.

And yet, the most important question is whichever one you ask to the person that you see struggling. It really doesn’t matter what it is. It can be r u ok?, how ya doing?, what’s up with you?, how are things?, how have you been going lately?.

As long as you take the courageous step of asking and listening, you will be doing the right thing. Go you!!