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.

 

Voices

 

I’m friends with the monster that’s under my bed

Get along with the voices inside of my head

You’re trying to save me, stop holding your breath

And you think I’m crazy, yeah, you think I’m crazy

Well, that’s nothing

-Monsters by Eminem feat. Rihanna

 

I love this song called Monsters by Eminem with Rihanna and always sing along when it comes on the radio while I’m driving. The chorus mainly, I’m not skilled enough to rap along with Eminem! “I’m friends with the monster that’s under my bed”. To be friends with whatever our own particular monster is; what a great goal to have!

To accept that I have a monster in my life, to accept that it isn’t going away and can’t be gotten rid of, to accept that it will always be right there lurking under the bed is one of the biggest parts of reaching remission with mental health disorders. Acceptance is key.

That’s what I’ve been told by my therapists and I really do think that this is true. I’ve seen enough patients with mental illness, mostly schizophrenia and sometimes bipolar disorder, and every now and then depression, anxiety or panic disorders who do not believe that they are unwell to know that believing the diagnosis and accepting the need for treatment is the biggest advantage you can have on your side. From then on out, having a good relationship with your doctor, having faith in the treatments given and doing what you can for yourself are added bonuses towards successfully managing your condition.

Fighting against the diagnosis, disbelieving the doctors, resisting the label, not wanting to accept the idea of illness takes so much emotional energy, so much mental energy and makes you prey to so much more time exposed to the condition that is ravaging you. It can also make your condition harder to treat once you finally succumb to the idea of needing help as it has had so much more time to get a strong grasp in your mind and the symptoms may be a lot more advanced. You wouldn’t do this to your body if you had diabetes, leave your body exposed to high levels of blood sugar damaging your blood vessels and nerve endings while your organs starve for sugar. So why do it do your mind?

Because at the end of the day, mental illnesses like diabetes or thyroid disorders or heart disease are conditions that are not curable, in the sense that they never go away but can be well managed. Bipolar disorder doesn’t just pop up then vanish away again. But it can be managed away to the extent that it no longer controls your life and so that people around you have no idea about your condition, and maybe you even forget that you have this monster.

Here’s to becoming friends with whatever it is that scares the pants off us! To becoming friends with our monsters.

 

[ I ] Get along with the voices inside of my head”

 

I don’t have voices inside of my head.

That sounds like a statement of denial, but it isn’t. I’m just telling you a fact about me. Trust me; I’ve been thoroughly checked for voices! By my GP, my psychologist, two psychiatrists and a number of nurses. And myself, just to quintuple-check.

I mean that I don’t have voices in the sense that most people expect voices. I don’t have auditory hallucinations such as people can have if they suffer from schizophrenia, psychosis, some forms of bipolar or delirium. I don’t hear people who aren’t physically present telling me things, commanding me to perform certain actions or speaking to me through objects like the radio or TV.

But I’ve come to learn about other types of voices that can be just as damaging. The inner voice. Everyone has one, to whatever extent they allow it to be heard in their own mind. The little voice that chats away in the background carrying along beliefs, ideas, thoughts, judgements, criticism and hopes and dreams. And sometimes not only one voice. There’s my inner voice that carries the weight of history, experience, self esteem and knows me well. There’s the inner voice which is other people’s beliefs projecting as their voice and most importantly, my new inner voice!

One of the things I’ve been trying hard to work on during my recovery is to change my inner voice, or develop a new inner voice. Depression and anxiety can both have a large self critical and other people critical component. When my current voice criticises or judges or makes snide remarks, I try to correct it. Not with judgement, or criticism, or rudeness. If I took that approach, my new voice would be as difficult as my current voice!

So when my old inner voice sparks up a thought train that I don’t want to follow, my attempt is to gently override it with a better thought, or kindly redirect it. When a critical thought comes to mind, I try to tell it, no that’s not how I want to think about people anymore, and then I try to impose a better thought onto that thought to overcome it.

Maybe the idea pops into my head that that girl over there is fat. But that’s not how I want to think about other people, and I have to bear in mind that I myself can be classed as fat, so instead of thinking those thoughts about her and me, I’ll think about her beautiful hair and her lovely smile. Which will make me smile, and enjoy these nicer thoughts 🙂

It is not easy! It takes a lot of hard work to get along with the voices inside of my head! Being friends with the monsters is much easier for me! I don’t know if everyone has the same difficulty, but it’s taken me a lot of work to get to where I am and there’s still a way to go. I know consciously exactly how I want my mind to be, but it doesn’t change just for me wanting it to! It takes practice and repetition and solid thinking!

But at least I’m on the way to getting along with my voices, a little progress is better than no progress!