Vicious cycling

I’m shattered. Last night, for the first time in a while, I had dinner with a friend, and then rode my bicycle home. Getting around on my bike is deeply ingrained in my psyche. It’s a sort of harmonious, natural relationship between the traveller and the world that you don’t get with an engine. It doesn’t pollute, it’s healthy, parking is easy and the travel time is often comparable. It’s just right for me. And I grew up with it and it’s such an important part of my relationship with my dad.

Which is why I’m so torn up right now. The realisation hit me that I have a health condition which prevents me from mixing bike rides and meals. I can’t go and meet someone for lunch by bike. (Or rather, I can’t come back on the bike.) I just can’t. It is a recipe for disaster.

I detest gyms. It’s just not who I am to get my exercise that way. Idiot doctors go on and on about how people with Type 1 diabetes don’t get more exercise, and that it helps improve diabetes control. If that were the case, why are over 60% of people with type 1 diabetes inactive? (source and source)

The medical community uses the word “fear” to explain why people with T1D don’t exercise. As in, “fear of hypoglycæmia.” The correct word, at least for a good proportion of these people, is inevitability.

Don’t give me any of that “it’s just about learning to manage it” bullsh—. T1D is different for different people. Some people’s bodies just don’t work that way.

I have a management strategy. Don’t eat. It works. And I’m not too bothered by it, because I don’t have hunger problems when I don’t eat three meals a day. But part of the point of going for a ride is to go out for lunch, or dinner, or just stop for some unplanned chips at the beach.

For years I’ve been telling people, “it’s difficult,” “it’s hard,” and I felt demoralised by it. But I’m looking back at it all and seeing that it’s worse than that. It’s not hard. It’s impossible. And I have to give it up. Kind of like having to give up alcohol (or caffeine!) due to a health condition.

The difference is, nobody told me. In fact I was told the opposite. I can easily say “no, I don’t drink because it could trigger seizures.” That was what my neurologist told me and my own experience confirmed. But no, I was told, exercise was great. I was told, you could live the life you want and still do everything you enjoy.

Renza told me that an endocrinologist once admitted something to her: “the biggest mistake we made a few decades ago was telling people they could live a normal life with Type 1 Diabetes.” This was so profound that it took me a day to look back and realise how significant it was.

Of course there are two sides to that coin. Think about the critical attitude shift among doctors whereby they once pushed strict, uncreative regimens with the aim of preventing hospitalisation or death, but now try to help patients have as little impositions on their lives as possible. Newly diagnosed people must not be made to feel like their life is over. And of course, there is trying to instil the right sort of positive attitude and spirit in people with T1D.

Bicycle pasta
I’ve had to give this up

I live a stone’s throw from Bondi beach, but I’ve gotten in the water about three times in the past two years. In the last six months I haven’t touched pizza, pasta, milk... or another two things really embedded in my psyche: cereal and Thai food. I haven’t gone skiing since I got T1D. I travel much less because the logistics are so draining.

People with cœliac or egg or peanut allergies have to make similar sacrifices. But they are told that immediately! I was told I didn’t have to give anything up. That is exactly what was said by my diabetes educator two days after I was diagnosed.

What that endocrinologist (very bravely and humbly) said is deep and profound. It’s like one of those Zen kōans that are packed full of subtlety and meaning-that-cannot-be-understood which you need to meditate on for days.

Look, this wasn’t supposed to be about my bitterness towards the medical system. I’m just sad. I’m sad when I think about riding my bike with dad at night in Thailand, between rice fields or by rivers, and stopping at a restaurant, and just being swept up in the joy of family. I’m sad when I think of when we used to go swimming before school every morning. So many times in the last ten years I saw him feel upset and rejected and frustrated because I say “no” most of the time. And that makes me sad.

Things got easier a few years ago when I got a CGM and he began to understand what happened when I exercised. This is part of why I want to help people find better ways of communicating with their families and friends. It’s hard for people to get it. But it can make a big difference.

The Toxic Psychiatrist 2nd Visit

(If you missed Part 1, read it first!)

Back to my favourite psychiatrist. I was looking forward to it, believe it or not. I was looking forward to a chance to get help. (Seriously. I think Polyanna is my cousin or something.)

Back then, I had started Epilim and life was improving, and I was trying to deliberately be positive and motivated and take opportunities and change the unhealthy circuits in my brain that had accumulated over several years of broken life. So to a degree I was choosing to look forward to it, to be open-minded. But I was also just hoping to be looked after for once.

She was running late, so it was a perfect opportunity to make some small talk with the receptionist. I’ve never really known how to do that, so I was trying to practice. Getting past the social anxiety. Learning to enjoy it, learning not to overreact to awkwardness and how to handle it. And all that stuff that a lot of people seem to be naturally good at. I did fine.

Miss Trunchbull
There’s that staring contest again

The woman of the hour arrives and again invites me to sit in the unfashionable armchair. No “how’s it going?” or “how are you feeling?” of course. She doesn’t do that. Which is fine. It’s hard for most people to answer that question honestly anyway.

She asks me what I’ve been doing since I saw her last. I tell her that I’m trying to balance personal projects, meeting friends, and having down time, for instance playing games. But I also tell her that I prepared and gave a talk on my inhaled insulin, Afrezza, at a fantastic Sydney diabetes meetup, which was, for me, a massive achievement.

Nothing. No reaction. No engagement. If anything she seems unimpressed. Is it just me? Am I crazy, or is this really toxic behaviour for a mental health professional?

What’s her problem? Is it that I don’t have a job? Am I just another hypochondriac rich entitled white kid to her?

Then she asked me what I’d done that day. This was the best part of the whole appointment so I’ll save it for last.

Her whole style seems to be about dishing out “good old-fashioned common sense.” In a “kids these days! No common sense!” sort of way.

I watched a Judge Judy episode recently where a young man causes a car accident. She asks the kid to detail what happened and he said that he looked over his shoulder and saw that he had enough space, so he changed lanes. She said “well he hit you so obviously you didn’t have enough space.” Then she asked him what information he gave to the other driver after the accident. The young man was cagey and she asked “what did you physically give him?” He was still cagey but she forced him to admit it was a learner licence. So he was illegally driving on a learner licence. He justified that he was a good driver already. She prodded further until he admitted he had just failed a driving test. She found against him. In this case, I’m on Judge Judy’s side.

But that’s how the psychiatrist was treating me. I guess in her mind, I was treating my mental health the way that young man was treating driving.

She asked me how much exercise I’d done in the last week. I admitted that I hadn’t managed as much as I should. She threw medical conventional wisdom at me as though it were gospel. I need to get at least an hour every day blah blah blah.

She asked me how I was sleeping and I explained that diabetes interrupts my sleep regularly. “Well you should be getting at least 8 hours—[etc.]” Woman, don’t you think I know that? I don’t need a lecture. It was as if I told her I don’t sleep because I go out and party.

I don’t care that her tone was judgemental with a hint of condescending. (Although many in the T1D community would be shaking their fists purely for that.) Sometimes a bit of an old-school shakeup makes people wake up.

What I care about is the fact that the “common sense” was ignorant, close-minded and a few times, medically unsound or dangerous.

So here is the best bit. Make sure you sit down for this one.

“What did you eat for lunch?”

“Oh, I haven’t had lunch.”

“But it’s half past two!”

“Oh, well I didn’t feel hungry so I haven’t eaten yet.”

“You shouldn’t skip lunch.”

“Oh, I skip a meal if I’m not hungry. Sometimes I don’t have breakfast, sometimes I don’t have lunch. It makes diabetes easier to manage actually.”

“You can’t skip meals,” she said, very condescendingly.

“It’s what works with my lifestyle.”

“Having three meals a day isn’t a matter of lifestyle. It’s what everybody does!!

I dropped it as another one of those “I can’t win this fight” things. We moved onto other things and it went out of my mind.

When it was over, I really didn’t want to go again. But, the receptionist asked me to make a booking so I did, partly due to social conformity and partly because I was being mature and letting my head cool down before I made a decision.

Then I walked onto the street and thought, “hang on... what was that three meals a day thing?” Now I could give it the outrage it deserved.

vintage housewife black and white
We can have cake three times a day!

I’m reminded of those old black-and-white “how to be a good housewife” videos. Everyone (it is implied) has that nice family where the wife prepares breakfast and dinner and gives her husband a nice packed lunch. And irons his clothes. Some households are like that and that’s fine with me. But it’s 2019. How can people still have such a childishly simple view of the world where there is a model lifestyle and a person either strives for it, or is lost, sick, or deviant? And this isn’t some businessman or politician, we’re talking about, but a mental health professional!!

Seriously, she was shocked by my skipping meals, but merely displeased about my limited fish consumption.

Anyway, there I was on the street and suddenly it hit me.

“What if she told a gay person that being heterosexual was ‘what everbody does’??”

Not to mention that Muslims fast for Ramadan, Buddhists fast, and intermittent fasting was already popular at the time. To think I made her a few hundred dollars richer, for that.

Before the next appointment I got a call saying it would need to be postponed because she had a back injury.

Karma.

Also it got me out of having to call and cancel. 😀

The Toxic Psychiatrist

Britney Spears Toxic

Ah, I’ve been waiting to express my outrage about this one for over a year now. Here’s the story.

As you may know, for many years I had no idea what was wrong with my head. I desperately tried option after option, consulting with no less than 12 mental/brain health professionals. Some of them I could immediately tell were wrong for me, while others I gave a chance and got nowhere.

As time wore on, Bianca and I began to question our strong gut feeling more and more often. Surely I couldn’t be right and 10 professionals be wrong? (As it turned out, they were failing me big time.) Not to mention the fact that I have a strong tendency to see the best in people and give them a chance. If I felt they were useless, they must be really useless.

Toward the end of that journey, at roughly number 11, still desperate for help but now with a much better understanding of what was wrong with me, I asked my GP to refer me to a psychiatrist. Unfortunately the only one that he knew well was retiring, so he had to take a stab at a new one.

At her offices, things felt sort of... 80s, you might say, which was kind of normal for the area the surgery was in. The psychiatrist was a thickset woman, reminiscent of an old-fashioned headmistress. Friendly, but with a no-nonsense undertone. I definitely don’t have a problem with any of that, but it fits with what followed.

She sat me in a dark brown corduroy armchair and took a seat behind a desk. As usual, I brought a small folder of notes I had printed out both as reference material and outlining what I wanted to discuss. As with every other mental health practitioner I’ve seen, she clearly tried to steer me away from my notes—as if my own self-assessment were invalid; as if she were better placed to figure out what I needed than I was.

At that point it was not a big issue, but in hindsight (and these are not words I say lightly): Fuck you.

There were the usual “tell me about yourself” and “why are you here?”

And as per usual, there was no understanding or attempt to understand what life was like for me and what I had been through. These people don’t know what type 1 diabetes is like, and don’t want to know. It’s like they think we’re whingers. I’m willing to bet that people with phobias or addictions or trauma don’t have their stories ignored in the same way.

But with her, it was worse. It was horrifying. I told her I had type 1 diabetes. She said “you must have eaten way too much sugar.” I said that no, it was type 2 diabetes where diet was a major factor. No, she said. She had a relative with Type 1 diabetes.

I started “I...” and shook my head nervously. “Generally speaking...” She was insistent. Very insistent. I tried one final “That’s... not true” but it was no use. It was just like being in a staring contest where the other person gives you a look that says “you can’t win.”

And you know they’re right.

Fair enough. Maybe she was ignorant and judgemental about diabetes but was very good at helping people with mental issues. No, wait, (I thought,) maybe it was some kind of test. Maybe she was trying to gauge my personality. Maybe she wanted to see how I reacted under pressure. Maybe telling me what she was doing would defeat the purpose of the test. (cf. secret plan.) Either way, I backed down and forgave her.

Then, “why are you here?” I made it perfectly clear why I was there. Some of my mental health problems were due to my epilepsy. Some clearly weren’t. Some were due to trauma, some to everyday events, some due to my medication, and some due to diabetes. It was really hard to figure out what was what, to unravel the tangled web of really weird, complicated and sometimes unnameable emotions and experiences.

halp plz.

Cat tangled in string

Well that fell on deaf ears. As had been the case with many others, she acted like I had exceeded a word count that people go over when they are confused, when they are overcomplicating things. There was no “that’s a lot you’re grappling with, I’m very keen to help.” Nor was there “OK, there’s a lot to work on.” Nor was there “I’ve never dealt with this sort of thing before. I’m a little out of my depth.” Nor were there questions to try to understand better.

There was just an unspoken “ah... another one of those.”

There were some other procedural things, like what medications I was taking, family history, and so on. Then we got into her trying to “help” me. Am I eating enough fish a week? Am I eating enough vegetables? How much exercise am I getting?

Look, I appreciate it. A very common and very tangible cause of mental health problems is an unhealthy lifestyle. I may be arrogant that I’m already doing my best with everything, but I see the value in someone making me do a sanity check.

But then it got ridiculous. What kind of exercise do I like? I listed a few things including swimming. I explained that swimming is hard because of diabetes. I explained why. She tried to offer silly solutions like bringing a friend and having them hang on to my belongings, instead of actually addressing an issue that is really painful for me, namely the way diabetes gets in the way of things I enjoy. Solving practical issues is all well and good, but it will never change the fact that diabetes always has to be on my mind for safety reasons.

OK, she can’t be expected to know that about diabetes. Except I just told her about it. I literally just explained. Also, I had earlier explained why fruit is difficult to manage with T1D, but it went in one ear and out the other. I need to eat more fruit.

Then she spent at least 5 minutes umming and ahhing trying to think of local swimming pools. Oh, there’s this one, but you have to be a club member. Oh, there’s that one, no wait it closed down. Seriously, this went on for five minutes. I sat and smiled as she sat there wracking her brains for swimming pools.

I don’t pretend to smile. When I smile, it’s genuine. Being warm and patient and optimistic and trusting is just how I am. Unfortunately it doesn’t serve me very well when it comes to my health.

Time’s up, I leave, and think “that really sucked.” But then, as I do, I stopped myself and thought “OK, don’t give up after one visit. These things take time.” So I thought back to what was actually useful. Well, she seemed to know her way around medication, at least. Maybe she would be good in that sense.

Had fun? Read about my next visit here.

The Kitchen

Ow. My eyes.

Here I am at 6:30am, catapulted out of bed by a low alarm, and—hang on, my thoughts are all out of order. Brain booting.

Windows is for noobs.

Right, so, this happened 5 minutes ago.

I’m asleep at my parents’ place. I always feel good when I visit. A low BG alarm smashes through my dreams like a wrecking ball (which according to Mythbusters—as unreliable as this source is—was apparently never a major demolition tool.)

Gee it’s chilly. This place is a lot better... ventilated than mine. I’m wearing pyjama shorts. I really don’t want to face the cold but that fast drop is dangerous. So yes, I catapult out of bed and run downstairs to the kitchen. I check the fridge for liquid carbs, but it seems my parents have got the message that fruit juice is a lot less healthy than people think. (Five stars on the Government health rating! Hah!)

Oh well. Need to turn the light on to find something. Yeoww! My eyes sting. Hunt. Hunt. Unwrap. Eat.

And then, as I’m standing there, right in the centre of the kitchen at the crack of dawn, memories come back to me. I’m not a “flashbacks” kind of person, and I wouldn’t call these flashbacks, but it hit me that there had been many, many times where I had been treating hypos in that kitchen. Under a lot of stress. Or ravenously hungry, eating half the kitchen. Many times at 2am. Many times at 6am. Many times feeling freezing. Many times being scolded by my mother. (I don’t blame her, and she doesn’t do that anymore, but that’s another story.)

I remembered lying on the floor, groaning and whimpering with the sick feelings of a “hypo aura.” And those lights. Those lights! The colour, the intensity; what an interesting association. I guess I used to treat a lot of hypos in the evening or overnight.

Well, my sugar is pretty safe now. Hopefully I can still get back to sleep. Have a great morning...

Having Faith

When you have a worrying health problem, and visit a medical professional, it is hard not to feel a sense of relief. It is hard not to feel like a burden has been lifted from your shoulders. Unless they are rude or the news is very bad.

It’s natural. It’s automatic. You feel a lump somewhere. You go to the doctor. She says, “it’s probably benign, but we’ll run some tests just to be sure.” You’re relieved that it’s probably OK. You feel like you’re in safe hands; you trust that your doctor knows what to do. You can relax because it will all be taken care of. You don’t have to figure it out on your own. And you feel very grateful to the doctor. Even if the lump turns out to be malignant, you’ll know the doctor will work to maximise your chances.

When you’re sick, scared, confused, desperate, or trapped, and someone offers help, they are your lifeline. You trust them, you feel like someone is looking after you.

Faith Healer comic
Comic by Gary Larson

Put simply, when we are in times of crisis, and there seems to be nothing we can do, we turn to faith. We need something to hang onto. Our only hope is medical professionals, so we put our faith in them.

And that is exactly what it is—faith. Far too many times, I watched a medical professional be out of their depth, but I didn’t see it, didn’t want to believe it. I had this hope that what they were doing was guided by hundreds of similar cases and what worked best. I felt they had some hidden plan, something they weren’t telling me, and I trusted it.

Hidden plan. Yep, that’s faith for you.

I knew what I wanted. I knew what I needed. I knew what wasn’t working. But when I asked them for help, they replied with answers that contradicted all that—or no answers at all. And I willingly submitted. I felt I should swallow my pride and anger. That’s faith for you.

When I came back to the real world, I remembered that the same thing had happened last time, and the time before, and their answers didn’t help. But maybe... maybe it was part of a longer-term plan that would work out.

Each time I lost a little faith. But whenever I switched to a new medical professional, I gained faith again. A new relationship, new ideas, renewed trust.

This has happened both with diabetes and with mental health. With diabetes I don’t generally feel there’s a secret plan, but I used to have faith that they knew what they were talking about, and that their failing to acknowledge things I was saying was an indication that I was in the wrong. With mental health, apart from two decent people I saw, there was never any... advice or guidance. Just questions and questions. It felt like they were gathering information. They were making notes. Surely it was leading somewhere. Surely the information would be used for something. It never was. It was just their approach to ask questions and let me find my own answers. I have no need for that.

It’s happening again. I’m visiting a mental health professional, and for the last few visits, I’ve been waiting for the next phase of his plan. What plan? I bet there is no plan. I’m waiting for Godot.

Sound familiar? Don’t fall for the “secret plan” thing. The medical professionals don’t do it to you. You do it to yourself. They have no idea that you feel that way!

But, if they are clearly out of their depth, and they don’t admit it; if they avoid your questions or give you surface-level answers, find someone else. Now.

If that’s not possible, then empower yourself. Read, connect with other people who share your illness. Your medical professional can still be helpful, especially if you know what you want and are willing to stand up for yourself. That can be hard, but a healthy level of anger can help. Don’t let faith stand in the way of your health.

It was actually while writing this post that I realised I’m wasting time and money right now on a psychologist who is not giving me what I need. It doesn’t mean he’s bad at what he does, just that it’s not appropriate for me. So I’m ending that relationship.