A Day In The Life of My Picky Jerk Brain

Due to the way I am built, I function best in a world laden with routines. I need to tick off tasks in a regular way, progress on my various ventures, and not have too many interruptions. This makes me happy, and it calms my anxiety, my tendency to sensory processing issues, and other gigantic red flags which will surprise no-one who knows me. I am not adaptable to changes in my schedule. My brain just does not shift focus well. It’s hard to make decisions on the spot, so if I don’t have a plan, I just kind of sit around and fizzle and panic.

Due to the way my life currently functions, a proper routine is almost impossible. I work multiple contract jobs, and medical appointments are sprinkled throughout my calendar like confetti, writing off entire days that would otherwise be spent running errands, working, and doing the other things I need to do to keep myself sane.

My makeshift solution, after discussions with the appropriate healthcare professionals, is to make sure that I have a schedule or list of how I want tomorrow to go. Stick to the plan where possible. Build flexibility into the plan (sometimes that means being able to shuffle times around, but mostly it means constantly reminding myself that things might have to move, I might not get things done, and that is okay, as long as I get the bare minimum done, it’s okay, it’s okay, don’t panic…).

Today, I had a fairly simple plan: go get my blood test. Go to gym. Go to the post office to pick up a parcel. Then go to the train station and go to work. While on the train, call my surgeon’s office to explain that I turned out to be allergic to the terrifying immune suppressants (that’s another story). Meet friend for lunch (I’m not actually planning to eat – today’s a fasting day, but that’s also another story). Go back to work. Eventually, go home. Within the work plan, I had decided I would do either one or two batches of purifications. These are dead boring and I find them stressful, so it would depend how I was going. If I only did one, there are other useful things I can do with the extra time.

See? Flexibility. How boss am I?

So. It’s not even 10am, and let’s see how my plan is going.

I potter around the house until the pathology collection centre opens, making sure the bedroom is tidy and neat, the cat and dog each have water, and my bag is packed. I brush my teeth and go through the whole skincare regime, because I have time. I’m already wearing my gym clothes, so I pack clothes to change into when I get there.

Ooh! It’s 8am. Time to go

I head down to the place where they bleed me on a disturbingly regular basis. On the way, I start to have ideas for a story I want to write, wonderful ideas that flesh out the world and the characters and the plot. I am so happy with this that I nearly take a wrong turn (safely. I indicate and do head-checks and all that, I’m just used to turning there and today I shouldn’t).

“Whoops,” I think, turn off my indicator, wave an apology to the person behind me, and keep going to the pathologist. I get there just before ten past eight. The place opens at eight. To my surprise, when I take a number, that number is 6. The place has just opened. I expressed my surprise online, and two people pointed out that these were probably fasting blood tests and so, people were very keen.

That’s my first hurdle. That wait makes a difference to my schedule. I play Boggle on my phone for a bit before realising that I can do stretches in a waiting room without even standing up. So I do that. Long hip-openers, glute stretches, and hamstring stretches. Efficient use of time. This is okay. This is good.

My number is called. I get my blood test. Just after the lady (who remembers me from last time) finishes the draw, she eyes my outfit and says, “Are you going to gym, or have you already been?”

“Oh,” I said, “I’m going after this.”

“As long as you don’t lift weights. No weights for a couple of hours after a blood test.”

I blank for a moment. That’s a problem. That was my entire plan. And a couple of hours delay is not acceptable – I still have to go to work. Alright. Alright. I can cope. I can do this. My brain starts the panic cycle, but I slap it down like the experienced badass that I am.

“What about cardio?” I ask.

“That’s fine.”

Alright, I think, as I get into the car and prepare to drive to the gym. I’ll just do some treadmill time. I’m not equipped to trail run today, and it’s too sunny anyway. My bloody piriformis syndrome (fucking hypermobility, fucking hip pain, fuck, fuck, yes, I’m angry) is still calming down, so I won’t be able to do much time on the treadmill, but I can probably manage a gentle run if I warm up properly.

I get to the gym. My gym is currently undergoing renovations. Nearly half the parking spaces, never numerous to begin with, are taken up by utes and skips full of wood and other renovation trash. There is one parking space free. I instantly see from the way the dumpsters are arranged that if I drive into it, I won’t be able to back out.

No problem, I’m a hills driver. I reverse down steep hills and around corners every day just to get into my own driveway. I’ll reverse into this parking space. I start to get into position, and realise that I can’t do that either, because now there’s a ute that I’ll scrape and bump if I try to angle my car. I stop, fighting the panic cycle again. Okay. Now I have to reverse all the way back out of the parking lot in order to leave. I manage this with no difficulty, but I’m stressed.

Is there anywhere else near the gym I can park? No. It’s all full.

Fuck it. Fuck it. I can go to gym after work. It’ll be packed, because due to the renovations there’s not much room, but I can do that. I continue to soothe myself with promises of flexible plans, and am comforted by the fact that the iPod in the car is playing my Good Singing Day playlist, which includes Sarah McLachlan. Sarah Mac is very soothing, fairly easy for me to sing properly without stretching either the high or low ends of my range, and requires mild concentration for some surprise trills and lilts. This keeps the anxious part of my brain busy as I start up the road towards the post office.

I ignore the fact that, in my current state, there is no way I can manage an after work gym visit without hyperventilating. Monday evenings are packed and I don’t cope well. There’s a reason I joined a 24 hour gym. Right now, it’s more important to lie to myself.

My house is on the way. Maybe I should go home and change. Then I can get my keep cup, which I forgot. Also, I can call my gastroenterologist from my landline, which is more reliable than random mobile coverage on the train. Brilliant.

I get changed out of my gym clothes and pack them into a spare bag to put in the car (just in case I go to gym after work. Which in the back of my mind, I realise I am not going to do), and I call my surgeon’s office. “We are unable to take your call right now. Please leave a message…”

I hang up. I can’t deal with waiting for a call back to explain the problem and then wait for yet another call back from my surgeon. One call back is all I can manage. I sit there for a moment and wonder why they’re not taking calls. “But this is important,” I think to myself, as though only my business is important and other people call the office of a highly priced gastroenterologist for shits and giggles.

Well, shits anyway. Heh. G.I. pun. I’m on fire, people.

I dial the number again, with the same result. I close my eyes. Okay. Okay. I’ll call later, that’s all. And if after 10am, I’m still getting the same result, I’ll leave a message like the fucking neurotypical grown up that I am not, and deal with it.

I go and check that I haven’t left anything in the bedroom, and I spy Ridcully stretched out on the bed. He murrps and stretches out a paw to me. I pet him. He rolls over and shows me his belly. This cat. Goddamn it. This cat. I gently rub the belly and he purrs happily, stretching out his paw again. This is soothing. This is good. He’s very fluffy and for me this is tactile and emotional bliss. Thank god for cats.

I end the love session and walk out the front door, stopping to make kissy noises at my dog through the window. He looks at me, waving his tail happily, and then proceeds to gallop up and down the deck and bark at another neighbourhood dog currently having a tantrum. It’s going to be one of those days. I feel a bit sorry for my neighbours. He’s not usually like this.

I get in the car. I drive up the street. “Fuck the post office,” I think, “I’m already so behind and today is fucked.” I start to turn towards the train station and stop.

“Today is not fucked, you just have to rearrange things,” says the soothing voice in my head that I have worked very hard to train up. “It’s okay. It’s okay. If you go to the post office, it’s all done and dusted and you’ll feel better. Plus,” and here the soothing voice starts to cajole and coax, “You can get a coffee at the post office café and sit down and calm down, and deal with a few online tasks while you’re there, and then you can try to call the surgeon again. You’ll feel better.”

This is good advice. Thank you, soothing voice. I take myself up to the post office, still singing Sarah Mac. I’m admiring the golden autumn leaves and the sun lancing through them. It’s like a fucking poem up here sometimes, like I’m living in an Anne of Green Gables novel, only with more tourists and less Canadians.

Out of nowhere, the thought bubbles into my head that there are ulcers and lesions in my small intestine, burrowing through the mucosal layer as my immune system works to destroy my gut, and I’m so horrified by this I want to cry.


Somehow, I succeed. I get to the post office. I manage to collect my parcel, make small talk with the guy behind the desk, and then go into the café and order a coffee. It’s perfectly decent (it’s a long macchiato, half the places I go burn them), if a bit watery. And I sit down. And I breathe.

I check my email. I sent two messages to two different people. I discreetly add a small tab of Splenda to my long mac, because “decent” turned out to be an excessive kindness. I’m about to RSVP to an invitation from my work email (I tried to do that earlier and it didn’t work, which also makes me panic).

(Word just crashed, by the way. I stared at my laptop and just said “No. NO. NO.” Fortunately, I had just saved. Thank fuck.)

After I do the above, I will try to call Surgeon Sam again. This time, I will leave a message if there is no answer. I will also call my gym and ask when the renovations are going to finish as I am considering putting my membership on hold until that is done, because I’m not coping with the new setup. Then, I will sit here for a moment. I will breathe. I may read a page or two of my current paperback.

Then I will go and catch the train.

If you’re reading this, I obviously decided to share the panicky nightmare of my morning. If you’re reading this, I decided that it was important that someone see what it’s like when this sort of anxiety takes hold. Everything gets over-thought. Everything is a potential disaster. A brain that adapts poorly tries to react to changing circumstances and marinates in a cocktail of stress hormones while doing so. None of these things are anybody’s fault. If anything, I’ve downplayed the level of stress and panic that has been taking place here.

I have the advantage that I’ve learned pretty well how my brain works, and I have a lot of coping strategies. My “soothing voice” is the main one. I also call it the voice of reason. I’ve learned to listen to it – it’s taken me a long time. I used to think it was full of shit, to be honest, but I’ve learned that I can calm myself down by internally talking to myself and reminding myself that the day is not ruined, everything will be fine, and most of these things are not a big deal. I don’t adapt well, but that’s okay, I can take my time to restructure my mental image of how my day is going.

At the same time, the anxiety is not rational. There’s a basic mechanical reason that I respond to things this way, and the initial response is not something that can ever be trained out of me. It is what it is.

I struggle sometimes.

Diagnosis Roulette: The Metaphorical Cricket Bat of WTF

My long journey towards diagnosis appears to have finally tottered to an end.

I haven’t updated this story in a while – when last we heard, our hero had discovered that 9mg of Budesonide EC was no longer effective in managing the abdominal pain. Since then, I’ve discovered that I had an FC (fecal calprotectin – don’t ask) score of 376 (it’s supposed to be < 50, so let’s hear it for “You Definitely Have Crazy Intestinal Inflammation”), and I’ve been to see a pain specialist, who turned out to be marvellous.

Absolutely marvellous. I’m now on 150mg of Lyrica (pregabalin) per day to manage what is apparently termed “Visceral Hyperalgesia” which is what happens when your viscera (innards) are so used to being in pain that your spine starts sending pain signals even when there is no reason to do so. It turns out that peristalsis should not hurt. I now rarely take my prescription codeine (although it is necessary when I break keto for fieldwork, because my inflammation and thus pain levels skyrocket). I can even take an extra 25mg of Lyrica one hour before a running workout, and the change in blood supply to my abdomen won’t cause me to stagger to a halt from pain.

To continue on this winning plan, I turned out to qualify for a pill cam, thanks to some surprisingly low iron (honestly, I was not expecting that).

This was exciting, I-live-in-the-future stuff. I actually ate a camera. I wish I’d taken a photo of the damn thing. It was probably about the size of a large fish oil pill. Then I wandered around all day with a belt and a sensor attached, while taking Amos for a walk, collecting next door’s dog for a visit, and watching Netflix. It was the most productive medical examination I’ve ever undergone, given that usually I’m unconscious at the time.

Anyway, then I went on a ship for nearly three weeks of fieldwork, during which time I was, unsurprisingly, not getting Telstra reception and thus not able to get my test results. As soon as my feet hit dry land, I called my surgeon.

And got my result.

I was right. I have Crohn’s Disease, ileal (i.e. in the small intestine). Patchy inflammation throughout, so reasonably widespread, although I’ll get more detail on how widespread when I go see my surgeon. It just hasn’t turned up in the first 80cms or so of small intestine that can be examined in a gastroscopy.

At first I was relieved. Immensely relieved. Also, surprised. I wasn’t surprised by the diagnosis – since that’s what I thought I had, for a long time – but by the fact that I actually got one. I’ve been getting medical tests that say “well… sort of?” or “you look normal, honestly” or “that’s a bit weird but…” for so long that, even after the FC score, I was still expecting the result to be inconclusive.

Now, it’s started to sink in that I actually do have an incurable progressive autoimmune disease and, while I feel a great deal better about the fact that I have an actual label I can put to what’s wrong with me (it’s not all in my head! I HAVE PROOF!), I’m not feeling great about the big picture.

My future will probably involve some reasonably terrifying immune suppressants, and it’s overwhelming. Imuran is the nominated drug in question, and Googling that made me want to curl into a little ball of panic. Fingers crossed that my reasonably good luck with side effects continues (I’ve managed to avoid side effects for Zoloft, Lyrica and Budesonide so far, because I’ve been blessed with the medication tolerance stick, but those are relatively benign drugs). I won’t find out more about it – the dosage, the risks, the monitoring plan – until my next appointment with Surgeon Sam, which is – who’s counting? – eleven days away.

What else my future will involve… is unclear. I’ve been brushing up on Crohn’s, reading the books that I’d already read albeit now with closer attention. Previously I’d been reading up out of curiosity, a bit of concern, and suspicion, as well as the comforting notion that if I did have Crohn’s Disease, I had a relatively mild form of it (this is still true. Mild for Crohn’s). Now I’m reading it with the reality that this all applies to me, at least potentially. This changes things.

My short-term goal is to get into remission. This will aid my long-term goal, which is to reach a ripe old age with my small intestine intact. This is now a goal I have to actually think about, as opposed to a smart arse off-side remark about something I might or might not have. I have to consider the literal possibility that I might have loops of my intestine resected (which is, as near as I can tell, a fancy medical term for “taking out bits of you and joining up the other bits, you’ll never notice, I swear”).

I probably have carbohydrate malabsorption (hence, why I do better on keto). I may have some iron malabsorption (hence, low iron, in spite of the vast quantities of iron-containing foods I consume on keto). There are huge categories of nutrients my damaged gut might be unable to absorb, leading to long-term issues. Iron, calcium, magnesium, folate, and the reabsorption of bile salts are all a matter of some concern (that latter one will explain the agonising gall bladder pain I occasionally get. I am hoping to hold onto my gall bladder for as long as possible, since I eat a high fat diet and I use the damn thing). The giant pile of supplements I started taking to account for deficiencies in my diet now morphs from paranoia into necessity.

Here’s my dream outcome: the terrifying immune-suppressants work, and I get into remission. I slowly wean off the steroids – and the immune-suppressants – and get to be a person who is just monitored. My flares are rare and separated by long periods of happy, non-active-Crohn’s time. My fatigue issues go away. My pain issues go away.

This is medically possible.

Whether it’s likely – and whether it’s more likely than other outcomes, which involve surgery and long periods of being unable to work – I don’t have the expertise to say.

So this is an emotional rollercoaster, but on the bright side, at least now I can stop wondering, and I can access more aggressive treatment, and I can easily describe what’s happened to me (this is crucial. Labels are very important to me).

It’s very hard to think about anything else. I might be a one-trick pony for a while.

Happy Diagnosis Day.