ADHD Coping Mechanisms and “Masking” Behaviour

Getting a diagnosis of ADHD at age 36 with a PhD and two degrees under my belt has thrown me for a loop, and no mistake. Of course, I increased the intensity of my reading, trying to understand what my brain is doing, why it makes life hard, and how the hell I got this far before I fell apart (i.e.: the past three years have been a disaster from an ADHD perspective).

It turns out that there are a lot of ways that people with ADHD can cope with their problems, mask the symptoms (and I’m still ashamed and embarrassed by a bunch of them, which I need to work through), and generally delay diagnosis. Even qualified psychiatrists can be fooled by these coping mechanisms, thinking that a person is coping a lot better than they are.

Or, to put it bluntly, some of us are very good at putting a brave face on our difficulties, and we don’t even realise that’s what we’re doing. My psychologist didn’t pick up on my ADHD at all, even though a good number of my sessions were about feeling overwhelmed and miserable and adrift because I couldn’t get anything done. She’s been great for me in many areas, but she just didn’t know much about ADHD.

What I’m going to do here is list out the coping mechanisms that I have used to deal with my (undiagnosed) symptoms and get through a PhD in science, and also my own daily life. And… some of those mechanisms were also about hiding how messy and disorganised I was underneath it all, so no-one would see.

The other thing is that most of these coping mechanisms are really hard for someone who has an ADHD brain in the first place, and they have a price.

Without further ado: How Doctor Kate Gets By

1. Redundancy! Backup Plans!

I forget things. Lots of things. All the time. Keys, glasses, phone charge cable, actual phone, wallet, medications and so on. If I’m in the lab, I’ll walk all the way across the building from my desk only to realise I’ve forgotten (a) my new set of samples or (b) my lab book or (c) my headphones (essential for lab work).

Hey, maybe I could “just try harder” to remember things. I could “just pay attention” or “just be more careful” or any of the crap that gets said to forgetful people. Except I literally cannot do that.

Nope. Better to just accept I’m going to forget things, and plan for it.

So I need to set up situations where forgetting things isn’t catastrophic. I can always walk back to get my samples and my lab book. I can get home without my keys (albeit not comfortably). It’s frustrating that I sometimes leave the home three times without what I need for the day (sometimes getting halfway down the road before I have to drive back – like forgetting my gym bag when going to the gym).

I now have two pairs of glasses, one of which lives in my backpack whenever I’m not wearing them (see #2), the other which stays at home or comes out with me when I don’t take my backpack.

For medications I might need to take during the day, I have a set in both my handbag and my backpack, a pharmacopoeia ranging from Telfast to high dose codeine.

I have – I am not exaggerating – five lightning cables. That’s right. I have five phone charger cables, not counting Husband’s, which I could borrow in a pinch. One lives by the end. One in each car. One plugged into my desktop. And one in my backpack at all times.

2. Put things back

This one is really hard for ADHDers, but I’ve basically branded it into my brain. When I have finished with something, if it has a place, I put it back. Keys in the key bowl. Shoes on the shoe rack. Dishes get rinsed and left in the sink because I can’t deal with dirty dish smell. Shopping gets unpacked. Shopping bags either get put back in the car or in the hall cupboard.

I think being a laboratory scientist helped with this – you have to put things away in a lab, or not only will you make mistakes and a mess and slow yourself down, but your co-workers will actually murder you.

The problem with this is that it’s not something that comes naturally to me. It takes time. I’ll forget what I’m doing halfway to the hall cupboard, holding the bag, or stare blindly at the shopping trying to work out what to put away first. I might unpack my suitcase as soon as I get home from a trip – very organised, Kate, very good! – but I do it in an immensely disorganised and slightly manic way. I’ll start putting some things in the laundry and then I’ll see something that has to go in the kitchen and then when I get to the kitchen I’ll see that there’s a bill on the table I need to pay and- then I’ll get back to the bedroom and see the other stuff I was doing, and go on with that. And I’ll be doing this at top speed, too, whirling around the house like a determined tidying tornado.

Things that other people do easily and calmly are hard for me. There’s a lot of standing still and waiting for the thought or the plan to come back to your brain (medication definitely helps with this in a fairly huge way, but it is not magical).

The problem is that I have to do this, to stop the chaos piling up around me. I dread that chaos. It’s horrific and shameful. And there’s another reason to keep it down: see #3.

3. Reduce distractions in your environment

ADHDers naturally tend towards chaotic environments. That mess and disorganisation takes over our lives. Some can find a sort of peace with it, and just accept it, but I have real trouble. I am so much happier in an uncluttered environment. I can’t make be at home with the ADHD chaos. Part of that is that I find all that mess inherently distracting.

Objects and paperwork catch my eye, interrupting my thoughts and reducing everything else to white noise. Books I haven’t put away cause me to stop and think about them instead. Dirty dishes and mugs are just gross and set off some of my aspie sensibilities.

I hate the physical sensation of mess. I hate if I have to move things or step over things to do what I need to do. I want to be able to spread out my arms without bumping into crap. Most of all, ADHDers also tend to be very uncoordinated and clumsy. We bump into things and drop things. Navigating mess is a lot harder than navigating a clear space, and it’s mentally exhausting. It’s why I want to keep my backpack organised and my desk space as clear as possible. The odds of me knocking a coffee onto my keyboard will be greatly reduced, or fumbling around trying to pick something up that’s under something else. I hate dropping stuffs, and I hate that I do it so much when everyone else seems to be able to pull stuff out of their backpack without it going everywhere.

Me? Nope. There’s no dignity at all in how I navigate a space.

So: I put things away. And it’s hard. And it takes way longer than it should. But I do it, because if I don’t: chaos and frustration.

Mind you, because it’s so exhausting and frustrating…

4. Organised “well enough”

In Delivered to Distraction, Hallowell and Ratey recommend that ADHDers ease back on trying so hard to be organised. We can’t do everything. It’s going to be too hard and it’ll exhaust us – but we don’t need to everything. We don’t have anything to prove, here. We just need to be functional. Get organised well enough to do what you need to do.

Turns out I’ve been following this advice for years. I’ll make sure my working desk space is clear, but shove everything into drawers (because it doesn’t have an actual “place” to go and I’m too tired and cranky to figure one out. I find that overwhelming). My lab book (which is supposed to be written out so clearly that everyone knows exactly what you’re doing) has all the information that I need, and that’s it. I store samples in such a way that I know roughly where they are, because I don’t have the mental energy to organise them precisely.

Maybe once a year or so, I’ll go through those drawers and sort them out. Otherwise, I have a pretty rough idea what’s in there, so it should be okay.

5. Muttering to myself

Welcome to my most annoying and yet second-most-effective coping mechanism: I’m an irredeemable mutterer.

My working (short-term) memory is for absolute shit. I’ll forget what I’m doing in the middle of an action. Happens all the damn time.

As it turns out, my auditory memory is… pretty functional. I remember sounds, not actual thoughts or intentions. If I get interrupted by a thought in the middle of an action, but I’m describing what I’m doing to myself, I can use the sound of the words I’ve just spoken to pull me back.

If I repeat a phrase or a number over and over and concentrate, I’m much more likely to remember it. I’ll say the names of my samples when I add them to a PCR, or the coordinate of the well I’ve just loaded, because then if I can’t remember if I loaded it, I’ll remember the sound of B6.

I provide constant running commentary of what I’m doing, or odds are pretty good I’ll forget what I’m doing. So there’s a lot of Oh yeah I need to change the bin as I walk into the kitchen to change the bin because otherwise I’ll walk into the kitchen, forget what I was doing, and get a snack, and then go do something else, and forget the bin entirely.

This can make me a very annoying person to be around!

I try to keep my muttering minimal while there is someone nearby, and I can keep it way under my breath when I’m an office, but without it, I just can’t remember what I’m doing. I was quite flattered and chuffed when my PhD lab mates said they missed me in the lab when I was away, because it was too quiet. I thought they were having a gentle dig and apologised, and then one said, “No, actually, your muttering is kind of soothing, like that’s how the lab is supposed to sound.” Which is a situation I was very lucky to enjoy!

Because if I don’t do this, I’ll go into the bathroom with the intent of moving the wet laundry into the dryer, and instead I’ll scoop out the kitty litter, because I’m in the bathroom now and that was probably what I meant to do, and I won’t remember the washing until the machine beeps again, long after I’ve walked away.

The other advantage (that I have just recently realised) is that for me it’s a kind of verbal stimming, which I find very soothing and comforting. When I’m in an environment where it’s not okay for me to mutter much or I don’t get an opportunity to sing aloud, I find my urge to make weird noises is overwhelming. It’s almost a tic.

6. ROUTINE IS THE BEST THING AND ALSO THE WORST

This is the absolute number one most important coping strategy. It’s basically like a hack for the ADHD brain. Stack a number of habits and tasks together to form a routine, and after a little while it becomes natural. I have a routine at home, just a little one. After breakfast, I go clean my teeth (including flossing and also doing skincare stuff). Get clothes on. Then make the bed and tidy the bedroom.

It is the silliest, tiny thing, but it restores an important space, reduces distraction, and makes sure I floss (and also that I don’t get toothpaste on my clothes for the day, because I brush my teeth in my pyjamas). I find this routine – this particular order of tasks – incredibly soothing. It makes me happy. I get a dopamine hit. I feel like I’ve exerted some small control over my environment. It helps me get out of the house.

At the time of writing (or drafting) this, I’m in Perth for work. The place I’m staying is great, I have everything I need, and it’s a short walk from my work site and there’s even a café on the way to pick up a coffee, but I have terrible trouble leaving for work in the morning. It’s so damn hard. The order of putting on the kettle, making breakfast, laying out clothes, taking medication, all those things, it’s all up in the air. I can stare at my clothes in confusion wondering where to start (in spite of the obvious logic). I should put the charge cables in my bag. I should put the kettle on. I should make my lunch for the day. And I should do this all at the same time.

*head explodes*

I get stressed, so I open up my phone and check my social media. Yeah. That’s a top idea when you have a tendency to get distracted from what you’re meant to be doing. I’ll find a conversation I need to respond to right now, and everything from clothes to breakfast gets forgotten.

I lie awake at night, consciously planning what order I’ll do things in the next day. First, take meds. Wait, no. Refill water bottle. Then take meds. Wash face. Then put kettle on. Then get clothes out. Don’t forget to pack your gym bag.

Over and over, trying to impress it into my memory. And it… does not work well.

Outside of my routine, my coping mechanisms start to fray around the edges.

And I have to acknowledge here: my brain wants to rebel against routine. Often I love it and it’s soothing, I get a sense of control and achievement and I can function almost normally – but then I’ll just get frustrated and angry at the sameness of it all and I’ll desperately want to break away from the structure that I need to function.

But without that routine, without that structure, I’m a semi-functional teenager again, wading through a mid-calf high pile of crap in my bedroom, wondering where my maths textbook is.

7. I drink a lot of coffee

ADHDers are known to self-medicate. Caffeine and energy drinks feature heavily, and I’m no exception. It’s just a good thing I didn’t end up using alcohol, or dope, or cocaine, or any of a number of things I might have turned to. Instead, I drank a shitload of coffee and a bunch of sugarfree V. I had to, because my brain only lets me do a lot of things at the last minute, and I needed to stay awake. I used it in a desperate attempt to clear out the brain fog that made it impossible for me to focus on anything. It helped a little bit. Some of the time. Oddly, I find I’m drinking a lot less coffee now that I’m on medication…

8. Leave things out so you don’t forget- no, wait – deal with it NOW

I try to leave out papers I want to read, or bills that need to be paid, or essentially anything that needs to be dealt with soon. This isn’t too bad now – I have better strategies for ensuring things get done – but basically what I end up with is giant piles of things I mean to deal with and don’t. The fear is that if I put them away neatly, I’ll forget about them – and I will. When they’re not in view, they don’t exist in my brain. Then eventually the mess distresses me more than that concern, and I give up and put them away.

As a note: this is why I pay bills as soon as they arrive. I walk in the door, get out my phone, open my banking app, and pay them right then. I can afford to, so I do it, I write the BPay receipt and the date at the top, and they go on the “to be filed” pile (although, ha, guess how often the filing gets done).

9. Skim Reading and Note Taking

Without note-taking, I’d have been useless in my undergraduate lectures. I need the physical movement of the pen to get me through it. I skim read papers, searching for the key phrases of interest, noting the abstract, the results and then searching for the relevant parts of the discussion. As I’ve discussed elsewhere, reading papers is actually hell for me, so I have to employ a strategy to make sure I get what I need from them.

10. Exercise

So. Apparently exercise is superbly good for ADHD people. It releases a bunch of brain chemicals that help us focus. I didn’t know that at the time, but I suspect this was also one of my coping mechanisms throughout the ol’ PhD. Having the executive function to get myself out of the house and down to the gym was a challenge when I was overwhelmed and distressed, but it was worth it when I could manage it.

When it comes down to it, these strategies mostly work for me, but they are exhausting. They are draining. I feel like I live in this rigid framework of reminders and calendars and plans and lists. Unpacking and tidying takes so long. A lot of mental effort goes into maintaining all this. I resent the hell out of it.

But if I don’t do it, the whole structure just falls apart.

P.S. Yes, this post is way too long. No, I don’t have the energy to edit it. I’ve been meaning to write it all week and if I don’t put it up now, it’s not going to happen. ADHD in action!

 

Advertisements

On Diagnosing Others: Pitfalls, Temptations, and Considerations

The last couple of years have been a glorious roller coaster of diagnosis, treatment, and rapid changes to my quality of life. I started out as a person who was constantly exhausted and in pain and unable to focus on anything, stressed and overwhelmed, watching my life slide away from me while I tried to get things done and failed, needing to rest and work out and rest and work out and everything else fell by the wayside.

It’s been frustrating, miserable, and overwhelming. It’s eaten money, and time, and career opportunities. I leaned heavily on Husband and my wonderful friends to drag myself through it all, trying to find a way to be awake, to not be in pain, to concentrate long enough to succeed at something. And without those friends, and certainly without Husband, I don’t think I’d have reached the end of this ride (not that I’m necessarily at the end, but I have all the big pieces of the puzzle).

And yet, I can’t regret it, because now I understand the shit that my body and my brain are pulling on me.

I understand it; and I can treat it. I won’t ever make my body or my brain normal – that’s neither achievable nor, in many ways, desirable (although I’d kick Crohn’s Disease out without a second thought). What I can do is find medications for the symptoms that respond to medication, and find work arounds for the symptoms that don’t.

And I still have trouble – I’ll always have some trouble – but it’s better. It’s much better.

It’s left me with a niggling problem though.

I want everyone else who has these problems – all of which can be incredibly difficult to track down and diagnose – to get help as well. I want their lives to get better. That’s a trap. Generally speaking, people need to be left to manage their own medical situation, for so many reasons. There’s nothing more infuriating than the tenth person who has asked if you’ve tried yoga for your genetic musculoskeletal disorder – and you’re lucky if that stops at ten people. People want to help, and it’s a right fucking pain.

No. Multivitamins will not fix my autoimmune disease, thank you very fucking much for your heartfelt advice.

I don’t want to be that person. And there’s a natural tendency, when you’ve just been diagnosed with a problem, and when you have a solution, to see that problem everywhere you look. You’ve been given all these hints and clues, and now your eyes can’t help but find them all over the place. The safest thing to do is to zip your lip.

But.

But.

None of these things that I have – the Crohn’s, the ADHD, the hypermobility syndrome – are rare conditions. ADHD is estimated to occur in 2-8% of the population, and symptomatic forms of hypermobility syndrome could be as high as 10% (for varying degrees of severity), and is especially common in women. The overal incidence of inflammatory bowel disease (Crohn’s Disease and Ulcerative Colitis) in the Australian population is much lower, at an estimated 29.6 per 100,000 people (although that estimate was calculated in a 2010 paper). Which makes it uncommon, not rare.

And a lot of people can have these conditions without realising it. They just know their stomach hurts a lot sometimes for no apparent reason, or their vision goes black when they stand up too fast and they get really tired for no apparent reason, and they keep injuring their back or their ankles, or perhaps that they can’t focus or concentrate and they just keep procrastinating – and they feel so horrible and lazy, because why can’t they do things that seem so easy for everyone else?

And all your test results come back normal and nobody seems to believe you. You start to think it’s all in your head.

As it happens, a lot of common issues actually require some very specific tests.

Here’s the problem.

Apart from Crohn’s Disease – which, if not diagnosed, can legit actually kill you, although forms of CD that severe will usually inspire you to get that checked out anyway – these conditions are not going to cause your actual death.

Undiagnosed, unmanaged and untreated ADHD can make you thoroughly miserable and adrift in your life, feeling like you’re wasting your potential and constantly scrambling to keep up.

Undiagnosed hypermobility syndrome can leave you an exhausted, anxious mess with joint pain and freezing extremities who sometimes might pass out, or who might end up diagnosed with an anxiety disorder you don’t actually have (despite near-constant panic), and a whole laundry list of other weird things that turn up in a multi-systemic condition resulting from a defective family of proteins that is genuinely ubiquitous in the body (I will write a post on these other effects at some point).

Undiagnosed mild Crohn’s Disease is unlikely to kill you, but constant or near-constant or unpredictable abdominal pain is a miserable thing, and I have to say, being hospitalised every year or so for recurring abscesses is no picnic. Crohn’s Disease does also significantly increase your risk of bowel cancer, so it’s something you want to be aware of.

Getting these things picked up and sorted out is no picnic. Getting an adult ADHD diagnosis can be expensive and difficult – there’s still a little stigma in the psychiatric community against adult ADHD, and even more against diagnosing women – so you need to do a good deal of research to find a doctor who is even going to be open to treating you. Very few doctors have any understanding of hypermobility syndrome or the consequences it has on blood pressure, or even the severity of the problems that low blood pressure and orthostatic intolerance can cause – so that slides under the radar, and there are very few specialists that deal with it appropriately.

They are very expensive.

As to Crohn’s Disease? By the time I’d got that diagnosed, I’d had a colonoscopy, a gastroscopy, a CAT scan, an abdominal MRI, three fecal calprotectin tests (one of which came back normal) and a pill cam. The FC tests eventually – eventually – suggested a serious problem. A normal result is less than 50. A definitive result is over 100. I got results of 92, 12 – 12! – and 376. In that order. The pill cam eventually showed my Crohn’s, and also revealed why it was so difficult to find. It was so deep in my small intestine that it was beyond the range of the gastroscopy, and – while severe enough to cause very unpleasant symptoms – it hadn’t caused the sort of scarring and narrowing that would show up in an MRI or CAT scan.

And my story – as I understand it – is not uncommon. A lot of people with more severe symptoms have cryptic Crohn’s Disease that hides away.

Not all of these tests are bulk-billed by Medicare. The specialists certainly aren’t, as a rule.

All up, I’m out of pocket a few grand for diagnosis, testing, consults and so on. Not to mention a few non-PBS medications.

The fact is that – again, except for the Crohn’s – there are ways to cope with and manage hypermobility syndrome and ADHD without a formal diagnosis and prescription medication. People who don’t know they have ADHD often do know that they’re forgetful and easily distracted, and they come up with coping mechanisms. People with hypermobility syndrome might notice they feel better when wearing tighter clothes and doing regular core strengthening exercises, so they do that. They might wear bracing equipment when they work out, because they have “bad knees”. They might take various medications for their anxiety (although they might be a bit less effective if the cause of that anxiety is a defect in collagen and resulting blood pressure and adrenaline issues).

It won’t be worth the time and the money for everyone to look into these things.

But. Maybe it is.

What can I do without being an interfering, condescending, git? Given that I’m pretty sure I have a couple of friends with undiagnosed ADHD, and I can think of five women I know who might have hypermobility syndrome (ranging from “hmm, maybe,” to “oh my fucking god, you have this, I’m not even kidding, get thee hence”), it’s a real problem. I’m fortunate that in most of those cases, I’m close enough to these people to be able to say “soooo, this made me think of you, a bit, so, let me know if I’m being a pain but I thought you might be interested…”

But if I’m not close enough? I can’t do that. It’s neither fair, nor safe. People with chronic illness – even misdiagnosed chronic illness – have enough complicated shit to deal with without having to manage my excitable interest in their condition (unless they’re a close friend, in which case for the most part they’ve already signed up to the “Kate is a biologist and gets excited by weird shit, just roll with it until she shows us another cool picture of an octopus.”).

So.

In those cases, all I can do is what I’m doing now.

I can share my experience. I can write about my symptoms. I can write about the symptoms that I, personally, don’t have, but which occur in other presentations of my conditions. I can share what I know about the diagnostic process. I can be open about medication, and be willing to answer questions.

And, sometimes, when I say “…and then that happens…” and someone blinks and their mouth drops open a bit and their response is, “Huh. So that’s not- that’s a thing? That… oh. Wow. Hm.” Or sometimes, they just laugh at me, and say, “but everyone gets that, that’s normal,” and when I explain that actually, no, not so much, there’s another jaw-drop moment.

Then I can direct their attention to resources, if they’re interested, or leave it alone, if they’re not, and they want to process for a bit and do their own research.

This is the best way I can help, without being a git. To talk about myself, and tell my own story, and make it clear that, if you’re concerned, you can ask me about it.

And to talk about how much fucking better life is when you get decent diagnosis and treatment, all the way from being in less pain right down to feeling less like you’ve been going mad because all your test results were normal and you thought it was all in your head.

Chances are it’s not all in your head.

You deserve to be listened to. You deserve help.

Ask away.

Diagnosis Roulette: Formally Bestowed the Title of “Bendy”

I’ve written frequently about how I’m a bendy individual, and how having a defective collagen gene or two has presented a multitude of difficulties and challenges. Ever since a physiotherapist first frowned at my feet and muttered under his breath, “Oh, where do we begin?” I’ve been aware that there’s something not quite right about how my body works.

For a long time, I thought there was nothing that could be done. I figured that all I could do was physiotherapy – strengthen the muscles that support my joints, build up my core strength in particular, make sure that I undertook activities that would train my dysfunctional proprioception (feedback from the rest of my body, knowing where I am in space, balancing).

A few years ago, I learned that hypermobility syndrome, or Ehlers-Danlos, depending on which moniker one ended up with, was a multi-systemic condition. This makes perfect sense. Collagen is a family of structural proteins distributed throughout the entire body. Defective collagen doesn’t just make you stretchy in your joints and skin: it affects temperature regulation, energy levels, immune response, gut function, urinary function, and so on. People with hypermobility syndrome can present symptoms from all of these areas or maybe just one or two.

But I still figured there was no point pursuing a formal diagnosis. It sounded expensive and troublesome.

I got talked around by two people, who pointed out that having a diagnosis would help me access help I needed if I ended up doing something truly wacky to my joints, and also pointed out that there were medications that could help with some of those weird extra symptoms.

Plus, I’d finally reached the point where I didn’t know what to do any more or how to manage the situation. I’d discovered that the day after running, I was wrecked. Absolutely useless. Horrifying fatigue. Full body ache. And I was convinced I wouldn’t be able to run any more, that as a bendy person, I’d be doing continued accumulating damage to my delicate tissues. All the online advice I saw strongly discouraged running. I was pretty devastated. I’ve worked really hard on being able to run, for a long time, and it’s one of my most intense personal achievements: I could never run as a kid. Never.

So, I took the specialist name I was given, I requested a referral from my GP, and I made an appointment.

I went in on a Friday morning, and the friendly nurse asked me a slew of questions about my history of fainting, migraine, allergies and various other things. I was fitted with a blood pressure monitor that I was required to wear for 24 hours as I continue my normal activities (yes, I took it to the gym), and a bunch of electrodes distributed across my torso to monitor my heart rate. This, I was required to wear for 36 hours.

I won’t lie, it was a pain in the fricken’ butt. The blood pressure monitor was constantly beeping whenever it was in a position that it didn’t like, the electrodes needed to be coddled whenever I moved too much, and two weeks and several showers later I’m still finding bits of electrode adhesive clinging to my skin.

It was worth it.

I went in on the Monday morning with the requisite hardware no longer attached to my person, and I spent the next hour and a half chatting to a very enthusiastic man about my entire strange history of illness and pain and discomfort and crappy balance and anxiety and so on and so forth.

Here’s the summary of how this went and what it means:

Actual Diagnosis

Under the pre-2017 diagnostic criteria, I would be readily diagnosed with Ehlers-Danlos Syndrome, Hypermobility Type. Under the new criteria (which are quite weird), I wind up with “Benign Joint Hypermobility Syndrome”, which is a stupid name, as it feels profoundly ­un-benign, and it’s really not just about joints (we didn’t get through all the diagnostic stuff before we ran out of time so it is still technically possible I might qualify for EDS, but he thinks it unlikely).

Sidebar: Dentists

I’m just inserting this here, because it has been a bit useful. People who are bendy and have defective collagen often have quite thin and porous enamel on their teeth (I told you: collagen is everywhere). This makes dentist visits a lot more painful for them than for other people! Add in the fact that bendy people are often highly resistant to local anaesthetic and need more shots (I need 2-3 relative to a normal patient’s single injection), and that often those shots contain adrenaline and bendy people are sensitised to adrenaline (I explain this below), and you’ve got a situation just crying out for panic, pain, misery and tears.

Recently I went to my dentist for the six month clean and check-up, and I told her about this diagnosis. “Aha,” she said. She knew exactly what it meant, was familiar with the effects on enamel, adrenaline tolerance and anaesthetic resistance, and exactly how to deal with it. She’s always been good when I just say I have “sensitive teeth”, but this just made it very straightforward. So now I get the numbing gel (lots of it, and no adrenaline), and also get given a spiky massage ball to fiddle with when sometimes a clean does get briefly painful (which was very helpful. Maybe that has something to do with the ADHD, I don’t know, but it really helped!).

But now, onto perhaps the most overwhelming and life changing consequence of defective collagen.

Low Blood Pressure

One of the key and most significant effects of the defective collagen is low blood pressure and orthostatic intolerance (i.e.: you feel lightheaded when you stand up too fast, sometimes your vision blurs or becomes tunnel vision or goes black or grey, your heart rate ramps up, and sometimes you might actually pass out). I’ve always had that “ah crap, I stood up too fast” issue, and I frequently have to sit immediately back down if I don’t pace myself on it. I don’t even have a choice, my legs just fold. I sit down in the shower. When I was a teenager and in my early twenties, I sometimes had to crawl out of the shower and lie down on the bath mat for a bit.

This effect occurs because the collagen in your blood vessels is too stretchy to effectively constrict, and constriction of your blood vessels (vasoconstriction) is how the blood gets back up to your heart and your brain from the lower half of your body. Now, muscular movement helps with that pumping, which is why I can walk basically forever (or until my muscles or bad feet give out), but I can’t stand still for longer than five minutes (and even five minutes makes me feel horrible).

Low blood pressure makes you lightheaded, often nauseated, and exhausted. Constant low blood pressure results in brain fog, fatigue, sometimes weird pain like that tight pain in a “coat hanger” distribution, from your shoulders up to your neck and jaw (I always thought I’d just been tensing my jaw too much when I ran, but noooo!).

Low blood pressure can cause migraines. It can cause you to be extremely sensitive to cold, particularly in your extremities (I just spent a fortune on skiing socks to wear in my house, and also set up a radiant heater under my desk because I am so unbelievably tired of my feet going numb when I’m wearing two pairs of socks, ugg boots and an electric lap blanket, and the household heater is going). This condition is associated with Reynaud’s phenomenon, where blood vessels constrict in the extremities and fingers and toes turn white and blue due to lack of blood flow. Low blood pressure often means you hate the heat, because your body’s natural response to heat is to dilate your blood vessels, and your already low blood pressure plummets, and you get to feel exhausted and sick all the time.

So cold makes you miserable and causes pain, and heat makes you nauseated and exhausted and you fall over. This is why I have such a narrow optimal temperature range!

Important sub-heading: ANXIETY

Low blood pressure also causes anxiety. This is because when your blood pressure drops, your brain thinks you’re dying, and decides to pump up the adrenaline so you can escape the threat – except there’s no immediate physical threat, of course, and here you are with an unnecessary, constant flow of adrenaline, leaving you with the very clear symptoms of an anxiety disorder, complete with panic attacks. Understandably – and unfortunately – it gets misdiagnosed as an anxiety disorder, and then treatment of it is a bit iffy in terms of effectiveness.

I’ve always had a bit of anxiety, and some days it’s dreadful enough that I basically panic anytime anyone comes near me, and I’ve never really known why. Theories abound – I have some baggage – but this makes sense. And now, when my blood pressure tanks, I have noticed that my anxiety gets a lot worse!

(As a side note: this is why a lot of bendy people become sensitised to adrenaline, and why when we are given local anaesthetics containing adrenaline, we freak out. I start shaking and crying like I’ve just been given the most terrible news, right there in the dentist’s chair. It took me a few tries to figure it out, but now I ask if dentists and doctors would please not give me adrenaline if there is any reasonable alternative.)

Back to Low Blood Pressure

Now, the low blood pressure issue is why I was ending up completely benched after running. Intense exercise necessitates muscle recovery and repair; and that process demands blood. And when you’ve got low blood pressure, and the blood is being redirected elsewhere, well, it’s not getting to your brain.

It wasn’t tissue damage. There’s no actual evidence from actual scientific studies to suggest that high impact exercise like running is going to be a problem for me in the long term. As long as I’m careful and try to avoid injury, I should be fine. I probably shouldn’t take up any contact sports where I’m going to fall over a lot, but I can run.

I can run.

Three Treatments for Low Blood Pressure in Bendy People

1) Get Moving

Exercise is encouraged. It helps raise blood pressure overall, and that’s probably why I’ve found it so helpful on a shitty fatigue day to just go for a walk. It probably takes about 5-10 minutes before I stop feeling like death, but then everything picks up and I start to feel human again. The problem is that for a lot of people who have been struggling with this for a long time, all they’ve learned is that exercise wipes them out and they feel dreadful – so they don’t move at all. However, a slow increase in activity – 20% a week is about what’s recommended – can help raise your baseline blood pressure. Just be very careful not to overdo it (obviously, the right exercise can be helpful for joint support as well, so it’s two birds and one stone).

Given my activity levels – which are pretty high – the specialist said that this wasn’t really a problem for me. I was doing the right things there, particularly as regards physiotherapy, clinical pilates and weights.

2) Granny Knickers, Corsets and Girdles

After exercise, we move on to the next solution: compression garments. Blood tends to pool in the large blood vessels in the abdomen, so it needs to be something that compresses that area.

Essentially, we’re talking shapewear. High waisted granny knickers, girdles, or under-bust corsets (waist shapers) fit the bill. They have to be tight, really tight, to raise blood pressure. Gentle compression to smooth outlines under a dress is not going to cut it.

You shouldn’t wear it lying down (blood will pool in your thorax, not desired), but if you’re up and about a lot, it’s worth giving it a go. I’ve bought a couple of items to experiment and yeah, it helps. It really helps. It’s like I can just let out a breath and relax, as though I don’t have to try so hard to be upright. I didn’t even know I was trying that hard!

They’re not always the most comfortable things, and I have Crohn’s Disease and chronic abdominal pain: compressing my abdomen has consequences (basically an increase in pain!). So I have to pace myself on these.

The other issue for me personally is that the very concept of shapewear – or at least, the way it’s marketed, to try and standardise women’s (and men’s) body shapes – kind of triggers a wee bit of feminist frustration. And yet, very functional garments!

3) Drugs, drugs, all the drugs

Then there’s the final step: medication. You can’t take medication to fix your collagen, or repair your autonomic dysfunction, but what you can do is take medication to raise your blood pressure. These generally fall into two categories: the first increases your blood volume by causing you to retain water, and the second encourages more vasoconstriction (given that your collagen is bad at it, but not necessarily non-functional).

I’ve opted for that second category. I instinctively shy away from the notion of retaining water on purpose. I have a uterus, I know what fluid retention feels like, and I want no fucking part of it, thank you very much (not that I have any evidence that it feels the same). I don’t deal with it well. However, that category of drugs does work very well for a lot of people. I just don’t want to add it to my slew of unrelated hormonal issues.

Where am I at?

How’s it working?

It’s working well. Really. It’s much easier for me to stay awake and upright. I can sit up at my  computer in the evening without wanting to just drag my laptop to bed. I don’t crash after intense workouts in the same way.

Combine this with my ADHD meds and… I’m starting to bear a dangerously close resemblance to a functional human being. None of these meds are magical. I still forget things, even though I have my ADHD meds, and get distracted; I still get really sad, even though I’m on Zoloft for depression; and I still get a bit lightheaded sometimes, even though I’m on vasoconstrictors (although I suspect that’s because they’ve worn off – a dose only lasts four hours, supposedly, and I’m pretty sure I don’t even get that long).

There’s so much more I could write about this. It’s an extremely complex condition and it touches on various aspects of my life, many of which I haven’t even listed or described here. Numerous pains and aches and weirdnesses (like that coat hanger pain that is very unpleasant and I always thought I’d just tensed my upper back and jaw too much) now have an explanation.

I no longer feel like a sooky lala for getting too cold or too hot when other people don’t, or for having sensitive teeth at the dentist, or for needing to lie down at short notice. I just take the assistance I need, and move on.

So. Here I am. ADHD, Crohn’s Disease, Hypermobility Syndrome: fully diagnosed and treatment in progress for all of them. Finally. It’s been a long fucking road.

But I think I can see the end of it.

Postscript: as a side note, while it’s not widely diagnosed or well understood, joint hypermobility is actually extremely common in the population, especially in women. If some of these symptoms sound familiar to you – and I’ll write another post with a few others that might pop up – it’s worth getting it checked out. At the bare minimum, you need a lying down vs. standing up blood pressure/heart rate test.

My Bullet Journal Has Literally Changed My Life

I heard the term “bullet journal” from friends on Twitter, and brushed it off as just one of those things that pops up that I’ll work out eventually. There’s a lot of terminology that just flows past me online.

Then I started watching the How To ADHD videos, and there was one on bullet journals, which made it sound like a good solution to a lot of my problems, listed below.

  1. I forget everything.
  2. I make multiple to-do lists in different places and forget they exist, including-
    1. Post-it notes on my desk at work (multiple)
    2. Post-it notes on my desk at home (multiple)
    3. Word documents on my laptop
    4. Reminder lists on my phone
    5. Entries in my calendar (with reminders)
  3. I can’t work out how long things take even when I try super hard and try to learn from past experience and try to add in a lot of extra time
  4. …so I overcommit and try to make myself do too much, leading to-
  5. Ludicrous stress from overscheduling, leading to-
  6. Collapsing from exhaustion and not getting stuff done

(we’ll set aside the fact that muscular fatigue and low blood pressure mean that me “collapsing from exhaustion” might take a bit less activity than for most people)

I’m constantly trying to make lists of shows I want to watch, books I want to read, music I want to check out, as well as more important stuff like “remember to catch up with [x] once in a while as they’re not part of your usual social crowd”.

So, I bought a nice notebook from Officeworks and got started.

Then I realised it wasn’t small enough to fit in my tiny adorable handbag (fits Kindle, phone, wallet, keys, pens, hairties, lip balm, tiny hand cream, 1x sheet of painkillers). So I went online and looked around for what I wanted and started over.

My bullet journal (a pocket Moleskine)

Filled with stickers and organisational goodness.

I think I’m finally settled in with the process, and here’s what I’ve learned:

  1. I like to make things pretty, but not too pretty

If you search online for bullet journalling pages and guides, you’ll find a lot of really intimidating and beautiful stuff. You’ll see graphic design and hand-drawn calligraphy and some stunning artistic visions. I’m actually pretty minimalist with my decorations as you can see, and making it pretty is entirely fucking optional. It turns out that I like to use washi tape, I like to put stickers in randomly, and I like different coloured pens and occasionally pencils, and that’s it. Most days are just rapid logs vs. journal notes, and that’s just hand-scribbled with black and blue pen.

If I felt the obligation to make it super pretty – if I turned it into a full-on hobby as some people do – I would never keep up with it. It would turn into work. It turns out that, in spite of my desire for things to be pretty and perfect (in which case I would also never actually fucking use it), I can kind of temporarily unhook that part of my brain and let myself be chaotic and semi-random and just drop colours in wherever I like.

A week on holiday

Tasks/notes on the left, reflections on the right. In my defense, I was writing this on an actual boat, hence the bodgy handwriting.

  1. This shit is soothing and mindful as fuck

The part where I let myself scribble and scrawl and paste stickers and washi tape and use different colours is… incredibly soothing. Sitting down to draw out my week planner puts me in a strange, almost meditative, state. I stop worrying and thinking about everything else, and I’m totally focused on what I’m doing. It’s lovely. And again, if I were worrying too much about perfection, it would ruin it for me.

  1. Organised lists are THE BOMB

At first, I found that brain-dumping into my bujo was incredibly soothing. Knowing I could just jot down whatever it was, either on a to-do list or a random page I’d nominated “Books I want to read”, meant that a huge weight fell off me. I have the app on my phone, so that even if I’m just walking around, I can quickly pull it out, brain-dump whatever it is, and transfer it to the appropriate spot in my bujo later. As an ADHD person whose brain never fucking shuts up (although the meds are helping), this is an extraordinary boon.

My packing list for dive guiding

As you can see, I have only done two guided dives since I made this, and also I forgot that I needed fins until the second page.

  1. BUT I THINK OF SHIT I SHOULD DO ALL THE TIME

I quickly ran into a problem where I would write down everything I could think of that needed doing on today’s date, and then panic trying to get it all done because somehow if I didn’t get it all done, I would “fail”. This is the perfectionist bastard part of my personality. So I started a new list, of “things that need to get done but not right now”, and I also started lists at the beginning of each week, being “things that should be done this week some time” – as well as the traditional monthly logs.

  1. Making peace with migration

I think this might have more to do with my new ADHD medication than the actual bujo process, but migration – moving tasks to the next day, the next month, or back to a different time scale – is literally built into the design, so that helps. Feeling like it’s somehow officially endorsed that you might not get all your shit done – or that some stuff doesn’t even need to be written down (like “make bed”) – is irrationally comforting. I’m slowly learning that it’s okay to not get everything on my list done.

  1. My daily to-do lists are getting shorter / more stuff is getting done

I’m learning to keep my daily logging lists shorter – partly because my bujo is a pocket notebook and it is filling up fast! – and my requirements for a day relatively low. It’s funny. For years I’ve known that I take on too much, but it took actually seeing it, visually, to get me to work out how to solve the problem. And I am getting there.

But even when the list is long, a lot of that stuff is… really easy. Things like “make appointment”, which I would put off because I hate using the phone, will only take me a couple of minutes, and since I have a rampant addiction to dopamine (delivered by ticking things off my list) which outweighs my aversion to phone calls, I just get it done.

  1. Habit trackers are freaking amazing

So. This one is almost the best part. It took me a couple of tries to find a format I liked, but… wow. It’s effective. Particularly as there are things that I should do that I forget. For example: Amos needs antihistamines every day, as he has atopic allergies. A habit entitled “Amos pills” helps keep me on track. I also use one for flossing and I swear to god I have flossed every day for the past three weeks even while on holiday. I have a lot of things I track this way: Sunlamp (only in the Dark Months), Supplements, Keto, Exercise.

Habit tracker and Week List

Look at all that flossing. SO MUCH FLOSSING.

I even track “shower”, not because it’s something I think I should do every day, but because I actually lose track very easily since I don’t shower more than 2-3 times a week. Showering is exhausting for me because of the whole hypermobility/low blood pressure issue, and I hate it, to be honest, but I love being clean. I shower after cardio, after diving, after swimming and when I feel really gross. That’s it.

Reminding myself to scoop out the kitty litter every day – that’s another thing that I can easily forget – to the point the Mustrum Ridcully gets irritable and starts defecating in the bathtub overnight.

Mustrum Ridcully Naps in the Cat Hut

Would this cat ever do something so heinous as take a crap in a bathtub when the litter is not pristine? Surely not.

This has made an actual, profound difference in my life, since most of these things don’t take much effort and it’s important that I do them (or at least keep an eye on them: I also have “booze” and “painkillers”).

  1. I actually need two bullet journals

Because I use a titchy notebook, it fills up very fast. Really, I need two of them (two will still fit in my adorable tiny handbag): one for the actual journaling and planning, and one for all my other notes and lists. I’ve filled 145 pages of a 192 page notebook in under two months. I make a lot of lists.

To give you an idea, here are some of my lists:

  • TV shows I haven’t finished that I should watch
  • Movies I want to see
  • Authors I need more of
  • Things to pack for dive guiding
  • Packing list for holiday
  • Blog post ideas (yeah, that’s longer than you might think)
  • Things that need doing but not urgently
  • Fun stuff I could do when I’m at a loose end (because I have trouble thinking of what to do)
  • Computer games I want to play
  • An actual budget
  • Singers and music to check out
  • Physical books I want (as opposed to ebooks)
  • Addresses and phone numbers for all my doctors and specialists
  • Stories in progress
  • Ravenclaw vs. Slytherin (um. Michael and I making fun of each other every time we did something silly when we were on holiday, and Slytherin lost 50 points when Michael broke the tap in our resort room… twice… after I told him how he’d done it and not to do it again… right after as in literal seconds).
  • Scoring for awards that I have judged
  • Notes for stories
  • Blogs and YouTubes I’m interested in
  • Albums I own but should listen to more
  • Things I can do when the power is out (item one is “drive somewhere else”)
  • Notes for stories I’m writing or planning to write (separate page/spread per story) – can’t get too in-depth here, this is just for scribbling thoughts I have when I’m out and about.
  • People I haven’t seen in ages that I should get in touch with

This might give you some idea. This, along with actual phrases for stories and blog posts, is the kind of thing that constantly pops up in my head while I’m going about my day. There’s probably a heavier emphasis on “things I need to do” (like “crap, we should really weatherproof the house” and “wow, the mailbox is extremely gross, I should clean it”) than the other lists.

And the fact that I have built an Index in the front of the bullet journal (one of the key components of a bullet journal) means that I can actually find those lists when I need them. If I decide that one page isn’t enough, I can just pick another blank page in my journal and continue the list. Then I just add the new page number to my index, and I know that list exists on page 46 and page 95 (just for example).

In Conclusion

My bullet journal is a relatively low maintenance way of keeping track of my life, and it allows me a lot more freedom than traditional diaries and planners. I have used those extensively, but they don’t allow enough space for those daily lists and monthly tasks, and they don’t have the option for me to restructure how I’m managing my plans and schedules as I go. If the way I draw out a weekly planner doesn’t work for me, I could just draw out a different one next week, for example. I’ve already fine-tuned how I manage my monthly layout.

Basically, the diaries get very messy, very fast, and they became almost impossible for me to navigate. This way, I have my daily, weekly and monthly lists, and I can populate the small ones from the big ones, and reprioritise as needed. Over time I start to learn how much I can reasonably do in a day, and at the end of the day, if I feel like I haven’t done anything, I can look at my bullet journal and remind myself that I went to the gym, went to a long specialist appointment an hour’s drive away, visited a friend I don’t get to see often, replied to three emails I needed to deal with, scheduled an appointment, and made cookies.

And then I can see that I’m not lazy, just because I didn’t manage everything.

Not lazy, just because commuting and medical shit and workouts take more time in reality than they do in my head.

Not lazy, just because now and then I prioritise my people highly.

Not lazy, just because by the time I got home my blood pressure was tanking, my ADHD meds had worn off, and I couldn’t think clearly enough to tackle the edits on my current novel.

I can use my habit tracker and a flick through my logs to see trends – to see that I usually do things, that I get things done, that I don’t procrastinate nearly as much as I think, to see that my energy levels are getting better as I respond to my medications, to see that I do exercise most days, and I’m not slacking off, to see that I’ve stayed keto for a week now-

So.

It helps me manage my time, and my life, and remember things, and it also helps to combat the negative aspects of my ADHD self-image (I’m unreliable, I’m flaky, I never do anything, I always put things off, etc. etc.).

It’s also fun, what with all the stickers and the coloured pens and the washi tape.

I’ll keep doing it for a while.

Holiday adventures: My First Whale Shark

Husband and I are in Thailand at the moment, decompressing and enjoying the tropical warmth and sun (from the shade. We’re a bit too pale to enjoy it more directly, especially my redheaded self). We just spent four days on a live-aboard diving tour of the Similan Islands (we went with Similan Diving Safaris and I recommend them without hesitation), and it’s hard to be back on land with no prospect of diving any time soon. Our resort isn’t really positioned for easy day trips.

Anyway, the important thing is that after twelve years of diving and about 270 trips beneath the surface, I’ve finally seen a whale shark. A little one.

Here’s the story of how that happened. I tried to keep it short, but you know me.

We did a spectacular dive on the Koh Tachai Plateau, and I was floored. It was breathtaking. Visibility for miles, clouds of hundreds and thousands of fish, so many species, so much to see that I didn’t even know what to write in my dive log when I got to it. We had a newish diver (about 15 dives, hadn’t dived in years, doing her advanced) and, as we all do at that point, she tended to gas out (erm, run out of air) pretty quickly. This meant that when she was ready to go up, I still had half a tank on a beautiful dive site.

That’s okay, the guide (Alex) had given me a spare SMB (surface marker buoy), and Michael and I are experienced enough divers that we could be left to our own devices. Unfortunately, Michael was having some nasty foot pain and wanted to quit so, sadly, I ascended with the group.

On the boat, I noticed that Alex was about to get back in. “Mini-dive,” he said, since he also still had nearly half a tank left (a bit less after ascent and safety stop). “Is that an option?” I asked. “Sure,” he replied.

I fished my dive computer out of the tub, unhooked the SMB and GoPro – it would be a short dive and I thought I wouldn’t need it – and we jumped back in for a short dive.

The site took my breath away again, and I followed Alex as we ambled around and explored, witnessed giant trevally hunting, and generally just had a grand time. I got down to my reserve (50bar), and let him know, so we began to head slowly back to the mooring line.

By the time we got there, I was at about… 35 bar? 30 maybe? My computer started counting down my stop, so I hooked my legs over the line (you can’t always do that, sometimes they’re covered in barnacles, but this was a clean one) and relaxed to admire the view.

The boss had brought his kids along, so I could watch them diving off the back of the boat and snorkelling (with the captain, who was also partial to a swim). The youngest boy waved at me, I waved back, feeling at peace with the world.

Then the call came out from the captain, who ducked down, pointed, and managed to shout underwater. I didn’t hear what he said, just the urgency of it, and both the guide and I swivelled our heads and turned. There were a few splashes over head as people grabbed snorkels and dropped in off the back.

I saw this distant, blurry shape. “It can’t be,” I thought. But it was! A whale shark came briefly into view – a mere glimpse, just for a minute, maybe less, and then disappeared. I figured that was it. The guide indicated he was going to go check it out, reserve be damned, and then the shark turned back towards us and swam directly towards me, where I hung, on the mooring line, now down to less than 30 bar in the tank, my safety stop timer having finished a little while ago.

It was just a baby, maybe 2.5m long at most, and a little shy. It came within maybe ten metres of us before turning sharply and sauntering back off into the blue.

The whole thing probably took less than five minutes, but I was high for the rest of the day.

ADHD meds: adventures in Vyvanse, part one

So, I have been on 30mg Vyvanse for a whole (checks diary) four days. I was diagnosed with ADHD on Wednesday, and today is Saturday. Probably I should wait a bit longer before I deliver the truth bombs, since my brain’s response will adapt, but everyone is keen to know the deal, and I do have stuff to say already, so here goes (I can update as this changes).

Vyvanse is a slow-release version of dexedrine. It has a lysine molecule attached to it which apparently slows metabolism and delays the overall release and processing of the drug. Instead of getting a four hour effect and having to take three doses a day (which is what I would have to do on dexies), it’s supposed to last for 12 hours.

The actual studies report that it kicks in two hours after taking it and lasts for 12 hours, so there is a reported consistent effect from 2 to 14 hours after ingestion.

The downside (because I like to finish on a high note)

I metabolise things quickly. I always have. Painkillers and other drugs with a noticeable effect kick in sooner and taper off more quickly than expected. I get about two hours relief, max, from painkillers that are supposed to last for four hours. Alcohol hits me hard, but on the upside, I sober up very quickly (to the point that it confuses people who are expecting me to still be drunk). I wouldn’t test this by, say, trying to drive, but my impulse control and ability to make decisions after I’ve done this rapid sobering up trick are… pretty solid (as long as I haven’t completely destroyed myself, which I haven’t done in a very long time, since I decided it actually wasn’t fun; and last time I did, it was by accident! Long story involving my neighbour making me Long Island Iced Teas and having trouble with the measuring…).

So, what does this mean for Vyvanse?

It means it kicks in at about 90 minutes and it seems to drop off at about 9-10 hours after I take it. Which means I’m getting 7-8 hours of effect. Seems good, right? I mean, why complain?

Except that when it wears off, I drop into an anxious jittery mess. I get anxiety that lasts for about half an hour, and then after that I’m all twitchy and ADHD and can’t focus and Twitter all the time and what were you saying and brain fog and fuuuuuck…

So one of the things that I want from treatment is the ability to actually relax in my downtime: that is, to sit down, to read, to watch TV, to be present in the moment with friends, husband and self. I’m unable to relax when I’m being ADHD and it’s been a problem for a long time. The other problem is that most of the writing I do is done in the evening. That’s my writing time, my sit-in-the-snuggery-with-the-cats time. So I really, really want those extra four hours of Vyvanse effect.

What’s the solution? Well, it turns out this isn’t an uncommon problem, and some people only get four hours out of Vyvanse and crash MUCH harder than I do (so far; like I said it’s early days). I suspect (for reasons mentioned below) that my starting dose is too low, which would be quite common as well; but increasing the dose won’t increase the duration. I could split my dose throughout the day (they’re capsules, so it would involve dissolving them in water and leaving them in the fridge, which is hard if I’m at work and get home late). Or, if my dose went up, I could take two of these a day, which would be easier (although would require phone reminders – that’s okay, that’s already my life). Or there’s the possibility if an instant release (IR) booster, like an actual dex pill, to take in the afternoon. Apparently there are things I can do which might increase duration: eat high fat meals for example (HELLO KETO except I’m not keto at the moment because I ran out of spoons due to insane life, long story, and can’t get back on it until mid-May due to travel).

Obviously, I can’t really do any of these things without consulting my specialist, and the appointment isn’t for six weeks. I’m considering emailing her office with a short list of questions about what I might do in the meantime, but otherwise, I just have to tough it out and deal with the fact that life is going to be unpleasant at about 5-7pm (depending on when I take my meds).

The other downside there is that the Vyvanse wears off at roughly the same time that my body is about to call it quits. I have (suspected, probable) Ehlers Danlos Syndrome which includes (definite, absolute) hypermobility, which means that my muscles work twice as hard as everyone else’s do just to hold me up, so after a day of being me, I’m wrecked (not also: autonomic dysfunction, low blood pressure). Even with good sleep. Even with eating right. Those things help, but my body just… is done. My joints just can’t even. So around that time, having the Vyvanse wears off is kind of like being knocked over with a brick. I would prefer to have those things occur at different times.

The upside: this stuff is so fucking good

Here’s the positive stuff: the meds definitely work. I’m able to make decisions without panicking that I’m not making the absolute best decision and going over and over my choices (we’re talking “what to have at a café for lunch”). I’m able to be on time for things (well, I’ve done it once, but I’ve only tried once so far, so watch this space). I’m able to plan my tasks more effectively and accept that I can’t do everything because I’m more aware of time. I do still get stuck in loops with Twitter and so on due to indecision and executive dysfunction – which is why I think my dose is too low – but part of my brain is aware of it and it’s easier to break out of it.

Concentration

I read a paper yesterday, in the car (we’re on a road trip right now). I cheated a bit. I picked a paper on a topic that I’m very interested in, and that I don’t have any imposter syndrome or anxiety about (crinoid taxonomy. I’m very comfortable with crinoid taxonomy, it’s my jam). But even though there was a podcast playing in the background, and I occasionally got distracted, I was able to get through it (and as a bonus, found one of my papers cited at the end! Which was very nice and gave me quite a thrill). And I did have to reread some bits, and I did skip the species descriptions (although that’s my personal bugbear: I don’t feel there’s a point reading species descriptions unless I have specimens right in front of me for comparison. They are necessary but very boring). But I finished. And it made sense.

I even downloaded another paper that was referenced out of interest and I’m not terrified of trying to read it.

Now, I’ll be honest – and this is another reason I think my dose is too low – it was exhausting, and afterwards I did feel like my brain had been through a shredder, and I needed to close my eyes and not focus for a while.

But I did it.

All the FEELINGS

Emotional dysregulation is a very common part of ADHD (and ASD, incidentally). It means we basically don’t have the same brakes and filters that everyone else does when it comes to feelings. I can be crushed by really very minor setbacks and my whole day is ruined. Now, I’ve been aware of this problem since at least high school (although “Katie, you’re so sensitive” was the song of childhood so… hm), and I’ve been developing coping strategies – conscious, decisive strategies – since early uni. I have a lot of “calm down, it’s okay” in my head, a lot of “take a break, think of something else, remind yourself this isn’t a big deal” voices. There’s a lot of effort, actual tiring effort, that goes into presenting myself as a calm person who’s not upset by every tiny little thing.

Part of this was because I’d never get through a day if I kept thinking “I can’t believe I missed the tram, that’s so fucked up, I’m such a loser” before I even got to my chemistry prac (literally the day that I started consciously practicing this “mental redirection” stuff).

Another part is that if I actually lost my temper the way my brain wants me to? I’d have no friends. So there’s a lot of “[x] means well and is my friend and loves me and doesn’t mean to hurt me and doesn’t know that behaviour sets me off” and “[x] will see things that way because their life has been different to mine and their feelings are valid, it makes sense, don’t get angry”.

Now, these strategies don’t work for genuine panic attacks and flashbacks due to trauma and abuse, which I have, and it’s important to separate those things I can’t control from things I can mediate. But they’re super effective strategies for normal, day-to-day life.

Here’s the thing: they’re hard. They’re so deeply ingrained in me now that they’re almost instinctive. But they’re hard, and they’re tiring. I’m constantly talking myself down from an emotional cliff.

…which by the way is also exhausting because of my (suspected) autism situation, where emotions are difficult to access and you feel them before you even are aware of them and you can’t articulate them (and cards on the table, I’m fucking articulate). So I have to play this weird double bluff game where I have to manage feelings I’m not always aware of but I know something’s up.

And on Vyvanse, I don’t need them. I mean, I still do, but nowhere near as much. Nowhere near. And it is… so good, and so relaxing, to not be constantly calming myself from a state of intensity. I can just experience a setback or a disappointment and think “Ah well, bummer,” and move on without getting obsessive about it, or artificially forcing myself to move on by (sometimes) completely suppressing that feeling.

So. That’s a win.

Fine motor control

Something I learned from combing the primary research literature (I am what I am, dammit) is that ADHDers often have quite poor fine motor control. Dopamine is useful for motor control and we don’t have enough of it. I spend a lot of time getting very frustrated because I drop things and can’t do minor stuff like get things out of my bag without consciously thinking about how my fingers and arms should move, or stuff goes everywhere. It’s really frustrating. Confounding factor: ASD people often also have this problem, and Ehlers-Danlos makes proprioception (body awareness) really hard as well.

On Vyvanse, so far, my fine motor control is improved. I make a lot less typos when it’s in effect. That would be a measurable test. I can manipulate objects with greater ease. And, thanks to the emotional effect, when I do mess up, I don’t get nearly so frustrated.

Maybe I should take up knitting.

Less anxiety

So: as my specialist explained to me, anxiety makes ADHD worse, and ADHD makes anxiety worse, and the whole thing is a horrible feedback loop. One of the long term goals with the medication is to break that feedback loop and to ease some of that long term anxiety (the aspects of it that aren’t hard-wired or due to other causes, that is).

I have a lot of anxiety about getting things done, forgetting things, being on time, letting people down, etc. And on Vyvanse, I’m a lot calmer. I can focus. I’m clear-headed. That much-anticipated quiet in my head is really there. It’s not 100%. As I said, I think my dose is too low. I still get a lot of soap bubbles, and some of them pop before I can get to them, but I don’t feel the same urgency to get to all of them as quickly as possible.

I can manage my life and not freak out about how I’m failing to manage my life.

Conclusion

In conclusion: the meds are great. They help. They don’t make me high. They make me a lot more functional. But there are some problems: the crash is unpleasant, they don’t last long enough, and I think the dose is too low. Still, those problems can be resolved or mediated without too much trouble, and I’m optimistic.

Watch this space.

ADHD and other letters

This is a long story, and some parts of it are really hard to write about. It’s got a pretty good ending (or beginning, strike up the cellos, etc.), so while that’s a spoiler it’s probably worth sticking through it for that. I try to stay factual, but it get personal. Maybe it’ll help other people have epiphanies, who knows?

It starts with some other letters: ASD.

A couple of years ago now, I tied together a bunch of scattered clues and, with a sinking feeling – and then a hopeful feeling – I began to piece together a story of self-diagnosis. I read widely. I tried to stay skeptical. But the pieces fit: the sensory bullshit, the executive dysfunction, the difficulty reading people and emoting, and a long, long list of other stuff which is beyond the scope of this post. It all landed in a giant messy heap that said “By the way, Kate, it’s possible you make your home on the autism spectrum.”

It was useful, and a weight off my shoulders, because now that I knew what the problem was, I could work around it instead of beating my head against a wall trying to be like everyone else and feeling like a horrible failure when I just… wasn’t. I wasn’t just going to grow out of social anxiety or my difficulty task-switching or my reactions to food textures or wool clothing or bright lights or loud noises, much in the same way that I wasn’t going to suddenly sprout wings and fly.

So I put together some strategies, strategies that would help me cope with what I now accepted as a physical reality rather than a personal failing. I did a bunch of research. And I felt at home with this. I didn’t feel the need to go any further with it.

I bounced off the idea that ASD and ADHD are often confused with one another, and also the fact that they’re frequently found together in the same person. Didn’t apply to me. I was a good student, after all. I studied hard. I have a PhD, fer cryin’ out loud. I followed the rules. ADHD didn’t apply to me.

(so… turns out there are some very common misconceptions about ADHD and I had them)

Meanwhile, I continued to suck at time management. To horrible, nauseating levels. I would make endless lists. I would back calculate from my time of arrival. I would allow an extra ten minute – fifteen minutes – half an hour – and still, I would be late for everything. I would consistently and forever fail to understand how long things take, even if they were things I did all the time. Every time I apologised for being late, I felt lower and lower. More and more hopeless. More and more disgusted with myself. Why can’t I get this one thing right? It’s not that I don’t care. I started to lose faith that it would ever get better. I started to feel that my apologies were worthless, because I couldn’t change this. I’ve never been late for a club dive, but that requires Herculean mental effort and it’s exhausting.

(side note: if you’re a person who thinks that people who are consistently late don’t care, please, knock that shit off. There are some pretty solid neurological reasons that people can try and try and try and still fail at that, and it doesn’t mean they’re blowing you off. I understand it’s frustrating. Waiting around is awful. Being made to feel like your time doesn’t matter is really, really awful. You absolutely get to decide if it’s a deal breaker. But just don’t think it’s because someone doesn’t care. Just because it’s easy for you doesn’t mean it’s easy for everyone else)

I would make these long to-do lists for my days at home and drive myself to exhaustion trying to get everything crossed off, and still feel at the end of the day that I hadn’t done enough. I would crash and just take a one hour break to do something that wasn’t work or an errand or a household task and…

…time…

time is unlimited and doesn’t pass if I’m not paying attention to it

in my mind it’s still the last time it was when I looked at the clock

if I don’t look at the clock it’s still five minutes ago

it doesn’t pass

oh shit

a whole bunch of it just passed while I wasn’t watching

while I was reading

while I was playing a game

while I was trying to relax and calm down

I don’t have enough of it, I can’t afford to have it just disappear like that.

And now I can’t relax, because time will disappear. I can’t trust it.

Slippery motherfucker.

I was reading a forum where this issue of being on time was discussed (actually, it was Captain Awkward), and a bunch of people piped up that yeah, that’s something that a lot of people with ADHD struggle with, and even setting a bunch of reminders doesn’t work (I set two reminders on my phone for every appointment).

Oh, I thought. That’s… interesting.

But no. Not me. That would just be an excuse. I have enough diagnoses, right? I have Crohn’s Disease and Ehler’s Danlos Syndrome (suspected), I’ve had endometriosis, I have major depressive disorder and seasonal affective disorder and I’m almost certainly autistic. I’m just looking for an excuse.

I can’t have ADHD.

But that’s… interesting.

Work days, days which were stressful due to commuting and the sheer panic of being around people all the time (because even when I like people, I’m still pretty sure I’m ASD), were kind of a relief. Because being at work was a break from my at-home list of do all the things right now as soon as you think of them because you’ll forget

you’ll forget

you’ve forgotten already

what

what was I thinking

just now, it was important, I know it

it’s gone

I will sit down on my bed in the morning, one shoe on my foot, glaring at nothing, waiting for that thought to come back, in case it’s like a cyclist in a velodrome and it’s going to be back on another circuit any minute now, when in reality thoughts are like soap bubbles and my brain is a giant foamy bathtub.

Sometimes they come back.

Mostly they just pop.

I started bullet journaling recently. I thought it might be a good way to get on top of my time management and my forgetting and all that jazz, especially as it’s recommended for ADHD people and I was beginning to suspect. The plan was that when I had a thought of something I needed to do or get on top of, I’d write it down.

I can’t describe the relief that I felt when I first started doing this. The relief that I’d written it down, and that all the things I wrote down were all in the same place, and I could find them again, and it was under control. The stress drained out of me.

But I learned something.

I learned that I think of things all the damn time. It never stops. My brain never shuts up. I reach for my bullet journal every five minutes until my daily to do list covers multiple pages and I’m desperately trying to make sure I get everything done because if I don’t I’ll fail again. Those soap bubbles just form and form and form and they don’t stop. They pop. Constantly.

It’s loud in here. I can’t think. I can’t sit still.

I have a lot of ideas. That’s great.

I can’t focus on any of them.

The lists help.

Then they overwhelm me.

I can – barely – watch a 22 minute show on Netflix. I can’t watch a 30 minute show made for Netflix that doesn’t need those eight minutes for ad breaks. I twitch. I check my phone. Constantly. I pause to see how much time is remaining. I get distracted. I check my phone again. Do I need to put the laundry away? Shit. What just happened on the show? I missed it.

I can’t watch movies, not by myself. I can’t watch TV shows longer than 20 minutes- not any more. It’s different if I have company, someone else to ground me. Sometimes I can do cross-stitch and that helps. Cross stitch can get me into a kind of pseudo hyperfocus. I can’t sit still.

I try. I used to be able to sit for one hour lectures. Mind you, I took a lot of notes. That kept me going. There was physical feedback and information and the rush of learning. That I could do. That I’m good at.

I’m really good at it, and being good at something is enough of a rush and reward to get me through it.

But I can’t get through a session in a conference. Shift. Move. Twitch. Fidget. My postural muscles suck, I’m hypermobile, but it’s not just that. My brain skims out. Wanders. I bring it back. I bring it back. I can’t focus. I take notes I know I’ll never read, just to try and keep my mind on track.

I can’t think.

I have to leave. Every couple of talks I just have to discreetly leave the room and walk around, sit down, because my brain has filled up with white noise and it has an almost physical weight and I’m exhausted from sitting still and focusing. I feel sick with it.

I can hyperfocus with writing. Sometimes. If it’s going well.

But more often: the slightest distraction and… it’s gone.

“I’m sorry, I missed that?”

I zone out in conversations all the time. In meetings. It’s normal for me. I’m constantly correcting, bringing my mind back into place, politely asking people to repeat themselves if I can get away with it, because everything they said just faded to white noise. Background to the noise in my head.

It’s not that I don’t care. It’s not that I’m not interested. I just get… distracted.

I’m a scientist. That’s my job. That’s my bread and butter. That’s what I do.

I can’t read a paper all the way through.

I haven’t read a paper all the way through in 12 years.

Do you know how humiliating that is to admit, for a working scientist?

The key issue is all the way through. I have strategies for coping, for making sure I get the relevant information, making sure I can still critically address the paper, but it’s difficult. It’s hard. It’s exhausting. I need to put my head down after a couple of pages. I feel literally nauseated. It’s like forcing my brain through a cheese grater. Exceptions are papers I review, because then I have a physical task: critique and write notes. But reading a paper just to absorb the information?

Colleagues send me papers to read, with cheery comments: “hey, this will be of interest to you!” and I just want to cry. Because I can’t. I can’t. I’ll sit down. I’ll get a cup of coffee, maybe a snack, and I’ll get comfy. Pick the right music, maybe that’s it. Maybe that’s what will make the difference. I had enough sleep last night. I can do this.

And I will try to force my brain into it.

The general low quality of scientific writing as a form of readable communication does not help. Well-written, eloquent work will be easier. But it’s still a slog. The fact that we have to write scientific papers as dispassionately as possible, and the fact that the methods section will always be dry because that is how it’s supposed to be and that’s a good thing and- I can’t read it.

And I can’t do it. My brain won’t sit. It will take in three sentences. GOSH THOSE WERE SOME SENTENCES. THAT WAS GOOD. LET’S GO DO SOMETHING ELSE. No, read the next sentence. WHAT WAS THAT FIRST SENTENCE AGAIN? I LIKED THAT ONE. LET’S READ THAT ONE AGAIN. No. Next sentence. LET’S SKIP TO THE RESULTS. DO WE EVEN HAVE TO DO THIS. YOU’RE OUT OF COFFEE. SHOULD YOU GET MORE COFFEE? DID YOU LOCK THE DOOR THIS MORNING? DID YOU REMEMBER TO ASK YOUR BOSS ABOUT THAT THING? HEY, YOU SHOULD MESSAGE YOUR FRIEND ABOUT LUNCH. NOW. BEFORE YOU FORGET.

WAIT.

YOU KNOW WHAT. I WANT TO KNOW HOW FITBITS HANDLE SLEEPWALKING. DOES IT KNOW YOU’RE ASLEEP?

WAIT.

WHAT WAS THAT FIRST SENTENCE AGAIN.

Let me tell you, I skim. I am pro at skimming. I’m very good at scanning paragraphs and picking up the words I need. The depth and the detail and the discourse? I miss those. I need conferences to get those.

And I keep sitting down with these papers. Maybe if I take notes. Or highlight things.

I can do this, I say, but I just. Can’t.

And I just want to throw up. Or cry. Or both. Because I’m not stupid, and I’m not lazy, and I’m good at this shit, but I can’t do it. And I feel both very stupid and very lazy.

And I go back to the drawing board and try to find another way.

Colleague on voyage: “I was up reading papers last night.”

Me: “ah, my sympathies.”

Colleague: “oh no, well, you know, reading papers can be fun though.”

I want to punch him.

Everyone on this voyage is working on their science. They’re reading papers and writing them. I feel like a fraud. I open up my paper draft, and I feel genuinely nauseated and I want to cry. Everyone else can do this. I’m smart. I have a PhD. Why can’t I do this?

Fuck this, I’ve got a few more episodes of The Flash to get through.

I can’t even read epic fantasy novels any more. The payoff is too slow. I can’t focus. This shit is getting worse, not better.

It turns out that’s a pattern. It turns out women with ADHD actually often hold it together pretty well – through school, sometimes through uni if they have a lot of structure – and then somewhere in their mid-20s or mid-30s, they crack. It falls apart. That’s when routine changes, when life gets less structured, and also when hormone levels change (that’s a factor). It’s not true for everyone, of course. Some get diagnosed early, in childhood. But mostly, in kids, people are still looking for a loud disruptive boy, and not a daydreaming girl with a wandering mind who – it turns out – can do very, very well at school without having to study, or concentrate, and so who slips under the radar.

No-one would think there’s anything going on there. She gets straight A+s, she behaves in class, she’s polite. Some social problems, but ah well, that happens, doesn’t it? Smart kids, and she’s a bit chubby and bossy, so she’ll have problems. But ADHD? ASD? No.

In her own way, she becomes invisible.

For a long time.

Until she’s 36.

ADHD is profoundly genetic. This does not surprise me in the least.

We tell stories in a very particular way in my family.

It gets convoluted, and dramatic, but it’s very entertaining. If you want an interesting, loud, overwhelming evening of entertainment, come to dinner with my brother, my father, and myself. You will not get a word in edgewise. You will hear some weird shit.

But I promise: you will not get bored.

I had my specialist appointment today. I was nervous about it. I’ve been anticipating and dreading it for months, because what if I don’t have ADHD, and I really am just lazy and don’t know how to focus? I’ve tried so many things, what can I possibly have missed, I try so fucking hard

I have ADHD. Yes. I really do. That’s why I keep trying and failing. I have Attention Deficit Hyperactivity Disorder and I don’t have enough dopamine in my brain and the whole system is just borked: poor executive function (ability to make decisions, organise, task switch), emotional dysregulation (I feel things super keenly and too much and I can’t watch sad movies or read sad books because it will destroy me and I’ll be miserable for days and it will actually affect my life, I am not joking or exaggerating), poor short-term memory, poor impulse control (BUY ALL THE THINGS), tendency to hyperactivity, and – as is in the name – difficulty focusing.

Specialist – very warm, approachable, super-competent – listened to me babble at full speed for 20 minutes (and if you don’t know me, my full speed babble is… amazing. It’s just a string of syllables but apparently it was coherent). She took notes. She asked questions. She gently brought me back on track when my mind wandered. She had me take a couple of questionnaires, even though she was fairly happy to diagnose me on my history, because my medical situation is complicated and there are some confounding factors.

I’m not sure if she diagnosed me on history or my 20 minutes of light-speed topic-jumping babble, to be honest, but no judgement if it was the latter.

And now I’m on medication.

And I’m not lazy. I’m not stupid. I have been trying. I don’t think meds are the be-all and end-all, or actually magic. I expect to have to still use coping strategies – but now I think they might actually work. I look forward to the possibility of watching a TV show by myself. Or sitting down to write and actually writing and not doing a hundred other things instead. Not reading papers, because that would be a miracle, although… a girl can dream.

Or maybe I could be on time for something. That’d be pretty sweet.

But what I want most of all is for my brain to shut up, because the noise is exhausting. I want to focus. I want to think.

In six weeks I’ll go see her again, and we’ll see how the meds are going, and then when the edge of it all is taken off, we’ll discuss other coping strategies, and talk about how to assess me for ASD now that the confounding factors of ADHD symptoms might be a bit less… confounding.

In the meantime, I feel vindicated, relieved, and embarrassed. I have a lot of labels now, and a lot of diagnoses, and it feels like a bit much to get my head around, but mostly what this means is I can try and cut myself some slack; because it turns out this shit isn’t my fault. I can relax a bit.

Well, I can try. We’ll see how we go.

And I know there are people out there who will think that taking meds is the “easy answer”. Maybe it is. Maybe there are other tactics I could use. But fucking hey: I feel like I’m fucking entitled to a few easy answers at this point.