Awakening to Fatigue

Motivation is hard to find when tiredness binds

This is a short, emotive personal piece about the author’s daily struggle with fatigue. It was originally published on Medium.

by John Urquhart

I remember a time when I could do without sleep quite readily in some ways. I’d have the usual cognitive deficits of course; in a nearly drunk little funk, ambling amiably about in a diminished dwaible instead of a deliciously awake and alert dance.

But honestly the difference often felt paper thin at best. Perhaps I’m just always a dork — or perhaps I just didn’t use to have to also contend with the crushing weight of fatigue.

It’s not yet clear what causes my fatigue; it could be the year-round allergic rhinitis, which gives rise to occasional bouts of sinus infection. Those cause fatigue. In theory, so can the antihistamine medication that mostly controls those flare ups. And my new GP has finally begun the process of figuring out whether, as suspected for years now, I may have fibromyalgia.

That fibro is diagnosed more frequently in women is an intrigue that does not escape me, given my quietly suppressed lifelong inner gender ambiguity.

Sometimes my day starts quite well. I think that’s the easiest to handle. When the tiredness comes — usually about five hours after I wake up — it’s easy to just pretend that I’ve had an extra busy day somehow. When that’s a lie it’s a little awkward, but it’s management of the dysphoric impact of exhaustion; for me, the sense that others get more energy to do more things can be keen and lead to more fatigue by way of bouts of anhedonia of varying depth.

Anhedonia, for those who found the word unfamiliar, is an inability to experience joy or beauty. Dysphoria is best described for me as an abiding, often non-specific, but easily attaching disquiet, dissatisfaction, or sorrow. Both can bring on fatigue themselves, or at least a malaise of motivation.

When the day starts in pain and deep fatigue, that is when it is hard to find purpose. What motivation is there for a day doomed to quiet failures? To a sequence of usually easily avoided pitfalls? A day when writing will be a struggle, a terrible frustration of inability to successfully wind through the maze of readability in the hope of meeting you, dearest reader, at an Exit to my mind.

And here is how that fatigue feels:

A mind of fog, but with the same certainty and sense of sharpness. So: at once, muddiness and clarity. Memory problems are a natural consequence; I will believe I’ve noted the location of an item but I really haven’t, or I have noted a previous location. The one before the current one.

Which is useless.

Sometimes I can’t even a word, no matter how it feels like it’s right there, on the tip of my tongue, or waiting to flow down my fingers into the screen.

The cold is colder, but heat is impossible to be rid of and makes me itch. And then there’s just the physical muscular despair. The sense that movement is just impossible, a sense that only partially dissipates when thoroughly disproved by virtue of actually moving. But all movement is somehow slower, too. And — worse — adds to the sense of inevitable sleep.

But it’s very hard to fall asleep while I’m in a trough of fatigue. I have to surface a little first…

So. Here we are, perhaps.

My day is hard. I wrote this to say so.

Welcome, maybe, Reader, to the Entrance to my maze.

Today I woke up energised, but wrote this as I faded.

I wish you the energy I don’t have.

Chronic Pain: Not Very Invisible

People often say chronic pain is an invisible disability. It’s because you don’t want to look

This article was originally published on Medium.

by John Urquhart

Living with chronic pain is as anyone will tell you… painful.

Oftentimes it’s not, though, as painful as you might think when you hear phrases like “I hurt every day of the week” or “I have been in pain since I was 6 years old.” For one thing, you build tolerance to pain over time. Your pain threshold, as it were, escalates. But this is not really the whole story; it’s not like the pain just magically goes away if you experience it long enough.

The pain is still there. It just transmutes.

It can become ill health. It can become fatigue. It can become a strange, muddy sort of slowness of the mind; a drunkenness without the dancing.

Although, because humans are resilient and rebellious, sometimes it is very much the drunkenness with the dancing too.

But, of course, having a very high pain threshold does not mean you do not feel pain, and when the threshold is breached — suddenly, by an unexpected event, say — all the pain comes alive at once. And what’s more, the fatigue, the grogginess, the sluggish leaden sense of not being quite present in any given moment doesn’t go away. It’s still there. But now there’s pain, too.

Anyone who has had a protracted toothache has probably experienced all of this, although they may or may not remember it particularly well; our brains don’t really want us to remember how hard life can be. It is important to the ongoing act of keeping us from dying.

So, back to that moment of “breach”. Why not give it a narrative?

I’m on the bus.

I’m holding the rail, standing, smiling vacantly because there’s not much else to do and people look at you on the bus. So you should smile, probably. (Social conditioning of this sort is more intense in the disabled, if you’re wondering; we frequently don’t want you to unexpectedly enter our physical space for reasons which will immediately become clear.) The bus is full, so I have to stand. There are two prams. I have no visible walking aids, so asking anyone to stand up is a confrontation I just don’t want.

We’re approaching a stop. The ding goes off; someone is getting off here. I’m not. I angle my feet to make sure there’s space, but I realise that this isn’t good enough. So I angle them more. My ankles are a bit more plastic than they should be, which means I can get them pretty far out. Like a weird duck.

I hold them this way as the person approaches. It doesn’t really hurt, but I know if I do it too long that it will.

But: here’s the rub. It’s better to risk it than risk being impacted by the passerby.

Except as they approach, I see they have a shopping bag. There’s just about enough time to sigh before a can of beans hits my knee. It’s a glancing blow: light. I know — although only because I’ve been told — that for anyone else, this is no big deal. It doesn’t hurt for most people. It might tingle at most for many.

For me, however, I’ve been smashed in the knee by a can of beans. It’s like being hit with a hammer. My knee feels like it’s going to buckle, and I’ve got my legs at funny angles to let this stranger go by, and now —

They’re looking at me really funny.

I realise I’m showing the pain and they have nearly, but not quite, spotted it. This kind of observation is not unusual for me because I am hypervigilant about other people’s faces; possibly a microexpression reader. I call it reading their topography. But that is another subject entirely.

In the moment, I curl some unknown inner fist tight and crunch it all down and dissociate.

It’s the only way, because if I keep showing the pain, the woman who is looking at me will see it. And if she sees it, I’ll see her recoil. She’ll feel aggressed against. She’ll think I hate her. She’ll hate me.

I smile at her. “Stopped a bit harsh there,” I hear myself jabber — probably I say it fairly normally, light-heartedly though. I’m harsh on myself in this state. She stares at me. It’s not really the right thing but it is filling the space as my knee throbs and all the other pain in my body slides out of slumber, so I put the joke in my tone instead of the words: “I nearly lost my balance there!” No blame on her.

It’s just about an exclamation. I convey my desperation for this entire thing to end with my eyes, I think. She sees it, but still doesn’t understand. She thinks I’m weird but she’s not scared. She smiles and laughs, shaking her head because she’s confused; but she’s put at ease by how light-hearted I’ve managed to seem as she bustles by me and off the bus. I see it, because I’m just someone who pays attention to people, constantly. Hypervigilance.

When I get off the bus, I’m shaking internally. The dissociation was intense. It isn’t good for me. It leads to panic attacks. And those are often worse than the pain — and often, the stress causes pain levels to increase.

But this is what happens when I don’t show it.

If I told you what happened when I did, you’d know why I turn my mental face away from the pain so sharply.

You’d know how I’d been conditioned by a society that treats me as something to be feared in every moment I needed care.

You’d know how every time, when I was a child, I expressed pain, people told me it was impossible or I was pretending and that I was a liar and therefore — not one of them. Bad people. Wrong people.

The reason I’m writing this article is because it’s not just me.

Many disabled people will, I think, at least feel some resonance with this sense of constant masking in public spaces.

I’ll leave the worst part to the last line, the real, full reason why:

Deliberately or not… because we already hurt, we don’t want you to hit us again.

Of Strikes & Humans

by John Urquhart

“The most potent weapon in the hands of the oppressor is the mind of the oppressed.” — Steven Biko

This story was originally published on the Rose Community Group blog. It is also found on Medium.

Strike action is often seen only at the very surface; in the media it is usually reported simply in the context of two sides snarlingly facing off against each other. Just a lot of demands, counter-demands, and arguments.

But this gladiatorial portrayal ignores a great deal that is important. Conflicts between co-workers, about who strikes, about who doesn’t, and about who has the privilege to be able to do so.

Whilst those going on strike are usually at least somewhat financially supported by their unions, not everyone is. This means not everyone can afford to support a strike by joining one, even if that strike is to their personal long-term benefit.

This does not always prevent people from participating, as they may borrow money, or have a strong social support network. But arguably the greatest long-term impact for everyone involved in a strike — especially the management — is psychosocial.

Strikers are, in effect, forced to stand “against” their colleagues (and maybe friends, or even relatives) who choose not to strike. Management must stand against people they may well later be expected to lead. Further, they may be expected to be physically responsible for those same “opponents” in the workplace, in terms of health and safety.

Yet management are not really even materially in control of the outcome of negotiations in many cases, as they are of course middle-persons for owners or investors — but from the perspective of those on strike action, rightly or wrongly, management are likely to be blamed for any breakdown in talks.

It’s easy to see how this can create significant toxicity in a workplace. It could damage friendships, or even significantly change career paths — or end them. And what’s more, just anticipation of workplace negativity can (as I’m sure we all know) be very stressful too. For some perhaps even more so than the actual event.

Some may ultimately strike because of peer pressure — some may fail to do so for the same reason. And some may have no choice because they simply can’t afford to make one. But plenty of people in and around the strike are not really making any choices, or are making choices from a real narrow selection.

They’re forced into those choices because of the underlying political or personal reasons for the strike action, because of financial concerns, or because of peer pressure.

These burdens are difficult for everyone. But they needn’t be.
As a community, as a society, we shouldn’t need to be in the same political tribes to be good to one another. I don’t need you to agree with me about any given issue of the day to hand you a plaster for that scrape on your knee; I’d hope you don’t need to agree with me to get me a glass of water should I be thirsty.

Likewise, I don’t feel it should really matter where we stand on a specific strike action — not when it comes being compassionate.

We can, whatever our tribes, still care for one another: by just turning up to be kind with words — or with deeds: perhaps by making nice treats or cooking up batches of soup, and heading down to the picket lines to make people feel that little bit easier and happier. Not because we necessarily agree, but because they’re human and we’re human, and no greater reason is needed to stand together.

The Toxicity Of Misgendering in the Trans Debate: Why It Has To Stop

by John Urquhart

“When we talk about war, we’re really talking about peace”

Originally published on Medium.

The argument brewing in the UK right now — one that has been fairly consistently thundering away across the Atlantic for quite some time — is based around just a few words.

Trans women are women.

This simple statement is meeting significant hostility from various elements; a range of people, in fact, from straight-up seemingly rather narrow-minded folk who see an opportunity to attack what they view as The Strange to those who believe they are shouting down the equivalent of Flat Earthers — but for sex.

However, only one side is “on the side of the angels” here, and it has nothing to do with facts for a change. Instead, what matters here is feelings. So I’m going to ignore the facts — even though I could quite easily lay out plenty to support TWAW.

Here’s the rub: this entire argument is actually rather irrelevant except to trans folk.

This also appears to be the case to the other side (IE that the argument is only of vital importance to women, because those women feel that they are “at risk”), but they are wrong.

I do not say this out of hostility — though in the interest of disclosure, I’m definitely hostile by now, as these people have repeatedly misgendered and insulted me in an effort to be Right— but instead out of compassion for those being harmed.

The very simple facts of the matter are this:

Trans people are being harmed today. Right now.

By this very conversation, in fact.

There will be young trans people who are seeing this discourse and will believe they are not allowed to exist at all; that society has no space for them; or, conversely, they will be lead to believe that they must bend themselves into shapes that do not work.

They will hear their parents arguing about people like Graham Linehan appearing on Newsnight and realise they can’t even feel safe in their own homes, because one or both of their parents don’t think they’re real.

This is deeply retrograde and, to be honest, horrifying. Please: take a step back.

Women are genuinely concerned about harm. Well, okay; I have sympathy for that. I too am a bit afraid of masculine-seeming things; that is closely tied up with my being non-binary. I don’t like when men are shouty, or overly in my space, or indulge in physical contact without warning or consent.

But what I don’t have sympathy for is prioritising a concern for harm in the future over actual ongoing harm right now.

Yes, some people lie. Yes, some people cannot be trusted. Yes, some people will go to any lengths to carry out the acts they desire, regardless of how those acts harm others. But, but, but —

Should we harm people just to stop other people from harming people? This is the same kind of strange logic George W Bush deployed when he said, “I just want you to know that, when we talk about war, we’re really talking about peace.”

The people who believe they are defending women — or themselves — are indeed defending women (or themselves), but in so doing they are waging a war on peace itself.

One solution to this is very simple, and it is quite akin to the solution that most Western society believes (incorrectly) that it has found with regards to racism — even though it hasn’t actually done so.

Surely it would not be difficult to say that trans women are women, in public, because that’s polite? If you want to believe they’re not, in private, then I guess fine — do that. Keep it to yourself. It’s your opinion, inside your own head, and it doesn’t directly harm anyone there. It could still harm people indirectly — but that’s up to you to moderate, it’s not ours or mine. I know and you know that you’re entitled to that — and nobody should be able to take it away. Indeed: nobody really can.

But if you take it out in public, know that it is an act of violence. Know that every act of violence could be someone’s last straw. Know you could kill someone with your urge to “be Right”.

You can still argue about how we square the fact that some people are terrified of anyone with a penis with the fact that some people with penises are also terrified of their penis — it is a very important subject. You can still, in fact, have any of the debates in question; about how we handle gender/sex and toilets, about how we handle sport, any of it. Just don’t misgender people. Don’t erase either trans people or intersex people. Don’t harm people in order to help yourself.

Finally: let’s out that big elephant in the room, shall we? Women’s bathrooms aren’t locked against all entry and there is no AI overwatch checking genitals at the doorways. Men can just walk in; they do not have to disguise themselves first. Fears are just that; fears. They are never more important than real living human people.