Confessions of a POT-head
I never asked to be one… never tried to be one. Yet here I am. It is affecting my brain, yet a I can’t stop it.
The internal torture involved is not something I discuss privately, let alone publicly, But then I read a piece on an online support group which made me realize that discussing it is the only way to make the scourge better known and understood.
Since that person described what it is like living with it so perfectly, I asked permission to use it in its entirely, rather than try and reach the same heights of elequence. It was nailed. No need to attempt replication.
The Battle of Fatigue
Living with OT means my body fights a battle most people never see. Just standing still can feel like climbing a hill that never ends. My legs tremble beneath me, my muscles work overtime to hold me upright, even for just a few seconds. What others do effortlessly, as in standing in line, cooking a meal, or chatting with a friend, takes every ounce of energy I have.
Fatigue isn’t just feeling tired. It’s a deep, bone-heavy exhaustion that touches every part of life. It doesn’t come just from the tremors themselves, but from the constant effort to seem fine, to smile through the shaking, to keep going even when my body is begging for rest.
The first battle is physical, against the relentless tremors that drain my strength. But the second battle is invisible, trying to explain to others why I’m so utterly worn out from things that look so simple. It’s the ache of being misunderstood, the quiet loneliness of knowing most will never truly grasp what this feels like.
And yet, in the middle of the struggle, there’s a quiet strength that somehow keeps me going. I’ve learned to lean on grace when my energy fades, to find peace in the still moments, and to believe that even on the hardest days, I’m not alone in this fight.
Every day is a balance between what my heart longs to do and what my body can manage. Fatigue may be with me constantly, but so is hope. Even when my legs tremble and my strength runs low, I remind myself, that this body may be weary, but my spirit is still standing strong.
The OT referred to here is Orthostatic Tremor. It is so rare that not even it’s discoverer could be bothered naming it after himself. The name is not so much the name of a condition or syndrome, but rather, the name of a symptom. Orthostatic simply means “standing”. If the symptom has no known cause, it is known as Primary Orthostatic Tremor (or POT for short).
I have had this condition for at least 8 years before I finally got a diagnosis. I’m not fully convinced in my case that it is not a symptom of something else but there is no real point in chasing that. I doubt I have another 8 years to find out, and even if I did find out, it would do me no good. There is no cure and no real effective treatment.
It is a neurological condition, yet many neurologists haven’t heard of it. There has been little study of it, and no development of specific treatments. We POT-heads are simply fed a steady diet of Benzos, which offer minimal relief, potentially catostrophic side effects, and more cash for Big Pharna.
Praise be for repurposed drugs.
I am not after sympathy, and especially not prayers (I’m an athiest for Chrisakes. Have some respect!). But there is a small worldwide army of us, largely suffering in silence, or being supported by a partner who has over time, come to get some understanding of it. If you’re lucky.
So if I get grumpy at times…
It has nothing to with this. It’s just me, okay?
What the author of the quoted piece really nailed is the invisiblity of it and trying to explain it to people. How do you explain to people that you literally can’t stand still? The tremors are at a rate of up to 18 per second, which makes them invisible to the naked eye. In fact, that is the main diagnostic test – leg tremors at a rate of between 13 and 18 per second in the standing position. It can – and with me – does also extent to upper body and arms at times. My brain is telling my legs that they can’t bear my weight (and no, I am not overweight). It is all happening below the surface of visibility. But you can feel them by placing a hand on the leg.
Classical Orthostatic Tremor chart. (A) A 14 Hz, highly synchronized tremor is present in the patient’s legs as the patient stands. (B) As the patient leans onto a chair, the tremor transfers to the left triceps. It remains in the legs, but its amplitude is reduced
There are limited ways to stop or ease the tremors. Lean on something (only helps for a little while). Keep walking. Sit down. That’s it. Those are the options. To shave, I have to lean on the vanity unit. To shower, I have to lean on the wall, to cook, I have to lean on the stove (which has then burned holes in about half of my shirts), doing any gardening is limited to a few minutes at a time, max.
As described in the quoted piece, between the tremors and the strain of staying upright, the leg muscles become so sore that walking itself, initially not an issue, starts to become one. And the fatigue that come with it is horendous. The simple act of putting out the garbage leaves me feeling like I have just run a marathon. I have usually two “nanna naps” a day. Not by choice. It is better described as simply losing consciousness and there is no fighting it. Sleep patterns are ruined. I sit up until the early hours of the morning and sleep for four to six hours after that. On some occasions longer.
Again, I’m not looking for sympathy. I know there are innumerable people in the world who have it far worse than I do. I have survived two major heart attacks and I will live with this as best I can. I have work to do, and I want desparately to finish it.
I’m just sick of feeling like a fraud because what is happening has no real visibility, and between that, and the sheer weirdness of NOT being able to stand in one spot for more than a couple of seconds is demorilizing. I mean, I listen to myself trying to explain to someone why I can’t stand and chat… and I am very conscious of how it must sound.
I think now it is my partner who suffers the most when we are out anywhere together. If there is a queue, I need to lean on her, or go and find a seat. If she runs into one of her friends, she knows she can’t stand there chatting, unless there is a seat for me somewhere nearby. If we are out doing anything at all that requires standing in one spot, or any lifting, or carrying, she has to do it.
So there it is. Some sunlight on my own personal elephant in the room.
If I did not research and write articles, books and songs, I would probably just wither away. This, and my family and friends make me want to hang around for as long as I can. And I don’t mind at all if me hanging around pisses some people off.
I enjoy what I do. I have hopes of getting the second edition of my book published by a mainstream publisher, and my songs have had radio play here in Australia, in New Zealand (thanks bros!) and in of all places, Brazil.
I still have a reason to get up each day, and for that I am grateful.
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