Not laughing, but coping

Humor with dystonia

Dystonia is not remotely funny. It is painful, exhausting, relentless. I do not want others to laugh at me and anyone telling me to lighten up irritates me. This is serious stuff.

And yet the long timers with the condition seem to have found an amazing way to cope. Sometimes there is anger in it, or feistiness with war images. Sometimes there is humor, or at leasr graphic language that brings a smile of recognition. Down here in the trenches there are sometimes glimpses of light.

Here are some of the stories I have read, images I have heard about this condition, slang, typos, jokes from patients themselves and a few researchers. It makes me feel that this is such a great group, a smart group, a resilient group. So there’s that.

I look like a one-sided body builder, a tilted weight lifter

We should get together a football team with all these big tight muscles

It feels like a key is stuck in the back of my head and slowly being wound up

Doctor, this happens in the trap of my jaw.

My muscles click like bubble wrap

My muscles sound like popping corn

Before an electric storm my dystonia is worse. I’m a living barometer.

Doctor, the pain is near my wishbone

Doctor this happens in my next to wee finger

Doctor, I feel knackered

Doctor, my eye floaters freak me out.

It feels like my body is uncooked peas sizzling in a hot pan

It feels like the meat from the muscles around my traps is about to fall apart.

Meds exasperate my dystonia

My arms are spawning

My eye floaters are creepy, like the walls are crawling

My eye floaters are like dust is flying all over the place

My eye floaters make me think I have a bug inside my glasses

My head nods so much I look like a nodding dog

My shoulder girdle is unstable

My tingles feel like walking on ice

My tingling feels like bacon sizzling

Now I am doing the ballerina thing

When I eat, food falls on my shelf

When my muscles click it’s like I hear gunshots

I can barely read my own handwriting

I was turned down for disability because I couldn’t hold my hand to fill out the form

If I have to stop driving my sports car, it will be just one giant paper weight

It’s so hard to chew I was wondering if they make baby food in quart size

My husband pinned down my arm to massage my leg and my arm shot out and punched him in the face. At least he laughed

Sorry but it helps if I walk backwards or dance. Mind if I dance?

Sorry I fell. I gave up beer for Lent. and this vodka is killing me

I need a tonic for dystonics

These meds desturb me, I mean dysturb me.

 My eyes clamp shut apparently for anything so easy I could do it with my eyes closed

The doctor swithered back and forth about what treatment to give me

At least with covid masks nobody can see my face twist

Doctors should have a left tilt and a right tilt room plan so we can see them

He’s my ot 

I am getting used to talking to doctors and thinking “I notice you are not believing me”

I told the X ray tech I have a vocal disorder. She said that was OK, removed her covid mask and asked “Can you read lips?”  Uh, that’s not the point. Can you?

I want to learn about this condition and have googled myself to death

I want to fix this. I’m bent on a mission

The injections vary. Different pokes for different folks

We patients learn to suppress an eye roll when the doctor never heard of this condition

What matters is the doctor’s technique of injectionning

How odd that I don’t drink, just so that I can remember to take my painkiller

For this fundraiser, to simulate dystonia, Jason will push a wheelbarrow uphill

I feel like a puppet and someone else is controlling the strings

I ordered ice cream by sign language and the clerk responded by sign language

Our support group shares dyscoveries

I am thinking of changing my name to Eileen

He asked if I am a left looker or a right looker.

I may seem angry but I’m just bent out of shape.

My head is like a bent doll

When a group of us get together, neighbors may think it’s the apocalypse

My head feels like a ten pin bowling ball

I feel like I have been hit by a train

It feels like there is a G force pushing my neck sideways

My days go in cycles- good, better, bad

My story  is a twisted tale

Basically my body disses me – dystonia

Dystonia is a jerk

This condition has a twisted sense of humor

I’d rather skip this moving experience

My dystonia is up to new tricks

Well, moving on, which is not as easy as it sounds

It feels like I have a charley horse that does not go away

I stand like the tower of Pisa

I sound like a cartoon character on helium

I sound like a frog

I sound like the 3 stooges

I am croaky

There’s something I want to tell you but it pains me to say it

If sipping wine makes my voice recover, I have to plan public speaking between swigs

It is hard to discipline my teenagers when I can’t yell at them

Somehow it is easier if I speak falsetto, fake an accent or talk babytalk. However when I do that, people hang up on me

This is the condition I don’t talk about

When people think I have laryngitis, sometimes I just say yes

I have a dromedary walk

I have a robotic walk

I walk like a wonky donkey

I walk like the Tin Man

It feels like I am walking on a water bed

It feels like I am walking on shards of glass

It’ s like walking on hedgehogs

Now, walls are my friends

Was it an accident? Why no! I just like to bang my head against door jams.

One breakout group for the muscle convention was joint action

The patient has a sensory trick of elbows on table- the praying mantis position

The patient has a sensory trick of hat or fabric on head – a turban trick

The theme of this conference is ‘love your neuron’

This trick is one hand on head and other hand on hip- water carrier pose

I am not a drama queen. This is late on set dystonia

A big F YOU to dystonia

A day of self pity is OK now and then. Movement disorders should come with that warning

A soft collar for my neck is as useful to me as a chocolate teapot

At least with covid masks nobody can see my face twist

Before an electric storm my dystonia is worse. I’m a living barometer.

Hi punters!

I am myself becoming the crooked man who walked a crooked mile

I don’t usually post here. I’m typically just a lurker

I wasn’t looking for something to ruin my life but it seems to have found me

If I have to stop driving my sports car, it will be just one giant paper weight

If sipping wine makes my voice recover, I have to plan public speaking between swigs

I’ll see your unrelenting trap pain and raise you a trigeminal nerve migraine

It feels like a game is being played on me – twisting me till I beg for mercy

It feels like a railroad is being hammered into my neck

It feels like I have a toothache in my neck

My arms are spawning

My body feels like I’m a wrung -out towel

My head turns a hard left

My fear of going on moving stairs is escalating

They misunderstand what I say. My name is Alice but they mishear “Atlas”. I rather like Atlas

They said “All you have to do is show up and say a few words” but that’s the hardest part

This guy heard of my condition and said to me “Well it could be worse”. I answered “Yes, it probably will be”

When I tried to move, my legs just said nope.

When I try to turn my head, it feels like there’s a sharp knife in my neck

When my muscles click it’s like I hear gunshots

When I speak some people say I sound fine but have no idea how hard it is for me to get the sound out. It is like running a marathon

I describe it like an eye twitch in the vocal cords

I tell people it’s like a twitch that won’t go away

I tell people it’s like Parkinson’s of the vocal cords and the nerves are firing  the muscles at the wrong time

Talking with vocal cord dystonia is like trying to run a marathon with broken legs

I tell people it’s like a leg cramp that won’t go away

I tell people I have muscle spasms in my vocal cords

When you put your finger in a baby’s palm it by reflex closes its little hand around your finger. A doctor told me that is what my vocal cords are doing

Dystonia is like having a pinball in your body bouncing back and forth between the barricades

I just point to my neck and say “damage”

I show people my hand opening and closing and then show it just closed and suggest how it would be if I was unable to open it. I explain that my vocal cords are like that.

It is hard to look in the mirror at my bendy straw neck

This whole nightmare of  dystonia handed me my a*s

I  am so tired of being told it is in my head and playing psychiatrist ping pong

Neighbor called to me across the street. Since I used hand signals to answer, she now thinks I am deaf and she uses only sign language to talk to me.  Her friend beside her nudges her “‘Tell her..”

Voice activated devices do not always understand me. Sometimes they only listen if I  yell

Allow this dystonia, even welcome it.

It is hard to accept dystonia because I remember how effortless motion used to be

Pardon me – I am only swearing because I heard a person can endure pain longer if they swear

Dystonia has made me less afraid of being attacked by bears.

I have a new party trick – I can stand on my ankles

Who else gets to kick someone and say it was just a hyperactive reflex?

I guess my body anticipated the pandemic in one way. My neck was already in lockdown.

Do I have to ‘come out ‘as  disabled? Isn’t it my decision?

With my vocal cord dystonia I sound like the Godfather.

My scalp hurts like stinging bees

I call my doctor my Nero.

If others don’t respect me there comes a time when I just have to say “Screw you” and move on.

That guy has no idea how I am  feeling so he should shut up.

My body is twisted like a corkscrew.

I worry I am a one person freak show.

I was writhing around like the exorcist for weeks

One neurologist seems to think I was bitten by a unicorn- lol.

I love how little kids are so refreshingly curious about my condition without rejecting me.

I realize if I fall down it is OK to let others help me back up.

I am in awe watching how some people can talk in long sentences so effortlessly. Then they look at me and I realize I am staring.

Hi fellow Dystonians!

That doctor treats me like I’m an unreliable witness to my own condition. It feels like I’m supposed to feign ignorance to protect his ego.

I can tell I’ve had dystonia for a while since I’ve now worn through several hot water bottles as they thinned and leaked, and several heating pads have split and spilled rice.

My body hurts so much. I hadn’t planned on being this old this young. Ah well, parts of me are still young.

I have trouble speaking but can shout loud enough to rattle windows

Just because I carry dystonia well does not mean it’s easy

Dystonia is like always having one foot on the gas pedal and one foot on the brake at the same time

I feel like a wet tea towel being wrung out both directions

I feel like I have been hit by a hammer. I feel pressure all over my head.

My neck is rock hard on both sides

I can’t see ahead to walk unless I hold my chin with my hand

I have trouble sitting straight to get a haircut

With cervical dystonia we all have ‘tells’ like our gait and sometimes doctors can diagnose us that way

An admirer said, watching me cope  “I don’t know how you do it”.  I told him ‘ I didn’t get a choice”

This lady told me I sound like a frog. I told her I am just waiting for the right prince to kiss me.

He told me I can do anything I put my mind to. Well, no. Some things I literally can’t do. His words were just toxic positivity.

I empty my energy tank some days just by speaking

My whisper is a whisper within itself

I missed my flight and was trying to talk to the clerk but she heard my voice and just gave me ‘the look’. We all know what that’s like. I learned however that tears still work.

If I have something to say, I’m gonna say it even if I have to beat it out with a wooden spoon on the table

I don’t have much pain, just a few niggles here and there

I told a nurse I don’t want to talk much because of my voice. She said that was OK and she’d talk slowly to help.

I spoke to Alexa and it said “I detect that you are whispering. Would you like me to whisper back?”

My legs feel like there’s popcorn popping inside them

Do not confuse my bad days as a sign of weakness. Those are the days I am fighting the hardest

How strange. My voice is better if I have a cold or laryngitis

The clinic told me the side effect of the covid vaccine may be muscle stiffness. Ha. Like I would notice.

Ah my voice – When I was 30 the car mechanic on the phone called out to another mechanic” There’s an old lady here who wants to talk to you”.

My head jerks like a pigeon.

Someone  dared compare me with my flailing arms to a dancing inflatable tube balloon at car lots

Losing my voice was like losing my best friend

Next time I get a set of muscles I’m gonna gets ones that know when to hold ’em, know when to fold ’em.

My movements are delayed. I find it’s me waiting on me, hand and foot

How odd I now have the wisdom of age but am eating the pureed foods of a child.

My pain is an inner teacher and nagging friend, looking out for my best interests

I saw a mouse in the kitchen and screamed 5000 decibels. Now my voice is suddenly better.

Hearing an acquaintance mimicking my voice hurt the most of all. I no longer see that person.

After injections, I’m right as rain.

The checkout cashier thought I was deaf and started signing to me. I didn’t have the voice to tell her otherwise.

I’m on my fourth doctor

I am walking like I’m completely drunk

I miss the old days before dystonia

Losing my voice is like losing my best friend

My body is pretty much locked up

I was happy when he said he’d give me free shots of tequila for my voice but hurt when someone suggested motor oil

Some days a bobble head doll bobbles less than my head.

It’s not all bad. Though I have trouble chewing and can only eat soft food. I get to add sauce to everything. Cheese sauce, sweet and sour sauce, gravy, chocolate sauce. Jelly.  I am a sauce gourmet.

Oddly wearing a hat or scarf secures my head in a comforting way, sensory trick in disguise . It even felt good to have the CAT scan cushions around my head. How weird is that? Can I stay here a bit longer?