Chronic Vibes

Keeping it real since '83

[friedcupcakeprincess]

I just had brain MRI. Still high from the Xanax. Had act scan Thursday bc my brain felt like it was being crashed at hard neuro said to do. Apparently neuro said the rason for it was having to think to hard about walking and they were like .. is fine. I was hoping to check for chiari or some other things but my random walking issues ....

I fucking give up

Like thanks for the Xanax bar for my anxiety cause I'm gonna be raging I've this wears tf off... I have no words

[thisaliennerd]

chronic pain diagnoses are all like yeah we don't know what this is or why it happens. we also don't know how to treat it. good luck out there soldier

[myalgicencephalomyelitiscfstom]

Credit to themsbloke. A high-energy video that might require pacing! He has multiple sclerosis himself rather than ME/CFS.

Note that the F word is used.

[standfortheangels]

Transcripted version below, for anyone who'd rather read than watch:

(Themsbloke plays two characters in the video, so I've just labelled them A and B, for simplicity's sake)

A: Oh my fucking god. I've just realised something incredible. If you want to erase an illness, you don't deny it exists. You rename it.

I'll take a devastating neurological illness, one that collapses immune systems, starves muscles of oxygen, scrambles blood flow to the brain, and I'll give it a name that sounds like being a bit knackered.

B: You mean...

A: Chronic Fatigue Syndrome.

B: That's unforgivable.

A: Perfect, isn't it? Because now, when people lose the ability to stand, to speak clearly, to tolerate light, sound, touch, everyone will think they just need an early fucking night!

B: What does it actually do to them?

A: It destroys them. It turns effort into poison. It makes thinking feel like lifting concrete. It makes bodies crash so hard people can't feed themselves, they can't wash, they can't remember words! Some will lie in dark rooms for years.

B: Years?

A: Decades. Children will get it. Teenagers will lose their education. Adults will lose careers, independence, homes. I'll make exertion Actively dangerous, where one walk, one conversation, one shower can cause a multi-day systemic collapse.

B: That's sadistic.

A: I'll erase it from medical textbooks. I'll defund research. I'll tell patients to Exercise, even when exercise physically harms them!

B: So, this isn't fatigue?

A: ... What did you just fucking say to me?

B: ... This isn't fatigue?

A: No. Fatigue is a warning light. This is systemic collapse. Hmm? This is the body failing to recover from efforts! This is energy that does not replenish! Huh? This is a disease where Trying makes you Worse!!

B: Why hasn't this been taken seriously?

A: Because of the name. Because once you call it 'Fatigue', you give people permission to dismiss it. Doctors stop listening, government stop funding, friends stop believing, and patients stop trusting their own reality.

B: So the label matters.

A: The label is everything. Because when you misname suffering, you mistreat it, you mismanage it, you abandon the people inside it, and ME/CFS patients have been abandoned for generations.

B: So what are they fighting for now?

A: To be believed, to be studied, and to be named fucking correctly. Because ME/CFS is not tiredness, laziness, nor a fear of effort; It's a brutal, disabling, life-altering disease. And people are still disappearing, unheard, into dark rooms because we chose a comforting lie over an accurate truth.

B: So what should we call it?

A: Myalgic Encephalomyelitis. Say it properly.

B: *fumbles, not even getting past the first M*

A: Myalgic

B: Myalgic

A: En-ceph-a-lo...

B: Encephalo

A: My-e-li-tis

B: Myelitis.

A: Myalgic Encephalomyelitis.

B: Myalgic Encephalomyelitis.

A: Good. Right! Time to invent Brain Fog!

*end credits jingle from Looney Toons plays, complete with the "That's all, folks!" written on the screen*

[thememedaddy]

[friedcupcakeprincess]

I get my brain MRI next week. How appropriate to see this pop up. The tumbler gods are working.

[vintage-tigre]

[friedcupcakeprincess]

It's getting bad again. But then I'll be fine. Until I'm not.

[friedcupcakeprincess]

[friedcupcakeprincess]

Today he called me by my name today. My actual given name. It sounded so strange rolling off of his tongue that it took my brain a moment to process that it actually happened. He said it so effortlessly. How long as he thought of me as my name that it now comes naturally? Is this truly the beginning of the end?

[friedcupcakeprincess]

I'm freaking terrified of possibly having Addisons.

[anachr0nismm]

i love forgetting i'm a cripple constantly like "why do i feel dizzy and out of breath and super sore after making my bed?" girl you have the dizzy, out of breath, and sore disorder

[friedcupcakeprincess]

Pretty fucked up the only thing keeping me around is my dogs. Happy new year. Id rather be dead.

[friedcupcakeprincess]

I'm so tired of never knowing what the day will bring. This week has been all over the place. Had a migraine last 3 days. It was so bad on day 1, I left work crying with 4 hours left of my shift. I was feeling completely out of it. Depersonalization to a severe degree that I've never had before. That led to dissociation on the ten minute drive home. I honestly should have called my husband to come get me but all I could think about was going home. My blood pressure was high. 133/82.

Wednesday went back to work. Stabbing pain gone but the most beautiful sparkly aura I've ever seen was present, vision shifting so much it felt like an acid trip. Or at least rolling on extacy without the fun and still trying to do my job.

Thursday Thanksgiving. Didn't go to his boss's family's house which we've done since he started working there about 6 years ago. His call not mine. His boss has been stressed about whatever and taking it out on him which isn't right. We all know it has nothing to actually do with him but don't expect an apology any time soon. I was having a lot of pressure on my head and felt more like a bobble head than normal. Random stabby pains. At this point it's more annoying than anything.

Have no idea what that gif is about but it was so random I had to use it.

Friday rolls around. Almost no one at work. Call volume low. Still a lot of head pressure and increased heart rate from my baseline. A lot of squeezing pressure that went along with my heartbeat. By the end of shift I was feeling better. When I went home I suddenly had energy? Head normal? Wtf? Turned it into a music video karaoke session with my man while making chicken and dumplings.

It's been a long week y'all. This neurologist appointment can't come fast enough.

[friedcupcakeprincess]

Also made the connection that the ring finger twitches I get happen before I get a migraine.

[friedcupcakeprincess]

Fuck. My bio mom was diagnosed MS. apparently it can start with twitches in muscles and hands. I've gotten so use to internal tremors and twitches I almost forget about them but the finger thing is new. About 3 months.

[friedcupcakeprincess]

I'm so tired of never knowing what the day will bring. This week has been all over the place. Had a migraine last 3 days. It was so bad on day 1, I left work crying with 4 hours left of my shift. I was feeling completely out of it. Depersonalization to a severe degree that I've never had before. That led to dissociation on the ten minute drive home. I honestly should have called my husband to come get me but all I could think about was going home. My blood pressure was high. 133/82.

Wednesday went back to work. Stabbing pain gone but the most beautiful sparkly aura I've ever seen was present, vision shifting so much it felt like an acid trip. Or at least rolling on extacy without the fun and still trying to do my job.

Thursday Thanksgiving. Didn't go to his boss's family's house which we've done since he started working there about 6 years ago. His call not mine. His boss has been stressed about whatever and taking it out on him which isn't right. We all know it has nothing to actually do with him but don't expect an apology any time soon. I was having a lot of pressure on my head and felt more like a bobble head than normal. Random stabby pains. At this point it's more annoying than anything.

Have no idea what that gif is about but it was so random I had to use it.

Friday rolls around. Almost no one at work. Call volume low. Still a lot of head pressure and increased heart rate from my baseline. A lot of squeezing pressure that went along with my heartbeat. By the end of shift I was feeling better. When I went home I suddenly had energy? Head normal? Wtf? Turned it into a music video karaoke session with my man while making chicken and dumplings.

It's been a long week y'all. This neurologist appointment can't come fast enough.

[friedcupcakeprincess]

Also made the connection that the ring finger twitches I get happen before I get a migraine.

[friedcupcakeprincess]

I'm so tired of never knowing what the day will bring. This week has been all over the place. Had a migraine last 3 days. It was so bad on day 1, I left work crying with 4 hours left of my shift. I was feeling completely out of it. Depersonalization to a severe degree that I've never had before. That led to dissociation on the ten minute drive home. I honestly should have called my husband to come get me but all I could think about was going home. My blood pressure was high. 133/82.

Wednesday went back to work. Stabbing pain gone but the most beautiful sparkly aura I've ever seen was present, vision shifting so much it felt like an acid trip. Or at least rolling on extacy without the fun and still trying to do my job.

Thursday Thanksgiving. Didn't go to his boss's family's house which we've done since he started working there about 6 years ago. His call not mine. His boss has been stressed about whatever and taking it out on him which isn't right. We all know it has nothing to actually do with him but don't expect an apology any time soon. I was having a lot of pressure on my head and felt more like a bobble head than normal. Random stabby pains. At this point it's more annoying than anything.

Have no idea what that gif is about but it was so random I had to use it.

Friday rolls around. Almost no one at work. Call volume low. Still a lot of head pressure and increased heart rate from my baseline. A lot of squeezing pressure that went along with my heartbeat. By the end of shift I was feeling better. When I went home I suddenly had energy? Head normal? Wtf? Turned it into a music video karaoke session with my man while making chicken and dumplings.

It's been a long week y'all. This neurologist appointment can't come fast enough.

[diddollhouse]

i hate to break it to everyone but being disabled is often boring and not fun and not pretty. it’s missing out on things you want to do. it’s being excluded from things society and culture value. disability is often inconvenient, unlikable, gross, and annoying. that’s just how it is.

[friedcupcakeprincess]

I've been invited to go to the lake several times this year. Of course I don't go but my husband does as it's his boss that invites us. Last time I cried most of the day bc I'm so tired of being lonely

[friedcupcakeprincess]

[friedcupcakeprincess]

Yesterday bp was low and my heart rate was chilling in the 70s which has NEVER happened before. Today BP slightly higher yet heart rate sky high upon waking. This back and forth is exhausting

[friedcupcakeprincess]