#chronic lyme

[neurosky]

Okay, question for other people who experience chronic pain:

Do you ever experience a type of pain that you literally cannot describe to someone who doesn't experience it?

Usually, the type of pain I get can't be compared to sore muscles or a stomach ache. It almost feels like the type of soreness you can get after a vaccine, or like my legs are swelling, but they're not?? And I've found that people who don't have chronic pain have no idea what I'm talking about 😭

#chronic illness #actually chronically ill #chronically ill #actually disabled #disabled #chronic pain #chronic lyme

[herbertthefrog]

Disability tumblr: How do you stay positive when you know it's getting bad? I'm getting so much worse and it feels like it is taking everything from me. My job, my relationship, my education, my friendships, my hobbies. It feels like everything is just falling away from me because I am too tired and in pain to spend time with anyone or do anything and my misery is rubbing off on everyone around me to the point it feels like everyone is just miserable interacting with me. I've really lost all hope and faith because nothing is working and no one is listening to me. Does anyone have any advice for some realistic positivity? What do you do to feel happy whilst being disabled? Any advice would be really helpful :) Thank you!

#fibromyalgia #chronically ill #chronic fatigue #cfs #chronic illness #post treatment lyme symptoms #chronic lyme #chronic pain #disability #disabled #karma post #vent

[mandana-the-service-pup]

Denying a patient the right to a diagnosis just bc the disorder you suspect they have doesn’t have a cure is ableist and abuse of power.

Patients have the right to know what is going on with their body. If you aren’t prepared to help them, there is an entire community who can provide them with the knowledge & skills you lack (symptom management, clinical trials, latest research, emotional support, list of specialists and treatment options, etc).

The least you can do is give them the diagnosis.

#tw healthcare #medical ptsd #ableism #ehlers danlos syndrome #ehlers danlos problems #dysautonomia #hashimotosthyroiditis #chronic lyme #disabled community #chronic illness community #disability awareness #accessibility matters #problematic doctors

[osddid-i-do-that]

Alright. I’m curious …

Choose your option and if you can, explain a bit in the notes what your understanding is/why you chose a certain option.

I’ll explain why I’m asking this once the poll is over. I don’t wanna affect results.

FULLY understand == someone explains to you what their symptoms are like, and you feel like you have a good understanding of why the person is behaving/doing/not doing/reacting the way they are. Basically: do you think you “get it”.

* Mentally ill folks without physical chronic illness: I am genuinely curious how your experience informs your worldview!

PLEASE REBLOG FOR LARGER SAMPLE SIZE!!!! ILY!!! 🤟💖

#poll #chronic illness #chronic pain #chronic fatigue #chronically ill #spoonie #disability #ehlers danlos #pots syndrome #postural orthostatic tachycardia syndrome #MCAS #fibromyalgia #rare disease #endometriosis #arthritis #lupus #autoimmune #chronic lyme #chronic migraine #it’s not limited to these #it’s any condition that persistently affects your Physical wellbeing

[moltengoldveins]

Having a chronic illness is standing in a field in the sun, watching your friends run by laughing with a frisbee and laughing too, joyous and happy and basically included, but not running with them. Not cause you can’t. (Never cause you can’t.) It’s just that you don’t want to, you’re fine where you are, you’re comfortable in the grass, you’ve never much liked running. It’s rock climbing and cave delving and free running one day and waking up too woozy and nauseous the next day to do chores. It’s the twisting in your gut when you realize someone else did your chores for you, before you even noticed. It’s the longing to lay down, to close your eyes, to plug your ears, to melt into the ground like some forgotten corpse until the moss takes your stupid fragile bones and finally uses them for something worthwhile. It’s throwing yourself at something physical only to realize halfway through ‘I can’t do this. I can’t move like them. Crap, I’m going to fall.’ And laughing the shame away when you fall flat on your back. It’s the sick unsettling pride you take in your own pain, in just how much you can take before it gets too much, because you know the rest of your friends never could. They have no idea. At the same time, it’s the awkward confusion when your friends reveal that some mundane ache to you is unthinkable to them, that a part of your daily routine is enough to make them shudder in fear or disgust. It’s sitting with the knowledge that you define yourself by this, because it defines you. It’s knowing everything about you has been rot and decay and the inevitability futile fight against entropy since the day you realized something was Wrong, Very Very Wrong. It’s sleeping too late on the weekends. It’s shrugging when people ask if they can help, because no. You can’t. Neither can I. You and I don’t get to do something in this situation and then walk away with a sense of accomplishment, a feeling like ‘I fixed it! Everything is ok now.’ You gotta sit with the knowledge that this can’t be fixed, just like I do. It’s the sad understanding when people flinch away from that: we don’t like being reminded of our limits, the stuff we can’t fix. It’s taking as many pills as your grandparents do. It’s a halfhearted attempt to explain why you carry a cane some days and not others before giving up and saying “I’m just unsteady today.” It’s resignation, most days. It’s not, others.

It’s not the worst thing in the world, not by a country mile. But it’s pretty bad.

#chronic illness #chronically ill #chronic lyme #chronic pain #chronic fatigue #Wooo boy am I tired today boys #And I’m also Bitter About it #A rare combination for me #Prolly counts as a #Rant #Not sure how you’d tag this tbh

[andyeddieeee]

i know this is such a long shot but I’ve honestly reached my limit and I need tumblrs all-knowing help

so, I have chronic Lyme disease, which has left me with some pretty nasty side effects. (stiff joints, inflamed joints, fatigue, insomnia, etc.) For the past two years, to manage my pain I’ve been using medicinal maryjane. Unfortunately, I’m unable to continue this due to a job with a federally run facility, and it’s taken quite a toll on my physical health. The mj used to dull the pain, but now it’s come back tenfold and I’m apprehensive to take any type of pain medication because of family history. I’ve also been gluten free for the past ten months, which has slightly eased this inflammation, but it hasn’t truly helped completely.

so, my question is do y’all have any recommendations on how to ease this pain that doesn’t involve extreme painkillers? I’m just so tired of being in so much physical pain.

#this is so embarrassing but please yall i seriously need some good recommendations #not bob #gabeposting #chronic lyme #chronic illness #chronic pain #chronic fatigue #lyme disease

[shrimpleastha]

I can't remember if journaling makes me feel better or if I should just suppress my emotions

#complex ptsd #mental health #ptsd #mental illness #actually cptsd #actually ptsd #actually mentally ill #cptsd problems #actually ocd #ocd #bipolar disorder #bpd vent #bpd #bpd thoughts #bpd problems #autism #adhd #chronic lyme #chronic illness #chronic pain #chronically ill #chronic fatigue #childhood abuse #emotional abuse #childhood neglect #childhood trauma

[bacteriaeatingmybrain]

The urge to buy more calico critters to make the pain flair/herx better even though it won’t fix much

#calico critters #sylvanian families #chronic pain #chronic illness #lyme disease #chronic lyme #disability

[neuroborreliosis]

www(.)ineedatherapist(.)com/

written in a bad bout of brain fog - 7/20/23:

i sit here like a screensaver staring out, taking nothing in i sit stupefied by very mundane surroundings while time wastes itself on trivialities my brain booms with echoes of thoughts that evaporate before they hit me my ears are tornadoes where white noise and tinnitus ring around and clang against my consciousness like vehicles and furniture and other things lost to encephalitic winds

saran-wrapped brain suffocates me in my wakeful state just enough to make me go a little bit dim, not enough to call a doctor in i feel like if i don't scream and keep screaming i'll die forgotten like this, cold-war collateral strung along by b. burgdorferi, silent slo-mo fadeout from the sickness that screens me in.

#lyme disease #brain fog #poem #poetry #tinnitus #chronic lyme #lymie #spoonie #chronic illness #chronic fatigue #chronic pain #free write #diary #lyme diaries #cld #journal entry

[mainlysarcastic]

Being disabled in this society sucks so bad most of the time especially when cannabis is the only thing that helps

Like I can’t go anywhere and do things I enjoy because of pain and fatigue so I micro-dose (cannabis) to keep myself functional and ease the pain but micro-dosing means I can’t go anywhere unless someone else drives and there isn’t anywhere near enough public transport available

Also cannabis is so fucking expensive and when you’re disabled you can’t really work full time and insurance sure as hell won’t help help even though cannabis is the best option since over the counter pain meds don’t do shit and prescription pain meds are incredibly addictive (to me not worth the risk even if a Doctor would prescribe them)

And the state I live in still hasnt legalized it yet and the legal delta 9/8/10 thc-a/v etc edibles tend to not be gluten free (fucking celiac) so my options are to either cross state boarders and be upcharged by dispensaries near the boarder or to buy legal flower/ pre rolls …but as we all know smoking is kinda bad for your lungs and I really hate it but like… wtf am I supposed to do?

(Luckily in Sep there’s gonna be a bill to legalize medical marijuana in Wisconsin but it’ll still be slow progress getting the industry to catch up)

Anyways being disabled in America just means being fucked over constantly at every turn and being so isolated most of the time

And I’m incredibly privileged in that my husband makes decent money so we aren’t living paycheck to paycheck and we both have strong family & friend support systems to fall back on if shit hits the wall

Disabled people who don’t have those things suffer even more and are super fucked by the system

Being disabled is so fucking expensive and it’s exhausting

I just wanna fucking live without dealing with all of this every moment of the day

#invisible disability #disabled #actually disabled #ehlers danlos syndrome #chronic illness #chronic pain #chronic lyme #lyme #celiac disease #chronic fatigue #cannabis #legalize weed #idk what I’ll do if I ever end up pregnant cause that adds new levels of pain and fatigue #and I want to be a parent one day and it just sucks being disabled and having every part of your life affected

[neurosky]

I Have A Diagnosis

As of today, I've officially been diagnosed with PANS and Lyme, as well as coinfections.

After 10 years, a full decade of having PANS, I've finally been diagnosed. There were a lot of things off in my blood tests, and the Cunningham Panel test (the main test run for PANS) was very off, basically fully confirming that I do have PANS.

We're moving forward with treatment now!! I got a few more blood tests today, and I'll be starting antibiotics this weekend. We'll be cycling through a couple different meds to see if any work for a while.

And, even better, I'll still have this same doctor after I turn 18!! Me and my family were worried I'd get cut off since I'm already out of her age range, and 18 means insurance changes, but this doctor said she wouldn't do that.

So, basically, today is huge for me and my family. This diagnosis means we can finally move forward with treatment that could change my life, and we finally have answers. I'm so incredibly happy <3

#chronic illness #actually chronically ill #chronically ill #sky's pans journey #pans/pandas #pans syndrome #chronic lyme

[herbertthefrog]

Got an esophageal manometry today, and now am stuck with a pH moniter in for the next 24 hours. They told me it would not hurt but oh boy it hurt a lot. Ended up vomiting on the doctor during the manometry I am So embarrassed.

#fibromyalgia #chronically ill #chronic fatigue #gerd #cfs #chronic illness #chronic lyme #chronic pain #disability #karma post

[hairscare]

chronic lyme is so fucking funny its like spiderman but instead of getting superpowers i cant walk

#hair scares #lyme disease #chronic lyme

[judy-maroon]

I interviewed Scott Klopfenstein earlier this year and it was definitely a highlight for me. He was so kind and generous with his time, and so open with me. It really was a dream.

He mentioned his Lyme diagnosis then and spoke to me about his medicinal regime. I hadn’t realized the cost of it then. Not just the actual dollar amount, but the pain he was in as well. He did a great job of not letting on how much help he needed.

But he’s asking for help now, and we should absolutely help him. He deserves to have his life back, and to move on from chronic illness. If you’ve ever seen him perform in any of the bands he’s been a part of, then you know what a powerhouse of talent he is.

His GoFundMe is about halfway to its goal. If the end result is Scott back to being himself 100%, then we need to help him reach that goal. Please consider sharing or donating.

#reel big fish #the littlest man band #Scott Klopfenstein #lyme disease #chronic lyme #lymewarrior

[ephemerabanter]

I hate doctors.

Lyme is having a medical "professional" tell you in no uncertain terms that he doesn't "believe in" the disease that's ruined your life for 30 years, because his was treated immediately and yours wasn't.

"I was never treated. Are you saying it just goes away?" - Crickets -

#lyme #lyme disease #chronic lyme #i hate doctors #doctors suck #medical establishment #lyme patients deserve better

[moltengoldveins]

just me, thriving with unmedicated* autism and ADHD, living my best life, having a good time, hashtag-blessed 🙂🙂💜💜💜🙂🙂

*I take no less than three multivitamins, eight specific letter vitamin supplements, magnesium, zinc, and iron pills, cranberry supplements, more Omega 3 than the average Ao3 fanfiction, several different herbal teas, and collagen. I monitor my diet with the manic obsession of a boomer in front of a casino roulette wheel. I am sick no less than twice a month. I use a cane, yet I have no professionally diagnosed joint problems. My menstrual cycle follows the whims of the Lord rather than any discernible pattern.

#adhd #autism #chronic lyme #three cheers for my pill case #It’s a little commercial one. It didn’t ask for this life any more than I did