fibrofoghours - Tumblr blog

fibrofoghours · 2 years

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Constant dizziness

Is now the angle

My body has chosen...

Here we go

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fibrofoghours · 2 years

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Just happened to me and I'm tired of this. I'm on a medication for my fibro that can cause serious withdrawals and I had to go out of town. Of course the pharmacy could only filled one day prior... Disbelief, yeesh... And now because it's a controlled substance I can't just transfer it. Now I'm stuck continuously contacting my doctor who hardly answers...

What a world we "live" in...

Screw pharmacies and insurance companies for making chronically ill people on meds frequently go through withdrawals, and sometimes dangerous ones.

#fibrofoghours #ibs #fibromyalgia #spoonie #rheumatoid arthritis #chronic pain #chronic illness #rheumatoid disease #raynauds #rosacea #invisible pain #invisibleillness #functional dyspepsia #gastroparesis

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fibrofoghours · 2 years

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there’s no shame in taking meds

• if they keep you alive, they’re great

• if they help with your pain, they’re great

• if they ease your symptoms, they’re great

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fibrofoghours · 2 years

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Though I try, it feels like I'm always and forever will be coping...

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fibrofoghours · 2 years

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anyone else with chronic illness (chronic fatigue in particular) feel like they've kind of lost some of their intelligence or cognitive function? I get so upset that I struggle to understand consepts that I used to. It's so difficult to understand things I read. I can't get my point across like I used to. I feel so fucking useless and frustrated. I used to write, read and constantly learn and now I can barely function.

please tell me I'm not alone. please tell me I'm not just lazy or losing intelligence???

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fibrofoghours · 3 years

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Me: *eats*

My digestive system:

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fibrofoghours · 3 years

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you know what i find infuriating? when you see a healthcare professional, you have to walk a very thin line as you talk about your symptoms and conditions

if i don't baby myself down and use smaller words or talk as if im unaware of parts of my condition (which i am very knowledgeable about) they will dismiss my concerns, assuming im a "google doctor" hypochondriac rather than an intelligent disabled person

i asked my intake nurse at an urgent care today (waited 3 and a half hours for a uti diagnosis btw) what specialist she would recommend for my joint dislocations because they were staying out longer and it hurts

she looked at me and said "Oh I don't know sweetie. I thought you were going to say arthritis, but there's a very long word for what your joints are doing."

ma'am....i know what a subluxation is i just wanted a provider recommendation

honestly as soon as you let them know you're disabled they assume you are just a dumb sweet little baby and the moment you demonstrate any medical understanding of a condition YOU HAVE they get combative and will actively work against your attempts to receive adequate care

and in this case, i apparently did not act "stupid" enough, because they failed to tell me a word i already knew, or that my lab results even confirmed my uti, much less that it was severe enough to be with hematuria- i had to ask for confirmation after she rattled off the prescriptions she was sending and read my discharge papers for my full diagnosis

tl;dr Healthcare providers: stop treating chronically ill and disabled patients like they are not smart enough to be engaged with like the adults that they are

(this includes people with mental and learning disabilities too)

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fibrofoghours · 3 years

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with great pain comes the great inability to form a coherent sentence

[ID: a 4-page comic in illuminated manuscript style of a person standing outside. /1: They look to the distance and say: "What is that dolorous cloud: that dreadful fright I see now on the dark horizon?" /2: They turn, upset, and say: "Alas! It is the brain fog approaching!" A purple cloud enters the panel. /3: They hold up their hands against the approaching cloud, saying: "A curse upon that fog that steals my eloquence. I...hate...it" /4: The cloud surrounds them and they say: "cloud"..."bad" /ID]

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fibrofoghours · 3 years

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me: *starts screaming*

somebody: whoa there buddy whats that all about?

me: sorry i just remembered my whole entire life

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fibrofoghours · 3 years

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people who are in pain don’t always look like they’re suffering. it’s especially common among chronic pain patients who’ve been ill for a long time, as well as autistic people.

going slack and moving as little as possible, including the muscles of the face, is in fact a sensible reaction to intense pain: it conserves energy. someone who looks outwardly relaxed or bored may be screaming on the inside.

if this is you, i just want you to know you deserve to be taken at your word when you say you’re in pain. you shouldn’t have to put on a fake grimace in order to give a convincing performance of what you’re actually going through.

if you have never experienced it yourself, please pass on this information so more people will be aware.

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fibrofoghours · 3 years

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A little louder for the people in the back!

Being in Pain. Expends. Energy.

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fibrofoghours · 3 years

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And my brain does too much disassociation and daydreaming for this on top of it...

yuck i fucking hate having ~cinematic~ mental illness moments. was in the bathroom just now trying to put in my earrings and my hands were shaking so bad it took me like five minutes and i was getting irrationally upset so i started tearing up and it's like. ugh. this WOULD be the scene in a movie that shows that the character's emotional health has completely gone to shit. ugh.

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fibrofoghours · 3 years

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Still happens to me, and I'm young. The word chronic is used for a reason, and I'm living in this body, but hey, apparently they know more than me...

when you’re chronically ill suddenly everyone you meet thinks they’re a doctor

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fibrofoghours · 3 years

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Damn girl, is it getting hot in here, or is it just my body’s inability to regulate temperature 😘 😜

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fibrofoghours · 3 years

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This isn’t our usually content but!! Happy disability pride month! Here’s some things for abled people to remember:

You do not decide who is and who isn’t disabled. Just because someone “looks normal” or “acts fine” doesn’t mean they aren’t disabled, and also shows you like disabled people need to act a certain way to be real or valid.

Disabled is not a dirty word, don’t treat it like one.

If you’re including visually impaired people in your activism, include all of us, not just people who have total blindness. Same with HoH and deaf people!

People with mobility aids may not choose to use their aids for multiple reasons, and it’s not their job to explain to you why, or reassure you that they’re actually disabled.

Please remember that all kinds of service dogs are animals. Please remember that service dogs are often super important to people who have them, and it can be dangerous or fatal to them if their dog is distracted. I know a lot of people want to pet the dogs, but please don’t distract them.

There is more to disability pride when it comes to neurodivergencies than just autism and adhd. Support psychotic voices, those with personality disorders, and mood disorders. Educate yourself, and work on your ableism, especially when it comes to psychotic people and people with personality disorders.

No disabled person is obligated to give you any information about their disability if it makes them uncomfortable! Abled people, especially physically abled people, often don’t realize how exhausting to constantly explain to people your disabilities.

Don’t stare at people signing, it’s weird. It’s like ease dropping.

Please feel free to reblog this and add onto it if you’re disabled! I highly encourage abled mogai/queer people to reblog this :].

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fibrofoghours · 3 years

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I'm honestly really scared.

Feel free to reblog, it's my life and may be relatable, but the deal is as follows:

I already don't have that many friends to begin with. I feel alone and misunderstood and have for most of my life, partly because of my chronic illnesses and partly because of my life.

And yet, this coming fall, I'm going back to university for my PhD which yes, I'm proud of, but I'm afraid I will get again have no friends, as has occurred throughout most of my life, and I'll be alone.

At most, I often become the person people come to for advice: the therapist if you will. But, these people never want to stay friends with me, or hear about my life or what's going on in my head, or just have fun with me.

I'm getting tired of this constant cycle I've tried so hard to break through. My family is alright, but that's family, and I'm leaving them and should as I move across the country. I do have a kind boyfriend, but he has depression, and I'm afraid the extra stress will be hard on him.

So, I still feel so alone, and I don't know many people who go to graduate school with chronic illnesses, let alone still how to find people who genuinely care about me for once.

Does anyone have any advice? Any thoughts? Anyone who relates?

Thank you for your time, and I send you all my love! You all deserve the best from this world, I know this.

~L

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fibrofoghours · 3 years

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Anyone else just completely in awe of people who don’t have chronic pain?

Like what do you mean you can go to work with your period cramps?

What do you mean you can do stuff two days in a row?

What do you mean you see your doctor once every two years?

Like my brain just doesn’t understand how this is possible

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