Chronic Fatigue Syndrome - Tumblr Posts

Hey! I just read your post about which of your doctors would get get decked and I just wanted to say that I’m sorry you had to go through that. Being dismissed by the people supposed to be there to help you is the worst and im sorry there were so many! I feel like doctors are just phoning it in half the time and don’t actually care about people at all. I’ve had similar problems ever since I left my pediatrician and had to go to grown up doctors. The least they could do is actually look at your file before they just start saying stuff that’s entirely unhelpful. I hope you’re still seeing the lady who actually helped you get diagnosed or at least the guy who wanted to help you get out of PE. Sending love your way!

thank you! It’s going much better now and I’m still seeing the nice lady who actually helped me :) I’m thinking of getting some medication for the chronic pain and it’s very nice to know my doctor won’t disregard or gaslight me

it’s good to know I’m not the only one with terrible doctor luck

most of Star Trek is just me being amazed that bones is actually a decent doctor lmao

that feel when you get so tired that you can’t process any sort of TV or books or even social media but you can’t rest or nap either so you just AAAAAAAAA

I genuinely forgot that blathers the owl from animal crossing is always sleepy because he’s an OWL and owls are nocturnal so I really saw him and went “damn this guy has chronic fatigue syndrome like me!” 😭

no but can we talk about tumblr ios banning spoonie? That is so genuinely ableist because “spoonie” is a term that disabled and chronically ill people use to refer to themselves. Why is apple trying to surprise disabled people referring to ourselves. Wha T

yeah it’s a thing really common in chronic fatigue syndrome, if you’re regularly experiencing it to this degree you might want to see a doctor buddy

that feel when you get so tired that you can’t process any sort of TV or books or even social media but you can’t rest or nap either so you just AAAAAAAAA

this obviously doesn't apply to every disabled person but one of the things you don't really hear about for being disabled or chronically ill is the boredom. being stuck in bed and like. not having the ability to do anything meaningfully intensive with your hands, not being able to sit up, not having the concentration to read or watch things (from pain or brain fog or something else) and just kinda. lingering around online and hoping for something to happen or someone to talk to even if you have nothing good to say bc nothing has been going on for like the last day, week, month anyway

Going to get an office chair for my drums brb

my chronically ill best friend just said "I feel like the side effects part of a medication commercial" SO FUCKING TRUE BABE

One weird comorbidity of EDS is actually autism! People with EDS are six or seven times more likely to also have autism!

I have basically no access to care at this point because I live in hell (florida), but would *like* to see someone eventually to look into EDS and comorbidities…wtf do I do? I have no idea how to get anyone to take me seriously and I have an incredibly hard time not completely shutting down during appointments because of medical trauma and being autistic; at this point I’m thinking about making a binder with symptoms (and make a section for each area of my body, past diagnoses, research articles, etc.) but I don’t know. I just want to be taken seriously, and that’s assuming I can even get care. Right now I’m stuck with a fucking dick of an NP just because I need *someone* to prescribe my psych meds. (He also prescribed my T, which he can no longer do at this point because of FL’s new laws…he’s fighting that but I think I just may go off T at this point because I don’t really trust this man at all; I know what I’m doing with my psych meds because I’ve been on them for 6 years but need someone I feel safe with to help with my HRT.)

Same

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

hey disabled friends and anyone who struggles with eating :)

when i'm not feeling well and i'm super nauseous, i'll make what we've affectionately coined a 'pick plate' it's just a mix of foods cut small that are easy to pick up..and that smell good.

often it's enough just to trigger my appetite that i can eat (or the smell makes me sick). they're easy enough to do that they can be made sitting in a wheelchair or sitting down :)

i hope this helps someone!

sending love,

lillia

When one single conversation leads to your family saying there’s a high genetic possibility of another chronic illness and you’re already kinda showing symptoms… c’mon body stop this nonsense.

Fun fact: the word 'chronic' means it's lifelong! and the phrase 'chronic illness' means I'm stuck with it until it takes me out, or I take me out. So, to the woman bothering me at a close family friend's funeral today about 'whether it goes away' can shut the hell up. Chronic means I'm stuck with it. Telling me I can think my way out of it when I have things physically wrong with my body will not do anything. No, it's not going away, and praying and trying to force me out of my wheelchair won't do jack-shit (except make me want to break your nose). Trust me, I have tried almost everything under the sun by now.

Besides, I've come to the conclusion if god/s exist, they decided I'm better used as a disability advocate than wasting their precious time on fixing the fact I'm in crippling pain constantly :DDD

Sometimes accessibility is using an electric toothbrush

One of the best things I did for my chronic pain and ADHD was buy an electric toothbrush with a timer and an app.

This is gonna sound nuts but hear me out.

I've been repeatedly cracking jokes to my dentist, physio and therapist that that my life would be so much easier if I didn't have to stand up for two minutes while brushing twice a day (and end up skipping it because my body hurts too much - followed by getting anxious about not brushing), and my therapist had a stroke of genius (I wish I'd thought of this) and said "well, why don't you try an electric toothbrush?"

I have a crippling fear of the dentist (something about having vampire fangs and various impactions from 9-14 years, braces for 4 years, having eight might be more teeth pulled and ongoing jaw pain from early teens will do that to a bitch - also seriously? does anyone like the dentist? shout out if you do but I cannot relate) and he knows that I get overly anxious and obsessive about brushing my teeth well to avoid the dentist and fillings as much as possible. So, I listened and used my disability funding. It took a lot of back and forth to justify spending that much on a toothbrush, and I wouldn't had I not had the funding

But wowow, has it changed sm. It's easier to sit down to brush my teeth when I'm not having to put so much effort into it and my teeth feel cleaner. I'm doing a better job for the same amount of time and effort - anyone with chronic pain and fatigue understands how precious those things are... and the best bit? The app it turns the whole fiasco into a game (as long as sending notifications to remind to replace my toothbrush head and to brush). I look forward to cleaning my teeth to see if I can do better than I did yesterday. It's insane that something so simple as having a "brushing score" can hack the ADHD braincell into wanting to do it.

I dissed the app so much "why does a toothbrush ever need to be Bluetooth" I said, and now I laugh and smile to myself knowing it seriously helps.

...plus, my teeth got whiter? maybe that's the consistency from wanting to, or maybe it's the brushing, or some combination there of, but I'm not complaining!

I'm using the same amount of time and less effort, and getting a better outcome.

Sometimes accessibility doesn't look like ramps and mobility aids (though that's SO important too!), sometimes it's making things easier by finding routes that streamline your everyday routine, and being kind to yourself and allowing yourself the grace to let change, remembering that yesterday or last year's 100% may not be today's :)

Love you all 💕

My specialists keep saying I'm doing everything right

So how come am I getting worse? I hate being chronically ill.