Still Untitled

sick of being sick

[chakraone-blog]

[perfectlydeepdinosaur-blog]

Today, I wish I didnt have any of this.

[creativeronica]

I kinda wish people would stop asking me what I’ve been up to lately...

[honestlynina]

Person I just met: “What do you do for fun?” Me: “sometimes I get starbucks on the way to a doctor’s appointment”

[creativeronica]

For real. My “fun” is usually going to lunch after a doctor’s appointment. Y a y .

[rabbitinthemoon-blog]

Socializing is as exhausting as giving blood. People assume we loners are misanthropes just sitting thinking, ‘Oh, people are such a bunch of assholes,’ but it’s really not like that. We just have a smaller tolerance for what it takes to be with others. It means having to perform. I get so tired of communicating.

Anneli Rufus (via rabbitinthemoon)

[crypticcripple]

Sleeping with bad hips

Any tips?

My hips are so bad throughout the night and in the morning.

I can’t sleep on my stomach or back, I have to sleep on a hip and it gets subluxed from that. I need a hip hammock, or just detachable joints.

[perfectlydeepdinosaur-blog]

I would like tips too. I use a body pillow that helps sometimes (on side, one leg bent up on it) and wearing a SI joint belt helps too (more than pillow, but my current one is uncomfortable to sleep in, and I cant wear it if Im having bowel issues)

[perfectlydeepdinosaur-blog]

My joints: [ start hurting ]

Me: How dare you? In my own house! I made you with my own DNA and this is how you repay me?

[mortreport]

in my happy place - work by zeph fish from mermaids tattoo in san francisco. getting tattooed serves as an amazing physical pain reliever for me; i have a working theory that the stimulation “resets” my misfiring nervous system briefly, like a jump start. mentally, it allows me a controlled pain that i opt into, unlike my ehlers-danlos pain. last but not least, decorating the meatcage makes me feel like i own it. #ehlersdanlos #eds #chronicallyawesome #tattoo

[floppy-unicorn]

This is exactly how I feel about getting tattooed (and seriously, how is it so amazing for nerve pain?)!

[perfectlydeepdinosaur-blog]

This is basically how TENS machines work - introducing a new nerve stimulus 'confuses' your nervous system and makes it kinda pay less attention to the pain stimulus.

[dduane]

Well, this must be embarrassing for Martin Shkreli...

San Diego-based Imprimis Pharmaceuticals, Inc announced on Thursday that it will be providing an alternative to Daraprim that costs a fraction of the pill’s pre-Shkreli price. The drug will be sold at as low as $99 for a 100-pill supply. Yes, that’s just about a dollar per pill.

[perfectlydeepdinosaur-blog]

http://imprimispharma.investorroom.com/2015-10-22-Imprimis-Pharmaceuticals-to-Make-Compounded-and-Customizable-Formulation-of-Pyrimethamine-and-Leucovorin-Available-for-Physicians-to-Prescribe-for-their-Patients-as-an-Alternative-to-Daraprim Whoo! Take that you money-grubbing low-life. Huge kudos to the company now offering treatment for less than 1/10th the original price.

[lillyabbigale]

It’s officially Dysautonomia Awareness Month! I’m planning on wearing turquoise everyday of the month some how :D

[flimsywrists-deactivated2017070]

Let’s play a game.

1) Go to WebMD 2) Put in all of your chronic illness symptoms. All of them. Every single one of your ilnesses. 3) Reblog with your top result.

[flimsywrists-deactivated2017070]

This just in: I have leg cramps.

[femmecrip-deactivated20151212]

I got exercise or physical activity. That or Viral syndrome.

[finnishmctdcase-deactivated2020]

I got peripheral neuropathy

[chronicallyill99]

I got peripheral neuropathy as well…then intracranial hematoma. And 11 of my symptoms I put in said “please seek emergency medical care immediately” lol tried that with no success.

[curiositykilledthegrace]

Putting in those symptoms took forever. I got shin splints or a middle ear infection. WebMD is good for the healthy person.

[disabilityhealth]

I got ‘acute stress reaction’ and ‘exercise or physical activity.’ None of my illnesses were near the top of the list.

[1spoonatatime]

Mild ear infection. Seems legit.

[alupielady]

This is great! I have done it before and kept getting seek emergency care! I have also tried freemd.com. I like it better but still not really for the spoonie community lol

[creativeronica]

I got fainting, if I add that symptom… If not, I got peripheral neuropathy, then eye injury (I have yet unexplained left eye pain). One of them was HYPERthyroidism–I have hypothyroidism! LOL

[perfectlydeepdinosaur-blog]

Just the THOUGHT of putting in all my symptoms makes me want to seek emergency care!

[perfectlydeepdinosaur-blog]

Trying to take a photo of ‘stretchy’ skin = weird patterned bruising. Opps.

[disabilityhealth]

Spoonie problem #236

When your brain fog and fatigue end up making you act like you’re drunk even though you’re completely sober.

[myalgicencephalomyelitiscfstom]

Dr David Bell on observing the effects of getting people with ME/CFS to stand for a period. From: http://www.cortjohnson.org/forums/resources/dr-bell-on-understanding-orthostatic-intolerance-in-chronic-fatigue-syndrome-and-fibromyalgia.238/

[butthorn]

[rubyetc]

I hate that I’m about to use Sims as an analogy but whatever trevor. 

You know all those ‘Needs’ bars each Sim has, and how if you take your eye off the ball for one bloody second they all just run down into the red and your Sim starts short-circuiting? And you can’t even get into bed to do sleep because they smell too much and then you put them in the kitchen because they’re hungry and the fall asleep in the sink and it’s all completely to fuck? Managing chronic mental or physical illness feels a bit like that sometimes. As in: you can be doing okay with all these basic need things - eating properly; sleeping regularly; showering; getting dressed; being vertical for what is considered a normal portion of the day; and yet it’s only really through constant vigilance and sustained effort that you are achieving this. Because illness can and often does completely twat your ability and crucially your motivation to do these seemingly ‘easy’ or ‘instinctive’ things for yourself. So you are constantly having to monitor and keep an eye on these Needs bars just in order to maintain this baseline level of functionality. When you’ve had enough of playing Sims you can exit the game. When you are chronically ill you can’t exit that shit. There isn’t a break. You can be functional and may actually be pretty well for sustained periods of time, but you will always have an eye on those Needs bars. You will always be trying to ensure they don’t slide down into the red and cause or perpetuate a relapse or episode. And then when you are unwell, and you have very little energy or motivation and you’re falling asleep in the sink again because your bars are all in the red THAT is when taking action is the hardest. Because you can’t just say ‘fuck it’ and turn off, you have to find a way to carry on playing. And that is a very exhausting way to exist. 

Anyway, apologies again for the terrible choice of analogy, but that is the context for this drawing and that’s me done, ta! 

[beeishappy]

Thanks, Doc.

[fdelopera]

I’m not crying there’s just a DeLorean in my eye. :’)

[neverwhere]

Tomorrow is the last day the future will still be the future, before forever being in the past. I’m not ready.

[aromanticgcallen]

Things I Should Be Doing

so many

Things I Am Not Currently Doing

any of that