sleepy-spoonie

[sleepy-spoonie]

not my doctor telling me I'm fine & now I can't stand up after having an orgasm because the pain in my ovaries is so bad 🫠

#probably tmi #sorry #fuck doctors for real though #believe women #chronic pain

[sleepy-spoonie]

Folks have got to understand that they probably aren't messed up by some Secret Big Trauma that they just can't remember; but rather by a million tiny microtraumas that they do mostly remember but don't even register as traumatic because nobody actually understood that these things would cause trauma, much less stack on each other over the years.

[sleepy-spoonie]

I went for a pelvic ultrasound yesterday for intense pain I've been having in my left ovary, as well as cramping between my periods.

They found a small cyst on my right ovary, which I was told not to worry about, and that's fine, I'm not having any pain there at all.

They told me that they "couldn't see" my left ovary, where roughly 90% of the pain is located (the cramps in my uterus being the other 10%). When I asked what that meant, and what I was supposed to do now, they responded: "We can recheck it with another ultrasound in 6 weeks if you're still having pain, or you can go to the ER."

I am currently in pain. I am currently having pain that the doctor knows is an 8 on the scale of 1-10.

Why couldn't they see my left ovary? Did the ultrasound tech know this as she was performing said ultrasound, and was there something I could have done so that she could have captured it?

I am angry, confused, and disheartened by the utter lack of care my gynecologist office is showing me over this, and yes I am crying over it.

#chronic pain #pelvic pain #ovarian cyst #spoonie #chronic illness

[sleepy-spoonie]

An apparently unpopular opinion: disabled people can have and do their hobbies. They deserve to have fun. They deserve to live their lives.

Their inability to do some things (like work, for example) does not mean they should be judged for… idk hanging out with their friends or to going outside. After all, having interests outside of work is often essential to our mental and physical health OUTSIDE of our disability.

And also *you might want to sit down for this* disabled people know what’s disabling for them (unless they people-please or push through due to necessity or survival of some sort). Disabilities don’t have to be visible or persistent to be disabling.

So yeah - my declaration: if an activity you want to do feels good and you’re able to do it, then do it. REGARDLESS OF YOUR DISABILITY WITH OTHER THINGS.

[sleepy-spoonie]

I don't think some ppl understand that when disabled ppl say that it takes a lot of work to do something they're saying that it's a lot harder for them to do it than it is for you. To you it's a 20 minute task, for me it will take 2 hours minimum. All it takes from you to do it is cleaning supplies. Meanwhile it costs me a meltdown, very sore muscles, and 2 days of rest after. There's also a good chance I will forget to eat, drink, or use the bathroom while I'm doing it. When I say it's hard for me to do something I mean it's hard I don't mean that I don't want to do it.

[sleepy-spoonie]

It's tough being used to feeling incredible amounts of pain that when it becomes worse or more frequent you don't even mention it

And bc it's been going on for so long, when you finally do figure out it's not normal or start actually trying to talk about it the people around you get Very confused about why 'all of a sudden' you're being impacted so heavily and are now actively disabled. Like, actually this isn't new I've just spent years teetering on the edge without realizing how abnormal it is due to a variety of reasons I won't get into on tumblr dot com :')

I don't know how to describe the experience other than I feel a lot like a cat in pain, like you can read it in my body language, but my face says little to nothing and I'm not saying much at all about it until it is too much to bear.

#this

[sleepy-spoonie]

I've been experiencing some intense cramping since my last period ended (3 weeks ago), and when I called to ask my GYN about it, the receptionist said "if you're not spotting, you're okay." but I'm not, and I know she's wrong.

I ended up getting an appointment, but not for another 3 weeks. They're so bad sometimes I'm curling up in pain, but yeah, sure, 21 days is fine to wait I guess.

#cramps #period cramps #menstruation #endometriosis #pcos #chronic illness #chronic pain #spoonie

[sleepy-spoonie]

I feel like part of what makes chronic pain so unbearable is the fact that it can be completely invisible. My brain struggles so much with the fact that I’m in this much pain, but cannot see where it’s coming from and what is hurting me. There is no injury visible to me. There is no particular spot it hurts. It just hurts everywhere, so much, all the time. My mind goes around in circles trying to find a way out, but there is nothing there. And there’s nothing I can do about it except lie down and cry for hours on end until I pass out from exhaustion. Then I wake up and nothing has changed.

#chronic pain #spoonie #chronic illness #chronically ill

[sleepy-spoonie]

did y'all know that having a chronic illness is considered trauma & can cause ptsd, because I, my friends, did not, until today, and I think I finally understand whats wrong with me (my mind).

#chronic illness #chronic pain #disability #spoonie #ptsd

[sleepy-spoonie]

I fear some of my Chiari symptoms are worsening. I had brain surgery in 2015 & though I know it wasn't a cure, I guess I was just ignorant to the fact that it could still cause me problems?

I'm not handling it well, the return of symptoms that I'm actually sure have been returning slowly for a while now, I was just choosing to believe something else was causing them.

I feel stupid, and I feel defeated, and I am sad.

#chiari malformation #chiari #chronic illness

[sleepy-spoonie]

"Do these symptoms interfere with your daily activities?"

Bitch these symptoms ARE my daily activities wym

[sleepy-spoonie]

yo, pain is so wildly debilitating. pass it on.

#spoonie #chronic pain #chronic illness #disability

[sleepy-spoonie]

I’m not sure who needs to hear this but it’s normal and okay to be DISABLED by your DISABILITY.

Sometimes it is going to stop you from doing things, and that’s okay. Sometimes it’s going to get in your way or make you struggle or cause problems in your life. But that’s okay, that’s why it’s called a disability.

You don’t need to fight yourself or “not let it hold you back” because a lot of times it will, but that’s the point.

[sleepy-spoonie]

Yesterday was the first time ever that a doctor has told me that the pain I experience isn't my fault.

I know that it isn't, but I've been in pain since I was 4 years old, I'm now 32, and in all those years, not a single person has ever said those words to me.

#spoonie #chronic pain #chronic illness #chronically ill

[sleepy-spoonie]

my husband wants to install a grab bar to the wall by my side of the bed, and when he told me I cried because how is it possible that this human cares about me this much?

#spoonie #chronic pain #disability #chronic illness #chronically ill

[sleepy-spoonie]

day two of crying at absolute random times because I'm tired of having health issues ✌🏼

#chronic illness #chronic pain #spoonie #narcolepsy #chiari malformation #occipital neuralgia

[sleepy-spoonie]

It's Rare Disease Day, folks!

Take a moment today to learn about one or two of the 6000+ rare diseases that 300 million people live with worldwide.

I personally live with Chiari Malformation, Narcolepsy, and (true isolated) Occipital Neurlagia.

Rare is many. Rare is strong. Rare is proud. 🦓🩷💚💙

#rare disease day #rare disease #chronic illness #chiari malformation #narcolepsy #occipital neuralgia #rare #spoonie