Just in pain today and I can't do anything about it. Keep getting into semi-fights with the wife. But yeah I agree, i have learned that it's not right to judge someone right off the bat, Over the years I gained the ability to tolerate a lot of stuff before I explode.

Uh oh o.o I hope you and the wife work things out!!!

I am pretty sore right now myself...my back is aching due to the weather.

Is anyone else experiencing some extreme subeta lag or is that just me???

Yeah I'm pretty sure it's the new pet announcement? But I am as well, and yeah shes fine just playing saints row. Im just grumpy today. X_X

I think the scootle is cute x3 Makes me think of the movie never ending story though. There was a giant speedy snail in it. Well, hopefully today is a much better day.

Haha, yes I saw your comment on the post. XD I agree, I want one and I got the perfect name all picked out!

Muhahaha

<.<

.>

I want one myself, not gonna lie x3

I have yet to decide on a name though

It's good timing, Just decided on the name and I didn't know which pet I wanted. Being indecisive sucks! D:

And commitment is scary lol

All three of the people in my house (me, my partner, and my stepson [her biological son]) have Ehlers-Danlos syndrome. It took my partner until she was in her 30s to be diagnosed correctly; up until then, they kept throwing fibromyalgia at her and shrugging their shoulders. I went to the appointment with the geneticist with her; the doctor thought we must be related as soon as she shook my hand, because my skin texture and the way my hand moves is very typical of EDS. The doc told me I should probably make my own appointment, and I did, and here we are with a diagnosis that will exclude us from long-term care insurance as well as any private life insurance policies.

My partner also has complex PTSD as well as the accompanying anxiety that comes with it, which was more or less the center of our life, until last year. Because last year our (minor) son got into a car accident and now has a severe traumatic brain injury. We're lucky, though; they didn't know if he would make it, and then they didn't know how much he would recover. He has recovered a lot. He came home with a g-tube (couldn't take food or medicine orally), but he's made leaps and bounds in what has only been months. It takes from two to three years to reach your peak recovery after a brain injury, so we are hopeful he will continue to progress. He's back in school and everything.

I have a herniated disc in my back and my spine is absurdly straight where it supposed to be curved. That on top of the EDS and the fact that I can't find an antidepressant (or cocktail of antidepressants) that help is just making me want to hide under the covers.

Anyway. Fellow spoonie here, in a family full of spoonies. (Did I mention my mom also has EDS and my stepfather has MS and my dad is just so chock full of problems we don't even dare try to figure out what they are?) Oy. Hi, everyone.

Oh, and we recently went to Nevada for vacation (I'm a bit of a nerd, and the video game Fallout: New Vegas has a lot of real-life locations, and I have this obsession with them, and, well, it means I like going to the Mojave A LOT) and tried some of the cannabis for pain. This is our second try out there. The first time, the salve we tried didn't work, nor did the edibles. One of the pre-rolls worked for my partner, but then she got them this time around, and had a different experience. Last month when we visited, we tried cannabis pills and some more edibles and the pre-rolls again. I think the problem with cannabis is the same as with every other form of medication--you have to spend A LOT of money before you figure out what works for you, the dosage, etc. It's being expanded where I live (medicinally), which I feel is a good thing.

Okay, done rambling now. :)

I think it's great you started a Subeta group for this. I imagine it can help lots of people in the darkest of times :)

I deal with a lot of my own issues, a combination of both chronic illness and chronic pain. I was diagnosed with PID (long story short, dude claimed he was a virgin. he was not. i got chlamydia. taken care of. wasn't done eating my bits.) awhile back and while I got that taken care of, I will now have to deal with pain for the rest of my life. Lady doc suspects I won't be able to have children, either, and suggested getting a laparoscopy done to check everything out and make sure things are as okay as they can be down/in there. I have the equivalent to menstrual cramps for 2-3 weeks out of every month. Sometimes, it's so bad, I can't have relations with my husband-to-be. So that's pretty crappy. I'm managing, though, the best I can. I switched my birth control back to Depo and it has helped some. I still have pain, but it's more tolerable now, rather than just absolute hell all the time.

Otherwise, I have diagnosed (and untreated, since the doctors around here apparently can't return scripts to the pharmacy when requested) manic depression, generalized anxiety disorder, an agoraphobia. I plan on getting tested for ASD hopefully sometime this year. Mild forms of paranoid schizophrenia, PTSD, and OCD are suspected, but are not diagnosed. I'll be taking that knowledge with me when I get tested for ASD, as I know sometimes you can be misdiagnosed with such being on the spectrum. There's a plethora of other things that make me consider this, but it's lengthy so I'll leave it alone haha

I rarely leave my house. I can't drive. I have very few friends. Most are online or live far away. I'm almost literally a hermit, lol. Most days I struggle to get out of bed due to my depression, but I figure if I can at least make it to the living room for the day and/or get my hair and/or teeth brushed, I made a hell of an accomplishment. I'm getting married next month (pushed up so we can get me on insurance ASAP) so I'll be starting therapy again soon. I just hope I can stick with things this time.

We're all talking about the horrors of our problems, but what do you do to brighten your day outside of Subeta? Personally, I enjoy writing, listening to music, singing, and gaming (although my gaming has been rather dull lately... Such a dry age for good games in my fields of interest.) I cuddle my cats, too. I'd cuddle my dog, but he's too hyper lol. Last time he broke my nose.

hey yo yeah i have some chronic pain stuff going strong and a garbage brain to go with it

Hi, I have fibromyalgia, cfs/me, a mast cell disease, and gastric issues. I've been messing around on Subeta on my down time from school and work to distract me from the pain. I hope I'm not too late to this thread.

Good idea to make this group! thumbs up

I have more than one chronical disease, aching joints and bowel issues no one is able to properly diagnose (aka no one gives a flying f...fish) and my psyche...uhm, let's not talk about it.

Anyway, I joined the group.

This is my first week in a month that I have no doctor related visits I have to go to! Yippee!

I actually recently finished physical therapy for my neck and shoulders but still have to make sure to continue my exercises on my own, because of my health insurance only allowing for four sessions. But it was extremely helpful none the less. In a few months it will have been about two years since I started having pain, on and off, in those areas. I don't know exactly what happened but most likely caused the injury from a sprain at work plus stacked up stress, plus fell down a few concreted steps while wearing a 20 pound backpack.

On another note, I am narcoleptic. I have narcolepsy WITHOUT cataplexy, so the sleep attacks aren't triggered by any high emotions. And while I have fallen asleep standing up numerous times, I am now medicated for it, and have luckily never hurt anyone else or myself. Although last month I did start choking myself on furniture because I keep falling asleep against the coffee table and couldn't wake up with enough energy to move away from it, I could only sit back up for a moment before falling back asleep instantly and resuming choking myself. It probably went on for an hour before I could actually wake up. I also fall asleep in the shower a lot, so I try to always stay seated. I somehow ended up on my stomach during a bath though, and every time my face hit the water I woke up, but again, didn't have enough energy to move. Other symptoms include sleep paralysis, astral projection, and I get a lot of charlie horses, have a lot of nightmares when I do dream, my roommates say I have been kicking my feet a lot lately, so hard I make the window shake, I used to never move an inch. But these past few months, often times they wake me up to reposition me and to move the blankets because they're scared I am going to choke myself with them. I also sleep talk or sometimes start trying to talk to them in the sign language alphabet (I barely know it so idk why I do this) Usually after a sleep paralysis episode, when it's been going on for what feels like a long time, I will start uncontrollably sobbing because it scares me a lot.

I registered with my university's disability office and they have been letting me borrow a "Scribe Pen"? so because of my random sleep spells, I will move on autopilot when it comes to drawing, writing, talking, or any other repetitive motion. The Scribe Pen records audio and syncs it to my writing in a special notebook. When I wake up, see my scribbles, when I go over my notes outside of class, I can use the pen to tap on the last legible thing I wrote, and the audio will pick back up at that point and I can rewrite my scribbles into legible notes and the pen will add my new writing to that time frame! It has been a life saver. the school also makes it way easy for me to inform my teachers of my condition now too by sending an email every quarter, and allowing me accommodations for exams (since I have fallen asleep on those too before I knew what was wrong) So I can take the exams in a room with the TA's who can wake me up if I fall asleep, and allow me to get up and move around to try to get energy.

lately, I have been dehydrated for some reason and have been trying to increase my electrolytes to help with it, But because of that, I wake up two hours early to pee, and when I wake up early and try to go back to bed, sleep paralysis is a guarantee. So I've been losing more sleep than usual lately.

I am very lucky that I live with my two best friends whom I have known for....16/17 years? And we each have our own issues, but they try to knock on the bathroom door when I've been gone for too long, since I fall asleep on the toilet too. Unfortunately I have GERD and IBS so I am in the bathroom a lot! And I sometimes fall asleep before I can even finish my business. GERD means I get heartburn a lot, I also sometimes will just vomit in my mouth just from bending over. There is no gagging, it just comes up! Feels like drowning. And IBS means I have very sensitive stomach so even drinking water can send me to the bathroom for twenty minutes.

Currently I have a nasty cough (I have had it on and off for almost two months) that is making even my customers at my job ask if I am okay, and I am worried it is either asthma (it's getting to the point where I cannot swallow or breathe at times) or it's because of my GERD, since the acid could be ruining my throat. And it hurts so bad sometimes, I feel like I am gonna throw up.

I was diagnosed as having major depression and anxiety a few years ago but I did go to therapy for awhile which helped.

I also have a bunny, Niles, who is my therapy pet. When I fall asleep on the floor, he likes to nibble on my hair, lick my hands, toes, elbows, and nudge me to wake me up so I will pet him, which helps me wake up. He also LOVES jumping off my head (I don't like it but it does help me wake up, that's for sure, hahahah) and he loves jumping on my back too. (that's okay) sometimes he'll just run around my whole body, doing all these things, sometimes if I am lucky, he'll be excited and give little honking (he is nurtured, so it's more of the "I want to play!" honking and not the "mate with me!" honking)

Sorry for the long post! I am procrastinating on calling the doctor about the cough, haha! >< But thank you for reading!

Another spoonie here {I feel like there are quite a few of us on Subeta -- probably because of the low-key social aspect and no need to leave the house xD}.

• Dysautonomia (Vasovagal Syncope). Layman's terms: Fainting.
• Idiopathic Hypersomnia. Layman's terms: I sleep too much for reasons they don't know. I never feel rested. {More info on Chronic's petpage if interested.}

I've also struggled with social anxiety, OCD, and self-injury in the past, but therapy really helped with those. Generalized anxiety and depression mostly controlled with medication these days.

I have a lot of unaccounted for symptoms too. I'm trying to convince my doctor to write a rec for me for the Undiagnosed Disease Network, but he doesn't seem too interested in the idea. D:

: Omg. Sometimes when I wake up, I can't really move much (I don't want to call it sleep paralysis, because I don't know if that's what it is? I have this feeling like I could move, but like it would take too much effort so I can't... if that makes sense?). I can generally still move my feet and hands. I knead my feet (like a cat?), and sometimes I sign words with my hands too, because it feels like it would take less effort than talking. I've never heard of anyone else doing that xDD (Like you, it's not even like I know sign language, although I do know the alphabet).

That pen sounds super awesome. I haven't heard of something like that before!!

&Niles sounds freaking adorable. I have 2 cats and a dog, and 1 of the cats has basically acted like a therapy cat for me. Especially when I was struggling with self-injury and before they leveled out my meds for depression. She's a big teddy bear who likes to be held on her back like a baby. Whenever I'm having a "sad day", I just sit down and cuddle her and bury my face in her fur. ❤ Always makes me feel a bit better.

Yet another spoonie here.

Physically I have to deal with:

• Psoriasis -- autoimmune disorder mostly impacting the skin + psoriatic arthritis -- The extra "joy" that comes with psoriasis, makes my "good" joints hurt
• Idiopathic tachycardia condition -- essentially they have no idea what caused my heart to suddenly be like "I'm going to go so fast if you do not medicate me".
• PCOS/Polycystic Ovarian Syndrome -- More than just ovarian cysts, also includes pre-diabetic issues, makes it hard to shed weight, irregular periods, and the mystery of "why does my testosterone never go down".
• Endometriosis -- You wouldn't think this could be comorbid with PCOS but here we are. Basically the stuff that the uterus should be shedding doesn't shed from the uterus right and sometimes grows in places it shouldn't. Makes everything period related worse holy crap.
• Osteoarthritis -- Regular old arthritis like people associate with their grannies and pop-pops. I've got it in my right knee and ankle, both of which have had significant injuries.
• Migraines -- Mine tend to be triggered either by MSG (which is in several foods) or hormones (see also Endo and PCOS). Severe headaches that include light-sensitivity, sound-sensitivity, getting sick to my stomach. The postdrome is not fun either since I feel exhausted and hung-over without drinking.

In addition to all that I've got depression, anxiety (both general and social), synesthesia (my senses are mixed up as hell including seeing sound), and my actual family doctor who actually works with therapists and the like thinks I might have undiagnosed autism and ADHD. I've dealt with self-injury for the past 16 years.

Onto less diseasy things, I've got a kitty named Windhowl (I named him for one of my own Transformers fancharacters) and two dogs, Misty Belle (grandpa wanted Misty, mom wanted Belle) and Kibbles (grandma named her). Windhowl is kind of like a therapy cat for me both emotionally and physically. He cuddles when I'm having emotional breakdowns, or when everything physically hurts and nothing is okay, often even purrs for me.

I'm really into Transformers, especially the current IDW comics run. I mean, obviously or I wouldn't have chose the username Rodimus when I changed from my old (Mega Man themed) username, right? Mind you I'm also still into Mega Man. I love robots. It's safe to say I love robots. I may or may not have a Mastermind Creations R27 Calidus (IDW Rodimus) figure next to me. Sometimes I stim by putting him in new poses. Sometimes I put him in new poses to draw the pose. Yes I'm probably obsessed with Rodimus. Oops.

Yooo it's nice to see other spoonies on here! I've got fibromyalgia, some sort of unnamed autoimmune situation, and a smattering of other stuff. Usually I'm in a fair amount of pain, but pet sites are a great distraction - I usually bounce between here and flight rising.

As for personal stuff, I'm an artist (furry artist, haha) and I love to mess around with glitching/datamoshing stuff. I tend to watch a lot of lps since the pain in my hands makes it difficult to play sometimes. I'm sooorta into comics, I got burned out a while back and just kinda keep tabs on stuff now.

I have mdd and chronic headaches/sinus pain with the occasional migraine. :'( Currently in group therapy for my mental health but I kind of hate the staff there that treat us like garbage.

I was looking for a different type of group when i found this, I have a few mental issues and neurological issues and surrer from chronic life long joint pains and joint related issues

Hi everyone...

I am 36 and have been diagnosed with Lyme disease at least 7 times. My first positive was when I was 6. My last positive was November of 2017. I also have Hypothyroidism, PCOS, depression, and anxiety. I appreciate you making this thread. From personal experience, I know chronic illness/pain can be a very lonely place. It's one of those things that you don't understand unless you have been through it. I have been in treatment for my Lyme since December 2013 and am feeling LOADS better than I did. I still have bad days, but I have more good days!

How are you doing with school? I just graduated in May and I am a single mother. It was really hard, that's for sure! I wish you all the best! It is awesome that you are pushing through to do so! hug