Any other Spoonies? (Chronically ill/Chronic Pain)
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Hello you can call me Nell~ I'm 23 years old and have been battling chronic illness and chronic pain for 13 years of my life. I am a long time veteran on subeta and I've been wondering how many people on subeta here also are chronically ill/ in chronic pain. I've been using subeta as a distraction coping method for a very long time. I'm mostly tied to my bed because of my pain and chronic illness so subeta is definitely a positive outlet for me for when I'm really down about everything. If I can get enough people to come out and say "Hi" maybe I will make a little support group on here~
I've had several different, probably connected, issues for years now. Let's see...depression, anxiety, sociophobia, misophonia, misokinesia, and just recently found out I have thyroid issues. I'm fairly certain, although undiagnosed professionally, that I am on the autism spectrum as well (due to the first 5 issues listed before). I'm also undiagnosed with OCD, but definitely have it.
My thyroid issues stem from a nodule that was found on the anterior aspect of the right lobe about 6 months ago. I had a radiotopic iodine treatment in February and I will find out at the end of this month whether that did anything or not. I really hope it did, because being hypothyroid is such crap. It's a distinct possibility that it could be causing all the aforementioned issues, as well as my inability to lose weight.
As far as a 'positive outlet' though, I use Subeta for that too. I get really depressed at work, especially when I get bored or stressed out with people, so I play Subeta. Thank everything that I sit at a desk and I'm allowed to go online...well...not so much allowed I guess, as "What boss lady doesn't know doesn't hurt her (or me)" lmao
Hello there ^^ so glad you could make this thread. Though I don't have chronic pain, I would most definitely not mind helping any way that I can. I can't imagine how uncomfy it can be, and I do hope things continue getting better for you.
I do in fact. I have BPD and Social Anxiety, I work and things like that and I am also a single mother who is enrolled in school. Sometimes though, life gets a little hard and I can't even leave the house, a lot of nights I don't sleep, sometimes I go days without eating. I have a hard time functioning like a normal human being. Subeta is a place where I can let my freak flag fly, or so to speak. I am able to myself and because I am behind the protection of a screen, I don't feel threatened. Besides, having something to put that negative nervous energy into, helps me a lot. So yeah, I have become a bit devoted to this site for that reason. I do genuinely love my pets, just like I would a real one. It just...makes me feel better.
I'm happy I got a few responses ❤ Thank you
I have many physical and psychological problems my list of symptom and diagnosis are paragraphs long but to make a long story short a lot of my problems are digestive. I've been only able to tolerate a thin liquid diet for over 11 years now. I have been managing chronic pain for over 13 years. I deal with a lot of PTSD symptoms in my day to day. Severe depression and anxiety and that's where subeta definitely comes in as a "safe place" for me.
I may just start a support group on subeta if it interests people~
Also thank you for the kind words ❤
@ Nellerz My mom had similar problems when she was alive. I am sorry you have had to deal with that most of your life, but it makes us stronger people. Doesn't mean it doesn't suck. I would die without pizza O.O (I'm a fat kid)
Hey, if you made a support group I would join :D Sounds like the positive energy we could all use in our lives right now.
I can relate to this a lot. For the past couple years, I've been dealing with chronic pain. It came out of virtually nowhere. I just got sick one day and since then it's been one thing after another.
My fiancee' has BPD, I just learned this year so it's been pretty hard to understand. But i'm trying really hard to understand. I see her working so hard, and it's got such a terrible stigma behind it. :/
I'm not sure if you guys are in a legal state? But since i refuse to take pain medications. (Not that there's anything wrong with them Just a personal preference) I only smoke, or take cannabis tinctures. It does wonders for my wifey. Helps her eat, and be able to take her meds.
Yes, everyone tries to say it doesn't exist, that we are just being bitches. No...No we're really not. It can stem from your parent if they had it, or a life time of abuse. Mine came from a life time of abuse. Either from my brother or my mother. My father walked out when I was 8. I don't contribute him with shit, other than giving me half of my DNA.
I am 420 friendly, but no it isn't legal where I live. Yet. They are talking about passing it for medical, and when they do I know I am going on the list of patients, because people with BPD are seen as chronically ill people in the medical community. Which...we are. It is harder to understand, because it's not something you can see on the surface. You have to closely watch our behavior, or know us period. Where I am concerned...it doesn't take much to realize something is wrong. I am very angry, or manic. Which means I am either grumpy bear, or I am bouncing off the damn walls. There is no real middle ground, and forming relationships with others...is almost impossible. Your wife is very lucky to have you. But yes...I take medication and I smoke as well to help with what the pills don't and it does wonders. I am able to work and put on a mask for the public, and most importantly, when I am at home, I can be myself without worry.
Ugh, I hate that stigma, that's so far from the truth, people with BPD feel emotions 10x stronger then others. I'm really sorry that you have to go through with that. My wifey has struggled with a seizure disorder for years now, she tried getting on disability and they denied her 2 times. It took 5 years total, and they only really gave it to her because of the BPD. I know it can be totally debilitating. I'm disgusted that people can't except cannabis as medicine. Sometimes it's really the only thing that helps with her mood. Q_Q
(Also a side note, But I always call her my grumpy bear. lol)
It's okay, it was always my brother and his wife that said it. The rest of my family knows better, they are just a special brand of stupid. lol
That sucks that is took that long for her to get it :/ Thank goodness she got it eventually. Yeah I have BPD and social anxiety, but I didn't want to take out disability until I am older. I figure I will really need it then, I make more money working. I work in fast food. Management at that. My therapist says I am her walking miracle, but that doesn't stop me from having the occasional come apart when something really bad happens.
The stigma is strong, but the more awareness that is brought to light about the situation, the more people like me have a fighting chance to be a part of society. I fight for people who are like me and I try to give us all a voice when I can.
Sorry, her family is kinda like that as well. Her mom is so selfish she thinks that she does everything on purpose and holds it against her. Wow, that's really awesome, It gives you lots of people practice. Im always trying to urge her to get out and socialize too, I understand it's hard but I know it will help in the long run. Right now we're working towards her getting back into school. She was working and going full time before her epilepsy got really bad. Being an advocate is very important especially with a misunderstood condition like BPD.
Huff, moe feel free to join in at anytime. lol :o
@ Treecko
It does, but it also teaches me patience and when it is okay to...express certain things and when it isn't. Self control is key...I still get in trouble some times due to my mouth though lol but it is a lot better than when I got started. I threw tea at a customer once. To be fair she had me change her tea ten different times, harassed me for lemons and then pitched a fit cause we didn't have splenda. A monk would have lost it.
Getting the courage to step out can be very hard. Especially if someone with BPD has been an introvert for a long time. They will react like cats to water. However; it seems to like she has a very good partner, I don't think you will let her drown. Just be patient with her, don't push her too much, but definitely keep bringing it up to her say...every OTHER day? Persistence is key, but smothering is toxic. Every body is different though, what worked for me, may not work for the next person.
I try, I actually have groups and things on Deviantart, and I try to put the word out at much as possible.
Customer Service can be terrible, I've worked as a cook for a few years now. People have ridiculous demands and can be incredibly rude when they feel unsatisfied.
That's one thing I can pride myself on, is that I know i'm a very patient person. It's just frustrating.
But, wow that's pretty awesome! We both use DA as well, she was working on a photography major in school. Art can be so therapeutic, Especially when your kinda of a shut-in like myself. lol
I would love to join a dA group, any group really. It's refreshing to know you're not alone. And for me, it makes me feel a lot less crazy.
I have zero self-control. I end up being a shutin just to avoid potential "issues". And online, my anxiety keeps me alone, tooscared to reach out ):
I am actually in school for graphic art right now. It is all online, but they are doing this thing where I live where you can go two years free if you're an adult. Which is pretty cool.
I write a lot of graphic novels for my outlet. I create stories. A lot of characters are based on certain emotions. It's weird, but it gets me through lol
@ Handsome I did the same for years, then my mom died. I have a four year old son, he was two at the time. I realized I couldn't hide forever, it wasn't fair to him. Eventually I snapped in a big way. A kind of "HERE I AM, YES I AM CRAZY SO F****** WHAT! DONT LIKE IT TOUGHT" response to everything. I went from there lol
Eventually...once I made myself and my boundaries clear, I was able to see that I can be someone who has a social life, but it did take some serious time and a lot of hiccups. A lot of being embarrassed, but I got through it. I still have moments, but I accept that is part of who I am. I hope you find your niche in life, so you don't feel like you have to shut yourself away anymore.
Spoonie ftw. Currently drained and just reading. Fingers hurt now. But just waving my flag! Support group would be great.
I enjoy drawing, and creating characters as well. I want to make a freebie forum again. Just not feeling super inspired. x.x It's been hard with my mood lately.
Sorry everyone for the late response. Depression and chronic fatigue is hitting me hard. I did make a group that everyone is free to join it's "Spoonies Of Subeta" or . In my ten years of being on subeta I haven't made a group so I have no clue what I'm doing but I will just fake it till I make it lol. I'm pretty generous with my SP and I love to give surprise WL gifts on subeta ❤ Also anyone is free to add me as a friend if they wish to~
I'm sorry about your mom ;-; It's sure miserable. I'm currently dealing with heavy metal toxicity treatments. It's been a rough 13 years that's for sure, It gives us empathy that many others don't have. Thank you for the friend invite ❤
I'm sorry that's very much how my pain started out of the blue with no real explanation. :c
I just made one :) Feel free to drop in and out whenever you want~