Welcome to Gaia! ::


Tenacious Glitch

24,050 Points
  • Partygoer 500
  • Perfect Attendance 400
  • Newbie Helper 100
This is my first time posting in this forum so here it goes. I'm 26, female, and have been using a wheelchair and crutches since I was 14. I was doing laundry and fell down some stairs. I used to have spasms in my legs for eight hours non-stop until my neurologist that I've had since I was a kid for my childhood epilepsy told me to try Benedryl. So my spasms occur all the time all over my body, but are less severe most of the time. My long list of invisible disabilities are Fibromyalgia, Osteoarthritis, torn ligaments in both ankles, chronic back pain, and muscle spasms. Recently I've had Mono and now an elevated liver. I'm facing a lot of pain lately especially since I got Mono back in October.

My three questions to any other Gaian that has to face an invisible disability are:
How do you cope with the emotional stuff that comes with the physical pain?
Have you had to make adjustments in your lifestyle?
What kind of invisible disability are you facing? (I love reading stories.)

Obsessive Shoujo

18,750 Points
  • Millionaire 200
  • Wall Street 200
  • Cool Cat 500
Mine aren't nearly as severe and as much as yours.. but talking to people, internet, gaming, working to the best of my abilities and to some extent yes which causes me great anxiety.

Tenacious Glitch

24,050 Points
  • Partygoer 500
  • Perfect Attendance 400
  • Newbie Helper 100
Kirenisia
Mine aren't nearly as severe and as much as yours.. but talking to people, internet, gaming, working to the best of my abilities and to some extent yes which causes me great anxiety.

Aww you get anxiety from talking to people? I had a friend that had that. I'm a shy person myself in real life and I have like a phobia around crowds. Thanks for sharing your story. I hope posting on Gaia doesn't cause you too much stress.

Obsessive Shoujo

18,750 Points
  • Millionaire 200
  • Wall Street 200
  • Cool Cat 500
Scobre
Kirenisia
Mine aren't nearly as severe and as much as yours.. but talking to people, internet, gaming, working to the best of my abilities and to some extent yes which causes me great anxiety.

Aww you get anxiety from talking to people? I had a friend that had that. I'm a shy person myself in real life and I have like a phobia around crowds. Thanks for sharing your story. I hope posting on Gaia doesn't cause you too much stress.
Not so much anymore, I use to be extremely shy about posting but I've adjusted some what I appreciate you're understanding you sound really nice. c:

Tenacious Glitch

24,050 Points
  • Partygoer 500
  • Perfect Attendance 400
  • Newbie Helper 100
Kirenisia
Scobre
Kirenisia
Mine aren't nearly as severe and as much as yours.. but talking to people, internet, gaming, working to the best of my abilities and to some extent yes which causes me great anxiety.

Aww you get anxiety from talking to people? I had a friend that had that. I'm a shy person myself in real life and I have like a phobia around crowds. Thanks for sharing your story. I hope posting on Gaia doesn't cause you too much stress.
Not so much anymore, I use to be extremely shy about posting but I've adjusted some what I appreciate you're understanding you sound really nice. c:

That's good. It's ok I was the same way when I first joined Gaiaonline too. It took me awhile to even post or read forums. I just stuck to zOMG! I've been using that game as a painkiller and it's helped a lot. I'm still a shy person, but nice to meet you. I'm not used to posting in this forum, so it's new for me. I try my best to apply the golden rule in my life. Like I realize that there are people behind screens that if something I post can be taken the wrong way really easily, so I try to be nice. I'm generally a nice and goofy person both online and off. It's just been hard reflecting that in forums. It helped sharing my story today and was like ok what forum on Gaia can I talk about it and I find Life Issues, so I was happy to discover a new forum I've never explored yet.

Kitten

How do you cope with the emotional stuff that comes with the physical pain? At first I didn't know how to handle any of it. Now I just take it in stride..

Have you had to make adjustments in your lifestyle? Well it's put a damper on a lot of the sorts of work I can and can't do. The doctor doesn't want me lifting anything over ten to fifteen pounds, he wants me to work office work of some sort because he worries that too much physical labor could make my back problems grow faster.

What kind of invisible disability are you facing? (I love reading stories.) Last year I started having really bad back pains.. And for months I was told it was a pulled muscle, was told to take it easy. I did and things only got worse, it went from nagging pain to excruciating pain that made it so I couldn't even bend over to tie my own shoes.. At night when I went to bed I couldn't sleep because it felt like razor blades were cutting at the inside of my legs.. So after trying to cope with my back and the pain in my legs and failing I decided to go to the ER only to be told the leg pain was sciatica and the back was still a pulled muscle.. Well months went by nothing got better so I went back because had another day of not being able to hack it.. This time they did an MRI and found out that I have herniated disc's and bone spurs all in my lower back.. So I was referred to a neurologist and physical pain doctor, along with doing physical therapy for a few months. Things are now quit tolerable.. Back pain has really calmed down except for when the weather chances and or I do too much. The sciatica will probably never go a way unless they decide the bone spurs are really causing a lot of problems being where they are, so I get a lot of funky sensations sometimes.. But I've adapted.

Peculiar Doll

I have fibro too, my other one is lupus.
I often cry myself to sleep because of the pain I'm in... And then again when I wake up and it feels like I didn't sleep at all. I cope by making sure I get hugs, even if they're from a soft toy or cats.

I never thought that I would be able to, or could have a long term partner, but living with my partner means that I get cuddles a lot when I can stand to be touched... That helps a lot. Even when I can't stand to be touched, him being around helps, just like having my cat around did.

You can guess how the fibro has limited my life. I have blackout blinds, I sometimes carry a parasol even in winter because the sunlight can trigger a flare. I can't walk far, so I go everywhere by scooter - driven by my partner usually, as he has arthritis and struggles to walk far anyway. Sometimes I have to take handfuls of pain killers, which eventually become useless. My pain tolerance has become stupidly high, despite the amount of pain I'm in, or perhaps because of it. So I have to be aware of when I accidentally hurt myself and don't notice because the pain is simply another bit of pain and is thus dismissed. I've nearly broken a toe because of that before.

I live a kinky lifestyle and under my clothes I often wear rope, simply because it seems that body harnesses help me to feel that the pain is under my control. It helps me feel grounded and I stop getting frustrated at my weakness, pain and the nerve spasms I randomly get.

I sleep so much, often miss uni because I can't get to the bus stop on my own because of pain some days...but the scooter is infinitely helpful, as is living somewhere which has a good bus route.

Those are just my physical problems.

I think having good comforting things around helps, and having a living being - human or otherwise to hug.

Beloved Lunatic

10,800 Points
  • Generous 100
  • Gender Swap 100
  • Tooth Fairy 100
I have Autism, ADHD, and Juvenile onset rheumatism. But my Arthritis isn't that bad, mostly just in bad or cold whether and aspirin takes care of it. Most of my pain has been emotional. Just learning about my autism has helped a whole lot, you see when I was young Asperger's syndrome (My form) wasn't even on the books, and most doctors would do everything in their power to avoid diagnosing milder cases of autism because of the stigma attached to it, if they even knew about it, many didn't because it was so hushed up. so I spent a whole lot of my life not understanding WHY I was the way I was and what was wrong with me.

Now that I know I know I am not crazy, and I am not bad. So many people thought I was being 'bad' on purpose. I still don't know why I was considered bad, except for the melt downs, which I really couldn't control. Meltdowns are indescribable painful emotionally and exhausting, it's even worse that they look like tantrums but you really can't stop them. But now that I know what a melt down is I can try to avoid situations likely to lead to one or leave if I start to feel overwhelmed. (Or at least apologize and explain what the hell just happened.)

I think maybe in part because I sometimes can come across has rude because I didn't naturally pick up social skills like a neurotypical person and can't read people. If they smile, I can't see that it is fake and they are secretly angry with me, I assume it's genuine. I since I don't always smile I don't see the lack of a smile as a signal something is wrong. Unless they tell me I won't know I've messed up until they scream at me. (which usually triggers a melt down or a complete shut down)

But you know what, I wouldn't change a thing about my autism. It was painful when I didn't know, there were many nights I cried myself to sleep. But it is a part of me, and many of the characteristics I love about myself are due to my autism. My obsessions which bring me so much joy to study. (science, history, and animals mostly) My ability to truly enjoy watching the same movie everyday for a month. I truly love stimming (repetitive, soothing behaviors), especially flapping and rocking. I like being an individual who can (has to) walk to the beat of her own drum. Autism isn't all pain and gloom like certain groups would have you think, it has its good points to. I just wish I'd known earlier, I could have saved myself a lot of heart ache.

~Plum~'s Significant Otter

Super Giver

10,250 Points
  • Super Tipsy 200
  • Streaker 200
  • Mark Twain 100
damn...I wouldn't call those invisible. they seem to really be affecting you.

personally, I have social anxiety. I HATE big crowds. I used to try and work through it, but realized that there is nothing wrong with it. I just don't go out much. I tend to stay home. I ment my ex wife and my current girlfriend online (my girlfriend I actually met on here). I just have an easier time being myself online. that could be that I don't really like eyes on me.

Magical Lover

11,575 Points
  • Senpai's Notice 100
  • Millionaire 200
  • Forum Regular 100
Scobre

My three questions to any other Gaian that has to face an invisible disability are:
How do you cope with the emotional stuff that comes with the physical pain?
Have you had to make adjustments in your lifestyle?
What kind of invisible disability are you facing? (I love reading stories.)


I'm going to answer these in reverse order if you don't mind. :3

3.) The invisible disabilities that I am facing are ADHD and Anxiety. I've always had problems dealing with certain things that I find out or learn about from the news or whatever. Even though no one would figure out that I had anxiety, I have it quite bad. Only my boyfriend knows the full extent of my anxiety. I would endlessly worry for weeks on end and this anxiety really isn't just worrying, to be honest with you, I would have weird irrational thoughts, fear of my medication, crying spells that would last almost all day, and I would research what ever I am worrying about until I get tired, or something. Sometimes I would forget to eat. ^^; I've had a doctor label my anxiety as borderline obsessive, and severe.

As for my ADHD...I have combined type. I have all of the symptoms that you could list. No one could understand that I had ADHD, so when ever I had extreme difficulty understanding something, people would get angry with me and sometimes yell at me or give up explaining things to me just because I couldn't get it right off the bat. This would, in turn, trigger my anxiety...that no one would be aware of. I also have difficulties staying still and handling stress and pressure because of ADHD, my threshold for those kinds of things are abnormally small (I hope that's the correct word for it) so I tend to flip out easier when placed in a very difficult situation. People wouldn't understand why I did such things. Either that, they were dead set on telling me that nothing was wrong with me, which really pushed me over the edge some days...Oh, I feel as if I am just rambling now, sooooooo...I'm going to end it right here and answer the next question. Sorry.

2.) Yes. I have tried to make PLENTY of adjustments to my lifestyle from...controlling what I read in the news, to attempting to control how long I spend online. (for my Anxiety)...all of which ended in failure. For ADHD I tried controlling my impulses, to taking some time to gather myself in a situation where I am very upset...just so I wouldn't hurt the person standing before me (I have a tendency to hit things when angry...either solid objects or people.) These methods helped me control my ADHD when I am not on medication.

1.) Hmmmm...ADHD really doesn't give me any sort of physical pain. . .but Anxiety and stress does, if that counts. You know, the Anxiety Attacks or Panic Attacks that come in that package? Well, whenever I have a Panic attack, and I am suffering from the symptoms like racing heartbeat, shortness of breath, headaches, intense fear, etc. etc. I try to take deep breaths and assure that I am okay. I'll do things to take my mind off of it, which could be playing games, playing my clarinet, listening to music, or get my boyfriend on the phone to converse with me. Or just talk to my grandmother and get her to make me laugh. A lot of the times it'll work. The only times I couldn't do this is when I have panic attacks in my sleep. Then I am kind of stuck because these would happen 3 or 4 o'clock in the morning. I attempt to do everything in my power so that I don't have to resort to medications to resolve my problems with anxiety, though that's....kind of not working as my anxiety slowly grows worse.


I hope I didn't write too much. ^^;

Interesting Autobiographer

11,800 Points
  • Dressed Up 200
  • Citizen 200
  • Generous 100
I'm leukemic and I don't take treatment. Plus I'm 35 weeks pregnant. I have to sit in a wheelchair when I go somewhere Because I can't stand up for long periods of time. People look at me like "Why is that healthy girl in a wheel chair? She looks fine!"
I've even had an older woman approach me at the grocery store and tell me I was pathetic for using a wheel chair when other people could need it and I needed to stop being lazy..

It makes me very anxious to go anywhere because I'm scared to be judged for it.

Tenacious Glitch

24,050 Points
  • Partygoer 500
  • Perfect Attendance 400
  • Newbie Helper 100
Marrmee
How do you cope with the emotional stuff that comes with the physical pain? At first I didn't know how to handle any of it. Now I just take it in stride..

Have you had to make adjustments in your lifestyle? Well it's put a damper on a lot of the sorts of work I can and can't do. The doctor doesn't want me lifting anything over ten to fifteen pounds, he wants me to work office work of some sort because he worries that too much physical labor could make my back problems grow faster.

What kind of invisible disability are you facing? (I love reading stories.) Last year I started having really bad back pains.. And for months I was told it was a pulled muscle, was told to take it easy. I did and things only got worse, it went from nagging pain to excruciating pain that made it so I couldn't even bend over to tie my own shoes.. At night when I went to bed I couldn't sleep because it felt like razor blades were cutting at the inside of my legs.. So after trying to cope with my back and the pain in my legs and failing I decided to go to the ER only to be told the leg pain was sciatica and the back was still a pulled muscle.. Well months went by nothing got better so I went back because had another day of not being able to hack it.. This time they did an MRI and found out that I have herniated disc's and bone spurs all in my lower back.. So I was referred to a neurologist and physical pain doctor, along with doing physical therapy for a few months. Things are now quit tolerable.. Back pain has really calmed down except for when the weather chances and or I do too much. The sciatica will probably never go a way unless they decide the bone spurs are really causing a lot of problems being where they are, so I get a lot of funky sensations sometimes.. But I've adapted.

Thank you for sharing your story. I hope you find an office job soon. Spurs are painful from how my mom describes them. I'm glad you are feeling better and hang in there with the extreme lows and high temperatures. Yeah I've learned to take life one day at a time.

Tenacious Glitch

24,050 Points
  • Partygoer 500
  • Perfect Attendance 400
  • Newbie Helper 100
Akiryn
I have fibro too, my other one is lupus.
I often cry myself to sleep because of the pain I'm in... And then again when I wake up and it feels like I didn't sleep at all. I cope by making sure I get hugs, even if they're from a soft toy or cats.

I never thought that I would be able to, or could have a long term partner, but living with my partner means that I get cuddles a lot when I can stand to be touched... That helps a lot. Even when I can't stand to be touched, him being around helps, just like having my cat around did.

You can guess how the fibro has limited my life. I have blackout blinds, I sometimes carry a parasol even in winter because the sunlight can trigger a flare. I can't walk far, so I go everywhere by scooter - driven by my partner usually, as he has arthritis and struggles to walk far anyway. Sometimes I have to take handfuls of pain killers, which eventually become useless. My pain tolerance has become stupidly high, despite the amount of pain I'm in, or perhaps because of it. So I have to be aware of when I accidentally hurt myself and don't notice because the pain is simply another bit of pain and is thus dismissed. I've nearly broken a toe because of that before.

I live a kinky lifestyle and under my clothes I often wear rope, simply because it seems that body harnesses help me to feel that the pain is under my control. It helps me feel grounded and I stop getting frustrated at my weakness, pain and the nerve spasms I randomly get.

I sleep so much, often miss uni because I can't get to the bus stop on my own because of pain some days...but the scooter is infinitely helpful, as is living somewhere which has a good bus route.

Those are just my physical problems.

I think having good comforting things around helps, and having a living being - human or otherwise to hug.

I've spent many nights crying myself and wow fibro and lupus, hang in there. emotion_hug Cats and stuff animals help a lot. I have a kitten now who is like a hot water bottle which is wonderful for fibro and my aunt who also got me a stuff animal that has like a lavender pack inside I can heat up in the microwave.

I live with my parents as well and I'm so happy you found someone to take care of you. Huh that's interesting sun makes you flare up. Usually it's just stress or cold weather for me. Yes people with fibro have a higher pain tolerance even though we may feel pain all over. That's good you have a scooter to get around. That's a good idea about the rope. I should find an object to make me feel like I have some control. I think you are the first person I've met who also gets spasms with the fibro. I usually sleep a lot too, just not lately, so don't feel bad about it. Good luck with college. I was somehow able to do college myself thanks to disability services. Thank you for sharing your story and here is a hug. emotion_hug

Agile Paladin

13,025 Points
  • Perfect Attendance 400
  • Firestarter 200
  • Senpai's Notice 100
All of my disabilities are invisible.

I've had epilepsy since I was three years old, and I'm 24 now. My epilepsy is well controlled, and I haven't had a seizure since about 2006. It sucks having to take medication all the time for it, especially since it's my most expensive medicine to take. And I also fear driving because I'm afraid of having a seizure while driving, and do not want something bad happening if that happens. I completely black out when I have them sad

I was also recently diagnosed with depression and anxiety, yet, I know that I've been suffering with this for quite a few years now, maybe even longer than that. It's hard to make people understand how I feel, and why. Even though there are times when I cannot explain why I'm suffering so much mentally, which then affects me psychically as well when it gets bad enough.

Also I have a feeling I'm starting to develop carpal tunnel in both of my wrists, and something in my knees as well because of my line of work D: (but I haven't seen a doctor about this yet, I have too much on my plate already to be dealing with this)

Spoopy Kitten

How do you cope with the emotional stuff that comes with the physical pain?
Try to take my mind off the pain. Use heating pads, medicines, ect to dull the physical pain as much as possible, then do something i like. Such as, watch a movie or play a video game

Have you had to make adjustments in your lifestyle?
So many! I have restrictions on walking, laying, sitting, standing, running, how much i can lift, ect. My 'every day life' changed so much after the event. Which sucks on so many levels, but whatever

What kind of invisible disability are you facing? (I love reading stories.)
Ive got a panic disorder, kidneys are bleeding (watching me closely for lupus), over sensorary disorder, over sensativity disorder, i had bad scoliosis which we "fixed" with a 12 level fusion spinal surgery when i was 14 - the surgeon messed up which is why im so limited on my activity now - and probly more i cant even think of. Its wonderful feeling this old when im only 18 emo

Quick Reply

Submit
Manage Your Items
Other Stuff
Get GCash
Offers
Get Items
More Items
Where Everyone Hangs Out
Other Community Areas
Virtual Spaces
Fun Stuff
Gaia's Games
Mini-Games
Play with GCash
Play with Platinum