What's your condition? (Friendly discussion)
Hello there! It's EmpatheticJem!
I've seen a few threads on this site and have commented on some. But I thought it'd be cool if we could introduce ourselves and (if comfortable) discuss our disability and answer any questions people may have.
So to start, I have nemaline myopathy. It is a rare genetic disorder that makes my muscles weak and my joints loose. It also means that I am in chronic pain.
It doesn't get me down though! It is a part of me, and I wouldn't want to live without it 💕
Tell me about your beautiful selves. I'd love to hear from you and provide whatever support I can.
We're all in this together.
I have 10 "gifts". Adhd, anxiety, bipolar, depression, developmental disability, Dissociative identity disorder, intellectual developmental disability, learning disability, ptsd, and schizophrenia.
I don't work or go school. But I love to color, nap and play tennis.
@Did1and1dandan
I relate to some of them. But I am ashamed to directly state them.
@DistortionHeart
Not sure if anyone will ever talk to me.
@DistortionHeart
Aww why do you think noone will talk to you? And yeah I'm pretty anxious about putting everything down..... Tbch
@Did1and1dandan
I feel like some people don't understand it. I know some people might. But it breaks my heart when I can't express myself properly. Yes it makes me feel like I can't be here when I tell them. That I'm not allowed to be on this site because I have those conditions. (this is so frustrating I was typing my reply but it got erased by a pop up I'm trying not to get mad or lose all will to even reply anymore)
@DistortionHeart
Yeah it totally hurts when people exclude us because of our disabilities.
@Did1and1dandan
Yes or doesn't have any compassion towards how you feel because they don't understand how you feel because they think you're too unwell.
@DistortionHeart
Mhm we need to be more included of everyone.... Knock down the barriers
@Did1and1dandan
I agree.
@DistortionHeart
I'll talk to you. I'm Skye, nice to meet you.
@DistortionHeart
I'll talk to you.
@DistortionHeart no shame just embrace it
@Angelpurple
I know that in the end I can only relie on myself. I cannot trust people enough as they are too unpredictable but I know myself deep down.
@Did1and1dandan
@zaatarHoney Awwww thank you 😍😍
Low stress hold. Overwhelmed quickly and often.
@DistortionHeart
How do you cope with the low stress and overwhelming feelings?
@Did1and1dandan
My head shuts down and I can't think.
@DistortionHeart
I usually dissociate......
@Did1and1dandan
Sometimes I do the same and it's very disortientating.
@DistortionHeart
Yeah.
@CheerfulDan I too dissociate. I go into autopilot or what my friend calls "beast mode" where I become something that can't be reasoned with. I can build a bookshelf in a fraction of the usual time in this mode. Then I snap out of it and wonder what the hell I've done.
@EmpatheticJem
I have hEDS, POTs, psoriasis, IBS and asthma.
@MythologicalMayhem
Thank you for sharing with us.
@EmpatheticJem
I was born with cerebral palsy which caused me inability to walk and general muscle weakness. I got my first electric wheelchair when i was 4. When i became adult, i developed osteoarthritis and osteoporosis as my bones and joints didn't get enough exercise as i couldn't walk.
I have got a caregiver who cares for me, helps me transferring from bed to electric wheelchair and from electric wheelchair to bed, dressing, cleaning, personal hygiene (transferring from electric wheelchair to toilet or to bath, etc), cooking, bringing heavy groceries home from supermarket, reaching high shelves in supermarket, etc. I also need a lot of rest as i haven't got as much energy as other people around me have. I do everything more slowly than expected from many people around me.
@gentleSun78
Thank you for sharing your condition with us. It's really helped me understand you a little more.
@ShadowDance thanks!
@ShadowDance, have you got a disability?
@gentleSun78
I was meaning to reply but i must have lost track of the time. It flows in such a way it can be so easy to lose but so precious to grasp. I used to have some early childhood conditions that vanished with the time. Although it has made an impact on how my brain functions in it's structure right now. I am living with schizophrenia and social anxiety that becomes overwhelming and paralyzing. I am writing poetry and painting. Using my feelings and experiences as inspiration to create these pieces of art. I would say it is going well but I go long stretches of time without accomplishing anything at all.
@ShadowDance i am glad that you are able to cope with your condition and that you have got a creative hobby you enjoy.
I've been diagnosed with psychosis depression and ptsd I have 3 children who are the reason I am alive! If it wasn't for them I doubt I'd be ere some days are harder then most been livin in hell the last 2 years just a hole I can't get out off but Yee am still here battling through this thing called life 😬 hope to feel at peace with myself and my life soon don't think I can handle much more. X
@Grme18
I can relate to you too.
@Grme18
It's beautiful to have such children to help you through these times. Some often say that it's not the parents that protect the child, but the child who protects the parent. Embrace those beautiful people you have around you never forget your love and their love for you. Thank you for sharing with us.
Multiple Sclerosis. I've been recently diagnosed, but, looking back I realize I'd been overlooking, ignoring, or writing-off symptoms for years. I'm certainly the type to wait until something becomes unavoidable before I even begin addressing it.
Treatment is going well so far, but I feel a lot of anxiety when I think about years and years of it piling up throughout the rest of my life.
That's all I've got, but thank you for starting this thread; I have a tough time jumping in to communities and this was a wonderful way for me to make a move in that direction.
@StandardFace
Yeah sometimes it's easy to overlook or deny symptoms for a long time my mom is guilty of doing that and I've been like her sometimes too.
@StandardFace
I'm glad you took the courage to jump in with us. Welcome here. You have nothing less than our support. Thank you for sharing with us.
I have c-ptsd, anxiety and major depressive order. It hits me in waves. Like at tha beach a wave will crash into the shore but it recedes
@gene2017
I understand how that can be overpowering for you. It's rough to be hit by a sudden wave like that it's a shock to the system. Thank you for sharing with us.
I have anxiety, light sensitivity (mild) and I am hard of hearing. It's harder as my family doesn't entirely believe I am hard of hearing. Plus even if they all believed it I still couldn't afford hearing aids anyways.
@TheWittyNectarine
I undestand how it feels to have anxiety as well as the light sensitivity also bothers me at times. Combining social anxiety and sensitivity to your surroundings is so overwhelming and so often misunderstood. Thank you for sharing with us.
@ShadowDance
Thank you for the kind reply. I honestly built myself up for a hour before posting. So thank you!
@TheWittyNectarine
No need to thank me. I appreciate that you have acknowledged my words. It means a lot to me.
@EmpatheticJem
I have a hearing disability. As my hearing loss is severe/profound, wear hearing aids. Have had sessions of depression too.
The other day I jumped on a train, didn't know that it wasn't stopping at my station as I couldn't follow the verbal announcements....such is life.
Hey, with these symptoms, of course it's very difficult to live a full life, but it's great that you have a hobby. Have child my known recognized ADHD and they use in during 3 months Strattera and this them helps very well, incidentally if you interested in the you can visit site and this for them was the most conveniently, of course all very individually and requires consultation practitioner neurologist.
