Ima_Jenn

@imajenn
I am 45 and; have been on disability since 23. I have a brain injury that can make social navigation challenging. I have a lot of 'imaginary hobbies' right now because i cant physically perform them anymore. I really like people, but struggle with the insecurity of whether someone likes me back. I previous Psychologist thought I have ASD level 1 (formerly known as Ausperger's) and; a 2010 mTBI (mild traumatic brain injury) causing Cognitive Communication Disorder threw an additional spanner in the works. I am trying to reach out more. Pre mTBI i was a mod on a narcolepsy support forum. Now my spoons go to changing out of jammies/yoga pants, fix my hair, learning hacks to better use spoons. Reaching out into support community, figuring out what living my best life actually entails. I have multiple complex chronic conditions not limited to Narcolepsy with Cataplexy, hypermobile Ehlers-danlos aka hEDS, Disautonomia, panhypopituitarism (my pituitary doesnt call my glands to make hormones), CVID (trouble making antibodies) some kind of bone breaking disorder, chronic pain, several undiagnosed WTFs that have my drs puzzled and Sjogrens & another autoimmune disorder Drs can't puzzle out. hEDS is a lot like Fibromyalgia (which i could have but it cant be teased from hEDS). Disautonomia gives a lot of FM and CFIDS/ME symptoms...I've been through the ringer both medically and disability (SSDI and Disability insurance. I am pretty good for questions about the process and have resources that can help you get benefits easier)... it is OK to ask about any of my medical stuff or give well meant unsolicited advice or guesses. I just found out about spoon theory and am trying to share life hacks. Medical questions and suggestions dont offend me. I have two cats and a husband (who is really more of a chauffeur right now)...I want the magic and love back...this is probably the hardest thing i am going through. I can only be/control me. I love people but have trouble making friends. Not because im mean but more social rules are complicated and always knowing the rules of how to engage. My cognitive communication deficits plus a lack of energy doesn't help.I want that to change /relearn the skills I lost in the head injury and being an introverted extrovert). I just moved back to the south and my limited social network is gone. I want to build a better one. I'm open minded and i think easy to talk to. I really care. Emojis help me understand sentence context. Feel free to message me if you need support, have questions. I AM NOT LOOKING FOR A ROMANTIC CONNECTION. THIS IS S SUPPORT BOARD NOT S DATING SITE. I WILL BLOCK ANYONE WHO CROSSES THIS. LINE. -
Community Voices

Hi!

Hi my name is Kate and I just got diagnosed with hEDs and I am also a gymnast and I am wondering if any of you have any tips about hEDs.

10 people are talking about this
Community Voices

Hi!

Hi my name is Kate and I just got diagnosed with hEDs and I am also a gymnast and I am wondering if any of you have any tips about hEDs.

10 people are talking about this
Community Voices

I have insomnia, so have to medicate myself. The last few nights I have been waking up with shoulder pain from my shoulder subluxing. Suggestions?

8 people are talking about this
Community Voices

Hi!

Hi my name is Kate and I just got diagnosed with hEDs and I am also a gymnast and I am wondering if any of you have any tips about hEDs.

10 people are talking about this
Community Voices

Just a bit on chronic pain, not really a poem it's just been rattling around and I had the need to get it out. #Pain
#ChronicPain

Forever a Shadow haunting myself.

Chronic Pain
It lives with me
It's my constant companion
I want to roll around on the floor crying and wailing
Begging the gods to stop my suffering
But I know it does no good.
All it does is give me a headache from crying.

If someone shattered my leg in four places I probably WOULD drop on the floor and not get back up and cry and wail.
But that is different. It's acute and shocking.
Not driven into every cell of my being like chronic pain is.

Not into my very psyche. As close as my most hated enemy, or my dearest friends.

It feels like I have ripped away parts of who I am to send it to that internal prison. A microcosm, but still a part that needs free-range to make you whole.

But I can't give it free-range or I won't survive.

So,
I build a wall of prison bars around that part...and bury it into a back corner of my mind.

But it is always their haunted asylum-like wails eating their way into my nearly every present moment.

I build that prison with pieces of love I would give to others. Bit of compassion. Smiles. My calmness and my patience. Pieces of my passion, my art, the things I love. Bits of enjoyment and happiness and warm smiles for others. I'm sure it's built with other things too...

for some, maybe your darker side, but it doesn't really feel like that to me. If only that went there in balance too. It seems like building the cage less my darker parts be more free.

I snap more easily, care a bit less.
It's from the constant wails of the part of me echoing up the corridors of my mind.

I don't feel like anyone that doesn't have chronic pain can really understand what it is like. To imprison a part of yourself and create a psychic would that lays open
Just ask you can get out of bed, and smile, and do some of the stuff you want.

Forever a shadow haunting yourself.

To all my Mighty Friends. Been so busy with drs and chasing sleep.i really haven't had time to be around as much as I used to. 💕
Thanks for understanding. Spoon drawer is pretty bare these days.

4 people are talking about this
Community Voices

Just a bit on chronic pain, not really a poem it's just been rattling around and I had the need to get it out. #Pain
#ChronicPain

Forever a Shadow haunting myself.

Chronic Pain
It lives with me
It's my constant companion
I want to roll around on the floor crying and wailing
Begging the gods to stop my suffering
But I know it does no good.
All it does is give me a headache from crying.

If someone shattered my leg in four places I probably WOULD drop on the floor and not get back up and cry and wail.
But that is different. It's acute and shocking.
Not driven into every cell of my being like chronic pain is.

Not into my very psyche. As close as my most hated enemy, or my dearest friends.

It feels like I have ripped away parts of who I am to send it to that internal prison. A microcosm, but still a part that needs free-range to make you whole.

But I can't give it free-range or I won't survive.

So,
I build a wall of prison bars around that part...and bury it into a back corner of my mind.

But it is always their haunted asylum-like wails eating their way into my nearly every present moment.

I build that prison with pieces of love I would give to others. Bit of compassion. Smiles. My calmness and my patience. Pieces of my passion, my art, the things I love. Bits of enjoyment and happiness and warm smiles for others. I'm sure it's built with other things too...

for some, maybe your darker side, but it doesn't really feel like that to me. If only that went there in balance too. It seems like building the cage less my darker parts be more free.

I snap more easily, care a bit less.
It's from the constant wails of the part of me echoing up the corridors of my mind.

I don't feel like anyone that doesn't have chronic pain can really understand what it is like. To imprison a part of yourself and create a psychic would that lays open
Just ask you can get out of bed, and smile, and do some of the stuff you want.

Forever a shadow haunting yourself.

To all my Mighty Friends. Been so busy with drs and chasing sleep.i really haven't had time to be around as much as I used to. 💕
Thanks for understanding. Spoon drawer is pretty bare these days.

4 people are talking about this
Community Voices

Just a bit on chronic pain, not really a poem it's just been rattling around and I had the need to get it out. #Pain
#ChronicPain

Forever a Shadow haunting myself.

Chronic Pain
It lives with me
It's my constant companion
I want to roll around on the floor crying and wailing
Begging the gods to stop my suffering
But I know it does no good.
All it does is give me a headache from crying.

If someone shattered my leg in four places I probably WOULD drop on the floor and not get back up and cry and wail.
But that is different. It's acute and shocking.
Not driven into every cell of my being like chronic pain is.

Not into my very psyche. As close as my most hated enemy, or my dearest friends.

It feels like I have ripped away parts of who I am to send it to that internal prison. A microcosm, but still a part that needs free-range to make you whole.

But I can't give it free-range or I won't survive.

So,
I build a wall of prison bars around that part...and bury it into a back corner of my mind.

But it is always their haunted asylum-like wails eating their way into my nearly every present moment.

I build that prison with pieces of love I would give to others. Bit of compassion. Smiles. My calmness and my patience. Pieces of my passion, my art, the things I love. Bits of enjoyment and happiness and warm smiles for others. I'm sure it's built with other things too...

for some, maybe your darker side, but it doesn't really feel like that to me. If only that went there in balance too. It seems like building the cage less my darker parts be more free.

I snap more easily, care a bit less.
It's from the constant wails of the part of me echoing up the corridors of my mind.

I don't feel like anyone that doesn't have chronic pain can really understand what it is like. To imprison a part of yourself and create a psychic would that lays open
Just ask you can get out of bed, and smile, and do some of the stuff you want.

Forever a shadow haunting yourself.

To all my Mighty Friends. Been so busy with drs and chasing sleep.i really haven't had time to be around as much as I used to. 💕
Thanks for understanding. Spoon drawer is pretty bare these days.

4 people are talking about this
Community Voices
Community Voices

Scared to fall asleep

I am fairly certain that I stay up all night, doing mindless activities because of fear. I fear my thoughts. I fear where my mind will wonder off to from the time I rest my head on the pillow to the time I fall asleep. Am I alone in this?

24 people are talking about this