Disability/Health Social Group

[Kate]

Just wondering if there is any interest in starting a social group for people with long term health issues or disabilities?

I was thinking of this because I'm schizophrenic and was thinking that a mental health group might be worth joining. What I'm not sure of is the amount of interest there would be, so covering all health/disabilities with this post might give an idea of what's possible or needed.

Shout if you're interested, thanks

 

[Kate]

You're a healthy lot, it doesn't look like there's any interest in a health group.

 

[Vince1]

Hello, and welcome to the mental health hotline.

If you are obsessive-compulsive, press 1 repeatedly.

If you are codependent, please ask someone to press 2 for you.

If you have multiple personalities, press 3,4,5, and 6.

If you are paranoid, we know who you are and what you want. Stay on the line so we can trace your call.

If you are delusional, press 7 and your call will transferred to the mother ship.

If you are schizophrenic, listen carefully and a small voice will tell you which number to press.

If you are manic depressive, it doesn't matter which number you press, no one will answer.

If you have a nervous disorder, please fidget with the hash key until someone comes on the line.

If you are dyslexic, press 6969696969.

If you have amnesia, press 8 and state your name, address, phone number, date of birth, social security number, and your mother's maiden name.

If you have post-traumatic-stress disorder, slowly and carefully press 000.

If you have bipolar disorder, please leave a message after the beep, or before the beep, or after the beep. Please wait for the beep.

If you have short-term memory loss, press 9. If you have short term memory loss, press 9. If you have short term memory loss, press 9. If you have short term memory loss, press 9.

If you have low self esteem, please hang up. All our operators are too busy to talk to you."

Of course you know I am joking, sometimes a little humor helps people be able to talk about their issues.

 

[Kaston]

I have GAD (generalized anxiety disorder), better know as panic attacks. I have had it since I was a child. Then 3 years ago in college got it diagnosed and just 4 weeks ago, started meds for the first time.

I must say, like without panic attacks is wonderful!

 

[mixxy]

No long term health issues/disabilities on my end (yet)... but I do think having a health group is a great idea... with the flood of new members joining all the time... I have no doubt a health group would be very helpful.

 

[Nuck]

The forums already have a woman's group....






It was just a joke!!!

 

[Grandma Cas]

Hey Kate, if you’re up at 3am, you might need to add insomnia to your list.

I’d be interested, have lots of health problems. Here’s the list, brace yourself:

Depression: [Lifelong but, not so bad now.]
B12 deficiency: [quarterly injection, which might be why depression is not so bad.]
Breast Cancer: [surgery, now on meds]
COAD: [chronic airways disease on meds] now you know why I need to vape.
Abdominal Wall Hernia: [smokers cough plus abdo wall weakened after 2 lots of surgery.]
Cellulites: [in both legs after a bad fall led to walking difficulties which led to weight problems.]

Bet you wished you never asked now

 

[Starlight]

I've also got a lot of health conditions, mainly MS, but also a couple of others on top of it.

One of my MS symptoms is that I can't always find the right words, or always construct sentences properly as my thinking and concentration slow down. The mental as well as physical fatigue I get can mean that it can take me as long as 20-30 mins just to post a reply like this... which is why I don't post as much as I'd like!

Also, when it comes to e-cigs, I think a health group could be quite useful as some of us might present with symptoms - which may or may not be affected by vaping - that may not apply to those without our conditions, whether those symptoms be physical or psychological. I sometimes wonder if there might not be some things in common to those of us with similar conditions when it comes to some vaping problems.

 

[Kate]

(Thanks for the laughs Vince and Nuck)

It's good to hear from you all, I think I'll start up a social group, it might encourage more folk to come out of the woodwork.

I can't decide on a name for the group, anyone got any suggestions?

 

[Morrisam]

Hi Kate

I believe if a group was available encompassing both health issues and disabilities, they would come. I have Dystonia, a neurological movement disorder which statistics suggest affects some 300,000 people in North America, although I suspect prevalence to be much higher as the condition is often misdiagnosed by health care professionals.

Many with health issues and disabilities want to share their stories or chat with others. Me, I'm a lurker. I imagine fellow lurkers would find it beneficial to know they are not alone. And sometimes, it's just downright therapeutic to know someone is worse off than us which can give a person a reason to be grateful

And Starlight - I can relate to the fatigue you speak of and the ability, or should I say inability to create and post a logical response without having to spend an enormous amount of time on it.

 

[Silver]

Great idea Kate, good on ya' !

I have Fibromyalgia (complicated by Hyper Mobility Syndrome), with it's myriad of symptoms, and a recently discovered B12 deficiency (someone might have told me how nasty those shots are !).

Like Starlight, posting takes a long time for me too (being a perfectionist doesn't help ), so I read more than I post as well.

How about.... "Better together" (just spouting off the top of my head here, feel free to ignore !) ??

By the way, for those interested; I found a cool website recently called "But you don't look sick ?", about chronic conditions that are not visible. I really appreciated it (especially the essay "The Spoon Theory", about a womans' unique way of explaining to a close friend what life is like when you have a chronic, debilitating condition that is not visible to others), perhaps others may as well ?

Cheers,
Silver

 

[Avid]

Just wondering if there is any interest in starting a social group for people with long term health issues or disabilities?


Shout if you're interested, thanks

I'd be interested

 

[Morrisam]

Maybe we can call the group "Psychoanalysing NUCK!" I'm sure quite a few people would sign up.

On second thought, better scrap that idea. Might just cause the server to crash!

O well, back to the drawing board ...

 

[1 Cute Canadian]

The forums already have a woman's group....






It was just a joke!!!

LMAO. To funny Nuck.

I have (so far) been fortunate, however I have a child with a rare disease, though not pertinent here, I would be interested to see how adults cope with their symptoms and challenges, so I can have an idea of what my child will face in the future.

 

[Starlight]

By the way, for those interested; I found a cool website recently called "But you don't look sick ?", about chronic conditions that are not visible. I really appreciated it (especially the essay "The Spoon Theory", about a womans' unique way of explaining to a close friend what life is like when you have a chronic, debilitating condition that is not visible to others), perhaps others may as well ?

I know the Spoon Theory, it's great. Thanks for letting others know about it too

I also know of the "Open Letter to those without...", which has slight adaptations for various conditions. Quite terse, but some of us can probably relate to it.

Yes, Silver, I'm a perfectionist too! So totally understand how that slows us down even further

I also have B12 jabs... I hate needles at the best of times, but that one hurts for quite a while later! The flu jab is the worst, doesn't hurt so much when being done, but swells up and hurts for days after. Ouch... Still, compared to so much else, it's nothing.

As for women (I keep meaning to join that group too), my experience shows that more women than men tend to openly talk about their health issues on the internet (on forums for instance)

I've got no ideas for names though, Kate, sorry!

 

[frogbmth]

I have some health issues. I had a very bad motorcycle crash a few years ago, some youths were waiting for me and pushed a flatbed shopping trolley into my path. I did an impression of Peter Pan in the air and ended up breaking pretty much every bone in my body. I have major pain issues from it still.

I also have a genetic degenerative eye disease meaning I am slowly going blind.

A name for the group? How about The Vape-ables

 

[Starlight]

A name for the group? How about The Vape-ables

Oh, now I like that name, good one! Great to see a few fellas join in too

Sounds like we have quite a "variety" already with the just few of us so far

I know that, for some, it might not be so easy or feel too comfortable to "come out" with our individual disabilities or other health conditions in such a public forum that's not dedicated to this subject. I do hope, though, that some others might want to join in too.

 

[Siobhan]

I'm interested as well...here's my personal list:

Asthma
Aspergers Syndrome
Fibromyalgia
Celiac Disease
and currently a tumor in my liver that is at this moment undefined (this one's scaring me)

 

[pipe6078]

thread works for me..... i'm bi polar and in the 20% that meds don't work that is why e cig is so important. My oldest son has schzophrenia and i like him tto try vapor his doctor said maybe later he is afraid of being poisoned. still have lots of hope with e-cig since many people with mental illness self medicate with nicotine.

 

[Rexa]

I have Auditory Processing Disorder. It's something I was born with. People confuse me with being deaf sometimes. It's like the auditory form of Dyslexia. You say the word "chair" and I'll think you're saying "table" or something instead. Most people won't notice it right off the bat but if they converse with me long enough they'll notice that I might not quite understand what they are saying and I would have to ask them to repeat it. Sometimes, I'll ask them to repeat the same word many many times. So I basically hear what you're saying but I don't understand it. APD in medical terms is the brain not being able to process sounds correctly. My hearing though is perfect and I can hear a pindrop from a mile away. There's a lot more to it but for anyone interested they can google "Central Auditory Processing Disorder" or "Auditory Processing Disorder".

APD can be comorbid with Autism but I'm not Autistic even though I've been accused of being that too at some point. I struggle to socialize though as a result since there is nothing that can be done and i'm at the mercy of others when it comes to judging me if I'm stupid, slow and so forth when it comes to interacting with them. So for now, I'm the "texting queen" as some close friends of mine joke since I prefer to text then talk on the phone. It's also probably why I'm a forum and social-networking junky since it's easier to communicate through text.

I thought I'd share since it's interesting to see what others may be suffering from whether invisible or not. I love to learn from others experiences.