Half a life .. some ways to help?

Danb

Danb

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Past few months my health problems have flared up and caused me to not be able to work a steady schedule.

I'm struggling with the aggravation of not being able to work and seeing all my friends' lives moving on with having carriers, marriage, social life and families.

Then there is the embarrassment part of it, and feeling like i don't fit in.

What are some ways to deal with this?
 
What are ur health problems?....People do get sick occassionally and miss work.....Even as I sit here with a bad sinus cold...my family has gone out and enjoying themselves while I'm stuck at home. But knowing tomorrow is another day and I'll be right back out there...

What's there to be embarrassed about? Sorry, just not enuf information here to help you any....
 
I have chronic idiopathic autoimmune disease. Basically it is chronic inflammation everywhere. Different parts swell up and get painful, like my skin, knees, shoulders, spine, inner ear.

I have had this for the past 10 years and have had to work part time from home. The past few months it has been worse.

So i'm embarrassed because i can't work full-time and have to rely on government benefits for support. I'm only 36. If i was in retirement age it would be considered normal. When i tell people about it they get this look of shock and the conversation usually ends.
 
Oh no, I totally understand about the conversationg stopping because that has happened to me when I tell people that I am deaf and need them to face me. Usually, they would say, "oh" and nothing more. I try to keep it rolling but it takes two so eventually I stop with those people because I figured if they ared going to act like that around me, they aren't worth it. It is the rare fedw who do make an effort and those who are worth my time.
 
Yeah exactly.

Its mostly my family now. Which really sucks because we used to be very close.

They don't talk to me as much as they used to. They're active people, playing golf, tennis, hockey and going to parties or bars. I was forced to stop doing these things when i lost my hearing and my health tanked. So now i don't see them very often.

Not sure where to go from here.
 
I've been dealing with a chronic condition, too. I found a rheumatologist who has been able to help me. The side effects of the meds suck but I'm getting around much better. She also prescribed pain meds that have made a hugh difference in my quality of life. Have you found a good rheumatologist?

It's especially hard for people to understand when you look fine on the outside. Chronic inflammation is so debilitating, though. The fatigue is crushing and the chronic pain seriously effects your quality of life. Educate your closest friends and family and tell them what you need.

Have realistic expectations. There will be good and bad days. On bad days, give yourself permission to rest and use self-care. On the good days, try to get out and socialize. Be aware if your mental health and seek mental health care when necessary. I believe that the chronic conditions affect the brain in a physical way, in addition to the stress and psychological issues.

Anyone interested in starting a thread for people with chronic medical conditions? Sort of a support thread? We could share ideas and give each other support.
 
Danb said:
I have chronic idiopathic autoimmune disease. Basically it is chronic inflammation everywhere. Different parts swell up and get painful, like my skin, knees, shoulders, spine, inner ear.

I have had this for the past 10 years and have had to work part time from home. The past few months it has been worse.

So i'm embarrassed because i can't work full-time and have to rely on government benefits for support. I'm only 36. If i was in retirement age it would be considered normal. When i tell people about it they get this look of shock and the conversation usually ends.
Click to expand...

I don't know very much about this disease, but it does sound very painful and you have my sympathy. On your good days, are you able to get out some?...Maybe a few friends or some understanding family members?....

I know it's a blow to have to depend upon government assistance at such a young age. But do not be embarrassed about it, it's not ur fault and you cannot help it...Do you have a support group for this disease? I'm sure there is one, and would help you imensely to cope a lot better...plus the members here at AD are very helpful and willing to support you.

Here's hoping today that you will find some helpful and supporting members here at AD to discuss this disease (If they know more about it), and some have the same disease as you do!...

Hoping you can somewhat "cheer up"...and I've added you as a friend....
 
sorry hear not easy because probably complication pretty advise to you! I am surprised It is very hard for side effect!
 
The interesting thing about the Deaf community is that diseases and conditions that doctors consider rare are common place. If you seek out the Deaf community you'll find other people who have your disorder (or at least are familiar with it). I'm not familiar with where you live. Maybe someone on AD can provide info on local clubs and resources. Are you in a rural area or urban area? Near a big city?
 
I recommend for you doctor experiment how on experience doctor solve!
how solve complication! otherwise doctor is very help advise to help solve disorder illness or have condition!

we help ad support to you share to open mind!
 
I have a good rheumatologist and immunologist. I've tried every medicine available... shots, cyclosporin, methotrexate, etc etc.

I'm currently on a high dose of prednisone (anti-inflammatory) the only one that works. I take tramadol for pain.

These have made a big difference but not enough to have a full-time life. I've been told i can't be on a larger dose of prednisone because of liver problems. The prednisone has made me gain 30 lbs in 1 month, and i look like a completely different person. My niece and nephew are afraid of me.

The fatigue is very bad with me. I have to limit things to about an hour, even just socializing. I don't understand why. Its like i have an hours worth of battery life, and it takes 4 hours of rest to recharge.

I used to be able to go all day. Work in the day, play sports at night and party afterwards. Not now.

I am having a hard time getting out to see people because it is difficult to hear in places other than things like a library. :) I have a CI in one ear, deaf in the other.

I think a health problems forum would be a good idea. Seems like there are many people here in the same boat.
 
I hear ya! I went from running miles to barely being able to get out of bed. It's been hard to accept the "new normal."

Are you interested in learning ASL? It would give you an opportunity to attend a silent dinner and leave when you become tired. You could also invite people for a short visit at your home. Lots of us are on P3 and Skype and available to chat and practice.

I would like a thread, too. Maybe one of the mods could make it a sticky?
 
Yeah i want to learn ASL. I just checked out the P3 software. Looks pretty cool. That flasher could come in handy. I'm surprised they make you call to order it though, heh.

How do you find peoples chat names? Do you ask or do you have to be offered it?
 
sallylou said:
I hear ya! I went from running miles to barely being able to get out of bed. It's been hard to accept the "new normal."

Are you interested in learning ASL? It would give you an opportunity to attend a silent dinner and leave when you become tired. You could also invite people for a short visit at your home. Lots of us are on P3 and Skype and available to chat and practice.

I would like a thread, too. Maybe one of the mods could make it a sticky?
Click to expand...

I consider recommand http://www.alldeaf.com/groups/103-asl-group-club.html


better communication lots of suggest to help group asl!

Lots of ASL Group

suggest to add help! I mind you!
 
I signed up to P3 and got my number. Is this really free?
 
Danb, sounds like you're in the right place. I guess people that knew you before you were diagnosed don't know how to relate to you right now, and that is very unfortunate. They sound like class-A social monkeys. Keep on meeting new people and you will end up doing cool things all the same! :)

As for the government help -- nothing to be ashamed of. I am happy you have that!
 
P3 is totally free. I use it and I know SallyLou also uses it.
 
I'm sending you my P3 number. I don't have it cranked up right now. Methotrexate nausea big time! I'll probably be available later, though.
 
Ps3 banned for Canada PS3 delete my :( I respect to FCC rule recommand
 
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