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Old 04-20-2012, 08:37 PM   #1
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How Do You Deal with the Negativity?

Hi,

I was wondering how others deal with being disabled.

Most of the people here understand, of course, that sometimes people have good days and bad days - when I'm having a bad day, I don't leave the house and nobody sees me. On a good day, I try to get things done, like going to the store, or whatever.

I lost an $85k per year job and ended up with an SSDI benefit that is just over $22k yearly. That is about 25% of what I was making. And I LOVED my job! I enjoyed going to work and the daily interaction with my coworkers, etc. Since becoming disabled, I have had to cut back in all areas of my life. Getting by on the $22k is not at all easy. If I could go back to work, I would do so in a heartbeat!

The last couple of years have been very scary for me. I was always someone whom people came to for help. I was not used to being someone who needs help. I think about my mortality a lot, of course, and for me, the less I can do, the more depressing life gets.

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Old 04-21-2012, 01:53 AM   #2
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Re: How Do You Deal with the Negativity?

Going from being a professional career person to being dependent on benefits must be beyond difficult. I'm still waiting for results of my hearing; it I don't get approved, I'd have to find a flexible menial contract job and that scares me. The reality I can't be a productive member of society, the isolation, the stigma are all taken its toll already.
I wish it wasn't so and pretending it doesn't bother me, I feel, is unhealthy. Just writing this down helps me stay focused and learn to accept the cards dealt.
Take care
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Old 04-23-2012, 10:50 PM   #3
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Re: How Do You Deal with the Negativity?

Quote:
Originally Posted by Cody713 View Post
Hi,

I was wondering how others deal with being disabled.

Most of the people here understand, of course, that sometimes people have good days and bad days - when I'm having a bad day, I don't leave the house and nobody sees me. On a good day, I try to get things done, like going to the store, or whatever.

I lost an $85k per year job and ended up with an SSDI benefit that is just over $22k yearly. That is about 25% of what I was making. And I LOVED my job! I enjoyed going to work and the daily interaction with my coworkers, etc. Since becoming disabled, I have had to cut back in all areas of my life. Getting by on the $22k is not at all easy. If I could go back to work, I would do so in a heartbeat!

The last couple of years have been very scary for me. I was always someone whom people came to for help. I was not used to being someone who needs help. I think about my mortality a lot, of course, and for me, the less I can do, the more depressing life gets.


I am sorry you are feeling this way, but can totally relate. I am an educated woman that had a strong career in social work, did fostercare, had a real sense of purpose. That was all taken away from me, robbed me of my mid-life years, the years to enjoy your career, your family, the life you worked hard to build for yourself. Believe me I can feel yea.
The key is to find a new passion, to find a new purpose. Don't let your disability win, dont let it rule your life. You will have a lot of adjustments and life changing moments but think of it as if it all happens for a reason. Maybe you find a new passion, maybe you become a mentor and help someone else who would otherwise be lost... Who know what the future hold but you can be assured that you are still alive, you have a function. You just have to figure out what it is.

Do some journalling, some soul searching.

What is something you have always wanted to do that you couldn't because you were working all the time?

What is one of your hobbies? Passion? Even something you never thought of?

Keep me posted and let me know your thoughts. Chin up we have all been there and remember you have the right to feel the way you do just use it to your advantage, go with it, make a change, find a passion, make a goal....
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Old 04-30-2012, 08:26 AM   #4
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Re: How Do You Deal with the Negativity?

I know how you all feel. The first two years were not so bad, as I thought i was just recovering and would be able to go back to work, I got worse. On days I am feeling OK, I try and do some hobbies.

They say doing jigsaw puzzles keeps your mind busy and it does. I try to stick to the larger pieces, when it is a box of 1000 little jigsaw puzzles, it is frustrating. I started to work on my family tree, there are a lot of free sites to look up your ancestors history. I call older relatives and say hi. Some people play computer games, others build model airplanes, knit etc. A lot of this stuff can be found at consignment shops, just use a sanitizer to clean off any germs.

The best thing I did was get a DVR and I record a lot of shows. I can't stand commercials and those days I am stuck in the house or in bed, I have a bunch of pre-recorded shows I can watch. I also listen to music on the internet or watch old music videos.

 
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Old 05-10-2012, 04:41 PM   #5
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Re: How Do You Deal with the Negativity?

Luckily my job provided LTD which gives me a bit more than just SSDI. I've got my "bad" days scheduled. We have the full digital cable package so I know what I like and can find something on much of time or I love listening to classic radio shows via the internet or satellite radio. I have my "down" times but even just getting out to get to the pharmacy is often too much, so I lay back and take care of myself and let the TV entertain me!
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Old 05-25-2012, 10:22 PM   #6
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Re: How Do You Deal with the Negativity?

Not very well. being disabled is more than a physical thing for me. I identified myself with what i did, at work at home and at play. Now I have a glider with my butt print in it . I know the channels and schedules and I watch as other people live.. Im a spectator and I'm learning to hate it.

 
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Old 05-26-2012, 06:31 PM   #7
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Re: How Do You Deal with the Negativity?

I'm a spectator as well and feel like life is just passing me by. I am surrounded by people who don't think there is anything wrong with me, because they don't see me during my down time. Why don't they see me during my down time?, because if I say anything at all about not feeling well or needing help, they disappear. I tell them that if SSDI didn't feel I met the requirements than I would not be receiving a check. I have a brother who constantly says "I don't know how you got approved so fast when there are people who legitimately need it!" I just want to smack him! When I try and explain what is actually wrong with me, he just blows me off and changes the subject. I miss working. I miss the people I used to work with. I miss having a life. Nobody even invites me to go any place with them. I just sit and hear story after story of all the good times people had and vacations they took. I feel like a total loser on most days. I feel very unloved and just not even worth a crap.

 
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Old 05-27-2012, 09:18 PM   #8
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Re: How Do You Deal with the Negativity?

I've made sure to stay involved with friends. I can't always go where they go (girls weekend away in Vegas was too much for my joints) but for happy hour or evenings together I push myself to be there. I have had a few friends think I'm a free babysitter but I've told them I'm not, but I can be there if they are waiting for a delivery, I can be the one to help them search for a gift on the internet, etc. I've lost a few friends, but surprisingly seen many positive responses, I think becuase I've remained positive. I found three other women in my area with severe spine issues and we lean on each other, emotionally and when we need a ride to go somewhere, want someone to accompany us to an appointment, etc.
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Old 06-02-2012, 06:40 PM   #9
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Re: How Do You Deal with the Negativity?

I don't have a lot of support. My family is mad at me for not working, after one surgery my sister said to my Mother, give me a break, I know someone who doesn't have a leg and works. This was the day I had surgery. Heartless and cruel.

I didn't live in NY for a long time and when I moved back I was talked into buying an apartment in the suburbs where I know nobody, but it wasn't a big deal, I was working all the time. Than I became disabled. I have a few friends in the area. The closest friend I had in my apartment building died a few months ago. He would always take me to dinner, ask me to come over and go out with his friends. But mostly I have to stay with my Mother in another state, where I know nobody. I feel like if I sell my apartment and move out of state, than I am giving up. Because I feel like maybe one day I will be able to work again and NY has a lot of jobs. I came home to go to NYC and get some more opinions on my medical problems. But it is hard to be alone, with nobody to help me. I vacuumed my couch today and have been in bed the rest of the day. Thank God for laptops.

I too lost most of my friends and watch my life pass me by and people remind me of that also. I am only 39 and have been disabled for 5 years now. My doctor put me on celexa to help with the depression, I am a calmer, but it makes me hungry. So now I will gain weight. I feel so down, down, down. My friends say I have a black cloud following me. I just don't get a break. I could go on for days, but everyone else has their own list of problems. I just want you all that posted, I know how you feel. I am sad too

 
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Old 06-03-2012, 01:21 PM   #10
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Re: How Do You Deal with the Negativity?

My wife and kids try to understand< and they feel horrible when I lose my composure and i cry.(more now than before) but life beyond them is lost to me.


<removed reference to public figure>


my mind isn't mine any more because the pain shorts out my thoughts. it took my hobbies, my job, my mind. People are so short sighted and mean sometimes. but they expect me to have sympathy for some on who has a heart attack and continues smoking. or has diabetes and continues to eat only sweets................ok sorry for going dark. I come here for perspective and I'm sure one of you will put me in my place. but for now these ar the thoughts and feelings flowing through me.

 
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Old 06-05-2012, 08:40 PM   #11
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Re: How Do You Deal with the Negativity?

No, I would never put you in your place for being in that dark place. We have all been there and will go there. I know how it feels. I have little support and some great support. My moods are up and down. Stress, scared, lonely and I hurt. I too get annoyed when I hear someone has an illness that can be cured. A lot of my family died young or got very ill, my friend told me I was bitter, she is no longer my friend. I can't cry when someone who is 80 dies that had a great life. I am always hear for anyone to vent, cry, complain, lol, we complain, amazing, people will say that. Today I looked OK, I got to walk a bit, but I am in so much pain now. Never feel that you can't come on this board and say how you feel. We have all been there, some have it worse, some have it better, some feel good today and bad next week. Your honesty is refreshing, it tells us we are not alone. Sending you some hugs.

 
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Old 06-12-2012, 10:37 AM   #12
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Re: How Do You Deal with the Negativity?

Ok, so I was reading this post and thought it would be a good place to add my two cents, to vent, and to whine a bit...

I need to figure out how to.deal with this pain, sorrow, the inability to get things done. I am so sick of it, yet can't seem to do anything about it. My house isn't filthy but not clean by my standards anyway, none of my family seems to want to pitch in and do anything. I try to surface clean, bribe my kids to clean, but even the slightest thing sets me into a pain spiral, bending over to clean baseboards, forgrt it! That just isn't happening although I try I end up in bed flat on my back in tears. My husband works all day comes home and even though he doesn't actually say anything he is upset that the house is a mess. Ifeel like a big fat looser that I cant take care of my home. Friends complain that they have pain but only take a tylenol what is my problem? If I would just suck it up I could get my life back... It just doesn't work like that. I have a friend with fibro and although I know that suck and I feel so bad for her, it is hard for me when she is always comparing her pain to mine as if its a contest and she needs to win. She is able to go to school and use to work, why can't I? I dont know how to respond it makes me sad and angry at the same time. I hate myself for some of those evil thoughts that creep in but how do you deal with them? How do you respond? How do you keep positive? Uggh sorry to vent and I probably made no sense for half of thi
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Old 06-12-2012, 01:56 PM   #13
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Re: How Do You Deal with the Negativity?

Sorry to hear you're feeling all this distress. Depending on the age of your kids, pitching in should be 100% expected. Even a 3 yr old can begin to do his or her part. My 2½ yr old niece likes to clean so my brother and sister in law decided now was a good time to assign her first "chore". She's low to the ground and dusts base boards. Of course it's not spic-n-span but enough that my SIL can use a long handled duster that can be used on floors, ceilings, etc. Money doesn't mean much to her, she gets $0.50, $0.25 goes to charity. Then she can earn little prizes by doing her chore X amount of times.

Hopefully your husband will be supportive in a sit down family meeting where you explain to the children what your challenges are, pain can be hard to describe but a teenager can begin to grasp ongoing pain. We've found it essential to change the way our home operates so I'm not on the couch in pain 24 hr/day. Even down to buying a used small SUV so getting in and out is easier and anything I carry in cargo is at waist level.

In order to live the best life I can I have to honor my limitations, ask for help when I need it, and worked on a good explanation to provide to others about what I'm going through - catering it to different people's expected perceptions (if they see me on the good days, they have to know there are plenty of bad days). I have no local family, so I choose my friends carefully and know which ones will really remain my friends.

I also live with "perspective", my medical problems cause chronic pain (often severe) and I hope to make 2012 my first year without surgery in a long time (but I need additional neck fusion soon). It's ok for my house not to be clean all the time. Through a friend I found a relatively inexpensive house cleaner ($80). She's not as good as the professional services but I can do weekly minor stuff and have her coming every 4-5 wk. Perspective is also personal, my 55 yr old cousin died of ALS Lou Gherig's disease 2 yr ago. Even my worst day is better than his struggle was.
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Old 06-12-2012, 02:01 PM   #14
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Re: How Do You Deal with the Negativity?

Forgot to add, be sure you're seeing the best specialists and primary care doc. If not for my amazing Pain Med doctor I'd be much more incapacitated than I am now. I have meds that help, and I don't hesitate to take as needed and discus all possible treatment options from all my doctors (I see my spine surgeon once every 4-6 mo, Pain Med monthly, and Primary Care evey 3-4 mo)
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Old 06-12-2012, 08:05 PM   #15
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Re: How Do You Deal with the Negativity?

I send you my heart. and lots of soft hugs. The thoughts you have I am sure is common here. I have a friend that keeps telling me I do not understand pain..(she complains of cramps and ulcer pains) I need to laugh but I put her in her place often . I too feel like a failure some times, but am lucky to have children that will (grudgingly) help out ALOT!!! I do what I can during the day and when they come home they help out with instruction. routine works well for me. Unfortunatly they have to do other stuff such as weed and edge gardens, paint the out side of house , clean gutters, etc with the aid of my wife whom is clueless to this type of work. I grew up constantly being pushed. If you start it today it gets done today. so I have a hard time dealing with its gets done little by little. Its hard and disappointing. but life changes and we must be able to change too. this is a hard thing for loved ones to grasp. so i thank the people at RSDSA for sending readings and research for them to read to "try" to understand. Maybe letting them come and see the posts on this site will open their minds a little... I don't know. most important is ..you aren't alone you have a family here that won't judge and understands so vent here and let us be your shoulder.... good luck and be well

 
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