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How many of you out there have gone from an active life to applying for disability since you got fibro? The past 8 years have been such an uphill battle for me - I wonder how many others are like me. I still work, but it iis getting harder every winter as the pain and fog increase. Now I am seriously looking at disability as an option.
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Re: from an active live to considering disability
Wed, October 21, 2009 - 3:03 PMI'm in the same boat, it takes every ounce of energy I have to get to the office, and I've ended up working from home 1-2 days a week because I just can't get there. I'm lucky to be able to do this, I know. I worry that I won't be able to go in at all soon, which sucks because I actually love my office. I also can't get away with working only from home. I'm playing the denial game a lot - you know, I just need to get more sleep tonight, then tomorrow I'll be better. I wish I had the answer for us. -
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Re: from an active live to considering disability
Wed, October 21, 2009 - 5:34 PMalas I work in the school system, so I can't really work from home - but I now work just part time. I have a sympathetic staff, but they are understandably frustratrated as my productivity goes down. I used to dance twice a week for at least an hour of advanced classes, now I consider myself really doing well if I make it to an intermediate class for 25 minutes once a week, knowing the exercise will make me feel better..... -
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Re: from an active live to considering disability
Wed, October 21, 2009 - 10:12 PMThat's strange, I used to work in the school system as well. My colleagues were not so sympathetic, nor was the school, so there went that job. I ended up finding a part time job that I could handle. At the time I took the job I could work four hours a day doing data entry. When I mentioned that I could access our database from home and work an additional 2 hours, they were happy to let me do that. Since then I've declined, hence my working an entire day from home once or twice a week. There are still things I can only do from the office, but even if I could do everything from home, I'd prefer going in. I love the people I work with, I love my cubicle and the friend I share it with. I took a massive pay cut for this job, but I'm so much happier now I'll do it as long as I can afford to. Hopefully I'll get a raise one of these years.
Depending on your marketable skills, there might be a job out there that can better accommodate your fibro. Instead of getting frustrated about what I can't do, I get to focus on kicking ass at what I can do. A trained monkey might be able to do my job, but I make other people's jobs easier, and that's a nice turn around, it's rewarding. I would imagine that having yourself and others constantly frustrated over what you can't do is stressful, and may be contributing to your decline.
You might take disability for a while and figure out which direction you want to go in. You can rest up a bit, use more spoons dancing than working. Disability doesn't have to be permanent. Oh, and don't give up dancing. In fact, could you do a little for me? I miss it :) -
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Re: from an active live to considering disability
Thu, October 22, 2009 - 8:03 AMSadly, I have not experienced much sympathy in my life either. I've lost probably seven jobs in the past few years because I wind up calling out sick so often.
Initially, I had thought my problem was something of a repetitive stress injury, like carpal tunnel, from working at a computer in a call center for so many years. At one point, I worked as a nurse's aide and even felt better at first, but it didn't last long. I was even in nursing school and after almost two years, I realized I could never be a nurse. They are expected to work no matter what and never miss a day, so that just wasn't for me.
I was blessed to find a full-time work from home job back in travel where I started. It is a great company with great people and they have been very understanding. I was out all summer because of my broken foot and even went past the FMLA protection and I'm still there.
The day will probably come when I can't do it anymore, but I'm hopeful. Even if I have to go to part-time, it is commission work, so there is the potential to make decent money.
Like most of us, I guess I'm in denial. I don't want to consider myself disabled and I certainly don't want to face the battle with SSI to get disability payments. My father had an awful time with that and the appeal and it was not approved until a few months ago, two years after he died.
I wish I had some great words of wisdom. I guess all I can say is to try to find work that will accommodate your limitations and get the training if you need now to be prepared for further progression. And stay hopeful. Years ago, FM was not even recognized as a real condition and even now many medical professionals see it as a psychological problem, but there are great improvements in the treatment and research. I have great hope that someday soon, we will be able to overcome this. -
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Re: from an active live to considering disability
Wed, October 28, 2009 - 9:40 PMI've had it for 12 yrs. and I can remember maybe two people saying something like, "I'm sorry you've been stricken with this Fibro."
??? No clue. Do they think we deserve it?
Friends? I've lost most. Hard not to feel used and thrown away. -
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Re: from an active live to considering disability
Thu, October 29, 2009 - 6:32 PMso sorry Tara! My friends have been good to me, even if they don't really get it. It is harder with people I work with - understandably, they don't know how hard it is for me to just get there some days. -
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Re: from an active live to considering disability
Fri, October 30, 2009 - 1:20 AMMelissa posted a great link on facebook about "You don't look sick." I shared it with a few people and it was very helpful. If I find it again, I'll post it, or maybe she can do it. -
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Re: from an active live to considering disability
Fri, October 30, 2009 - 1:33 AMdo you mean this...: I love this site..
www.butyoudontlooksick.com/the_...eory/ -
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Re: from an active live to considering disability
Fri, October 30, 2009 - 1:44 AMthat's the one. my mother actually seemed to get it. she called me the next day to wish many spoons for me -
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Re: from an active live to considering disability
Fri, October 30, 2009 - 2:45 AMEXCELLENT!!!! Wow, I'm happy to hear that honey....
family is so..... freaking weird...it's like they need 26 outside accounts before they can belive a 10th of what we say....
So long as it's dawning on her.... for my mom it took having breast cancer, chemo and radiation.... and she still only half gets it!
Love you!!!
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