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Are Chronic Pain and Fatigue Disabling You?
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Caprice_WebMD_Staff posted:
October is National Disabilities Month.

There is often a lot of talk here about being disabled and/or applying for Disability.


Are you considered disabled or do you think of yourself as disabled? How does that impact how you feel about yourself? Has it been difficult to accept the need for tools to aid you regarding your disability? Which was the hardest to accept?

If you are disabled are you still working?

Does your city/town accommodate the disabled pretty well with their sidewalks, accesses to stores, etc.? Or is there room for improvement?
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
Reply
 
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rudyandirmouse responded:
Hi Caprice, Linda R here and I thought I'd put in my 2 cents on this one.

As odd as this is October is, and seem to have always been, a disabling month for me as it's the first of the cooler months that triggers my fibro flares.

But do I think of myself as a disabled person? That would be a resounding HECK NO! Because of fibro and some other physical conditons I am limited some days. I move slower some days. I do less than I had planned some days, but disabled NO. I have had the fibro DX with it's many limiting medical conditions for over 30 years, had I let if take over my life I'd have had no life at all. I won't let fibro do that to me!

And since I have been dealing with fibro and it's conditions for over 30 years. I tried to work on and off during that time but had to 'give up the ghost' years ago. I was just to unreliable. There was no way anhyone could count on my being there each day and I found most companies I tried out for wouldn't hire me as I had balance issues and could fall and get seriously hurt.. so work and I parted company many years ago. Now I try to volunteer a few days a month here and there.. if I show up it's good, if I'm not there no one misses me.

And where I live accommodating the disabled is a joke. The downtown buildings are retrofitted to accoummodate wheel chairs and the like, but other than a few stores like Walmart, nope. Most subdivisions and city roads don't have any. ;( Makes finding walking paths almost impossible. I'm going to use the hospital's sidewalks for my walks.

Is there room for improvement? Well that would be a Oh heck yeah, but will that happen in my life time? I'm not holding my breath.

Soft hugs going out your way.
Linda R.
 
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TNDixChix responded:
I don't consider myself disabled yet . . . with the added diagnosis of Lupus I sometimes worry what the future holds for me. I am lucky I have a career that I do what I want when I want. (REALTOR) I can certainly understand why others would, however, consider themselves bad enough for disability.

Those that have the extreme end of all the FM symptoms have my sympathy. I have the flares where I have a really bad week or two or what I consider a total loss of my life I will never get back, but fortunately they get better and I pick back up where I left off.

I totally understand why some need and deserve disability. If you have a job where a lot of standing, walking, lifiting, even sitting is required - I would not be able to do this on a regular 40 hr week. We all can't work for ourselves or from home. This economy is a killer for healthy people right now let alone someone with FM. I have worked very stressful jobs and can honestly say that made my FM much worse. Having to be somewhere early and on time, detailed/multi tasks, long hours, demanding supervisors- all of this is a huge thing for those with FM to deal with. If you have worked and can't do that work anymore isn't that what disability is for?

Who am I to begrudge someone on disability? It is a long aggravating process. If you manage to get through it, you have done without income for many, many months and have had doctors give medical proof of your limitations. Disability is not the lottery - most people don't even draw enough to make ends meet.

I think my age (42) is one reason I don't consider myself "disabled" but if I feel this bad or worse in another 10 years or more I think I will. I'll have given it a good fight but know I can't keep going. I am lucky that my area does seem to accomodate those with limitations - buildings, transportation, paved greenways, etc. I think in the south we are more tuned into helping others in general.

I have given up my lovely shoes with heels, but I am not using the cane yet. I was very embarrassed this weekend when I almost didn't make it up the steps at my nephew's reception! I try not to dwell on those things I will never do again - water ski, marathon shop, shampoo carpet (really don't miss it), etc. I tend to watch more now instead of jump in and do, but for me still trying is important. I can still do things others can't so I consider myself fortunate in that.
Soft Hugs
 
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angelswife responded:
Hi Caprice,
I don't consider myself disabled, even on my worst days. I can still accomplish stuff; I just do it differently than I used to. Some days the pain stops me in my tracks but it doesn't mean I'm done for good. I think having a good attitude helps.

I have actually lived with the 'disability' perception from others for years, and it really steams my beans! I walk with a limp and have some other physical challenges due to my early abuse, so people automatically ASSUME I am disabled. It drives me seventeen kinds of nuts. I walk differently; so what? Lots of people do. I don't even notice it until I catch other people staring at my legs instead of my face when they're talking to me. When I catch someone doing that, I just want to smack them.

When I was in college and homeless, I was applying for financial aid, and the woman helping me said I should apply fro such-and-such a grant. I asked her why, and she said "Because you're disabled." I retorted, I am NOT disabled!" and she calmly said, "Yes you are." I realize she may have been trying to help, but I couldn't in good conscience take money I wasn't entitled to. Walking with a limp, for me, does not constitute disability.

I still work full time. I have to if I want to keep eating!
 
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Caprice_WebMD_Staff responded:
Wow, you all didn't disappoint!

Thank you so much for your very thoughtful responses. I really appreciate you taking the time. Lots to think about.

I hope others will be chiming in too.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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glad2bhere65 responded:
I feel disabled during a flare, but on my good days I don't, even though I can't do all the things I used to do. Our city has plenty of accommodations for disabled folks. I appreciate the ramps on days when it's painful to go up steps, but I haven't gotten a handicap sticker or anything like that on my car. I won't be too proud to do that if I ever need it, but so far so good.

Linda
 
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crazytaurenswife responded:
My kids and DH have all asked me why I haven't tried to get a sticker for the car. My usual response is "I'm not broken enough to get one." I don't really consider myself to be disabled, but I have PLENTY of restrictions. I had a laminectomy (x2) and discectomy (x2) about 3 1/2 years ago. Since then, I'm on a permanent 20-25 lb (at waist level) lifting/carrying/etc limit, with the weight dropping the further the distance from my waist. I'm not supposed to sit/stand/lay/walk for too long and I have a lot of movements I'm supposed to avoid (twisting, reaching). The FM just added on to what I was already dealing with. Some days I certainly feel disabled, but I try to find creative ways to accomplish things so that I don't feel that way too often.

I only work an hour a day on school days. Last winter was hard for me and I had several days when I really shouldn't have gone in. Hopefully, this year won't be so bad. I also try to volunteer at the libraries in the schools my kids go to.

The biggest issue I've noticed in this city is the lack of sidewalks in residential areas and on a few main roads on the outskirts of town. All of the places I go to have automatic doors. Some places could use more parking, but there really isn't a way to add more on.

~Jessi
 
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PeterG47 replied to rudyandirmouse's response:
Hello Linda R and all,

This is my first post to this forum.

I am living with FME for around 15 years, I also have a below knee amputtion due to not being diagnosed as a diabetic, My eyesight is geting worse, and I have serous Osteo Arthritis in most of my joints.

I use a wheelchair a lot !

My local authority has built an extension to my home with an accessible bathfoom and bedroom at ground floor level. After 8 years it is unfinished, as the grab rails were not fitted, and one of the external walls have not been plastered.

I have been a disability advocate volounteer for 35 years, and am on my local access committee. I do display my disabled parking permit at al times. I am ashamed to say that a huige number of motorists will cut me off as I start to manuver into a marked reserved disabled parking spot, If I have time on my hands, I will double park across their veichle and mark the time when they said "I'll only be a minute",,, when they return, If a parking attendant has not already came, I will ask them to wait for the number of minutes they forced me to wait while they occupied "MY" parking space.
This usually attracts a crowd, and when the guilty party comes out with an apology, I get a round of applause.

Parking spaces which are reserver are for people with mobility problems, they are close to the store entrance and main street places like banks and post offices etc. not for someone in a hurry or on a wet afternoon.

Off my soapbox now,,, I have 6 sisters, and diagnosed with Osteo Arthritis for many years before forced retirement, my mother passed away at 96 years of age,
She had "rumatisim" all her life !

I was first dagnosed by X Ray as having OA in my hip joints and shoulders over 25 years ago, 18 years ago a young hospital doctor doing an asessment diagnosed my Fibro Myalgia from a phisical examination..

I am using a lot of NSAI medication for a ;long time, I had to fight with my doctor to confirm my type 2 diabetes and am on tablets twice daily for that, Meanwhile I lostmy left leg below the knee due to the diabetes afecting my circulation.

Of my 6 sisters, 4have already been diagnosed as having FME, one has ME, 2 have had breast cancer and one ovarian cancer.all have 2 or more children. only my second youngest sister has not retired early . She has FME,but only the ocasional flare up which goes away in 7 to 10 days. this happens 5 to six times a year.

My FME is constant with me, worst time is before getting up, and last thing at night..


My long term meds include NSAI's and antacids to rectify the effects, asprin to thin my blood, tabs for my type 2 diabetes glucosamin, and 4 small amitriptaline tabs for nerve and mussel relaxant, and recently, I have been trying "lyrica",. which is from USA, and was originally didpensed as an anti convulsant for epilepsy controll. They seem to be a great help after only 4 months.

I am not looking forward to the winter cold coming..My welfare payments have been cut 3 times in the last 3 years, a total of 12%, a 50c per item has also bee added to prescription charges, which takes me to 17% below the poverty line.

My wife is recovering from a stroke 6 years ago, my elsest son is unemployed [redundant from Xerox> my second son has finished his Batchelors degreed,as a mature student and is returning next Monday to do his Masters, as there are no jubs available without emigrating to USA or Australia.
I do not have a pension paln as I worked in construction all my life.

Sorry about the [many> typos, I have numbness in the fingers of both hands. I am a member of my local wheel chair group committee, also my locasl access commitee, and 2 weeks ago, joined up with a new group which is an Austrailian idea, called "Men's Sheds", where retired men gather to exchange life skills, learn some new ones, or just chin wag and complain about the state of the Nation.

Enough for now - for those who do, please remember me in your prayers !

Thanks for taking the time to read my ramblings.

PeterG47
 
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Anon_2912 responded:
No I don't consider myself to be disabled. I still work.

I refuse to give into it.
 
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Caprice_WebMD_Staff replied to PeterG47's response:
Hi Peter and welcome to WebMD!

Thank you for sharing so much of yourself. I may be joining you on that soapbox! I don't have a card (yet) but have confronted people when they've inappropriately used a Disabled parking space.

Love the idea of 'Men's Sheds'.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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Anon_160275 responded:
Hey Caprice, I think that everyone should pat themselves on the back, and keep standing on their soapboxes about not having handicapped placards on their cars, still working and have had fibro for 50 years, bring home the bacon, fry in the pan, volunteering, baking cakes for the elderly, and supporting their families, etc.,etc. I have fibro, and I AM disabled. I have a disabled placard for my car for which I am grateful. What a horrible question you ask! You set up the question for a positive response, and not a realistic response. I can't walk. I'm grateful for the days that I CAN get out of the house and see something else besides the four walls around me. I have a disabled sister who lived with me for an entire year who needed cooking done, help with bathing, brushing her teeth, laundry, dressing skills, etc. It about killed me before there was a room in a group home. I go to PT every year in January when my insurance covers it again, the few visits that they will pay for, and when my husband has a few extra dollars, I get a massage that makes all the difference in the world for me.

Why not instead ask, what would you change being that this is National Disabilities Month???? How about insurance changing so that people with conditions like this can get the therapies that they need to live to as full of a life as possible? How about adding that to medicare, or medicaid? I can go to any doctor or specialist who charges as much money as they want, for as many times as they want, every week if I choose, but I CANT get massage therapy, or physical therapy, or chiropractic without a $3000.00 deductable. In other words, even though my husband pays through the roof to cover me beyond medicare, after 12 visits a year (and everyone goes to deductible), my benefits are shot. Those therapies give me a life.

My point is don't set up your questions that it is negative to admit that this condition is DISABLING, it is. Many people can't work, can't volunteer, and can't even drive. Has it been difficult? Hell yes!! What do you think? Sure! Do you have fibro? Are you proud to have a handicapped placard? Do YOU like people staring at you when you look perfectly well getting out of a car?

Try thinking of more intelligent questions next time.
 
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Wolfsong452 responded:
I qualified as being disabled by the Vocational Rehab here in Indianapolis.

they helped me get a job, I could have tried to get some more schooling from them,but they felt that I had plenty of job skills,

so now I'm working as a Security Guard.


Consider myself disabled?

hmm, hard to say, most of the time I say yes, bvut then I know of people who are REALLY disabled,

so, I then hang my head in shame.


hardest things to accept, the depression,

not being able to do the strength things that I'm used to. This might be due to age,

but, I think it's the FM

I feel that my city does a pretty good job.

.
 
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xperky responded:
Ahhh, I see that discussing disability is a very emotional thing. The topic is something I find extremely difficult to talk about. You see, I became disabled 21 years ago from a mental illness and lost the ability to function at my rewarding career as a scientific programmer. At my peek, I was in the top 2% of female wage earners in the US. Now, that statement shows just how proud I was of myself. I fell down very hard when that life went away. But, I have learned that pride is not a healthy emotion.

More recently, with FM and probable Inflammatory Arthritis, I am encountering the physical type of disabilities. These things are more socially acceptable than mental illness, but not by much. Our culture is good, in that it encourages self-sufficiency, but bad, in that disability is viewed as weakness.

We really need to support each other, care for our neighbor, help those who need it, and generally love one another. Compassion is wonderful...pride and judgment, not so wonderful. It takes daily mindfullness to move in the direction of compassion.
Be well,
Margaret
 
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Anon_2912 replied to Anon_160275's response:
I guess I miss understood the question??

It was a simple question to me. Is it disabling me? "No" was my reply.


Maybe your having a bad day or something, but your post was really uncalled for.
 
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Caprice_WebMD_Staff replied to Anon_160275's response:
Hi Anon_160275 and welcome to WebMD,

We've often had discussions here on being disabled (or not) and it can be a very emotional topic for many here. I tried to word my questions to be sensitive to all those past responses and I'm sorry if my poor wording upset you.

I'm someone who does feel disabled by this condition and how it has impacted my own life. (I'm 50 and had it since my 20s.)

I hope you'll keep talking here (whether on this discussion or others) AND I really hope you'll ask some of those great questions! Those would be wonderful discussion starters and worth talking about. Some we've done before but that doesn't mean we couldn't do 'em again. We have so many new members, it would be terrific to see.

(To start your own new discussion, hold your cursor over the orange Post Now button on the upper right and choose 'Discussion' from the drop down menu which appears. Fill in the subject line and body of the message - you can ignore the poll part if you want - and Submit.)
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell


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