Meet, Fibromyalgia Disability Advocate, Don Powell: Part 1

Top 6. Sep 26, 2003 4:16 PM

» Tery01 - Re: Re: Re: Re: Fibro Disabling?

In response to message posted by CarolWallace:

Hi Carol,

I don't think that someone who has disability means that they are necessarily disabled. I was curious I guess to know how Fibro can be accepted with disability when a lot of medical doctors or whomever doesn't take fibro seriously. But Tamara answered that for me smile

I know what you mean about disability vs. disabled. I have four kids with fibro(or some chronic illness) and I find myself unable to do a lot of things and I cannot do the things that I was capable of doing years ago. I am 37 years old with a three year old son and find myself in too much pain sometimes to take him to the park.

I was just wondering how does a person know if they are "disabling" with fibro? There are times I cannot lift my arms or have the energy to take care of my son. As a mom, I feel guilty and bad.

-- posted by Tery01

Top 7. Sep 26, 2003 4:30 PM

» Carol Wallace - Re: Re: Re: Re: Re: Fibro Disabling?

In response to message posted by Tery01:
i think what i was tryingto say is that what your disabilities are are relative. for me the short term memory problem was a disability because i absolutely could not teach. all the other problems are annoying, frustrating, etc. but not disabling given the life i lead and what i need to do. this current surgery rehab shows me that. right now the things i am unable to do boggles my mind.

it sounds like your fibro is at least sometimes a disability in your ability to parent the way you would like to. but it doesn;t deprive you of the ability to be a loving and caring parent. it takes away your ability to indulge incertain activities with your son. the key is to find substitutes.

as for fee;ling guilty - wipe that word right out of your vocabulary. it is not your fault. you can only be guilty when you make a conscious and deliberate bad choice. and i'm quite certain you didn't choose to be sick.

-- posted by Carol Wallace

Top 8. Sep 26, 2003 4:41 PM

» Tery01 - Fibro Disabling?

In response to message posted by CarolWallace:

Thanks for the support Carol smile

Well...I guess as a mom it is hard not to feel guilty. I mean, I do do other things with him, like paint and crafts, but to literally leave the house sometimes it is hard. Or if my arms are in a lot of pain then of course we don't paint LOL

I do take it one day at a time. I just find myself so exhausted and in pain over the "so-called" simplest things. Simplest to other people that is.

I could go food shopping and do a couple of errands in one day and then be shot for the rest of the day and evening and people don't get it.

That is why I was curious about the disability thing...not that I want disability, but wondering what clarifies it. smile

Thanks again Carol smile

-- posted by Tery01

Top 9. Sep 27, 2003 2:56 AM

» Skull13 - Re: Fibro Disabling?

In response to message posted by Tery01:

Carol...Denial is not just a river in Egypt. Semantics doesn't change facts. Having a disability makes you a part of the disabled community and techinically disabled. If you yourself can't get past the stigma, it will be that much harder for your family and friends. It took me a while. I had even been turned down for SSDI already once before I accepted my condition and that I was disabled. It doesn't mean I can't do anything...it does mean I have tremendous limits on what I can do. Some disabled people in wheelchairs today have virtually no limits because of changes in society and technology. They are actually better of than I am.

Read that last part again. Yes, there are people in wheelchairs who are better off than I am. I talk to them all the time and they have sympathy for me!!! One of my advocacy buddies who will be helping me to get my wheelchair fixed in in a wheelchair...he drives an accessable van, has an excellent state job helping the disabled, and he feels sorry for me because I can't get "Out Much."

-- posted by Skull13

Top 10. Sep 27, 2003 11:48 AM

» SarafromSODak - Re: Re: Fibro Disabling?

In response to message posted by Skull13:

Enjoyed the article Don & Tamara. Thanks.

Just to jump in here re: SSD, disabled, etc. My SSD is based soley on FM. As I have commented before, it was the fatigue that finally forced me to be unable to work. Since hubby is well employed, I did not need the SSI (I think that is the right name). For me going through the process in the beginning was a validating thing for me - proof that my condition, disease, whatever anybody wants to call it, is REAL. Then after I discovered the games that had to be played I got a little miffed and decided that I wanted to win the game. To do that I had to get an attorney.

Tery - I think you asked about SSD. There are links at Don's site for sure. I am no expert but can tell you that it is work related. Not being able to be gainfully employed. There are time limits on quarters worked, how much you've worked recently, how much you made, etc. In reading here and elsewhere I can also tell you that even though the guidelines are set, different areas in the US handle cases differently depending on interpretation. For example, with my history, I may not have been approved where you live, etc. To me the best starting point is to call your local SS office, not the toll free number, and they can ask some questions to see if you can apply. If income meets certain guidelines then SSI(again if I am calling it the right thing) may be an option.

Re: being disabled, I pretty much agree with Don. It is not pleasant, but it is what it is. There are different degrees of being disabled. To me it mainly means not being able to do any more what you were previously able to, or not being able to function as a "normal" person. Of course "normal" is relative, but you know what I mean. Just this week for the first time I signed up for a newsletter and disignated myself as "disabled" instead of "retired".

-- posted by SarafromSODak

Top 11. Sep 27, 2003 3:35 PM

» Carol Wallace - Re: Re: Re: Fibro Disabling?

In response to message posted by SarafromSODak:
i most certainly was not suggesting denial. but i have seen people look at the words "apply for disabilityy" and translate that to mean that they were non-functional, no longer able to make any difference, devoid of quality of life. and thatis untrue. if we look at ourselves we will find that we are unable to do some things - but more than able to do others. some of the things we can't do may not matter, given our lifestyles and preferred activities. others deprive us of activities we enjoy, and perhaps the ability to work. so we have disabilities in those areas.

i've seen tooo many people in my fibro classes think that the label 'disabled' was a sort of all or nothing proposdition. can you imagine the frustration and despair they would go through if they persisted in that type of thinking, rather than seeking out the many areas where they are still able?

i can tell you that since surgery i have felt pretty disabled in the larger sense of the word. there are only a few garments i can put on without help because i can't button things and if they don't have a huge neck hole i can't get them over my head. my husband has to cut my meat, and i can't lift things that a 5 year old would manage with no difficulty. i can't even hold a phone to my ear for long - and if i try the neck brace keeps hitting buttons and hanging up on me. i could say i'm unable to type except i have these two working fingers - and at long last just enough right hand mobility to turn the pages of a book. so i'm functioning at less than half my normal fibro capacity. right now i realkly could not function without a caregiver of some kind for most tasks we usually call mundane. that's what i call disability - and even then i keep concentrating on how much i am able to do. (if i did,'t i'd die of boredom. ;-)

most of us have disabilities, but most of us can still function without constant assistance. to me that is the distinction betyween having a disability (which will indeed often qualify you for disability insurance) and being disabled.

-- posted by Carol Wallace

Top 12. Sep 28, 2003 3:14 AM

» Skull13 - Re: Re: Re: Re: Fibro Disabling?

In response to message posted by CarolWallace:

Carol, et al. most in the disability community try to come up with different catchy phrases like ability-challenged and the like anything but handicapped or crippled. Just because you are disabled doesn't mean that you are useless. Most of the disabled activists I work with in my area, do more in getting around in a day than I do in 2 months!

-- posted by Skull13

Top 13. Dec 7, 2004 2:16 PM

» Charlotte88 - Re: Re: Re: Re: Fibro Disabling?

In response to Re: Re: Re: Fibro Disabling? posted by CarolWallace:

Hello Carol,

I often read what other people say about their Fibro, and can't always associate it with myself, but as you have described your disabilities, you are the closest I have come to with similarities.

I think the problem is that we are all similar, but different, just as all the many people with Multiple Sclerosis are different.

If asked I would have to say that I have had FM and CM for 16 years, but the truth could be that symptoms I had earlier than that were due to these problems and coloured me life accordingly.

I have slight visible problems which finally made the medical profession sit up and take notice, and also helped some of my family members to take my health problems finally seriously. But I had no problems in blowing my family out of my life and eventually my friends in order to keep my sanity, and my sense of humour and perspective. I have'nt been offered any psychiatric or psycological help or anti-depressants, there have been the times when I thought I was going mad, but belief in myself has always won through. Belief in others unfortunately has twindled over the years, and I do not take anything anyone says at face value, or as gospel.

Medics can be incredibly insensitive, probably because they like to have patients that they can cure, especially those with symptoms that are clearly defines and textbook. They miss a huge opportunity to learn from us.

Being disabled is different things to different people, I have a neighbour who plays on the fact that she has a prosthesis from one of her knees down, she will use her disability to conjure up sympathy from all around her, and as an excuse to not do what she does'nt want the responsibility of doing. Of course she gets away with it, because it is a defined disability.

To define the disability of Fibromyalgia and Chronic Fascia Pain is more complex.

I describe it as a see-saw, it is only when the pain is discomfort that I can appreciate the discomfort, rather like appreciating summer after winter.

I do not expect anyone to understand anymore, I find avoidance of people the best way of coping,I know many many people who have Rheumatoid Arthritis who's disabilities and pain are recognised and accepted as kosher. Yet, in knowing these people I have found that they, even at worse levels, are'nt as disabled as I.

One lady I used to go to art class with many years ago who had RA could hold a paintbrush and paint away for the whole of the classtime. However, I could'nt hold the brush for more than a couple of minutes without having to lay it down and rest. I also had to make excuses to stand up and walk around the classroom to help disperse the stiffness and pain. I saw this lady recently and she was still painting with the same level of gusto, and I have had to give up my hobby as my fingers have twisted upwards and I struggle to use them to feed myself or brush my teeth.

When I wear gloves my disfigured fingers are hidden, when I wear a coat my lopsided shoulders are hidden, people see a normal looking person. And if I swop my walking stick for a strong umbrella to aid my walking, then I look even more 'normal', and yes there is a standard of 'normal' But then, I know a lady with MS who looks 'normal' until it is spotted that she can't walk.

Disability is all about how it affects you, no-one else can tell you that you are or are'nt.

Fighting for acceptance for disability allowances is par for the course, here in the UK fibro is a recognised disorder for disability, but the criteria is one of 'how it affects you and your life' and not a matter of what your diagnosis is called.

If you have more than one diagnosis, which many people have, then other medical conditions will aggravate fibro and be aggravated by fibro.

I wish you all luck with your problems, I can't offer you any advise other than to throw away anger which society puts onto us, and believe in yourself and your right to be as visible and as taken seriously as anyone else with any other medical condition.

-- posted by Charlotte88

Top 14. Dec 14, 2004 4:04 PM

» Charlotte88 - Disabilities

Thank you skull for stating that there are people with more obvious society-accepted disabilities who can do more than we can, such as those in a wheelchair with good upper body strength who can race in a marathon...wonderful!

I have no problem with being disabled, I suffer from no illusions that it is all in my mind, or that I will suddenly become well one day.

As insidious as the onset occurred I know that it was due to the fact that it crept up on me over the years that I have had time to accept it. Whereas if I had been struck down in one blow I would have found it more difficult to accept.

As my father found it difficult being well one day and unable to walk the next day. It was his constant pain that wore him out, this was something I could understand, and I was the only person in the family who understood his plight.

Doctors will live and learn, as ME was once supposed to be something that was all in the mind, until an Edinburgh, that's Scotland folks! Doctor found a viral connection in ME patients.

Just as one person's MS is greater than anothers, so it will be proven one day that it is nothing to do with a persons ability to 'rise above it'.

-- posted by Charlotte88