Replies to 'Physically Challenged Adults Support'

I also have a very dibilitating illness Called Fibromyalgia coupled with Chronic Fatigue.  I have many if not most of the same symptoms as thoses with MS except for the fact that I am not bound to a wheelchair.  Many with FMS have been confined to a wheelchair for long periods of time.  I was 35 years of age when the Fibromyalgia took it's toll on me and I was forced to quit working.  Many people and doctors do not believe that Fibromyalgia is a real medical condition and thus I have no support and I am not taken seriously when I tell people that I just not able to do certian tasks no matter how big or small or small they may be. 

When I was working I was a custodial superviser and floor finisher.  I had always been a strong, healthy, dynamic person until this illness snuck up on me and took my life out from under me.  My muscles grew weaker and my cognition was starting to fade away from all the things I needed to concentrate on.  To this day there are imes I can't even get out of bed and tend to my children and the usuall househol chores. 

My family sees me as "looking fine" so they can't understand why I don't do more.  The doctors I have seen do not know much about this illness so all they do is give out prescriptions and hope I feel better.  Doctors do not like it when I try to inform on what I have learned and ask for  a certian test or treatment that have been proven to help some.  They always tell give me some story about how they have to follow the regiment of medications and we always start on the lowest dose even though they know I have a very high tolorance to medications. 

I have never in my life been addicted to anything and my immune system had always been compromised.  My body always feels like I have a fire burning from the inside out while my skin crawls with the discomfort of many bruises just from the slightest bump into a chair or table.  My energy must be stored up for a few days to be able to accompany my family to any event that will last more than 30 minutes.  I cann't read a book because my comprehension is so far gone most times.  I read the same sentance or papgraph  4 times and still don't undestand.  My muscle tissue feels like it is literally tearing from my organs, bones, muscles. 

Thing is, I can force myself to a shower and put on a nice casual outfit and put on the make-up then do the hair and I look like I am ready to tackle the world.  But what people do not understand is that on the inside I  burning from pain, I legs do not want to stand around a mingle, on occassion one or both of my arms are so weak that it takes all I have to greet someone and shake thier hand. 

It just goes to show thtat being disabled does not always mean confined to a wheelchair or a bedroom.  Many times disabled simply means UNable to be person on the inside because the outside of the body cannot perform like it once did.

Cheri

Greetings.

I worked for over 20 years as a nurse for mentally challenged children and adults.  During this time, it took me over 22 years to obtain a degree in Psychology/Sociology.  I had dreams of going into Christian Counseling until I contracted Guillian Barre last year.  The doctors denial of my denial of being ill almost cost me my life.  lost all ability to walk, talk, feed myself, and perform all daily personal care, and spent 6 months in two rehabilitation hospitals.

I truly took the ability to function without assistance for granted until I found myself in a wheelchair.  One thing I did  notice was pay telephones are not equipped for handicapped people.  If I could not place the money in the slot in time my call was disconnected and I had to try to dial all over again.  Also, I tried to maneuver the wheelchair into elevators, only to have the door continued closing on me.  The one thing I did notice was that a majority of people are kind and are willing to help.  But, there is also an equal or greater amount of people who stare and make very rude statements about my disability.  I may not look sick on the outside, but live within me with all the pain and discomfort that I endure each day, and perhaps you too will see how hard it is to leave home.  I know that children are inquisitive and will often stare, but when they are accompanied with an adult, they are not corrected when their remarks equal the same prejudicial remarks.

I once had a 6year old child comment that all wheelchair people should not be allowed in the stores because it slows regular people from shopping.  I was deeply hurt, but increasingly mad at the parents who just chucked and walked away.

My one main complaint is that even though I am disabled now, there are few employers who will take the chance and hire you.  Of course the Office of Vocation Rehabilitation is available, but when the unemployment rate in your living area is high, an abled person will be considered over the disabled. 

Do you have any suggestions how I can become a viable person to society while I am still speed riding my wheelchair?

Sue