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Messages By: connaf

connaf
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October 4, 2006, 7:44 am PDT

Physically Challenged Adults Support

Thank you all for sharing.  I too dislike the term physically challended.  It makes what we live with sound too simple, like a neatly tied package. I am only 50 but have had moderate to severe arthritis for over 25 years.  It started in my knee when I was 20.  Now, it affects my hands, feet, both knees, neck and back.  For about 10  years now I have had to use a cane and when I go to the store  or anywhere I have to walk over 20 minutes, I have to use a wheelchair.  Going anywhere is a hassle because you have to plan almost every step to see if you can handle it physically.  You have to make sure the places are wheelchair friendly and many are not. especially the bathrooms.  What some places consider handicapped bathrooms is a joke.  It is getting so I just want to stay home most the time. 

 

Recently my family was planning a 3 day vacation to Philadelphia.  I just could not get excited about going. I used to love to travel and see new places.  Now I have to do so much reasearch to see if I can even access the places we want to go.  Now it is just such a big hassle that I do not have the energy to tackle.  We ended up not going on the trip because my husband became ill.  I was sorry he was sick but it felt good for once not to be the reason we did not do something.  I feel like such a burden to my family. 

 

Most days the only way I get things done is in 15 minutes increments.  I can clean for 10-15 minutes then I have to rest.  It  may take me all day to do the simplest tasks like vacuuming, laundry, and dishes.  I can't even walk the dog most days.  I miss that most because at least I was getting some exercise.  My weight is going up and up and I haven't been able to stop it.  I know it is my choice to eat what I do.  I get so discouraged and so lonely.  Sometimes I just pray for God to let me die becasue I am so tired of living with the pain.  I rarely go out with friends anymore and even going to church is a struggle.  It is just so amazing how much chronic pain takes out of you physically and emotionally.

 

I also have IBS, chronic pelvic pain sydrome, interstitial cystistis and I struggle with depression. 

 

 Sometimes I just sit and cry becasue it feels like I can not take anymore.  But I do.  I go on. 

 

Thank you for reading this.  It is nice to talk with people who understand. 

 

 

 

 

 

 
 
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connaf
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October 4, 2006, 7:58 am PDT

Physically Challenged Adults Support

Quote From: cherio84

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

Cheri,

 

I so undertsand what you are saying.  It is difficult for people who do not have these physical problems to comprehend the enourmous amount of effort it takes just to get ready to go out the door.  By the time you get cleaned up and dressed you are already tired and in pain.  Then to be around people and interact with them takes all the energy you have left.  By the time you get home you are so exhausted it takes days to recover and in the meantime you are not able to do the "chores" you usually do and things pile up around you.  They do not understand because they can not "see" your pain.  They do not know what it takes for you to be there. 

 

I just wanted to say I do understand and I am so glad you decided to post.  I think this is going to be a place I come often to connect with people who understand my world and my struggles.

 

Connie
 
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