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.
I too am disabled. I have MS and am in a wheelchair. I worked for many years with the elderly and with Hospice ( the terminally ill). I still feel like I could be a productive part of the work force but cannot get anyone to look past the wheelchair or work with me on the hours I put in as the fatique is awful. I am depressed most of the time but that is part of the disease so I don't need more obstacles to depress me more. But for the most part I try to make the best of my position in life and find ways to stay up beat all though it can be a challenge most days. I understand what you mean about people being unkind and uncaring and sometimes that includes your own family. But I try to stay close to my God and do the best I can do. Feel free to email me anytinme to chat. I would love to have a new friend. Sharon