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 - I also have Fibromyalgia & CFS. I'm 42 and have had it for 10 years. At first I thought I was dying and the doctors just couldn't figure out what from. Then when I realized I wasn't dying, but would have to live with this indefinitely, I wished I was dying. But, a strange thing happened. After being in bed for 6 straight months, I spent a lot of time reading, studying my Bible, writing, e-mailing friends - I began to gain encouragement. I may have lost who I was on the outside, and I have to live with a lot of pain, confusion, depression, fatigue like no one can fathom...I became a new person on the inside. I had plenty of pity parties (& still do!!!), and I feel it's ok to get down sometimes. I just finally chose to not STAY down. This illness may have my body, but it couldn't have my spirit. I was and am still worth something. There are still things I CAN do. I CAN be an encouragement to others, including my husband and children. I can send notes or cards to others who are in even worse shape than I am. I can pace myself, plan rest days, and enjoy moments that I DO feel ok. I can go to my daughter's softball games, whether I'm in a wheelchair or walking, lots of pain or not, I go anyway. The disease WILL NOT rob me or my daughter of that. I have had to give up a lot of things-physical strength, energy, living without pain everyday, sleep, memory, being able to eat anything and not get "sick" from it (I have IBS), smaller waist line, ability to do a lot of things I used to do, such as work full time, ride a bike, go for a jog or even a long walk...But I force myself to focus on what I CAN do. I know it sounds cliche', but what are my options? I can feel sorry for myself and stay in bed, or I can do the best I can with what I have and focus on the good. (Remind me of that on my next "bad" day!! =) You're right - people DON'T understand. I look, for the most part, basically healthy. But I guess I don't really understand what it's like to live with cancer, or severe Type I Diabetes, or Parkinson's, or a heart condition. That's why I think it's soooooo important to connect with a person or persons who DO understand, such as a support group or just a friend. God gave me a friend shortly after I was diagnosed. She also had (& still has) CFS/FMS. We were the only 2 people in the world it seemed that understood each other. We still stay in touch, just not as often. But it has helped me more than I can say to have a friend who understands exactly how I feel. Do you have a local support group you could contact? You can get on the national CFIDS website and try to locate one in your area. I do feel for you, and understand the pain, frustration, sense of loss and sometimes worthlessness - but you ARE worth something!! There is SOMETHING in this world that ONLY you can do. It may be as simple as caring for your grandmother or sending frequent notes to a nursing home resident that no one else visits...But reaching out to others is THE #1 anecdote for depression and discouragement. But anytime you'd like to "talk", please feel free to e-mail me at email@example.com. Sorry this is so long! Hope you didn't get too tired reading it!!! Take care of yourself, and take life one day at a time, literally. Julie from Oklahoma