Replies to 'Physically Challenged Adults Support'

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 amkmom6089@aol.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