Humans of ME/CFS

I was a totally outgoing and social butterfly, working 2-3 jobs at a time. I loved to work and to travel. Then in 2000, I caught mono from a drinking glass in a bar; that was a real struggle. In 2002, I was rear-ended and never fully recovered. The hardest thing for me besides dealing with the illness was dealing with who I was without work. I still feel ashamed when anyone asks me what I do for a living. I say I am disabled and deal with their reaction: “Oh, you look fine,” and so on. Expectations from me are always difficult.  People think I should be who I was, and I have done a 359 degree turn from who I was. Fatigue or pain rule my days, and each day is a struggle. Most of the time, I have to settle for less, with many disappointments and lost time, time spent doing nothing but feeling pain and fatigue. I miss my life. I miss not owning a pet. I had to allow my wonderful little parrot to be adopted; I cried for days. Disability was a nightmare. It took 3 and 1/2 years to get and only with the help of my Congresswoman. The judge was asked to retire early, sued for all his lies.  I had to move in with my mom and then had to become a caregiver to her when she became ill. I walked around like a zombie for years; I did not go to doctors for myself. I have no idea how I got through it-only by the grace of God!  Now I live with my sister; she is kind to house me. But I ache to be independent and have my own life. It is depressing. I was never been depressed in my life. I got past the suicide thoughts to just acceptance, but that is a very hard pill to swallow on days I have to say no to something I really want to do. I have had to move to another area and I miss my friends. Sadly, it takes energy to make new friends.  I just do not have it. I try to keep my head up, but sometimes I just cave and stay in bed and do nothing until I can get my head around the pain or fatigue again. It is an endless struggle and there is no light at the end of the tunnel. Now I am starting a new insurance. The process of setting up and finding new doctors is daunting.  It can take months, and each doctor thinks they know what is best.  When I have worked out what works for me, I just need them to listen, and allow me to treat myself with what I know works. I pray that in my lifetime there is a cure, but I doubt it; the funding is just not there.