There are days when I feel so very alone. There is no one dealing with my problems, no one can understand what I am going through. I am alone. Yup I am. I am alone because I haven’t learned to reach out to another. I am alone because I am too proud to tell people just how alone I am. That WAS me. It has taken me a very, very long time to admit I needed help but finally accepting that I am not invincible has kept me from being so very alone. Yes there are days when I really do not want to be around people, I want to be alone. Fortunately those days are few and far between. When I was working I was around a great many people and I do feel the loss but I am able to reach out to others daily if I want to.
There is a different kind of alone that only someone with a disease can understand fully. I may look as if there is nothing wrong with me (ignore the wheelchair) but looks are deceiving. When I was walking I appeared to be healthy but I was constantly aware of my situation. I had to be. I had to be careful not to get over tired, too hot, too cold, too much stress . . . .Life was difficult. It was more difficult because people were unable to understand my needs. Often my fatigue was believed to be simply an excuse to ‘get out of’ something. Appearances mean so much and they are so misleading.
Another person with MS might understand what I am going through but even there it is difficult because this disease is so different in each of us. What they can understand is how easy it is to be misunderstood. I am sure each of us has a story or two to tell. There is sadness and there is humour. This disease is a part of my life but it is not my life. And I am not alone.