This is both my "What its like" along with "How we cop".
My sickness just keeping getting worse and worse. Stuck in a wheel chair for my safety, plunged with hundreds of meds to hopefully keep the seizures under control, but they keep getting worse.
I feel like my body is dematerializing, blowing, washing away into the universal mixture that is earth. That feeling gets stronger, I'm not longer here, even the people that walk around me don't see me. I'm invisible. My friends don't see me, my family doesn't see me. I'm here, sitting in my chair, by my compter. I look up as my children play and walk by, and give them the strongest smile that I have to give, but it was as if I was smiling into nothing, even though my eyes are clearly asking for attention. It'd had gotten so bad that I no longer wanted to be here, what was the point? If I were gone, no one would miss me. Would they even look at the empty chair and remember who sat there? Who woke up, fighting pain and illness day after day, just so they can have me... Was it all a waste? I'm disappearing more. My eye's are hallow and I begin to believe these things that I am thinking. I'm so alone. I don't want to be alone, I don't want to be in pain, slowly dying being useless here.
I got so discouraged one evening and put up a message that was startling to my friend and she immediately called the police in fear for my safety. Feelings emotions flared up immediately. First panic because I have a people phobia, and as the police came in, I feared for my children in the other room sleeping, they ask about them and I reply. I had done nothing wrong at this point. Nothing to endanger myself or my children. It woke me up from my sleeping abyssal, ajared me, who I was. What I was living for. And it was for my children. To be their mother, no matter how sick I become. They understand this. I remember all those times they gave me hugs and kisses, knowing they have their own agenda.
Since that day everytime I start to feel that way, washed up, pushed away. I remember, speak out, draw their eyes to me so that they can see me smiling at them, showing them I love them even though I am so sick. When that feeling comes I make it from something bad, to something good. I fade out, but NOT away. I got to my place where there are colors and lights, fireflies. To my fantasy realm, draw, play games. Take a break from reality just for a little bit at a time and usually not when the kids are around, and if they are, they enjoy my fantasy. Hopie, my daughter even enjoys my fantasies. We even draw together and make fun creatures, and my heart swells. It swells in a way that a happy family should. And in a way that even though i am sick and getting worse, I should strive to give them all I can while I am still here.