Well, again I'm about to let the day end without having written anything. Today has been a very frustrating day! I have spent most of the day on the telephone. Some days, mostly on weekends, the phone doesn't ring once. Today, I hardly had a chance to hang up before it rang again. In the other volunteer work I do, people wanting information is just part of the job. I don't mind answering their questions when I can and many of them are very interesting to talk to.
Unfortunately, most everyone else who has this disorder I do, has problems on top of problems. Some of the situations are so horrible it nearly breaks my heart to hear the experiences and situations they have been through. My life has been bad in a lot of ways, but talking to some of these people, I realize how very lucky I am.
Yesterday and today so many of the phone calls have just been people needing someone to talk to - to vent to. I can certainly understand the need for that; goodness knows I have vented to my friend and partner often enough. But, it is the ones who keep asking "why?" that are the most taxing for me. I've gone through some of that myself, wondering why my life has been one of pain and frustrations, limitations and loneliness. But to have others, in great despair, ask me over and over for hours on the phone, why people don't understand their conditions, why the health care system is so messed up in this country, why doctors won't listen to them, why, why, why..............exhaustes me both physically and emotionally. I wish I had answers for the "whys" and I wish I could do something to make things better for them. But all I can do is listen and sympathize.
It probably sounds mean and uncaring to admit that a day of that kind of phone calls takes such a toll on me. I'm not uncaring........maybe I care too much. I can identify with a lot of their anguish, so it angers me and frustrates me that situations for people with this disorder is like it is. It is probably also good for me in that it does make me appreciate the life I had growing up and the one I have today. My childhood was far from perfect, but I at least had loving parents who did the best they could to take care of their child with the strange medical problems. I have a roof over my head and certainly more food than I need. I have friends that care about me, family members to help me when I need it.
I am sad and exhausted from the phone calls and despair of people I have talked to, but at the same time, I feel very fortunate to have the life I have.