What can you say...
Recovering from the latest infection. Things are OK. I wish I could say it was great. I am still trying to adjust and recover. As I move closer to the two year mark since my surgery and "cure", I move from trying to recover to mostly trying to adjust.
I know everyone is tired of it. Thinking about it. Talking about it. Living it. The thing is, I am tired of it all. The doctor offered to have someone come talk to us at home for mental health. I think I will take her up on the offer. I think...I Think it is not healthy to dwell on what I lost physically, mentally, and emotionally.
I know I have said it before, but I am not sure how to do that when you live with the after effects of the past disease and the current effect of the new one, Addison's Disease. Surely there is some way to come to terms and go on. I am not sure how to fit that in between the puking, nausea, utter exhaustion, sleeplessness, constant infections...you get the point.
I feel ashamed for still feeling bad. People don't really want to hear about it, even though they ask how are you. You can see it on their faces, "I hope he just says ok", and that is what I tell everyone now. I used to tell everyone I was fine, out of habit, but it feels like a lie every time I utter it. I know I sound ... negative or something bordering on it. If you haven't went through it, it is hard to understand. After years of living it, it is hard not to let it consume conversations and thoughts. You just want people to understand why it is you miss work, church, social events, ball games and the list is long.
I don't want pity or tears, but it would be nice if people understood my life. Not because my life is any worse than anyone else having problems, but because I have to live in this egg shell that is my life. I just want to be understood.
I do have good things that happen. I have adjusted somewhat. I don't feel negative about life or living. I am quite happy about that latter. I miss things I used to do but have time to do things now I really love. I assure you, that I am thankful for everything in life, but when you live a constant illness and feel crappy, what can you say?
I know everyone is tired of it. Thinking about it. Talking about it. Living it. The thing is, I am tired of it all. The doctor offered to have someone come talk to us at home for mental health. I think I will take her up on the offer. I think...I Think it is not healthy to dwell on what I lost physically, mentally, and emotionally.
I know I have said it before, but I am not sure how to do that when you live with the after effects of the past disease and the current effect of the new one, Addison's Disease. Surely there is some way to come to terms and go on. I am not sure how to fit that in between the puking, nausea, utter exhaustion, sleeplessness, constant infections...you get the point.
I feel ashamed for still feeling bad. People don't really want to hear about it, even though they ask how are you. You can see it on their faces, "I hope he just says ok", and that is what I tell everyone now. I used to tell everyone I was fine, out of habit, but it feels like a lie every time I utter it. I know I sound ... negative or something bordering on it. If you haven't went through it, it is hard to understand. After years of living it, it is hard not to let it consume conversations and thoughts. You just want people to understand why it is you miss work, church, social events, ball games and the list is long.
I don't want pity or tears, but it would be nice if people understood my life. Not because my life is any worse than anyone else having problems, but because I have to live in this egg shell that is my life. I just want to be understood.
I do have good things that happen. I have adjusted somewhat. I don't feel negative about life or living. I am quite happy about that latter. I miss things I used to do but have time to do things now I really love. I assure you, that I am thankful for everything in life, but when you live a constant illness and feel crappy, what can you say?
You probably don't remember me from the boards but I just wanted to say I and others do understand. You are an amazing writer and put into words what so many of us feel. Thank you.
I too have had a failed pit surgery and I will be moving on to a BLA soon. I am scared and unsure but I have to do something to be able to function more than what I am now. I am beginning to see not only more physical signs but the mental issues are what scares me the most.
Thanks again for putting into words so eloquently what so many of us feel everyday.
Liz (lizabug on the boards)