Good morning to all. I have been away from the puter for a few days and have missed so much. I have been pulling an allo nighter and its 4:52 am and I am still up. I suppose I will crash at some point. My sleeping habits are just so lousy and its killing my body for sure. I sleep so little and I am not a day time sleeper so I walk around exhausted.
I have read the posts and I can honestly say I think at some point I have felt every single thing everyone has posted about. I still have days when many of these things creep in if I am not carefull. My problems stem from numerous health conditions hitting me all at one time, it was like a domino effect. Crohns disease totally ruined my life and turned my world upside down, it yanked the carpet out from under me, not the rug, the carpet. In the middle of this, the severe CP hit with full force. It did me in, I could take no more. I had battled CP for many, many years and did every kind of treatment known to mankind to keep working. That was goal to keep going and keep working, little did I know. At least at my job once I got there I could throw myself into my work to attempt to distract myself from the pain. I was so bull headed and listened to none of the warnings my body was giving me. I wish I had heeded some of those warnings. There are alot of blank spots for me in those years mainly from the medication I was taking.
When I finally gave in and stopped working I thought my life was over. Depression took hold like never before, I ended up in bed for a good year. I was sick and I was in horrible pain. It seemed like every time I was tried on a new crohns drug my hopes got dashed, every new pain pill my hopes would get dashed. I was a difficult patient to treat in both illnesses because of not being able to tolerate lots of medications . Nothing was coming together and I was coming undone. I became a bitter, I didn't understand everything that was happening to me or why. Guilt, oh I felt tremendous guilt. This crazy 500 MPH woman disappeared over night and was replaced by this shell of a person. My husband had really leaned on me and counted on me for many years due to an illness that took his health away. He depended on me to take care of things he couldn't. I couldn't do simple things. I had become the strong one for both of us, but that was gone. We were both flailing around blaming each other. He resented me for being sick, I resented him for resented him for resenting me, it was a never ending battle it felt like. I knew he was scared when all this happened with me-hell so was I. But, it was like he thought I could turn it off and on like a water faucet. I really lost my fight when I stopped working. I had fought pain so hard for so many years. I don't know what happened to me that I lost my fight, maybe it was because of the other health problems, I really don't know. I spent alot of time asking why me, totally withdrew from everyone in the family, friends the whole bit. I went into my own sick little world. I found a dark place that I fit in.
With the help of a good psychologist, she got me out of the dark hole. In many ways she literally saved my life. She was a wonderful person that could draw me out. She helped me understand so much. It was incredible what she was able to help me with. I was so lucky in finding her when I did.
One of my big problems in dealing with all of this is, I was always the care giver. I was the one that took care of everyone else's needs, when they were sick or whatever. I took care of my sister and her daughter, my Mom when she was dx'd with terminal lung cancer, with my Dad when he had heart surgery and died. I did not know how to take care of me. This is a bigger problem than most realize. I felt guilty because I was sick, I was not allowed to be sick, I was too busy seeing to everyone else's needs. Of course not working and being put on SSD was a real blow in the $ department, that was another stress, endless drs visits, hospitalizations out the whazoo it just never seemed to end. My husband said to me one time if I quit going to the dr I would get well!!! Old school guy, you just suck it up and you don't go to a dr.
I grieved for my old life I wanted it back so bad. I know I have lived thru every kind of emotion possible living with sickness and CP. It was like being on a runaway roller coaster and I wanted off so badly. I had so much fear me, the unknown. Just when I thought I was getting off the roller coaster two years ago, I became really sick one more time, only this time in the hospital I was there because I could not breathe. So, I left there on oxygen. That was a big blow. That was a bitter pill to swallow. In the beginning I felt like a dog on a leash, walking around the house with this tubing behind me. If I left the house I was hooked up to a portable. I had a hard time going out in public with oxygen on, I was embarrassed, scared to death I may run into someone I know. It was not much fun. I stayed pretty down for awhile and finaly after so much talking to my sister who is also an oxygen patient she helped me deal with it pretty much.
Do I still grieve for my old life, you bet, do I still have days when I am down from the magnitude of this whole mess, you bet, do I still blame myself for all of this, no-not anymore, do I feel guilty at times, absolutely.
I truly believe that we are some of the strongest people you will ever run across. Not everyone could live with what we have, it takes a mighty strong person to deal with what we have been dealt.
For you men that have posted. I truly commend you and admire you. You have shown you are only human, none of us are weak, we are very strong. It took alot for you guys to really lay the cards out on the table for everyone to look at it, but you did a great job. You had the courage to post and share with us what its like for you.
Hope we can find a good lpd. Hugs to all, Susie