Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Shybasset, Well, you certainly are asking a lot of good questions. And, you have come to a place that will give you straight answers. I often wonder if we are too honest. It can be a lot to 'digest' at once. At any rate, you have touched on a sensitive issue for me: how much does this disease limit my lifestyle? I could write a thesis or I could simply answer in one word: A Lot! That is mainly the whole reason that most persons with chronic pancreatitis end up requiring disability. How and why it limits our lifestyles can vary, especially in what we considered to be the biggest detriment to being normal. There are also some common threads. Besides the chronic pain and narcotics that interfere with my ability to fully participate in the world around me, church, family, work, friendships, etc., has to do with the complete inability to make any plans. I never know how I am going to feel from one moment to the next, much less, one day to the next. I use the word " dipping. " I can be out with Tull having a good time, he can look away for a second, then look at me again, see me looking miserable, and only needs to ask, " Are you dipping again? " I try and incorporate this problem into my planning, (if you can call it planning) by making sure I always have a place to " perch " wherever I am. I haul my emergency medication box with me wherever I go, have a pillow, change of clothes (for diffuse sweating or emesis) and underwear (for sudden diarrhea). Going anywhere is such a major ordeal, most of the time I just stay at home. It just isn't worth it. That, unfortunately can make my depression feed on itself, so I do force myself to get out of the house, even if it is briefly. Of course, doctor's appointments come up frequently enough, so I claim those outings for my out of the house activities. The reason for this, though, is that I am only physically able to handle one big activity a day. And, 'big' means going to the grocery store, doctor's office, hospital for lab work, etc. Anything I do 'plan' I have to make sure that my absence from the event would not impact the quality of the event, since I never know if I will be able to keep the appointment. I have to cancel and reschedule nearly half of my doctor's appointment because I simply cannot get out of bed, bathe, get dressed, get out of the house, get in the car, drive to the appointment, park the car, walk inside the office, sit in the waiting room forever, go through the appointment, walk outside to the car, drive home, walk from the car to the house, get inside, change back into my PJs, and get in bed. I am exhausted thinking about how much effort all of that took. My goodness. I know that sounds sad, ridiculous, and over exaggerated. But the sad reality is that this is the truth. I learn to live with it, one day at a time, life everyone else. It all seems like such a horrendous disease and how can one adapt to such a catastrophic event in your life. But we do. Some how, some way, we rise to the occasion. And, amazingly, with all that we have lost, most of us are able to go to be still feeling grateful for all that we do have. Karyn , RN Executive Director, PAI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 , I was with Friday when he had two phone interviews with the Social Security people. This was to discuss his activities of daily living. He spent nearly 3 1/2 hours answering questions and twice I had to leave the room because just listening to him explain how he was living brought tears to my eyes. He too cannot plan anything and when he does something big - he ends up in bed for hours, sometimes days if he really overdid it and it is just simple, ordinary things that drain him over and over. He talks about the effort to get up and go to the kitchen to make a sandwich, or how hard it is to gather the items to use for his shower and now he only shaves once a week and then nicks his face up because he shakes, etc.... My strong, active, smart, wonderful son telling how he used to live his life coaching football, cub scouts, Sunday School, campouts, hikes, bike trips, snowmobiling, skiing, all these things he can't even consider. He can't even make it through dinner and a show with his wife. His 9-month-old kills him when he holds him because he likes to jump on daddy and if he hits his gut it ravages him with pain. I HATE IT SO MUCH!!!! Sorry - reading your post just sounded so much like him and it is not fair. Bless you and bless him for being the amazing people you are and finding small joys in this strange and horrid disease you live with. How I pray for a cure, over and over. Soon, I tell him, soon.... from Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 I can really relate! Yet the hardest thing for me is the waiting in line or sitting waiting for my name to be called. I have a hard enough time driving to an appointment. Lately doing laundry is a chore. I take part of the clothes then come back for more and then the laundry soap. I do everything in parts anymore. I remember the days of mountain bike riding for 15 miles out in the country for hours on end. It is so much different and how in a couple of years so much has changed. Walt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Heck, I can not even sit in front of the computer for any longer than an hour at the most without not starting to hurt more? Walt Quote Link to comment Share on other sites More sharing options...
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