Guest Julia59 Posted December 2, 2005 Report Share Posted December 2, 2005 I just got done talking to my sister in law on the phone. Apparently my brother feels that if he can work in his condition---then I should be able to work. My brother does have health problems, but on the same hand he also does not take care of himself. I think his last scare might change that however. He was pretty sick with pancreatitis----that is some pretty ugly stuff. Anyway he came though it OK---but has to change his style of living and a very, very low fat diet. He also has a number of problems with his shoulder, and back---and unfortunately has a fairly physical demanding job.However, he does not have anything close to the issues we suffer from on a daily basis. I can tell you right now I would get wiped out just getting ready for work. I have worked for a long time---about 25 years----some physically demanding----some in an office setting for the last 10 years. When a friend of mine came to town 2 years ago---I visited her everyday in the hospital for 2 hours twice a day---total of 4 hours. I crashed pretty bad by the end of the week----and that is what helped me to determine if I should file for SSDI---as this was somewhat like what a part time job would be.I'm not a sedentary type of person-----even on bad days I will try to do something----anything. I get judged for that------if I can go help my parents out for a couple of hours with dinner, or some light housework then I must be OK to work............. I'm one that will push until I can't push anymore. I like to help other people because it makes me feel useful---plus it comes in handy for the person being helped.Well I only do this if I am able........ A job does not allow us to decide when we are able-----you have to be there every day----on THEIR schedule----not ours----that's just not the way things work. If I help someone out-----they know I may need to leave or lay down.....and at times I could crash for weeks and be fairly house bound.One gift I have is sometimes knowing what a person is thinking mainly from watching their body language----and careful listening. My brother doesn't understand any of this----and until he does, he shouldn't judge. There is a lot more to POTS then body aches----and it's no picnic. Just watching TV can be so over stimulating it could send some of us to the pits of the pots hole. We all know what a malfunctioning autonomic nervous system can do-------it controls all out involuntary body functions.So if my brother would like to see what it's like to wake up out of a dead sleep with his heart race at 150 BPM, blood pressure of 70/50, then try to stand up only to get dizzy or pass out-----then deal with all the other fun stuff like digestive problems/or the digestive system just not working at all, bladder dysfunction, body aches---and profound fatigue-------then he may have a different opinion on what is disabling!And that's not the half of it as many of us have POTS along with other illnesses----and crippling spine problems due to EDS----or as something separate alltogether. Then let's not forget the horrible migraines----I often forget that symptom because it's not a major problem for me----so I could only imagine what that must be like when added to the rest of the mix.I hope the next time my brother sees me he will know the batttle that goes on inside my body everyday----on how much I struggle just to take care of my own home----and personal needs. WE are warriors to a degree---as we not only have to battle the daily struggles of dysautonomia and other coexisting diseases, but we also have to deal with the continuous ignorance in the medical society, and the judgement of family and other ignorant people.I have met a lot of people with various degrees of dysautonomia----and most of them are not able to handle gainful employment. Some are blessed with understanding bosses and are able to continue working, but it takes every fiber of thier being to find the strength.I am proud of my brother for how hard he works and how good he takes care of his family----but he has no idea on what I go through on a daily basis. I pray for him---and his health all the time. He has to have a colonoscopy----and endoscopy to look at some thickening on the wall of his colon. I pray he is OK----and would never want to see him suffer. I only wish him the best health possible----and his family as I love them dearly. It's difficult to continue caring for people who judge you------but I still try as I don't want to be the same way.It's a hard cold world out there-----and we are in no shape to fight it-------so I just try to look the other way, but it isn't easy..................... Julie :0) Quote Link to comment Share on other sites More sharing options...
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