res Posted July 6, 2014 Report Share Posted July 6, 2014 I've had a couple major health improvements (going from housebound to able to work part-time) because of supplements that I figured out on my own, but whenever my health improves the demands on me go up, too. There's never more than a brief period where I can actually do what I'm expected to do. It's emotionally draining and physically very rough, to an extent that's difficult to convey - I don't think most people can imagine what it's like to use all your coping abilities and still have frequent emotional and physical breakdowns and have that continue for years and years. I don't know how to change this except to stop working or somehow fix my health. I know that every time I'm unable to work I risk permanent unemployment. But I don't have the mental or physical resources to look for another job while employed. I also think that if I stop work, the relief will be so great that I won't be able to force myself to get another job. I've been trying to fix my health, but when I describe symptoms to my doctors they give me a blank look and say "I haven't heard of that before." One of my doctors even told me that my problems were "unsolvable by Western medicine".I know that I'm supposed to go from doctor to doctor until I find someone who will listen, but I'm not able to do that while also working. I kind of feel like my doctors expect me to go home and just not have treatment, but that leaves me with the same problem as before - the demands on me exceed what I'm able to do because they go up every time I'm able to do more. I have a lot of coping skills which can get me through temporary crises, but those coping skills don't do anything to affect the primary problem where whenever my health improves, I'm expected to do more than I can do. I don't know what other people do that makes their lives so tolerable despite being so sick and being pushed so far beyond your limits. What is it that you are doing that makes your lives so bearable? Quote Link to comment Share on other sites More sharing options...
Goschi Posted July 7, 2014 Report Share Posted July 7, 2014 Res, I have been caught in exactely this kind of circle for the last 3-4 years! I could have written every word of your posting...Thus I am very much looking forward to answers from others! Quote Link to comment Share on other sites More sharing options...
est_sunshine Posted July 7, 2014 Report Share Posted July 7, 2014 Oh my goodness yes that is me too! Working full time is SO HARD i use up all the leave i can and somehow bumble through. All I can say is don't feel guilty for any decisions you make in your own best interest x Quote Link to comment Share on other sites More sharing options...
edriscoll Posted July 7, 2014 Report Share Posted July 7, 2014 I struggled for 10 years working full time in a very demanding career. While working brought me immense satisfaction and self esteem, it also caused me great harm physically. I couldn't take care of myself the way I needed to while working. I finally became so ill that I was having "episodes" in the middle of meetings with the executive management team, during training sessions (where I was the trainer) and finally, in front of several of our top clients. My employer (it was a privately owned company) was extremely understanding, patient and kind. He never would have fired me, but I could tell that he was really torn about what to do. I was most definitely hurting the company as well as myself. My department went from exceeding our budget by 60% to NOT meeting our budget by 40%. I finally had to say "Uncle" and filed for disability. I am 54 years old and not sure of the ages of the people writing this question. But disability is a very long, difficult road and requires a lot of support from family and friends. However, the GIGANTIC bright spot in all of this is that now that I do not have the constant pressure of being somewhere regardless of how I sick I am that day. No more feeling mortified because I passed out and lost bladder control in the middle of a team of 30 co-workers. No more DRIVING after only getting 2 hours of sleep the night before. Now, I can be active at the times of day that work best for me (mornings) and I can walk and move at a slower pace so that my body has more time to adjust to changes. I can rest when I need to. I am actually a bit more active since not working because I can do things at my own pace and stagger activities and rest the way my body seems to need to. I can only say that it has been a blessing for me to stay at home. The challenge is to realize that you HAVE to find ways to keep busy that include using your body and muscles. I do some gardening, I sew, I cook - all when I am up to it obviously. But do NOT stop working if you think it will mean watching tv or being on the computer all day. I think that would be the worse thing a dyautonomic patient can do. (not sure if that is a real word, lol) Good luck finding what will work for you. You are not alone in this.... Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 7, 2014 Report Share Posted July 7, 2014 My heart goes goes out to all of you because I worry about my son's future as an adult. I really just don't understand why doctors cannot get this disease figured out because I only think this is only going to get worse. Finding a doctor that will work on your behalf is worth it all. I just want to encourage everyone not to give up on finding a doctor. You deserve to have your life back. Quote Link to comment Share on other sites More sharing options...
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