janiedelite Posted October 19, 2010 Report Share Posted October 19, 2010 I don't really know if you can call it a relapse when I feel like my level of function was only slightly improved for a few months, after which I went back to my normal levels of fatigue, pain, etc. I've had POTS for over 4 years, been on long-term disability since then and was recently awarded SSDI. In June, I contacted my long-term disability company regarding trying to work part-time as a nurse. They had me complete a Functional Capacity Exam (which we had to pay for ), and the PT found that I could perform a low impact job with the qualifications that I only sit for 90 minutes a shift (because of back/hip pain), only stand 90 minutes a shift (because of POTS), and the rest of the time must be spent walking. The summer has brought on increased POTS symptoms, and my epidural injection has worn off for my back pain. Because of all this, and my limited abilities as demonstrated on the FCE, the LTD insurer and I decided that I won't be returning to work as an RN until I experience noticeable, long-term improvement. On the flip side, I'm thankful that I've got the LTD insurance as well as the SSDI. And I'm thankful that I'm well enough to help be a foster parent to our little girl. (We've always wanted kids but have unexplained infertility.) I love being a mom.I'm sure many of you POTSy's can relate to having an occasional "good day" ("good" is very relative, meaning that it's better than the normal painful, mind-numbing fatigue we experience constantly). This past spring I had a few months with more "good" days than bad, but I've had maybe 2 days during the last 3 months when I was able to function without regularly accommodating for my symptoms. During those "good" days, it's so hard to stop thinking about returning to work. I've always been driven and high-functioning until this illness, and during those brief bursts of energy I remember the "old" me. During days when I'm very sick, I don't even have energy to regret the old days of productivity and working.I'm more accepting of the limitations of my current physical abilities now than I was 4 years ago, but it's still a struggle. There are moments when I really do realize that I love my life, and am content with my limitations knowing that the struggle has made life sweeter. All the other days, I remind myself of the blessings (my wonderfully loving husband, good health care, supportive friends and family, our sweet foster daughter) and know that it's okay to feel that sometimes life isn't fair. Anyway, this post was longer than anticipated. I know many of you can relate. Hugs... Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted October 19, 2010 Report Share Posted October 19, 2010 You have such a realistic understanding and acceptance of this issue.Thank you for sharing your thoughts.I am so happy you can relax a little and realize that you have a good life even with the challenges and disability.I too struggle on the good days and dream of "what if"? I have been unable to work and am trying to manage life better. I put a sign on my fridge to remind me that "managing better does not mean it is time to take on more". It is time to catch up on a project that may have been waiting for years for me to finish! I have to remember that being a parent is also a wonderful way to help make the world a better place because of how we help to nurture them and make good things happen in the world. How delightful that you have the opportunity to be a foster mother!tearose Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 19, 2010 Author Report Share Posted October 19, 2010 Thanks, Tearose. I know you've gone through all of this as well, for much longer than most. It's such a blessing to feel like I'm not the first one to walk this path. Quote Link to comment Share on other sites More sharing options...
songcanary Posted October 19, 2010 Report Share Posted October 19, 2010 Tearose,It is a brilliant fridge sign! I'm in the same boat with wanting to do more on the occasional good days. Oh how frustrating this is. I have been dying to adopt a rescue dog so our little pup would have a nice playmate. BUT do I really have the stamina to properly train and housebreak a dog right now? I spent every day for months with our dog and she is on auto pilot and now I'm spoiled. Then I'll have a relapse and think how lucky I am to not have to adhere to a schedule right now. Ugh, what a predicament. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 20, 2010 Report Share Posted October 20, 2010 Sorry it didn't work out. I know how exciting it must have been, to think maybe you had beat it to some extent and were ready to take back some of your life! It may still come in the future, just not at this time. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 20, 2010 Author Report Share Posted October 20, 2010 Thanks, guys. You're so right about the frustration with this illness. It's impossible not to hope on the days when we feel a bit better. Quote Link to comment Share on other sites More sharing options...
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