Starting to have more fatigue days than usual. Just wondering how many of you had to leave work due to fatigue. If so, what was your tipping point. What happened that made you say to yourself I can no longer do this?
I too had to leave my career. I no longer felt I was capable of making all deadlines and to be sure that my work was accurate. Most of my employers knew about my MS and were supportive. I left when I need to sleep as soon as I got home from work every day vs once in awhile, my moods became extreme and anxiety increased. It was a huge financial loss but a health benefit. Guilt galore!! Still feel extremely guilty that I am not the superwoman I thought I was and having my family sacrifice because of me. But I learned & am still learning to be grateful for their love & support. That is priceless!
I told my husband last night but I don't know how much longer I can keep this up. The fatigue and the cognitive issues are really messing up my day. I hate just sitting at my desk, like a lost child trying to figure out what it is I'm supposed to be doing. By the time I figure out what it is I need to do, the day is about half gone, and then I have to stay late at work to finish it. I am the supervisor, I can't be sitting there looking crazy! My staff knows that I have MS, and they are extremely supportive. I don't think I could've asked for a better group of people around me. I am so afraid, I'm going to screw something up big-time it work. Something that can't be fixed. Something that is going to end up costing the hospital millions, I just don't want that on my conscience. I check and doublecheck my work constantly but there still seems to be a problem or error somewhere. This week was one of those weeks where I would love to say let's just file disability and get it over with. I am the only working person in the house, that's a lot of pressure. I'm carrying the insurance our family and covering all of the bills. Sometimes, it's just too much. The fatigue has gotten worse, and it's only going to get worse with us marching into summer. Oh what fun!
So many of you have added comments since I posted mine and I just want to add one thing that I have learned over the years. I, too, strived to to be 'superwoman.' I have learned, however, that there is no such thing. She lives only in the comic books and we do ourselves a serious disservice thinking we need to meet these outrageous standards that we set for ourselves. I became a single mother when my daughter was 2. was her sole supporter and the only one she could count on for anything, so I felt a lot of pressure to make a good salary, keep getting better positions that brought more money, PLUS be at every school or after school function. I was diagnosed when she was only in junior high school but had spine problems and surgeries since I was 13. I had to learn early that I couldn't do everything and forgive myself for that. I found I was a better mother if I attended as much as I could, forgave myself for what I couldn't do, and gave her all the love I could. She thrived and is now an attorney, a happily married mother of two, and tells me often how much she appreciates how much I did for her. I have been on permanent disability now for 18 years, still miss my old life every day, and still work on accepting the continuing changes I notice in my body and mind, and forgiving myself. I have many MS symptoms but fatigue is the one that is consistent and forever with me. Good luck to all of you.
Fatigue was a major issue. I had a very demanding position as vice president of a college in NYC and it required me to travel all over the city for meetings and to attend events in the evenings and on weekends. In addition to MS I have a spine condition that required four major surgeries, including a double fusion and I live with chronic pain as a result. I believe it was the combination of the fatigue and pain that did me in. My body would go into major body spasms that feel like my body just says to my brain that it refuses to do anymore, things cut out completely and I begin to spasm from head to foot, my arms and legs tighten up with my legs going up behind my back and it takes a few hours after getting an IV muscle relaxer before I am straightened out again. It is very painful. The spasms have stopped getting to this severity since I stopped working in 1998, but I still have episodes at times. I hope your episodes have stopped since you stopped working. I have to add that making the decision to stop working was one of the most difficult I have ever made. I worked very hard to get where I was in my career and I loved i, and then suddenly I felt like I had no identity, no purpose, and am still working to find a new path through my advocacy work on behalf of those who live with pain, disabilities, and chronic illness (MS). It is a long, difficult journey and I don't have the energy I once had. But then again, who does, right? I am working on setting realistic goals. Thanks for bringing up this topic.