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Vester
04-03-2009, 03:05 AM
I am still having a lot of problems with fatigue and is finding it extremely hard to work. If I don't work I am not going to be able to take care of my responsibilities. My Lupus symptoms are much better than they use to be but I still do feel bad a lot. I am never totally free of joint pain. I started back walking at least a mile or two at least 3-4 times a week but recently stopped because I felt like walking outside was causing me to flare up. Despite wearing sun block and walking after 5pm or before 10am was still causing my skin to breakout on my face and chest and sores in my mouth. I do have a gym in my apartment complex that I can use but I haven't done that yet. I guess I don't like the gym much and is really disappointed that I am unable to be outside because of my condition. One of the reasons why I stayed in CA is because I love the weather and where I live I love walking on the beach. I guess I need to get over that though. I haven't been able to take any vitamins either due to my problems with my stomach. What suggestions do you have that can help my fatigue. I am a night shift worker but that has never been a problem for me. I have no trouble staying up all night nor do I having trouble being on a regular schedule when I am off. I am currently looking for a desk job but there aren't that many jobs out there even for nurses believe it or not. I am currently an ICU nurse so my job requires me to be on my feet a lot. It also requires me to do a lot of lifting and moving patients. ICU can be an intense unit due to the status of patients which I don't feel like it causes me a lot of stress because I love my job. My body is just telling me different. I am just not able to work like I need to and I can't make my body do what my mind tells it to do. I am getting better because before I was getting stuck on the floor, could barely walk, couldn't use my hands, couldn't stand to be touched, so sick that I couldn't take care of my basic hygiene, could not stay awake etc. I am just trying to find a way to function so that I can keep my job and my health benefits. I have been in a situation before when I didn't have good insurance and I know how the health system work. I just paid those bills off after 4 years. Any suggestions will be appreciated because this disease has gotten me. It is so unpredictable. As a nurse in an acute care setting we really don't deal with a lot of Lupus patients unless they have renal failure and is in critical condition.(In ICU). I had no idea Lupus was like this. Our medical books can't and didn't paint a picture like what I am going through and the things that I have read from other Lupus patients. Any suggestions on fatigue would be appreciated. I am sorry that this thread may be all over the place but you know just like me that Lupus is all over the place(smile). Just a little anxious about all that is going on. Thanks.

rob
04-03-2009, 05:10 AM
Hi Vester,

I was diagnosed with SLE five years ago. I have what I call "lead blanket fatigue", and feel like I'm walking in sand, with a lead blanket draped over me most days. I was very active-full career, outdoors, climbing mountains, jumping out of perfectly good airplanes-all sorts of stuff. Unfortunately, I am on full disability now. One summer not too long ago, I hiked the Grand Canyon, twice in one summer. Now, a mile walk is very difficult to do, even on the good days.

I find that the only thing that helps with the fatigue is conserving as much energy as possible, and using what energy I do have only for the most important things I have to do each day. You are not at the point I am at obviously, and I hope you don't get to this point. You need to learn that you cannot do all the things you used to be able to do. I know it's hard, and it's incredibly frustrating. With Lupus, overexertion can cause a flare, and you want to avoid that at all cost. Your most important physical activity is your work. I would try to conserve energy and give the energy you do have to getting your job done each day, and use any energy you have left for the other tasks. I wish I had a better answer for you. You are so right when you say there is no book that can really paint a picture of what this disease is like. We look normal to most people, but we have this hidden enemy that stalks us every day, and can hit us like a load of bricks without notice.

I would say that you need to reduce stress in your life as much as possible, but that's nearly impossible most days, especially when working a stressful, and physically demanding job such as yours. Just go easy on yourself, and rest whenever you can. Use your energy wisely, and do your best to learn your new limitations. Of course, come here and vent whenever needed, it really helps.

Rob