Can anyone share their own experience with me on what it is like to deal with this illness on a day to day basis, if you have limitations on what you can get done, if you are able to work, how tired do you get, does the fatigue come and go or do you find yourself constantly exhausted, does the tiredness come directly from having the connective tissue disease or do you have some form of blood disease or organ involvement that causes it?
Do you exercise and eat healthy? Does it really make any impact on the way you feel?
I am taking online medical courses right now and I'm really having a struggle with it. I wanted some time off but my doctor thinks I should keep pushing myself into doing it. I think he's right. If I can't manage this, how am I going to manage working. I'm so stressed over worrying about how I am going to be able to handle holding down a job. I would figure the majority of employeers would not understand or care that I have limitations and would expect me to work even if I have a bad flare up. If your doctor writes you time off, the employeer can't exactly fire you over that though, right?
Please share your experience with me on what it is like to deal with this "energy" wise. I know the pain is always there, well for me, I deal with both of those problems but my fatigue is quite severe. I don't understand how this disease makes me so tired. Without plaquenil, I would sleep 20 to 22 hours a day. It is not affecting my blood, I do not have organ damage, I don't understand why/how it would drain my energy like this.
The fatigue is often the worst part. Rob once called it "lead blanket fatigue" and I think that really does sum up what it is like. A tiredness so severe it is like someone is covering you with a lead blanket. It take so much effort to even move when flaring.
I will let others answer your questions about working because I no longer do that. I was forced by this disease to go out on disability so my sole job is my family now.
Greetings Shelby. I find with me that there are different levels of the fatigue. On a normal day I have to force myself to get up and get moving and that only goes so far. On the bad days I pretty much don't do nothin. Like tgal I also am no longer working, got approved for ssdi a couple of weeks ago:~} A couple of years ago when I was still working I went on a raw food diet, I think it really did help to a point but at the time I was also on prednisone and living in Chico California area and the raw produce was very abundant and tasty and fresh. Moved back to Klamath falls and the fresh produce dont look so appetizing and lacked the flavor, I am a pickey old fart aint I. So now I am back to my old eating habits when I have an appetite.
Have to agree with Tgal here, i'm having that lead blanket fatigue feeling all the time. I used to be able to go all day and only have a bit of exhaustion and now I barely do anything and already need to lay down. I have trouble doing grocery shopping now and cleaning which bothers me because my house is so dirty right now. I keep telling my doctor but all my labs are coming back normal, it bothers me because my doctor is writing me off as being crazy . I'm trying to get disability because I can't work or go to school and i'm only 20. I don't eat healthy but compared to most people my age I do end up choosing foods that are on the more healthy side. I don't exerciser, I want to but how can I get up and do a 10-20 minute workout when I feel so tired. Hope this helps but this is whats going on with me.
have to agree with everyone here, I am to the point on asking my doctors for uppers LOL. This isn't fun anymore..
I have Lupus, Sjogren's, Raynaud's and APS - all of which (except the Raynaud's) can cause fatigue...Lupus and Sjogren's are very similar in that it seems like nobody knows why it makes you so tired, and the APS is a blood clotting situation that makes you tired because your blood doesn't circulate the way it should (in England they call it "Sludgeblood" which I think is a much better name!!!!). So far, I do not have serious organ involvement, though flares do seem to attack my brain which is hard to diagnose and track. But in general, I am on the mild-to-moderate end of things (and hoping it stays that way!!!!). I'd say the fatigue and brain fog is my worst symptom, though there are plenty of others. The fatigue borders on narcolepsy sometimes.
I have been on Plaquenil for about -oh, I dunno - maybe 4 months now...and it seems to be working a little bit.
I try to be VERY protective of my sleep - i make it a priority to sleep as well as I can (which is often not very well, unfortunately). If I am feeling really cruddy or feel a flare coming on, I try to work my schedule so I can stay in bed longer at night, and take a nap in the early afternoon if I can. It seems like sometimes the flare is not nearly as bad if I can get a good nap in for the first few days, and get extra rest.
But of course sometimes that is not possible, becsuase of work of family obligations or whatever. I work part-time, and to some extent I can set my own schedule, but my job is very strenuous (outdoors with large animals) and sometimes just a couple of hours is enough to wipe me out for the rest of the day. I LOVE MY JOB, though, and really don't want to give it up...and of course there's always that little thing of needing $$$$ to eat and stay warm, LOL....
So - if I have to push through, I drink coffee (bad for me) and am miserable - and I rest whenever I can. It's pretty bleak sometimes. But I have made some changes and prioritize things differently now. The house is not as clean, I am not as social, and we eat more prepared foods, and I used to volunteer for a lot for things, now I don't - all so I can get more rest. It just has to be that way.
I do eat pretty healthy...I have learned that certain foods and certain situations (lots of sun, monthly hormonal cycles, lots of flourescent lights, airline travel, etc) make me feel worse, so I avoid them whenever I can. I am still trying to figure out what things trigger disease activity so I can avoid them - but of course those triggers are different for everybody. But it's worth paying attention and trying to do that.
I have good times, and really lousy times. Sometimes the swings are a few days, sometimes longer. A couple of years ago, before being diagnosed, I had a flare that lasted almost a year and was horrendous - I could barely function and felt like a zombie, just stumbling through life and not really enjoying anything except when I could SLEEP. It was very, very difficult. I just kept pushing and pushing myself, drinking gallons of coffee, and trying to ignore it because my doc sort of brushed it all off. "Exercise more" he said - as if that were possible, and I didn't already get lots of activity at work! All the while what I really needed was more rest and TLC.
BUT - now I know what's going on in my body, and I take much better care of myself. I try to respect the fatigue - it's my body telling me that it is suffering and needs some help. My doc and I are still figuring out what, exactly, that means for me - everyone is different - but at least now it's not all being ignored.
Think of it this way - people who suddenly find themselves in a wheelchair, or blind, or deaf, etc have to adjust. It takes a while. Expectations shift - our expectations of ourselves, and also others' of us. It's not ideal....but it's certainly possible to find a good life, even if it's not always the ideal one we'd like. And it's okay to not know exactly how that's going to happen - sometimes we have to just experiment and be creative and see how things go. There are no guarantees. But then again, that's true for everyone, Lupus or not. We just have a particular set of issues.
I hope you can find a way to do what you want to and still take care of yourself...having some work you love - whether it's being a student, working full-time, part-time, or being in disability and finding a hobby that makes you feel productive - is really important. I feel like it's a great thing to do just to be on this forum, learning and (HOPEFULLY!!!!) helping somebody else, even if it's just by saying "Hi! I'm here! I hear you!".
Take care of yourself, do what you can, and take it as it comes. In some ways, I feel like all these health issues have been a bit of a gift to me...I was a "Type A" person, restless and felt like I had to be productive every second - but now I have had to learn to slow down, not get so worked up, and just adopt a bit more of a "surfer-dude" personality. I actually like it!!!! And I am not sure I would have learned that without all this. Not the IDEAL way to learn to slow down, but "It Is What It Is".
Best of luck to you.....I hope some of that helps.
Sleepy said it beautifully. I gave up the job that I loved - teaching high school Latin - when I realized that my health was affecting the quality of my teaching. It really wasn't fair to all of those energetic students to have a teacher who didn't have the energy to work with them.
The fatigue really gets to me. Yesterday, all I needed to do was to go to the pharmacy and the commissary (military for grocery store). It took me hours to find the energy to get ready to go, and I only made it as far as the commissary, which is closer to my home. I just didn't have the energy to drive to the pharmacy, so that is today's goal.
This is so frustrating for a person who used to be busy, active and organized.
I did physical therapy for six months. The exercise, especially the water therapy, felt good, but I really can't say that it increased my energy level. Exercise used to do that for me, but now I just have to go home and rest after.
I've been a proponent of healthy eating for over thirty years. I was a La Leche League Leader, and we taught mothers the concept of "Whole Foods for the Whole Family". I've always cooked from scratch and avoided prepared foods. I refuse to give up my coffee or my occasional alcoholic drink - I have to have some joys in life!
I'm probably much older than you are. You should be able to find your goals in life, and get to them. It just might take a bit longer, but I'm sure that you can do it.
Congrats on finally getting the disability! I know it is a long road
Originally Posted by scubagramplit
You made me chuckle with "this isn't fun anymore" ... I am with ya girl!
Originally Posted by lizbond36
Plaquenil helps but I had to resort to the use of caffeine pills yesterday, that helps as well. I can concentrate easier when I am studying, exercise. Trying to make some positive changes vs the negative one I just jumped into. If you need an upper, well why not! lol... we have good reason to be prescribed amphetamines.