I'm just starting out with this research. Apparently I've had Lupus for several years now, but only recently did I finally get to the doctor and got diagnosed.
I've too often been WAY TOO TIRED and felt guilty about it. I've been known to sleep like 14 hours at night and STILL need naps!
Various aches and pains and the "ill at ease" and awkward feelings have prevented me from going to family gatherings, shopping, etc.
I thank you that I came across this forum!
Hi Nancy and welcome to WHL!! We are glad that you found us. Take a look through the topics and feel free to post any questions that you have. We look forward to getting to know you.
We understand about the tired feeling and the guilt. The good news is that you are at a place where everyone understands so vent away!
Welcome, one of the things my Rheumy told me was to take a nap daily as well as try to get at least a full nights sleep. Well, I said Doc if that is what I need to do I won't have problem with that as I love to take a nap. I have a lot of fatigue as well. This disease causes you to fight for your very survival so you won't be able to do all you could do before. I have learned to do what I can, when I can and if I cant I don't. My family is good and they understand as much as possible that I have limitations and they work with me and around me(when I'm napping!) One thing for sure to have checked if you haven't is your thyroid. Underactive thyroid sure will zap your stregnth too. I was laying around like a zombie or something until I finally got enough medicine in me. I said all that so you'd see you are not alone... we are all suffering somehow from this disease. Welcome and I hope you find friends among us! Billie
Welcome to WHL! I know what you mean, I am drowsy as I type this. I hate sleeping my life away, but I have to get rest and if I don't I can't function. I understand how you feel about missing out on family get togethers and spending time with friends. That is probably one of the hardest aspects of Lupus for me. I struggle with it pretty much every single day. My childhood friend that I have been very close with doesn't ever call just to check on me anymore and holds it against me if I have to miss something because I'm having a flare up or side-effects from various medications. You see people's true colors and sometimes they aren't very pretty. I know it's easier said than done, but do not let it bother you or make you feel guilty when you miss something. You cannot live like that. If someone TRULY cares about you and loves you, they wont be mad at you if you have to cancel because you're sick. The one's who do get mad only have their own agendas in mind. (((hugs)))
The people here not only care, but they know from personal experience. Welcome!
Just wanted to add my welcome to those you've already received. Please do not feel guilty because you are dealing with one of the most misunderstood symptoms of this disease...Debilitating Fatigue!! We understand, all too well, how this particular symptom can disrupt our lives, can cause others to judge us unfairly, and can cause us to incorrectly pass judgment upon ourselves.
The debilitating fatigue is a symptom of the disease and should not be seen as a part of your character. No one would question an injury that bleeds..bleeding is a symptom of the injury and should not be judged. The same holds true for fatigue as a symptom of Lupus. Try not to be harsh on yourself or to let others be harsh on you because you are suffering from a very real symptom of your disease!!
We are here to help you in any way that we can....we truly understand!
Peace and Blessings
Welcome, we all sure understand fatigue. Right now I could sleep 24hrs a day.
But welcome, we're all here and truly understand.
Hugs and Good Thoughts
Welcome to the WHL and refering how you feel, you have friends here in the same boat, so not to worry as we all understand what your going through.