I was recently diagnosed with SLE and I’ve been having problems with my concentration and remembering things. I have to constantly write everything down and it takes me twice as long to understand certain things. I’m a junior in high school and I take honors. I’m worried this will start affecting my grades. I already have to study twice as hard and long now. Any advice on how to deal with the confusion and forgetfulness?
Don’t hate me, but the choice is to either continue working this hard or start taking easier courses to make life a little easier. You have to really decide for yourself how much you want to keep at your “normal” life. Most of us gave up the things that caused stress or that simply proved to hard. You are young. Think about your goals and realize that they will not be as easy for you as they would have been. Don’t focus on that fact, but on how you can overcome and even use lupus to your advantage. Such as lupus scholarships. Sit down and talk with your family about what your new reality really looks like. I am 32. I now work retail because I can not do what my brain use to do. I have an extremely high IQ, and have always been the high achiever. Being struck down to lupus brain and physical impairment is very hard. But it is my new reality. I had to accept my limitations, yet know where I am not limited. I have options, and so do you!
Thank you much, Mindy! That really helped me out a lot.
HI Tiffany, I am so sorry that you have been diagnosed so young with this disease. Confusion is a common thing with lupus. We have to write little notes to help us remember. Also, remember to stay on top of your meds that your doctor ordered. It is so important to have a good balance of rest, healthy eating, exercise(when you can), and your meds. Also, keep hydrated. Lots of water. All of these things help with your memory and confusion. Sometimes you just will have lupus fog. You just have to go with it and know that it will pass. God bless and hugs to you!!
Shannon
This is such a hard lesson to learn (was for me- I'm a little stubborn :-) I tend to be an overachiever, you sound like you may be too. I work full-time, have two kids, and (was) taking classes to work on a second degree. All the stress put my body into a major flare. I just couldn't do it time and energy-wise. Something had to give and it needs to be a conscious choice. I chose to focus on my kids and job and save school for later. The difference between people with Lupus and other people is that if we over-exert ourselves we aren't just "tired". We pay a serious physical price, often making us sick and out-of-commission.
So, I think you have to decide what you want and prioritize. Also, listen to your body. If you think you can continue to do what you are doing and stay well and be happy, then do it. But if you need to switch from honors classes to regular classes in order to stay healthy, I would advise you to do it. I put achievement over health for a while and payed the price. You are young so you can probably get away with it for a while (and it may be worth it to push yourself temporarily). But, I am just saying that it does affect your health and learning to know your body and it's limits is very important with Lupus.
I know this is kind of off-topic because you were asking about help with Lupus Fog but I had to say this because it just reminded me of some of my personal struggles. Getting lots of rest is important and eating healthy food. It helps with the forgetfulness. Also, limiting stress as much as possible. Learning relaxation techniques can help a lot as well. Good luck to you!!! Sounds like you are on the right track and are doing great! :-)
Thank you Alex and Shannon. My problem is that I’m an overachiever and not being successful and getting where I want in life is my biggest fear. Hopefully I can keep pushing for now until I graduate and then slow things down a bit.
I definitely take my meds faithfully and eat right. Can’t excerise right now because I still have a lot of fluid on me from when I went into kidney failure. Keeping my stress and anxiety level down sometimes becomes a hard task but I work very hard at it.
Hopefully as time passes my Cytoxan infusions and daily meds will really take effect and things will get a little easier. I’ve only had lupus for a little over two months.
Tiffany -
I am so sorry you have to deal with this so young! I am a college professor & will gladly work with you on study tips for the foggy mind if you would like! My 14yo daughter doesn't seem to want help studying so if I can help another high schooler I am all in :) Hang in there - you can do this. Like others have said it will take learning balance & listening to your body, but that doesn't mean you can't achieve your dreams. If I can help - let me know!
Melissa
Hi Tiffany,
I was 18 when I was diagnosed with Lupus so I understand how you are feeling with being so young and overwhelmed with such an unpredictable disease. Take it from me, do not give up on school or yours dreams! But also do not force yourself to do too much. Listen to your body and do as you can. I was a Freshman in college when I was diagnosed with Lupus Nephritis and I was on a very high dose of steroids along with Cytoxan (chemotherapy). I did finish out the school year because I had about 3 weeks left, but then I took some time off. Long story short I was in and out of school for about 10 years, I finally graduated for good this past May. You will definitely have some bumpy roads with this disease but do not let it stop you. Get right back up and keep reaching for the stars. You have Lupus, but it doesn't have you! I wish I had someone to encourage me when I was so young and knew nothing about what was happening to my body...
I am 29 now and I am very forgetful and my concentration is not like it used to be, but I don't let it stop me. I write alot of notes, especially in my cellphone (haha!) You will learn little ways of helping yourself cope through your daily life. Feel free to contact me if you'd like to talk more. :)
Thanks everyone. You have no idea how much this is helping me; I will be contacting y’all soon!
ONE THING ANYONE WHO READS THIS-------YOUR BODY WILL SAY ONE THING YOUR BLOOD TEST WILL SAY ANOTHER. LIKE YOU HAVE A VAGINIL DISEASE FALSE POSITIVE!! THIS ADDED TO MY LIST ON THE DIVORCE.
IT IS A WOLF IN SHEEPS CLOTHES. IT IS CALLED THE WOLF IN EARLIER YEARS. DISEASE OF THE WOLF.
I WILL ALWAYS BE AVAILABLE FOR ANYONE WITH LUPUS. (909) ■■■■■■■■
IT IS SNEAKY AND MAKES YOU SUFFER. IF YOU PUT YOUR MIND TO IT, TRY TO BEAT IT!!
PEOPLE WITH LUPUS ARE OVER ACHIEVERS!!!!!!!!!!!!!!!TYPE A PERSONALITY!!!
LOVE AND BLESSINGS TO ALL OF US
HELLO
WHERE IS THE LUPUS CHAT ROOM.??? PLEASE SEND THE LINK TO ■■■■■■■■■■■■■■■■■■■■
DEAR CONFUSION, WE WERE JUST IN THE MAIN ROOM ON A CHAT. KEEP IN CONTACT WITH SURVIVOR OR THE LAS VEGAS WOMAN. THEY BOTH KNOW MY PHONE NUMBER AND INFORMATION.
I DO NOT KNOW WHY THAT LINE, DID NOT GO AWAY ABOVE. SO SORRY.
MY PHONE NUMBER IS: (909) ■■■■■■■■
ALWAYS MICKEY AKA MICHELE AND SERVICE DOG RUSH
I am 41, and my memory has been affected the last 2 years. ( I was diagnosed about the same time) What is difficult for me to understand is how my long term memory is fine, yet it takes me forever now to remember new things, skills, etc. and sometimes it's so hard to concentrate on new tasks that I just simply give up and walk away. I wonder if Alzheimer's meds would be useful for this problem...any one have a thought?
Hi!,somewhere along the line we all my have gone through this stage of forgetting things and where we are,which it come and go. But it be okay!!! Call your doctor and make an appointment , let him know that this going on with you…Beverly L.
Tiffany,
I know that we have spoken on other topics, but I would really love to be able to talk to you in the PM category. If we haven't friended yet, let's do that.
Hugs,
DeAnne
I’m having the same problem. I go to rhuemy next month so, I’ll address it with him then… Keep a journal to share with your drs.
TRISAH SWEETIE, WE ALL GET THOSE TIMES WHERE WE LOSE THINGS ALL THE TIME FOR ME AND WE CAN NOT CONCENTRATE AT ALL. LACK OF SLEEP AND PAIN I THINK DOES IT.
LOVE MICKEY AND RUSH
PRAY FOR BETTER DAYS FOR YOU , ALL OF YOU