Hi all, I'm doing a project on lupus, so please help me understand!
- What are some of the ways you cope psychologically when you experience a flare-up?
- What’s the best thing(s) someone can do to help you manage your lupus?
The best way I cope is through trying to stay as positive as I can. Although Lupus is a very mysterious and frustrating disease, you should try to stay positive and try to live life to the fullest. It can get very lonely but you need to learn to communicate with family and friends even though they may have no idea how to respond or how to help. Communication is key and your family and friends also have to do their part and realize you aren't faking and that this is real and there are many many symptoms that come along with this crazy disease!!
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I have to shift my thinking from “people are depending on me, i have deadlines, I can still do that” to “even though others cannot see how lousy I feel I need to crawl into bed until this passes no use in trying to keep moving forward it just makes ne more frustrated and stressed”
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- Do not accuse me of faking it or conviently having an episode to avoid something
- Ask if there is anything that “has” to be done today that they can do
- quit adding more things to do to my list just wait until the episode has passed or better yet you do it or get someone else to do
- treat me like I am sick not lazy. Check on me, bring me food (I get so weak and fatigued I cannot lift my legs), take my temperature (I always run low grade fever during episode), massage my achy muscles, sit with me…
I say what I feel and true to my words. Having lupus is hard and can be very painful and can make u feel like u r being beating up for something u did wrong in life. I have been with lupus and other probkems for over 7 yrs and once a single mom of 3 and hard worker to the point now I have to depend on others and it stresses me mire. Once so independent to feeling useless. This is a very hard thing to live with and I pray that ppl have yhe family to back them because if u dont it is a lonely road. You try to do your best and find positive things around you its hard but u need to. Hugs
I try to stay as positive as possible but i try to keep pushing myself which tends,to make life worse for me. People who don’t know you or understand lupus or your disease process tend to be hesitant bout your feelings & your flare. I stay in the hospital so much I’ve began to name each stay as a vacation location & my support team gets involved & we try to make the most of it. This disease is a whirl wind of trails, stresses & pains that are truly unexplainable. People can help in little ways like a meal, a movie, company, a hug & please no sad faces. My son & I have decided to call my bad moments techincial difficulties. My husband is a great man but he’s given his life to thus disease having little social life because of my health & I’ve told him that i can forgive him if he ever decided to leave because i know its hard with having so many uncertain moments. He stays dedicated to his family & I’m truly blessed to have him as my soul mate. God has provided me with an amazing support system & that makes the fight just a little easier to fight.
- It’s tough at times, psychologically…and probably weighs heavily on just how badly you feel. I suppose you could equate it (very simply) but on a much grander scale…sniffle or flu? Little headache or massive migrain. Of course with much greater extremes. As far as coping…like with anything…“tough it out” the best you can. Even sitting here right now, on a good day, it’s hard to even place myself back in a bad flare…as it’s not pretty. I’m not even sure when it’s that bad if you have the where with all to call it coping. It’s existing in a horrible state. Too much to even think. Then there are flares where you have some pain and it’s like trying to walk on a broken leg…or having the flu. For me, I suppose I do more of my thinking and even “coping” when I’m NOT flaring. I am thanking God every day for feeling good…even if I feel not so up to par…it’s better than where it could be. I have been feeling really good for 3 months now…better than I have in a good couple of years…and I am loving every moment I can be active right now.
- As far as someone being helpful to me…just be supportive…ask me if I need something…a drink, some food, help walking, an ice pack, a heating pack. Don’t forget about me. And this applies to anyone who is sick. I know you will get tired too. Sometimes when I feel at my worst, I may just be wadded in a ball in bed…just check on me. Sometimes it’s even too much to talk. Just be nice to me. I am hoping this will pass as much as anyone. I have a friend who never fails to ask me every time she sees me, “how are you feeling today.” I appreciate that. I will be honest. My husband is totally supportive and also asks me how I’m feeling, or “are you feeling ok?” Even on a day I’m doing great and feeling well. He will do anything for me. We’ve been married 35 years…this is all new to me/us…he will sit on the couch and rub my legs and feet for hours every night!
Sometimes how we cope is dependent partially on how we are treated as well. So a friend, spouse, family member, etc., can play an important role.
I have learned to relax breathe deeply, I tell myself I have been through this before I will get through it again. Share my time with uplifting people, (even when not in a bad flare I do this now). I do not have a lot of energy either way so my time is precious. I find the smallest events upset me so I slow way down. I don't know if I live in a flare or not to be honest. (meaning all the time)
To manage my lupus is to just be there with me. I get lonely and bored. I appreciate when the ones I love understand I don't have a lot of energy. If we go to the beach it is now known we will be gone for a short time and it feels soooo wonderful to put my feet in the sand. I just did this last weekend ohhhh it felt so good. This has not been an easy road to learn my limitations for my family as well. I will say in the last year I am proud of what we have accomplished mostly letting go of expectations of my energy and ability to fulfill another persons agenda. The other thing that is important is I am normal, I have an autoimmune disease that effects me, but I am still me. For others to understand this and of course information, information, information sooo important.
Great questions !! Thank you
Have a wonderful day!
Hi Collegekid09:
First, I'd like to say good luck on your project.
Personally I cope by always being positive, because that's the only way to get through all the flare's we experience. Being negative or whining only makes things worse. Of course when we are 'sick and tired of being sick and tired', and it gets old fast, we want peace and quite and to feel well. Talking with a friend that either has Lupus or understands what you are going through, and that understands 'you', is very helpful also. Trying to even listen to some music, read a book, meditate, do an art project, play with your children or pets, can take your mind off yourself, and even alleviate some of the pain.
If you are lucky enough to have a family that stands 100% behind you helps. For me personally, I have a wonderful husband that has stood by me for the 25 + years that I've had Lupus. He understands what I am going through. He's not demanding of what he needs. The poor guy has had to learn to fend for himself, for mostly his meals, when I'm too 'non-functional' to even focus on cooking. He will settle for a PB&J, and even fix me one.... I 'still' find myself pushing to try to keep up with the laundry, cleaning, etc., but it's hard.
I hope this might help you, again Good Luck.
I make myself focus on anything positive. I praise myself for what I AM able to do during a flare even if it’s that I can only brush my teeth. I also read the Bible and listen to Contemporary Christian music as it really makes me better.
My family and friends are all told when I am flaring so they are prepared. The most unfortunate part is the friends just seem to disappear during long flares which can make life really lonely. I am blessed in having a very helpful and supportive family. Without them this would be extremely difficult to manage. They need to have a disease companion program for individuals who don’t have any family or friends so the Lupus sufferer could get some help as this disease can be a beast at times making any kind if functioning impossible!
To manage the Lupus the best things someone else can do is to not expect too much even when I am not flaring. Let us do what we can when we can. If I am able I WILL do it. People expect you to come out of a flare and just jump right back into the rat race of life and sometimes we have to crawl, then walk, then run back in. It’s not an instant change from flare to non-flare. It’s gradual and may take some time. Please respect that. Those suggestions would be helpful.
Hi College Kid and College Professor. I've had lupus since I was around 8 years old and I am now 69 ( in May). If there is a gamut of illnesses, surgeries, and difficulties connected to Lupus...I have probably hit ALL of them since that age to now. I am extremely photo sensitive too...so much so that I get all my car windows tinted with ultra-violet repelling chemicals...and they really work well. I had a terrible time during and with pregnancies...one miscarriage...one breech birth...and sickness and losses of body parts thru each pregnancy...from teeth and gums...to organs..tonsils, gall bladder, appendix etc. I never had a pregnancy that went WELL. I have three living children. I get infections very easily...more often than most...and I can get an infection from a pinch that does not even break the skin...so the infection is inside me waiting for an opportunity. I have had remisssions that lasted years...and then I have bounced from flare to flare to flare for years also. I have SLE mostly...but I am leaning in to the nephritis issues as I age...and have kidney disease now. I am fortunate that so far it has been a mild disease...and responding well to treatment. More recently I have begun to have pleural issues...and that IS a bit nerve wracking to be sure. One of the main things I have done most of the time...that I think has helped me tremendously...is to not consider that every medical issue or illness or surgery or other weird symptom that I get comes from having LUPUS. Yes...I have Lupus...and yes it complicates matters...but lots of other people without Lupus get many if not ALL of the same things I have had. No one may have had each and EVERY one...like I have...but many have several. When other kids got sun tan...or sun burn...I got sun poison and had to lay in a bed naked with a box over me to keep the sheets from touching my skin...and get stuff sprayed on me. My sisters got to keep going to the beach on vacation and...I got the bed and the box and the spray! In my family...we all just tended to think..boy does SHE always have the bad luck! LOL I was 8 years old in 1953...and I don't think they even KNEW kids could have Lupus back then. I was diagnosed as having a rheumatic bone condition...and little else. The treatment back them was like a dozen calcium pills a day...and draining fluid off the swollen knees when it was TOO bad. ( That was an ouch and I was not a happy camper those days.) I was not literally diagnosed with Lupus until I was in my late 30's. I continue to think of myself as a person who has "things" happen to me...but I do not automatically connect them with Lupus. I believe that dwelling on what Lupus can and often does do...sets you up for more anxiety, unhappiness, and self pity. I would much rather keep an eye on the Lupus...which is much easier in this day and age....deal appropriately with whatever comes along...and take precautions like we all know we should regarding sun exposure, or over exhausting ourselves. I continue to live the life I want to live and do the things I want to do...whether limping and wincing to do it...or not..and not give in to the limits having Lupus often makes us inclined to do. I simply see myself as a person who has Lupus...but Lupus does NOT have me...and I get lots of weird illnesses and surgeries...and then get by them. I have had carotid surgery, a tumour removed from my ear, tonsillectomy, gall bladder removed, knee surgery...but all in all...I am still doing the things I want to do...and will continue to do so. Lupus is a condition I live around...nothing else. PS. for college kid...when I need to...I vent...somethimes I go outside and kick a bucket around and yell some cuss words...lol...other times I cry for a bit and then laugh at myself for being a big baby...other times I distract myself by doing something totally off the wall...like adopting a cat...or a dog...or even a horse. There is so much more to life and love than Lupus would dictate...so why let IT dictate? . Having Lupus is just one more facet of me...like having freckles...or having blonde hair...it does NOT define me. I think it would be much worse to "have stupid" or "have no morals". It's all about perspective in my world...and that works for me. Wishing all Lupies a way to co exist nicely with this nasty condition. :-)
Sometimes coping with flare ups are hard as hell. Sometimes I have flare ups that put me in the bed for several days. I decided a long time ago that I would no longer fight the flare ups, it wasn't doing me any good just makng things worse. So I just go with the flow and know my limits. And if I have to lay in the bed a few days, then I try to take advantage of it.
Thank u karenk because I was just diagnosed with this thing called Lupus apparently I’ve always had it but just chocked all the pain up to paying for all the heck I put my body through when I was young and when I was young the pains were called growing pains.
Any how, I decided that Lupus was not going to run my life and I won’t stop doing the things I love to do. I too have had lots of surgeries and this is just another bump in the road. So, I am great full for someone as yourself that shares the same outlook on life.
Once again, thank you
jKelly
I've learned to warn my kids, that I'm having a bad week, so on the weekend I need some rest and can't be running around doing alot for them.
The best thing to help me - not judge. Not be compared to a 'friend' who has lupus and works three jobs and runs their own business and lupus has never interfered. Goody for them.