I was just curious if you ever feel like a normal person again? My doctors keep telling me you can live a normal life with this. I know I have only been on treatment for 5 months and that it takes time, but its starting to get a little hard. I hung out with friends Friday night and it was the most fun I have had since being diagnosed, but all I have been able to do is sleep and lay around for the past three days.They were really good and said they could take me home, I probably should have but I was having so much fun! I am still unable to walk long distances with out a wheel chair, and I am still unable to drive or go to work. Im starting to go nuts being in the house. So just wondering if anyone has been able to feel "normal" again and do the things they used to before being diagnosed and how long it took?
Not sure why you need a wheelchair You can live a 'normal' life but you will have to redefine what is normal. I can't do the vigorous physical things but I can still go out and about and was able to work by finding a sedentary job
It has affected my right side leaving me with stroke like symptoms making it very difficult to walk. As well as affecting my lungs, ill walk 2 ft and have crushing chest pain and searching for air. And if I get to tired it makes everything worse so if I have to walk long distances I have to have the wheel chair.
I’ve gone through flares where I can barely walk as well, so I understand completely. I can’t say that I ever feel normal, sadly, but there really are some good days I promise! As a point of reference, i teach kindergarten and my kids know that when I’m teaching from a chair I need extra helpers. They love it!
Thank you so much for this post! I am currently going to college for early childhood and elementary education. Its good to hear of someone else with lupus that is teaching as well. My goal is to work with children that have disabilities, looking forward to what lies ahead. :) Kids are fabulous! I could be having a bad day and I would go nanny and my days would totally changed around.
mbaer2007 said:
I've gone through flares where I can barely walk as well, so I understand completely. I can't say that I ever feel normal, sadly, but there really are some good days I promise! As a point of reference, i teach kindergarten and my kids know that when I'm teaching from a chair I need extra helpers. They love it!
I have severe mobility problems as well. I can relate to your concerns, as I have the same ones. I have 2 kids and they love to go to Wal-Mart. I physically can't go there. I will suffer for weeks afterwards. I have been trying for 6 months to get my doctor to sign off for me to apply for a Handicap tag for parking. I don't need it all the time, but I simply can not walk any distance.
I have flares like Ann A. speaks of having. It is scary for me when my heart becomes inflamed. I was just in the dr. for chest pain. My pulse and blood pressure was sky high! They tested me immediately for heart attack. Turns out, it was so much inflammation around heart and lungs. The heart was working overtime!
I know we have to accept the normal with Lupus, but it is a hard thing to do. At least, for me it is. I hope you find peace and relief from your symptoms.
I have accepted a new normal for my life. I have made changes in my diet, no processed foods and lots of healthy veggies, no white flour or sugar. I drink plenty of water, and I'm able to walk 3 miles on the treadmill now, and I'm ready to go back to full time work. I am looking for office work instead of the work I was doing in the warehouse now. I stay out of the sun, and use my sunblock, and on days like today the heat index is supposed to be close to 100, I'm going to the gym early so I won't be out in the heat later today. My lupus is getting better, and I'm also having dramatic improvements with my Fibromyalgia as well. I won't be able to the normal things I did before, but I'm happy with what I can do now...
I have asked the same question? I get frustrated with Lupus.org for their bios of people that run marathons, play soccer, act, etc. I've been on meds for over a year, tweaking meds to get the best for me. I am better than I was when I was diagnosed. Pre-diagnosis, I couldn't take a shower without having to rest afterwards. I spent most of those days in bed or on the couch. Now I have about 5 good hours a day that I can be more active. I think I would probably have to use a wheelchair if I was doing something that required me to walk a long distance. Just going to the grocery store for our weekly groceries is exhausting and I usually like to have hubby with me. I used to be so active! I used to rake 300 bags or leaves every fall from our yard and I had just finished painting the entire interior of my mother-in-laws house when my blood pressure sky rocketed and more symptoms became obvious. Finally diagnosed with lupus, but I have been having "flares" for a few years, but doctors said it was depression, or early peri-menopause, etc.
I hope you continue to get better. I'm waiting on results from a new rheumy next week to see if there is anything else I can do. I'm actually terrified he is going to say I don't have anything wrong and send me home. : (
I am newly diagnosed with lupus as of July of this year. However I am sure I have had it longer. I was diagnosed with Fibromyalgia in 2007 more than likely I had lupus then. I was a massage therapist and had to quit work do to the pain and exhaustion. I have continually been adapting to the changes in my life. I really believe if we are able to accept what we can do and let the rest go life is more enjoyable. Looking back over my life there was so much I wanted to do and did not understand why I was unable. for me I had severe panic attacks, and phobias, it was hell every day. I too raised my children and worked as well as took care of our home. I did not have lupus symptoms at that time. Today I am more at peace than I have been in my life. I take it one day at a time. I am grateful for each day.
You have certainly received many good responses. All I can do is reiterate on comments---you redefine "normal" and go through peaks and valleys. The peak may be something as simple as having a few good hours a day. I lost my left inner ear function after a seizure in 2004; I had to learn to walk again. The otolaryngologist (sp?) at the medical school/hospital said we will teach you how to walk again and they did in about four weeks. Driving was easier than walking because you have the steering wheel to hang on to. Grocery shopping is OK as I have a basket to hang on to. But no more riding horses since the seizure! I know what you mean about the photos of such active people----Lupus Today magazine always has healthy smiling people on the cover. Sometimes when you read the story it's about a teenager who has had two knee replacements--but she is on that cover smiling like she just won the lottery! Ha! But Lupus Today is a very good publication. Hang in there! You will have some good days that will hopefully offset much of the bad. XXOO Lupancatwoman
I have many great days and then all of a sudden I can’t sleep because of osteoarthritis pain. Once I get in a cycle of not being able to sleep the lupus gets ugly. My kidneys stop working, my legs swell until my skin breaks down and the pain from this makes the sleep problem worse. At this point I have to take something to make myself sleep. Just a couple of 8 hour nights of sleep and my kidneys begin working normally and everything heals, except for the staph infection I have had for 4 years. They can keep it under control but they can’t kill it. I need to work harder at sleep. My new Rheumy says many lupus patients could do much better if they slept well. Best of luck. I hope you feel normal soon. I am on say 5 with little sleep and I a feel normal but with the swelling people can look and see that I am not. Valium will get me back on track tonight.
I still eat, breathe, have the same family, etc. The Social Security judge wrote about me that "there is no job in the United States of America that she is able to do". Normal can mean many things to many people.
I really needed to hear what you had to say today. I am in a wheelchair 80% of the time now. I can stand up for no longer than 2-3 minutes at a time. During flares I am bedridden. I have been sick so long, but only became disabled Jan. 2012 due to blood clots, chest pains, CNS issues, migraines, chronic flares from Lupus-SLE, Fibromyalgia and some yet to be identifed other disorder. I am so happy to hear that you are no longer using a wheelchair and are doing so well. I was undiagnosed since age 23. Every year I became sicker and sicker until it almost killed me Dec. 2007. My doctor kept insisting my weight was the problem. It didn't help, but it wasn't the cause of my chronic illnesses. I raised 2 sons, worked and went to school full time, earned my Masters and taught for 12 years before it took me down. I have been struggling excepting this is how the rest of my life will be. Now 49, Disabled with a level 8/10 pain level except for 2-4 days a month. I don't need normal, I need to be able to care for myself and walk again. Maybe even better, dance.
Ann A. said:
I do not think my normal way of feeling has ever been physically strong, vigorous, and healthy. But I went to school, worked a job, and raised two children... My life may not be normal but parts if it are excellent. I think that I learned fairly early in life to focus on what I could do.
In my late 30s early 40s I spent time in wheel chairs. I had flares that involved chest pain from pleuritits, costochondritis, and pericarditis. As I approach 67 I do not use a wheel chair and I seldom have chest pains. Time passes. Things change.
Yes you can live a normal life, I was diagnosed back in 2002 and have had a very normal life, my doctor put me on plaquenil when they finally discovered I had lupus after my hair started falling out and they finally did a biopsy on my scalp, for the most part I have the stiffness, and body aches, and if I over exert myself I do have to relax for the next day because I feel drained, and if I go to the mall and walk around from one store to the next my body does let me know its time to call it quits for the day and I don't make a habit of walking around at parks or anything like that for a long period of time, but other than that everything seems to be going ok. I did have a detached retna back in April 2012 and I am not sure if that was caused by lupus or not, and my doctor has not been able to tell me why it happened either, I will admit that we lupus patients do have to make some adjustments, but yes we can still live a long normal life, we just have to deal with a few more issues than people that do not have a illnesses, and just because we do have a illness does not mean that are life is going to end sooner than a person that does not have a illness. I do believe that God would not put no more on us than he know that we can handle, and when and if it gets to be more than we can handle he is always there to strengthen us. God bless you Louters it does get better when I first found out I was a wreck, now I am well adjusted and I know God is in control and that I am not going anywhere until God says it is my time, he has not brought me this far to leave me, keep the faith and know that God is able to do all things but fail, lupus is no match for God and we will be here until God says it is over.
Thank you all so much for everything you have said! Its so nice to hear from others that are experiencing the same things as you. Everyone is still not fully understanding what is going on and what Lupus really is. So people are like you will get better life will change, and I know it can but I know I will have to make life changes to avoid a major flare again. So yes I will live a life but it wont be the same one I used to live. Stress from school, work and family triggered the Lupus to rear its ugly head. Put me in the hospital for about 5 weeks. My doctor thinks I have had it for awhile since I had symptoms like hair loss for about a year. But with so much stress and being sick with mono in December it triggered the lupus to show up. Its been a rough week as I had to choose to put my health before school and take this semester off of college. It was a really hard choose as it was like another thing I cant do at the time. But my Adviser is really good and put it into perspective and asked me to be honest and how much could you do if you went back this week. It hit me really hard, and just made me realize I really can't do it at this time. So I am taking this semester to gather myself and hopefully a grip on my health. None of my meds seem to be working including the Prednizon, so I see my docs next week hoping that they will figure out what to do.... Thanks again for all the positive feed back! :)
I'm so sorry for what you are going through. I know stress is what caused my symptoms to go horribly wrong. At the time, my daughter was trying to manage her health while starting art college 9 hours from home. She has Ehers-Danlos which is a connective tissue disorder. Her joints pop in and out and she wore the large knee braces just to be able to function. Too much and she would not be able to walk. Her wrists were just as severe. She tried for over a year, but it was so horrible for her, which, of course, was double-fold for me. There were so many times she would call me crying or text me that she couldn't make it to class and she was getting behind. She took too many clonazepam, apparently not enough to have her stomach pumped, but enough that she could not remember how many she had taken and had to be taken to ER. I didn't know about this until a week later! She also ended up having to have a cast put on her wrist and a stiff (non-bending) knee brace after a serious sprain. We went up there to try to help several times. I flew up there at one point to help. We ended up packing up her place and moving her back home. Exhaustion, anxiety, and stress did horrible things
physically to both of us. Yet, I needed to be the mom and try to help her through what she was going through while taking care of myself. My rheumy and psychiatrist insisted I had to avoid stress. What a joke! How can I avoid that? I understand what you were saying about stress. And it sounds like you are going through similar stress like my daughter. It was a very tough decision for all of us to make to bring her back. She is allergic to NSAIDs and now we have to worry about her depression. She had to have knee surgery and the difficulty of rehab after that was difficult.
I don't have any answers, but I can understand. We can go through this together. : )
I am so sorry to hear about your daughter! I'll be praying for you and your daughter as you both go through this together. I know I could not go through all of this with out my mom. She has been there from the start, she has told me she will do this till she cant do it anymore those words meant so much to me! :) She works full time and even gets xtra hours to pay for everything we need. I dont know how she does it somedays....
That's about the best answer I have seen, JJ. Were any of us "normal" before our dx :)
jujubeee said:
Lupus is different for everyone! Some like you and Ann Lupus has attacked or attacks the lining surrounding the heart and lungs and that creates mobile problems. Other's it doesn't. One of the only things that is FOR SURE about lupus is that NOTHING is for sure! Your condition can change anytime, anyday, any hour and change in degree of your symptoms as well. Because lupus is systemic-it can cause a multitude of symptoms. Some are more severe than others.
The BEST thing you can do is enjoy what days you can and manage your symptoms as much as possible. HUGS, JJ