I remember when I was first diagnosed with lupus. I thought that all I had to do was take my meds and my life would return to normal.
Lupus and Everyday Life
I remember when I was first diagnosed with lupus and rheumatoid arthritis. After the initial shock, I thought that all I had to do was take my meds and my life would return to normal. If you have lupus, you know that being "normal" isn't something that can ever happen again. However, there are things you can do to make things easier on yourself or someone that does have the disease.
The following information is based on how my family and I have learned to accommodate my illness, and how you too can find some peace of mind and comfort when dealing with it everyday, as well.
Where Lupus Hurts
Being diagnosed with lupus usually means that you'll begin taking medications, in some cases, a lot of them. If you've never been a "good" patient before, now is the time to learn to be one. Taking a bunch of pills or even shots every day can be really depressing, but it is something that lupus patients must do in order to be more comfortable each day.
Personally, I was a good patient for about two years, then I got tired of taking my medications. I began skipping doses, stopped taking some medications on and off and generally disregarded the schedule which was carefully planned by my rheumatologist. All I can say about this dark time was it was a bad idea. And here's why.
Lupus is an auto-immune disease that affects not only joints in the body, but it also makes patients susceptible to many other diseases, such as heart disease, diabetes, high blood pressure and kidney disease. Surprisingly enough, some of the medications that lupus patients take can actually help stave off a few of these other diseases or at least limit the damage that can occur.
There are side effects when you don't take your medications, many of which are very undesirable. For example, when you quit taking anti-depressants (commonly prescribed for patients dealing with chronic pain), is dangerous because it can send someone into spiraling depression—quickly. In addition, pain can set in quickly when you skip pain medications, even in as little as 8 hours. If you are taking prednisone, and quit taking it abruptly, you'll find that your pain has returned, often twice as bad as it was before you began taking this medication.
As anyone with lupus knows, taking your medications won't ever cure your disease. There is no known cure for it. However, it can make living with the disease easier on your body. Not taking your medications has the potential to create other problems that are just as bad as the disease itself. Do yourself a favor—take them. Take them regularly as scheduled and try to think of it as part of your everyday life—one that will only take minutes each day. Get over this mental hurdle and you can begin to get on with your life, even though it includes lupus.
Getting active is probably one of the most difficult things to do if you have lupus. There is often an overwhelming feeling of being tired, even after sleeping 8-10 hours each night. You may find yourself yawning constantly and the thought of doing any physical activity is laughable. People with this disease aren't usually chomping at the bit to start exercising, but exercise is good for two reasons: it will help you maintain muscle and bone strength and it can help keep your weight where it should be.
Patients with lupus often become lazy, not because they want to be, but because their disease makes them so tired. In addition, if they have other diseases, such as rheumatoid arthritis, they may be too sore to do any "real" exercise. At this point, it is so easy to simply give up and do nothing but sit on the couch. Don't give up though, there are many things that can be done to exercise in your own home and keep you moving.
The following are just a few of the things that can help you get your exercise several times each week:
- Walk, but don't overdo it. Walking for 20 minutes 3-4 times a week will do wonders for you.
- Wii - try it! There are many exercises you can do with the Wii system, from yoga to bowling. If you get tired, you can easily rest in the comfort of your own home.
- Fit TV - if you get cable, you can subscribe to this channel in most areas. They offer a variety of fitness activities each day and you can do them in your living room. Some activities require special equipment (like stretching bands or hand weights) but usually the items can be purchased inexpensively at your local Wal-Mart.
**Remember, talk with your doctor before beginning any exercise routine!
Learn to Say "No"
One of the most frustrating thing about lupus is that it is unpredictable. The disease flares can occur any time, without warning. There is no schedule to these flares, or the sudden onset of pain. This can throw plans out of whack, making your friends, family and co-workers think that you're not dependable.
Since this effect of the disease will continue to happen, you must learn to say "no" when people want you to sign up for activities, join groups or make plans in advance. This can be very disheartening and depressing for people who are normally active. If you continue to say "yes" to everyone, you'll only end up disappointing many of these people.
What you can do is begin to educate people that you regularly interact with about your disease. Some people will immediately understand, while others will never be able to wrap their head around the basic concept of the disease. You may alienate people in the process, but it is better to surround yourself with people who love and support you. Let people know that you have your good days and your bad days. There will be times that you just have to rest, or you won't have the energy to drive yourself somewhere. Your real friends will understand this change in your behavior and support you, perhaps even volunteering to help out. The people that don't understand will simply have to be left on the wayside.
What Each Day Brings
Don't put your life on hold because of this disease. Each day that you sit at home alone is a day missed out on in life. If you have children, explain as much to them about the disease as possible, given their ages. Tell your significant other about your problems and frustration- they'll want to help too. If you can't continue your job, find one that can accommodate you, such as working from home. Find a support group in your area or start one so that you can talk with people who really understand what you are going through.
While your disease won't get better until a cure is found, you don't have to throw in the towel. It may even present some new opportunities, such as a chance at a career change, to do something you really love. For me, it meant a chance at doing something I really enjoy—working at home—writing and taking photos for a living. While it may take a little time, you can find something that you enjoy, as well.
Lupus and Disability Resources
- Lupus Foundation of America
- Welcome to Disability
Disability information and insight from an expert who also is disabled. What you need to know about disabilities, relationships, raising children with disabilities, tips for caregivers, resources, support and inspiration.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
jhunpaler from Philippines on February 15, 2012:
an informative hub on lupus, aside from consultations and medications, a positive attitude towards the disease is a big plus :)
Pamela Oglesby from Sunny Florida on January 21, 2012:
I also have lupus and have written a couple of articles about my experience. I love your survival guide as attitude makes such a huge difference in your day to day heath. I am not on Benestyl and so far it seems to be helping and I am excited about being on the only medication that actually treats the disease and not just the symptoms.
Dear Josie from Alabama on December 31, 2011:
I have Lupus;please read my Hub; it's crazy!
living earth from UK on November 16, 2011:
This is an excellent Lupus SLE survival guide and I have featured it on one of my hubs. Thank you!
Charlotte Gerber (author) from upstate New York on November 11, 2011:
Hi Stacey, Sorry for the belated reply. I understand how you probably feel - I'm not a very good patient and sometimes throw in the towel with my meds. Sometimes it seems like they just aren't doing anything for me, but then I have a flare and realize that I need to take them. There are so many bad side effects of this disease, that even if you're not good about taking your meds, you should at least see a rheumatologist or doctor. This disease can affect your kidneys and eyes and heart- all of which can be avoided or controlled with meds.
Hang in there- you're not alone!
Stacey on October 27, 2011:
i have lupus i was 21 when i found out i am now 25, i haven't been taking my meds for about 2 months and i hurt so bad everyday its getting worse, but its like i cant admit it until now but i dont have a doctor cause i moved and didn't think to get one cause for a year i didn't feel any pain and i though i didn't have it anymore. im young i dont want to be sick.....since reading this tomorrow im going to find a doctor cause i guess its better to be sick then dead......
Charlotte Gerber (author) from upstate New York on August 28, 2011:
Hi Josie, You echo what a lot of us feel, including myself. Sometimes it does feel like a lonely disease. I think it is because sometimes we give the appearance of feeling great (you know, chin up, smiling through the pain) so people think everything is fine. I find I especially do this in front of my children because I don't want them to worry about me or scare them.
I wish there was a way to let other people feel the way we do on the inside- I think then they would have a "light bulb" moment and finally "get it." I have family members who are constantly pushing me, thinking if only I would "act normal" I could get back to being my old self. It is so frustrating, and I can tell by your note you're in the same boat.
It is my wish that the person from Lupus UK will help you out, and perhaps get some of those around you to understand the disease and realize you're a fragile person, despite what you may look like on the outside.
Take care, and hang in there! ~Charlotte
opusmith on August 21, 2011:
I enjoyed your article and found it informative. I was diagnosed with SLE four years ago. I was admitted to hospital with a suspected stroke. A junior doctor commented on the rash across my nose and cheeks. I said it comes and goes. After two years of tests and being told I had everything from IBS !! to Chronic Fatigue Syndrome, I was finally told I had SLE Lupus. Other than the regular blood tests and taking a drug called Methotrexate, I have been left on my own. No support group, no help nothing. When in flare up the depression is horrendous as is the pain, yet I find the pain never ever leaves me and constantly darts around my body, unrelenting. I look back n my life and can almost pinpoint when it began. Everything from my fertility problems (I had IVF to have my two) to my depression and the cramps I endured every night in my legs as a child, have since been explained by Lupus. No one seems to see how ill it makes me. They expect me to carry on, yet there are days when my toes are curled with cramp, my fingers locked into spasm and I cannot even climb from my bed to see to my teenagers. I find Lupus a silent and lonely disease. I take the meds, exercise diet etc and stray positive. On my darkest days I lay on one of my children's beds and hug their pillow to help me through. Cancer is linked with Lupus too and my drs tell me they believe it is why I have spent over four years battling it. I am holding a tea party soon to raise money for Lupus Uk and to try to educate my friends about it. I have asked for someone from Lupus UK to give a talk on it and explain to my friends what is happening to me and what I need from them. I am hoping at least a few of them will suddenly realise what I have been living with all this time and maybe instead of constantly asking me for help, they might see I need it sometimes too. Thank you for an excellent hub. Josie.
Charlotte Gerber (author) from upstate New York on August 02, 2011:
Hi Sareena, Hang in there. There are many of us out there, but we still need to get the word out. We don't get as much funding as other diseases, which is unfortunate. This past year they couldn't afford to keep our local support group going because it is such a rural area. However, there is talk of having "virtual" support group meetings on the Internet through the Lupus Foundation. Thanks for stopping by, and best wishes for a healthy life!
Sareena Saulter on July 22, 2011:
At one pointe in life i use to feel that they don't aknowledge Lupus much then i started to see different things on lupus.My name is Sareena and i was diagnosis in 1988, i was so afraid, but lately iv'e been working on my eating habits and exercise and i have blogs on the foods and there benefits really enjoyed your article it's helped me very much,it was like conformation that i,m on the right track.
How important is your health!
medical blog on December 05, 2010:
Sometimes in SLE long courses of prednisone are needed. Often a burst course to abort a flareup is enough. One key to using prednisone is to keep the duration of treatment as short as possible. If you use even a very high dose for less than 2 weeks you usually don't need a prednisone taper. http://drpullen.com/prednisonetaper/
Charlotte Gerber (author) from upstate New York on November 16, 2010:
Hi Kimberly Hill - One tip for going to the dentist (if you have jaw pain that day) - ask for a "bite block". It makes getting your teeth worked on (fillings) much easier, though you can't use it during regular teeth cleaning because it would get in the way. It is a little rubber "block" that they put in the back of your mouth on one side; you can rest your jaw easily with it in your mouth.
Kimberly Hill on November 15, 2010:
Thank you so much for this. For the longest time I thought my jaw pain was just a bad case of TMJ. When I was diagnosed with Lupus I still blamed the pain on TMJ. Now I see it could be focused in the jaw also. Thank you!!
kims3003 on July 09, 2010:
Thank you for such a well written hub - great writing. I, too have Lupus
KRozell on June 18, 2010:
I was recently diagnosed with Lupus. My diagnosis is a blessing and a curse a blessing to know finally after 2 yrs of testing and many doctors that these my migraines, intense chest pains and joints paints really was not just stress or old age. But in fact my body telling me something was wrong, very wrong! There were times when the slightest touch hurt and I just could not understand why? Now I know. This website is right on the mark and I am so glad I found it because I am going to give it to my husband who still does not understand or maybe he does not want to accept the fact that I am not the same woman he married and probably will never be again! And that is hard to admit! Unless someone has this disease or another similar one they cannot fathom what it is like to not have the energy to be able to get out of bed! Or to have to have your own pharmacy just to keep the pain in check. This disease can be devastating and I Pray for everybody on this website to be blessed by God's touch and His Peace that passes all understanding!
Pamela Oglesby from Sunny Florida on September 17, 2009:
This is a great article. It is difficult for anyone who hasn't experienced lupus to understand the numerous ways it affects our lives. I have had dark days also, but fortunately I ended up with a good doctor and got back on track. Thanks!
Steviebeth1227 from Nashville on September 14, 2009:
I have SLE (lupus) and I found your artice to be spot on and true to my life. I found parts encouraging and I am attepting to try to make my way out of the bed and become an "alive" person again. You had some really great suggestions. I purchased a wii a while ago for "fun" but learned it required energy and motivation. I quicklt put it down but you have inspired me to get back on that horse. Thanks!
Donna Oliver from Midwest, U.S.A. on August 10, 2009:
Thank you for such an informative hub on lupus!
rosariomontenegro from NEW YORK on June 17, 2009:
Thank you for calling our attention to a disease that is not so commonly known. I will search about it and wish you the best with your life.
Melinda Winner from Mississippi on June 16, 2009:
I felt the same way when I was first dx. I am such a firm
in not throwing in the towel great advise, Love your hub !
I wish you all the best !