Lupus Survival Guide
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 HurtsClick thumbnail to view full-size
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.