Lupus is often considered one of those “but you don’t look sick” diseases. In many instances, when those with Lupus aren’t going through a Lupus flare, they physically look fine. While research for this debilitating disease has improved to the point where people with Lupus can still live long and prosperous lives, Lupus is still a major illness that not only needs to be monitored, but needs to be taken seriously.
Lupus is a chronic inflammatory disease that can affect many parts of the body, including the kidneys, the heart, lungs, skin, and even the central nervous system. To put it simply, the immune system seems to get confused and cannot tell the difference between your own cells/organs and foreign ones. The immune system’s response is to attack those “foreign invaders of your body”, even though these cells/organs are not foreign and are actually your own. This causes inflammation, and medication is required to minimize the immune system’s response.
There are several symptoms associated with Lupus and this often makes it difficult to diagnose. But once you ARE diagnosed with Lupus, it’s important to look after your body. As a person with kidney disease caused by Lupus, I’ve had more than my fair share of ups and downs. If you know anything about Lupus or any other autoimmune disease, you’ll know that there are certain things that you should and shouldn’t do. An important part of figuring that out is listening to your body. Putting some of those obvious things aside, here are some tips I can give about taking care of yourself while living with Lupus.
1) Take your Meds!
Hmm, that seems pretty obvious, right? Wrong! With a disease like Lupus, there are times when you’ll go through extreme highs and extreme lows. There are times when I’m so paralyzed with fatigue that I can barely get out of bed. Who knew that only a few short weeks after that, I’d be spending the day at an amusement park, running around and having fun? That being said, most Lupus patients are on a plethora of medication in order to keep their disease under control. That being said, it’s important to remember to always take your meds! Some people have the false mentality that they can reduce or even stop taking their medications because they “feel better”. Trust me, the reason you feel better is most likely due to the medications you’re taking in order to control the Lupus. Never stop or reduce your medication without first speaking to your doctor.
2) Your body is a temple!
This doesn’t just apply to those with Lupus, but to anyone and everyone. Your body is a temple! You get out of it what you put into it. So eat GOOD food. Eat your veggies and eat your fruit. If you have kidney disease, it’s also important to limit foods with high phosphorus and high potassium. When it comes to fruits & veggies, some good choices are:
Some not-so-good choices include:
- orange/orange juice
- cantaloupe/honeydew melon
- dried fruit
I’ve always been a strong advocate of “everything in moderation”. Don’t deprive yourself of anything, but don’t go overboard either! I myself am on a specific diet, but I’ll discuss that at another time.
If you’re on prednisone, especially if you’re on a high dose, remember to limit your fluid and sodium intake. If you don’t, you’ll wind up looking like a blowfish.
The outside of your body is important too! I can’t stress this enough: moisturize, moisturize, MOISTURIZE! I’ve suffered from many an episode where my weight has ballooned up, and then returned back to what it previously was. And large weight fluctuation in a short amount of time = stretch marks! Make sure you moisturize daily, or even twice daily, in order to keep those stretch marks at bay. It’s also essential to wear a high SPF sunscreen when you’re going to venture out into the sun. I wear an SPF 50 at the very least, and I also try to wear clothing that covers my skin when I’m out in the sun too.
If you have problems with your joints or with mobility, it’s very important to see a physiotherapist as well. This helps strengthen those tired and sore joints so that you can regain some of that mobility again!
3) Be honest with those around you!
It is important to be honest with those around you, including your family, your friends, your school, and/or your employer. It’s not a good idea nor is it beneficial for you to hide how you’re feeling or to hide your limitations. It’s ok to say no to that family gathering, and it’s ok to say no to a night of clubbing with your friends. It’s ok to take some time for yourself and just relax. If you’re in college or university, register with your school’s disability office and let them know about possible extensions or accommodations that you may need. Don’t be afraid to speak to your employer too. My employer allows me to work reduced hours and take breaks as needed. They even got me a snazzy new custom fitted chair for my desk! It’s ok to ask those around you for help. Don’t let your pride prevent you from doing this, because your pride may lead to additional stress and Lupus does NOT like stress.
4) You are your best advocate
Don’t get me wrong. I love all of the medical professionals in my life. They’ve done so much for me and have helped me in so many ways over the past 11 years. But remember, just like anyone else, these medical professionals are only human. You have to make sure that you know what medications you’re on. You also have to know what they look like, and know the doses. A little book in your wallet will do. While admitted to the hospital, I’ve been accidentally given the wrong pills on more than one occasion. Never in any of those instances have I consumed the wrong medication. If there is something that doesn’t look/seem right or something that I don’t recognize, I ask questions. I used to have the “but I don’t want to irritate/hurt their feelings” mentality, but face it: this is your health we’re talking about here! I’ve also had doctors I’ve never seen before come in and start adjusting/stopping/starting all sorts of medications. How can a doctor who’s read my chart for 10 minutes know enough about me to start adjusting everything? ASK QUESTIONS!
Remember to discuss any illnesses you may have with your doctor. By illnesses, I’m referring to a cough, sore throat, flu-like symptoms, etc. Keeping your mouth shut about things that may seem minor or trivial can quickly snowball into something more serious, like *gasp* an infection! Our immune systems are already compromised due to all of the medication we’re on. Trust me, the LAST thing you want or need is an infection!
Lupus may be a part of your life, but it doesn’t define who you are! It’s important to know your limitations and listen to your body, but don’t let Lupus stop you from doing what you want to do, going where you want to go, and most importantly, being who you want to be!