There is no right answer of how to deal with a lupus diagnosis. As you can see some of us felt the same way, some of us delt differently. The important this is that at some point you deal with it, and get started taking care of yourself!
It is like any other "hard news" some people cry, some scream, some need to be alone, some people need tons of family and support, etc.
Everyone handles things differently- there is no right or wrong way.
I am glad we are sharing how we all felt though because it is nice to share our stories. It is nice to know that we are not alone, and that whatever we are feeling is "normal".
I must admit that today I am genuinely too tired to write this post. Oh, how I hate it -- "tired." Somehow, that word can't possibly begin to describe the complete exhaustion and fatigue I battle on an almost daily basis.
Right now, I feel like I can probably fall asleep, and it is only the middle of the day! It is a frustrating feeling. Many times, even if I do take a nap, I do not wake up feeling refreshed or rested. This is a very difficult concept to explain to people who are not living with lupus. I can't spend my life in bed, even though on some days, it's tempting to continue sleeping.
I have two different kinds of days: "Couch days" and "Life days." Sometimes, I can live my life normally with no major adjustments. But then there are the days when I am "living life from the couch." Don't get me wrong -- even on so-called "normal" days, I am not going to run a marathon or anything like that. But I am not stuck in bed, and that is always a plus in my book.
On my "normal" days, I try to do the essentials like laundry, errands, and doctor appointments. I might even cook an extra meal and freeze it. I have learned the boundary between doing too much and doing that bit extra that might help me later when a bad day comes along. Even on good days, I have learned to pace myself. On those days, working a nap or downtime into the schedule is still an essential for me.
On days where I am living life from the couch, I have learned little tricks that have helped me remain functional and happy, too. First and foremost, I have tried to let go of the guilt, stress and anxiety. These are horrible emotions for anyone to experience, especially those of us living with lupus. If I am having a couch day, I am not being lazy. I have lupus and I am actually being responsible by taking care of myself. (Some days I need to repeat this to myself over and over -- like a mantra.)
Once I am comfortable on the couch in loose clothes or pajamas, I make sure I have everything around me. I will place the TV remote, my phone, my laptop, tissues, fuzzy socks, a blanket and anything else I might need within reach. I have learned to leave snacks and drinks and other essentials close at hand in case I need something to eat. I have movies to watch with my daughter so she is entertained on these days. Couch days may be the days I order food in, ask for help, or even have cereal for dinner! By now, I know how to quickly make the couch my home base.
What tips do you have to share for getting through the "couch" days and the normal days? What strategies do you use to get the rest you need on both types of days?View Thread
You know your body best, so once you figure out what may trigger a lupus flare, the obvious measure to take is to avoid your individual triggers at all costs.
But as we all know, we each have a life to lead, and that includes the daily responsibilities that come with it. None of us can live in a bubble! To state it simply, there may be certain situations when your options are limited, and you aren't able to avoid something that may trigger a lupus flare. That's pretty much a fact of life for anyone who has lupus.
The most dreaded situation is when you truly feel that you are doing everything right -- you take your meds, you follow all the "lupus rules," and you still find yourself in the middle of a flare. That's an incredibly frustrating situation for me. How about you?
When learning to live with lupus, it is best to realize that flares are going to happen, so knowing how to "ride the wave" is the best thing to do. Here are some tips I have found that work for me:
1. I do what I can to avoid my known triggers.
2. I consistently take my medicine.
3. I rest and avoid stress whenever possible.
4. When I feel a flare coming on, I see my doctor right away. I have found that avoiding it or putting off the visit only makes it worse.
5. I also try to take care of the rest of my body, so that outside of my lupus, I am as healthy as I can be. For example, if I get a cold, I take care of it right away. I get my eyes examined. I see my dentist for checkups. In other words, I take care of the "maintenance" items on a regular basis.
6. I have learned to ask for help when I need it.
7. I know I must have patience and faith in knowing that a flare is only temporary. I remind myself that even though I may be in the middle of a flare right now, with my doctor's help, it will soon pass, and I will feel better.
These are 7 things that help me avoid and handle flares. Let's help each other by creating a top ten list. What 3 tips do you have you add? No matter how long you have been living with lupus, you can always learn something new! Share your individual strategies for avoiding lupus flares, and what you do when one strikes.View Thread
Pain is an unfortunate symptom experienced by many people who have lupus. Although there is no magic solution for the issues faced by those who live with pain, there are numerous ways to manage the severity and/ or frequency of pain.
There are many techniques that doctors suggest and patients recommend for managing pain. Each person has to find out on an individual basis what works best for them. Be sure to ask your doctor before trying any of these methods to reduce pain.
• Exercise. Some people who have lupus swear by the benefits of getting regular exercise, while others can't get out of bed, and find it close to impossible to even think about going to a gym.
• Massage Therapy. A soothing massage can help ease muscle tension and aches, but if you are sensitive to touch due to fibromyalgia or any other condition that is secondary to your lupus, this treatment might not be right for you.
• Medications. Many patients work with their doctor to find the right combination of medications that may help reduce pain.
• Other Strategies. Some people prefer to try heating pads, yoga, meditation, physical therapy, or similar measures that can help decrease the pain of lupus.
Pain is difficult for anyone to deal with, but there are many available options and combinations that may help ease those painful days. Remember that what works for you might not work for someone else, and vice-versa.
Those of us who live on the front lines of the war against pain often have their own pain-reducing techniques and advice to offer to others. What are your best pain management techniques? Methods that work for you may also help someone else who lives with pain. Share your ideas with others in the community!View Thread
Did you think you had to give up everything you dreamed about when you learned you had lupus? I know I did. I was scared. I didn't know anyone else who had lupus, and I wasn't sure what to expect would happen to my life. I think it is normal to be afraid of the unknown.
I learned that I could achieve my dreams; they just might need to be slightly different than what I first thought they might be. Maybe I wasn't going to be a mom of a huge family, but being a mom of one is perfect for me. I always loved to dance, and although I may not be a professional dancer, maybe one day I will help out at my daughter's dancing school. You can still gain the same joy from things that brought passion to your life before lupus.
A helpful trick I've learned to use is to take steps by creating a group of smaller, more achievable goals, instead of one huge, overwhelming goal. This way, I am able to feel a sense of pride when I get things done, but I do not have to wait until a larger task is finished. I will clean out one closet at a time, instead of attempting to clean the entire house. In fact, I sometimes have to clean one shelf at a time -- but eventually, each goal is achieved!
You also can work with your doctor, and hopefully have manageable flares or periods of remission that will allow you to work toward achieving your dreams and goals.
How do you feel about your dreams or goals since receiving a lupus diagnosis? How have your dreams or goals changed? Tell others in the community how you work toward realizing your dreams and goals.View Thread
Sometimes, I feel like a detective. Instead of seeking clues to solve a crime, I look for clues to the factors that might trigger my lupus, hoping these signs will help me ward off a potential flare.
I am not always the best "detective," and sometimes flares or lupus symptoms still appear, but I try my best to take a proactive approach to managing my lupus. When I'm feeling bad, I look for possible lupus triggers by taking note of what I think I did or didn't do before the symptoms appeared. Then I try to avoid that possible trigger in the future. It's that simple.
Lupus triggers will be different for everyone, but here are some that I have experienced:
Sunlight People with lupus know that direct sunlight is one of the most common triggers to avoid. We hear all about photosensitivity and lupus. I do my best to stay out of the sun, use an effective sunscreen, wear big hats, and take other measures to avoid direct sunlight. Now that I have become a mom, it's often hard for me to stay out of the sun. When I am in the sun, I notice I will feel fatigued, or get a migraine headache.
Not Eating I know that if I miss a meal or a snack, I end up feeling affected by many lupus symptoms. I also find that if feeling nauseous kept me from eating in the first place, I will always feel worse later if I don't have anything in my stomach. Eating regularly helps keep my energy at a consistent level, and also reminds me to take my medicine on a regular schedule.
Weather Changes My body gets achy, and my joints get swollen whenever it is raining, or whenever there is a drastic weather change. Although I obviously cannot avoid this trigger, I can make note of it and try to arrange my schedule accordingly when a major weather change is expected.
These are just a few examples of lupus triggers for me. I also notice that experiencing stress, a lack of sleep, and even my menstrual cycle can affect how I am feeling.
I know some patients who keep an elaborate medical journal that lists every day, how they were feeling, what they ate, their temperature, and other factors to help them better understand their bodies and their lupus. I did something like that when I was first diagnosed with lupus.
These days, I keep a simple calendar that I occasionally mark the differences in how I feel, changes in medications, and other useful information. I wish I kept better track of what factors presently trigger my lupus symptoms.
You need to find out what works best for you. Lupus is an ever-changing disease. I have had lupus for more than 18 years, and what triggered my lupus at the beginning is somewhat different than what triggers it now. If we don't know our own bodies and how to best take good care of ourselves, how can we expect anyone else to be able to help?
Tell me about the detective work that helped you learn your lupus triggers. What methods have you developed to help avoid triggering your lupus symptoms and flares?View Thread