THE UPS AND DOWNS: COPING WITH LUPUS

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You’ve learned that you have lupus. Just getting to this point might have been difficult. Getting diagnosed may have taken a long time, and you could have felt frustrated or discouraged. Now you’re dealing with changes in your life and new challenges. Your friends and family may be dealing with these changes too.

After being diagnosed with lupus, you may feel many different emotions. You might be angry, depressed or fearful about losing the good health you had before, and uncertain about how lupus will affect your life. You might be unsure about what to tell your family, friends, and people you work with. Maybe you felt some relief about getting a diagnosis, but you might be concerned about your health. Possible changes in your physical appearance might be hard to deal with emotionally. It’s not unusual to have these feelings.

Making Changes – For the Better

There are some common changes people living with lupus might have to cope with. You might find that you have changes in your energy level and what you can do physically. Judging how you feel each day and pacing yourself can help you accomplish the things you’d like to do, while also taking care of your health.

Changes to your lifestyle are usually necessary, including changes in the roles and responsibilities of you and your family members. Focus on your abilities and accomplishments, and don’t feel that you have to “do it all” yourself.

In addition to some lifestyle adjustments, many people find strength to cope with lupus through religious faith, family, a support group, place of worship, community and hobbies.

Tips for You and Your Family

  • Talk honestly with your family – and ask them to be open with you.
  • Help your family learn about lupus, so they can understand how it can affect you and how it might affect them too.
  • Share materials about lupus with your family.
  • Encourage family members to contact the resources at the bottom of the reverse page, such as groups for families and caregivers.

There are many things you can do to take care of yourself:

  • Maintain a positive attitude and appreciate yourself. Focus on your talents, abilities and strengths.
  • Recognize your resources, such as your family, friends, coworkers, and community.
  • Don’t be afraid to set goals, but be realistic and stay flexible.
  • Recognize your accomplishments, no matter how small.
  • Focus on a hobby, or start a new one.
  • Enjoy things that make you feel good. They can be as simple as pretty flowers, a good book, or doing thoughtful things for others
  • “I made myself a promise: to do one good thing for myself every day, and one good thing for someone else – even if it’s just a smile.”

Dealing with Stress

One of the best ways of dealing with stress is to prevent it. Here are some actions you can take:

  • Learn to politely say “no” to others when you need to take care of yourself.
  • Do some rearranging of your life – let go of things that are”t necessary

If you need to reduce your stress right away, here are some suggestions:

  • Take a few slow, deep breaths and let your shoulders relax.
  • Take a “time out,” like a short walk.
  • Close your eyes and imagine a peaceful, beautiful place or experience.
  • Listen to soothing music.
  • Do some gentle stretches.
  • Sit quietly and focus your thoughts on a word, a sound, or the rhythm of your breath.
  • Do something you enjoy and find relaxing, like gardening or writing a letter20170620_024043
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Lifespan Of Lupus

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Lupus is so unpredictable with how it strikes the body, some patients will have severe lupus with organ involvement that could become life-threatening, and others may experience minor symptoms.

Lupus affects patients very differently, and no two people living with the disease will have the same experience. Some will have mild cases with long periods of remission, whereas others will experience severe lupus with many flare-ups and life-threatening complications.

Those who have mild to moderate lupus without organ involvement may enjoy a normal lifespan so long as they take their medications, look after their general health and follow their doctor’s advice. However, some patients may not have organ involvement, but suffer from lupus artiritis, which can limit their mobility.

Some lupus patients will have frequent hospitalizations, due to organ involvement. Despite that, many people living with the disease have no to little hospital stays. In severe cases, organs damage and failure can occur. Historically, lupus caused people to die young, primarily from kidney failure. Today, with careful treatment, 80 to 90 percent of people with lupus can expect to live a normal lifespan.

Through the Eyes of a Lupie

I am 42 years old, and am suffering from a debilitating disease, systemic lupus erythematosus (SLE).  Even now, nearly 12 years after my lupus diagnosis, I have trouble believing that this is my life. Even as the inner turmoil that comes with a lifelong diagnosis subsides, I still struggle to coherently explain to others what lupus is, and why, although I may not look sick, it can be truly disabling.

I was diagnosed with systemic lupus (SLE) and rheumatoid arthritis during the prime of my life, age 30. However, prior to the diagnosis, I experienced several lupus symptoms such as, swollen and painful joints, skin rash, persistent fatigue, and hair loss. As my health declined, I was unable to groom myself, turn on/off a faucet or turn a door knob. I began to lose all independence, as I had to depend on others to transport me to and from any doctor appointments. The uncertainty of this disease feared me, but I couldn’t fathom the impact that lupus would actually have on my life.

I am a Masters Level Social Worker, and found pleasure in my career. I have always enjoyed helping others, and found gratification in protecting vulnerable children from abuse and neglect. Social work was my life, it warmed my heart to know that I made a difference in someone else’s life. Sad to say, after 10 years in the profession, I was forced to resign due to complications of lupus.

Prior to the diagnosis I was an active person who enjoyed life by spending time with family and friends. Some may have considered me to be a workaholic because I usually worked two jobs. However, this was so that I might provide my mother financial support. I am usually not one to complain or desire others to pity me, though, I wish that others would fully comprehend the seriousness of this disease. I have lupus, an autoimmune disease that causes my body to mistake its own cells and proteins for invaders. Then it attacks them with the same force as a healthy immune system attacking an infection. For me, lupus usually manifests as painful flu-like symptoms that doesn’t subside.

Early on in this journey conventional drug therapies were effective in my case. I was prescribed prednisone, methotrexate, and plaquenil, all of which were successful with keeping lupus stable. One year ago I was forced to discontinue plaquenil, seeing that it caused retinal toxicity. Here I am nearly 12 years later, have had my moments of stable health, but I have had many periods of brutal flares. When this happens, lupus decides to make me extremely fatigued. It inflames my joints, making simple tasks and activities nearly impossible. I have suffered from anemia, lung disease, pericarditis, alopecia areata, hypertension, and a decline in my kidney functions. The unpredictable nature of lupus has forcibly shaped my choices in life. Here are a few things that I wish people understood about having an autoimmune disorder, such as lupus.

1. “A good day is a day I can function”
I can’t quite recall the last time that I actually felt “good” without any pain. A good day for me is having the strength to run an errand or maybe complete house hold chores. I am usually limited to the number of errands that I am able to complete in one day. Some of the simplest tasks, such as preparing meals, doing laundry, bathing/showering, causes exhaustion making the next day difficult to perform any tasks. Enjoying outings have also become challenging for me. The enjoyment of an outing usually means several days in bed trying to recuperate .

2. “Treatment can radically change your looks and affect your self-esteem”
After taking steroids for nearly 11 years, I have gained a great deal of weight. As a result of lupus, medications, and alopecia areata, I have lost more than 90% of my hair. Perhaps I may seem vain to some, but for me, my hair loss wasn’t by no means empowering. It caused me to become withdrawn and affected my self-esteem. Besides, I wasn’t given the choice of becoming bald, it was forced upon me. Since, I have found beauty and gained great confidence in my appearance.

3. “I may have to cancel plans”
Because of the unpredictability of lupus, it is difficult to make plans when you don’t know how you will feel from day to day. The exhaustion and pain to even contemplate sitting up, let alone driving to an event is tough. However, I must admit that there are times when I force my body to cooperate, pushing myself for some enjoyment. The truth is I miss my old life. I miss being able to go shopping and hanging out with family and friend, and canceling plans because I feel sick is always emotionally difficult for me.

While the list of problems that are inherent to having an autoimmune disorder might seem overwhelming, like anything else in life, you eventually become better at coping. Most importantly, the thing we need more than anything else from our family and friends is that you’re understanding of our condition, and not resentful for having to care for us. I am grateful that I am still here, standing strong and confident, and full of life.