A Different Normal

By Sona Mehring

Most people will have some experience with caregiving – either by providing care for a loved one or by needing it. It can be easy to overlook those who put aside their needs to take care of their loved ones because they tend to overlook themselves. Many caregivers give so much to the people they care for that they ignore their own needs and experience physical and emotional burnout.

It is important for caregivers to have some “me” time. Staying healthy is just as important as keeping your loved one healthy.

A critical way to maintain your health, stamina, and strength is good nutrition. Darlene Kvist is owner of Nutritional Weight & Wellness and has more than 25 years of experience as an educator, counselor and psycho-nutritional consultant. Her article, “Nutrition: The Foundation of Self-Care for Caregivers”, provides an excellent overview of the importance of eating well, how the food you eat affects your mood, and how good nutrition protects you from future health problems.

The National Family Caregivers Association also provides a number of resources to educate, support, and empower the more than 65 million Americans who care for loved ones with a chronic illness or disability.

If you have a caregiver in your life, I urge you to remind them to take time for themselves. They may even need to be forced because they simply aren’t thinking about themselves. But they’ll come back feeling refreshed and renewed.

Do you have any tips for caregivers and how they can make sure they are also caring for themselves? Share them in the comments below.

Sona Mehring is the founder and CEO of CaringBridge, a nonprofit bringing people together during a health event. CaringBridge is a social network where you can connect, share and receive support during a health journey. Follow Sona on Twitter – @gogosona.

By Maya Brown-Zimmerman

Every month seems to be an “awareness month” for one disease or another. October is breast cancer awareness month. April is dedicated to Crohn’s disease. May is the awareness month for Fibromyalgia, arthritis, and Ehlers Danlos syndrome. Right now, my focus is Marfan syndrome awareness month. With so many diseases and disorders fighting for attention, it can be easy to overlook the importance of an awareness month, but it serves several useful purposes for the disease community.

The obvious benefit is the publicity that organizations and their volunteers can generate during their month. It is a time to rally around your cause, like the National Marfan Foundation is doing as it marks National Marfan Awareness Month. The NMF launched a Facebook and Twitter campaign this month, sharing “Marfacts” every day and was an I Wear Your Shirt sponsor on February 17. The NMF is also participating in World Rare Disease Day on February 29.

The awareness month also is a time for an organization to rally its members around fundraising and awareness for their cause. The NMF has a Hang a Heart Campaign that people can participate in; others create their own projects. One of my friends is donating a portion of proceeds from her jewelry sales to the NMF this month, and another family I know is running the Iron Dog race to raise funds and awareness.

Finally, awareness months bring the community together. This can’t be underestimated, particularly when you have a condition that is not that common. I joked on Facebook that I know it’s Marfan awareness month because all of us “Marfs” have one of the same two Marfan Awareness profile pictures, created by one of our members. We’re bonding over sharing our diagnosis stories, raising funds to benefit fellow Marfs in need, and passing around daily Marfan trivia. February reminds us that we have a lot to be proud of and grateful for. It’s a time for hope and I, for one, feel rejuvenated by the time March arrives.

While awareness months, especially for rare diseases, don’t make the news headlines, they are important for the disease community. They bring us together – even if it’s virtually – to celebrate ourselves and give a greater voice to our cause.

Does your disease/disorder have an awareness week or month? Do you find it useful? What are some ways that you celebrate?

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.

By Krista Kellogg

I think one of the greatest myths of our modern world is that of work-life balance. Does anyone really ever achieve it? To me, it is a ridiculous concept as juxtaposed with the reality of our 24-hour everything environment. Sasquatch with a BlackBerry. It is certainly a myth of the first world, where we have the luxury of choosing our work and relying on the relative comfort of a decent working wage. I think it’s also a uniquely American condition, where it is perfectly normal to spend more time in your working environment than in your home environment and to fill the spaces in between by picking up, dropping off, and driving through. We don’t even have time to spell things out anymore, yet we are supposed to find balance between the boardroom and ballet lessons. This frenetic pace in which we live and work must have an effect on our bodies, minds, and souls. It can’t be good for us. For me, trying to manage a chronic disease under these conditions is like trying to protect a puffball of dandelion seeds in hurricane-force winds.

Managing a chronic disease like psoriasis and psoriatic arthritis takes time and patience, both precious commodities in my life. It also takes a keen understanding of one’s limitations (something we are ingrained to think we shouldn’t have). Just do it! Make it happen! Be all you can be! To combat these modern-day marketing mantras, sometimes I have to talk to myself out loud about my own needs. “Slow down.” “You are in pain.” “It’s ok to rest.” These basic requirements should be elemental, but amongst the din of email alerts, text vibrations, and never-ending deadlines, my voice becomes quieter and quieter, until only crisis (or extreme pain) can avert me from the hamster wheel. Then, I feel guilty for being a sloth. This is no way to live or work.

For me, learning to live with a chronic disease is learning how to take care of myself. There are certain truths about it. These are mine (in no particular order): 1. I have a chronic autoimmune disorder for which there is no cure; 2. If I don’t apply my medications everyday, twice a day, I will flare; 3. If I don’t do my light treatments, I will flare; 4. If I don’t get enough rest, I get stressed; 5. When I am stressed, I flare; 6. If I don’t tell the people around me that I have limitations, they don’t know (this includes bosses, colleagues, husbands and doctors); and 7. Saying “no” is not a crime. It seems simple. It’s not. Try as I might, there are times that I ignore my truths because I am too busy getting ahead, being better, doing more. There are consequences. There are flares.

And then, I have to begin again. Throw away the old maps, retrace the path to my truths and head out to find the ever elusive work-life balance… my life’s work.

Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis.  She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.

By Karin Gelschus

Karin Gelschus was diagnosed with lupus at 23. She currently works as an interactive marketing specialist at CaringBridge, a nonprofit providing personal websites that connect people experiencing a health challenge to their family and friends.

I was reading through the CaringBridge site of a friend who was fighting kidney cancer. After a few years of countless treatments and doctor’s appointments, he was done. He had beaten cancer. His years of hardship were summed up in a few simple, but powerful sentences. He was walking away from cancer…for good.

While I in no way shape or form was comparing my condition to what he went through, I couldn’t help but feel jealous that he was done. No symptoms. No swallowing dozens of pills. No planning around how good or bad he may feel. He was done. He walked away.

Can I walk away? Not yet, most likely not ever as there is no cure for Systemic lupus erythematosus (SLE) or many other autoimmune diseases.

It was never a death sentence, but at 23 years old, it was hard to come to terms with my lupus diagnoses.

In a 90-degree waiting room filled with people with an average age of 70, my dad said, “We’ll get through it.” Tears had already surfaced. “Karin, you’re a fighter. We can take this on.”

That day my dad’s comforting words held me together, and his confidence stayed with me through years of ups and downs.

Encouragement and support are the strongest pills anyone with a chronic illness can take.  CaringBridge offers that medicine every single day through its sites. I’m able to visit my site any time and read all the encouragement and support my family and friends have left me through guestbook messages.

There are times when I can’t help but wonder if there will ever be a day in my life when I get to say, “I’m done.”  Will I ever get the chance to walk away? Who knows, but in the meantime, those messages give me strength to power through the daily frustrations of my lupus journey.

What helps you or your loved one get through the everyday challenges of a chronic illness? Share your thoughts in the comments below or in our Chronic Conditions community.