chronic illness

living with irritable bowel syndrome

Living With Irritable Bowel Syndrome (IBS)

Living with irritable bowel syndrome (IBS) is a constant battle that leaves many feeling frustrated, exhausted, and emotionally drained. There are days when symptoms are so strong, it prevents you from the daily tasks you want, and need to be doing. While it’s completely normal to feel this way, it is important to learn to understand what causes your body to react and how to work with it instead of against it. Preparation is key in the successful management of your symptoms. With proper planning and awareness, you can eliminate the fear and reduce the symptoms that prevent you from being an active participant in your life. What is IBS? IBS is the most common gastrointestinal disorder that affects between 25 and 45 million people in the United States. A chronic and unpredictable condition with intermittent abdominal pain is accompanied by a variety of other symptoms. These symptoms can change in both intensity and frequency over time. Among those who have been diagnosed with the illness, 40% of people have mild IBS, 35% moderate, and 25% severe. IBS symptoms include: Bowel pain Changes in bowel movements: diarrhea, constipation or both Incomplete Bloating and abdominal distention Gas Indigestion Nausea The cause …

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Member Christine’s Instagram takeover for World Lupus Day

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!) Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way. Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure. “You make a living by what you get. You make a life by what you give.” —Winston Churchill Finding the right …

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13 Spring Clean Laundry Hacks when you have a Health Condition

Pain, fatigue and other symptoms can make spring cleaning and household chores… stink! We’ve rounded up some tips, tricks and life hacks for cleaning and doing laundry when you have a health condition. 1. Make a plan. Write out your cleaning to-do list (or find a free printable one online) and tackle your top priorities first. Pace yourself, even if it means spreading your chores out over several days or weeks. Think of spring cleaning as spring/summer cleaning – no rush. 2. Set time limits. Chelle Iredale, a writer for The Mighty who’s living with fibromyalgia, knows her cleaning limits: “15 minutes is a good amount of time for me,” she says. “Do what you can in that amount of time, then take a break. Re-evaluate how you’re feeling after each chore so you don’t overdo it.” Try to squeeze in some quick scrubbing or dusting sessions during TV commercial breaks. 3. Become a “no shoe” household. So what, if a few guests grumble? This rule will cut down on dirt. “When it comes to your health, do what’s best for you – not the masses,” Chelle says. 4. Pick products that make cleaning easier. It might be time to retire that ol’ mop and broom, writes …

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Meet Cyrena from the PatientsLikeMe Team of Advisors

  Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology. Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a challenge. She believes there is a lack of resources in higher education to support students with chronic illnesses. Still, this hasn’t stopped her from taking control of her health. Below, Cyrena shares how she’s tracked her mood on PatientsLikeMe for over seven years, and how she prepares for every doctor visit to make sure all her questions get answered. What gives you the greatest joy and puts a smile on your face? Probably a full 24 hours with no obligations other than to play with my two cats, eat whatever I want, and hang out with my partner all day. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? The greatest obstacle that I have faced living with chronic illness has been getting through …

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Not Recognizing the “New Me”

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family, friends or strangers try to assist with something? Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment? Have you worried that becoming someone who receives help is going to change your lifelong identity? If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem. …

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The Joy of Being Helpful

Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past.  As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still able to give to others, despite the challenges of their illness. Here are some of the small and large contributions our members have made, helping them to feel good about themselves: Going to the hospice to sit and talk with the residents Sending handwritten letters via snail mail to loved ones Participating in educational events about the role of service dogs Getting good friends together for a gathering to reconnect Volunteering in a food bank to appreciate having food to eat Calling an isolated grandparent or friend regularly on the phone Allowing the cat from down the road to come inside and snuggle Fostering or adopting medically fragile children in the system Have you found strength – or a renewed sense of purpose – by doing what you can to help others?  Share your experiences in the comments section.  Also, you may want to check …

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