2 posts tagged “health management”

Managing MS fatigue & guilt

Posted April 24th, 2018 by

Ever feel guilty about how your MS symptoms impact your life or the people around you? Like you can’t “pull your weight” or that people don’t understand that needing to rest is a real symptom and not laziness? The PatientsLikeMe community can relate — there are nearly 26,000 members with MS reporting fatigue as a symptom, and over 800 forum threads on fatigue and guilt.

Here’s what some members are sharing about their fatigue guilt:

Missing out on family time

“I slept all afternoon and missed a beautiful afternoon with my wife and daughter. To make it up to my wife when I woke up I decided to tackle the kitchen and the laundry. I managed the kitchen but had to give up halfway into the laundry. I hate missing time with my family and not pulling my weight.”

Worrying about the future

“…my issues come when I feel guilt about the future, I worry about my kids having to take care of a sick mother…”

Breaking plans

“When I feel the most guilty is when I’m having a good day and I promise to do something for someone, and the day comes and I can’t do it cause I’m too tired or my body hurts. That is when I feel the worst. You see, breaking a promise to myself doesn’t hurt as much as having to explain why I can’t do something I said I would.”

How members are managing:

Celebrating the small things

“I’m trying not to beat myself up now its to the point where I feel good if I can go down in the basement and carry clothes up or I feel good if I get a home cooked meal finished and remembered the veggies in the microwave sort of thing I am learning to let go of all the guilt and celebrate the things I can do its so much less tiring that way.”

Accepting your “new normal”

“I have accepted today that I have limits and I am not responsible for them.But I am responsible for looking after myself so that I don’t cause things to get worse and my limits smaller…Since I have stopped trying to act like I am normal and not sick, I am happier, relaxed and much easier to get along with than before.”

Taking action online

“My guilt is alleviated because there are so many things I can do online, from signing petitions to send to congress to helping tutor college students – use your computer to make yourself feel that you are still useful at something in life.”

Managing fatigue

Knowing how to manage fatigue can help too. Check out these tips from one woman living with MS and see how members of the community are treating fatigue.

Do you feel guilty about how fatigue and other symptoms of your MS impact your life? Join the PatientsLikeMe community and share how you cope.

 

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Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.