11 posts tagged “MS community”

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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“Not in this fight alone.” An interview with multiple sclerosis patient Monica

Posted May 16th, 2013 by

Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others.

Monica

When were you diagnosed with MS and what changes did you have to make in your daily life?
I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis.

I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After finding out, I researched MS along with continuing my job search. After discharge, I noticed how much information was available online dealing with MS and it overtook my job searching.

After you decided to stop working, what challenges did you face continuing your healthcare coverage?
I did not decide to stop working until 2 years after the diagnosis. I decided to get approved for disability through the Social Security Administration prior to leaving the workforce. My neurologist was my number one advocate. Once I applied and the process started, I got approved in 82 days. To me, that seemed like confirmation that I made the right decision. Although I didn’t have long to wait to be approved, it did not make it better for me to accept that Medicare would be my healthcare coverage from age 35 on out. The system was not created to care for 35 year olds and I knew there would be challenges. And boy was that a TRUE thought.

How has an online community like PatientsLikeMe helped you along the way?
PatientsLikeMe has helped me tremendously. When I was diagnosed, the MS community was much smaller than it is today. The forums always seem to really help me. If I have a question, it most likely has already been asked on PatientsLikeMe. I can truly say when I decided to change my disease-modifying drug, there was a whole forum talking about the drug and it really convinced me.

What is one thing you think every MS patients should know?
MS patients must realize that they are not in this fight alone. Besides predominate non-profit organizations dedicated to MS (National Multiple Sclerosis Society, Multiple Sclerosis Foundation, and Multiple Sclerosis Association) there are so many self-help groups that help with things. PatientsLikeMe gives us a voice that can help us to face our problems. PatientsLikeMe makes us feel that we are being heard. I truly appreciate the moderators of the forums and PatientsLikeMe as a whole.