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…”
“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.”
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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