2 posts tagged “living with fatigue”

Managing MS fatigue & guilt

Posted 4 months ago 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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Someone Like Me

Posted May 25th, 2012 by

We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties.  Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.

I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.

MS Patient and Guest Author Jasmine (Jazz1982)

At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.

I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor:  we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?

The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.

The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!

I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.

We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?'” Simple, tried and tested on many a person, and I would highly recommend you try it as well.

So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!

These words are dedicated to Lena, thank you!

A big thanks to Jasmine for sharing her poignant revelation with all of us.  Stay tuned for more guest posts by our amazing patients!