A question for the Multiple Sclerosis Community

Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?

Answers from the Community

My condition leaves me very fatigued. I am tired throughout the day and heat and activity make it worse. So it’s hard to keep up with my toddler son. And my condition also leaves me with cognitive difficulties, finding words when I am speaking and also creating lists, organizing tasks. So that stuff takes me quite a bit longer than before I was diagnosed. I deal with it by spacing out strenuous activities, trying to plan ahead as much as I can of what my schedule will look like so that I know I don’t do too much one day. I rest when I need to, I create lots and lots of handwritten lists so that I remember what I’m trying to do. And for both issues of fatigue and cognitive difficulties, medical marijuana helps greatly with both energy and organization.

It’s frustrating not to have good balance and feel like I’m going to fall. So we have adjusted the furniture in the home so that there’s always either furniture or a wall to hang onto it, that I can’t fall, that there’s always something there. And when walking outside I use a walker or a cane if it’s short distances.

Frustrations and challenges I experience every day. I’m exhausted every day, even when I go to sleep early. And when I wake up, I’m exhausted. I have to work through the exhaustion. I will forget things. I have the pill bottle and pill thingy that I rely on to help me remember if I’ve taken my medicine or not. And I can’t ever get ahold of my neurologist. He’s a busy guy, so that doesn’t help. Yeah.

Multiple sclerosis has caused my daily living to be planned around the disease. If I have plans and I wake up not feeling well or if I’m fatigued, then I have to cancel. So what I do is I don’t make long term plans. We mostly stick to short term plans or if I do make longterm plans I prepare by resting in the days prior to.

My day to day life is at home because I am no longer able to work. So my daily activities involves a lot of resting. I have a lot of fatigue, pain, sleep issues, bowel, and bladder issues. The frustrations that I have are because of these things and I can’t do the things I would like to do. I can’t have a career. How I adjust is I really had to adjust my attitude, adjust my schedule, and accept that what I have is still good and make the best of what I have.

MS affects my wife’s day to day life very differently. Some days she can walk, some days she can’t. Some days her legs are just wobbly and shaky, she needs a cane. Some days she needs a walker, some days she needs a wheelchair. Every day is different. Some days her hands are shaky. Some days they shake so bad, she can barely feed herself, or I have to help spoon-feed her. It can be that bad. It all depends. And this is a very different up and down thing. Every day is a different symptom. So most days she just stays at home and stays in bed as much as possible. And that’s about it.

Day to day life challenges, frustrations. It’s hard to walk. Heat bothers me. I try to keep cool. I try to not overdo it. It’s hard sometimes. I try and be positive.

Well, I used to work full time. I used to be active. And since MS, I am tired, irritable, not as active, just down and out a lot. And I just try to smile and keep it moving because there’s worse things in life, and I’m still here and that’s all that matters.

Today’s challenges I have are walking and probably cleaning my house. It’s hard for me to walk for long distances or even a straight line. I ended up running into walls quite frequently, and it’s just really frustrating to me to see other people just running all over the place and I can barely even walk. Another thing is cleaning the house. It’s very hard for me to do and I get tired right away. So to adjust, I try and do one chore a day or on the weekends I’ll do the dishes and sit for two or three hours, then try and do another chore like dusting. But my house usually isn’t fully cleaned the way I’d like it to be because I get really tired and I can’t finish what I’m trying to do. Also, I work full time, so it’s hard for me to do anything afterwards because I’m so mentally exhausted from working all day. And that’s very frustrating to me. Also, I cannot do stairs easily and that is a really big thing. If I go to a sporting event and if there’s not a railing, there’s no way I can go up and down the stairs. That’s also frustrating. So I have to hold my husband’s arm or I just try and hold the railing, if there is one, really tightly, so I don’t fall. So those are a few of the things that frustrate me.

The biggest problems is the fatigue and the inability to walk some days and get out of bed. Apparently, the lack of motion some days and the overwhelming fatigue, and the only way really to overcome it is just stay in bed or change our plans. My family goes on vacation without me because it’s just too hot and I just can’t do it.

Well, I was diagnosed with multiple sclerosis in 2012, and my most challenging thing with it is fatigue, and being a single mom with child is very difficult because my child always wants to go, go, go. Go places, go here, go there, do this, play games, and it’s frustrating because he doesn’t understand that I’m tired. I don’t have the energy and I can’t do it all the time. Mommy needs to rest.

It literally affects every part of life. You’ve got more doctor’s appointments, things that you don’t understand about the disease that now you’re having to learn about to make adjustments. It’s just a big change for everyone. I think the main frustration comes from not being able to help as much as I want to help, whether it’s the anger and the guilt, but in general, just sometimes the person doesn’t want help.

I struggle with extreme fatigue and just having unknown changes that occur. And I’ve learned to just adjust my life around the MS.

The frustration that I experienced is just to deal with a normal day of getting up and trying to go to work. It’s very frustrating because I am literally drained when I wake up in the morning because of the fatigue because I didn’t get to sleep the night before, because I’m in pain, or I’m just restless because my mind did not shut down that night, or just in pain. Then trying to get up and take a shower, it drains me. Then I have to wake up an hour earlier because if I don’t when I get out of the shower, I’m drained. I can’t get up. I can’t move. Just have to lay down to get my stuff together to be able to get up to do anything. I just, my coping, when I get to work, people just, I ain’t going to say look at you strange. They always trying to help you, and that’s frustrating because I’m an independent person and I want to do things on my own. I just want people to leave me alone, to let me do it on my own, how I can do it. That frustrates me. And then at the same time, when people always telling you how they can do it, or the way they can help you do it, or the way somebody else they know know how to do it. But I cope with it by asking God to give me strength to deal with it and just take it one day at a time, to take a deep breath. And like I said, just ask God to help me.

My MS affects my day-to-day life moderately. I am fatigued all the time. I have a lot of weakness in my arms and my legs. I cannot handle the heat at all. So basically what I’ve been trying to do is to stay cool, try to do anything in the morning and in the evening and I try to get into the pool to cool down my core and I’m trying to not watch a lot of news to keep my mind in a better place and to keep depression at bay. The MS has created a lot of depression for me to deal with and I am on antidepressants and I also get therapy about once a month.