What do you want people to know about MS?

Living with a chronic condition like MS can be very difficult and frustrating.  Explaining to others what it’s like to endure life with MS can be even more frustrating.  Our community members have shared with us what they wish others knew and understood about MS.

Of the many symptoms that trouble those with MS, one of the most common that is misunderstood is fatigue.  MS-related fatigue is hard to understand, yet it is so important for family, friends and caregivers to comprehend.  All of us have experienced fatigue at one point or another, but MS-related fatigue is like no other.  MS fatigue is significantly different than fatigue experienced by those without MS and it is important to recognize the differences.

“MS related fatigue is not the same as being tired.”
“MS fatigue is not caused by losing out on sleep.”
“MS is exhausting and can cause extreme fatigue and horrific pain.”

MS fatigue is present no matter what. The simplest of tasks become incredibly difficult, and it takes so much energy to do things that others take for granted.

“Simple tasks like taking a drink or going to the bathroom are unbelievable difficult.”
“No amount of sleep or rest will help my fatigue.”
“It’s not like you are too exhausted to do something, it’s that you are too exhausted to do anything.”
“I’m not lazy, I just hurt and need to rest.”

Although fatigue is one of those invisible symptoms, it can significantly interfere with a person’s ability to function at home and work.  Our community members dealing with MS want others to know that fatigue is a real issue and it affects their daily life immensely.  MS-related fatigue can cause cognitive impairment, clumsiness, and poor balance.

“Fatigue is something I encounter at some point every day of my life.”
“My fatigue occurs on a daily basis.”
“Fatigue can come on suddenly, which means I have to cancel plans on short notice.”
“My fatigue comes on easily and suddenly and can worsen as the day progresses.”

Our community members shared with us that along with their fatigue, comes stress, anxiety and depression. The frustration can bring on anger and impatience.  It is so important for family and friends to understand where this is coming from.

“Pain makes tolerance hard.”
“I get so frustrated with myself and I get angry with others.”
“I have less patience for people and things.”
“I never used to be short on patience, but in recent years, my fuse has gotten very short.”
“At times, my anger can rise more quickly and there are fewer filters.”
“I snap at everyone but don’t mean to.”

Our community members also wanted others to know the true “invisibility” of MS.

“I may look fine on the outside, but I feel terrible on the inside.”
“MS makes you appear normal on the outside, but wreaks havoc on the inside.”
“Others can’t necessarily see our limits, as we see and feel them.”

It is also important for our family, friends and caregivers to know that MS is a constant battle.

“It’s on my mind always, even when I feel well.”
“MS is something you think about every day.”
“It’s unbelievably hard to live with-mentally, physically and emotionally.”
“This is not something I chose.”

Finally, our MS community members wanted others know that life is not easy and every day can be a different challenge!

“It’s a roller coaster…you have ups and you have downs, twists and turns, except it’s never fun.”
“No two people progress the same.”
“It can knock you off your feet at any time.”

One common theme that came up frequently from our community, and stands on it’s own as a constant reminder:

“It’s out of my control.”

 Educating the people in your life, though often challenging, can help you receive the empathy and understanding you so deserve.

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Fatigue and Insomnia – Community Feedback

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Fatigue is one of the most common symptoms among those with MS, but this fatigue is not the same as just being tired. And to make matters worse, it’s possible to be completely exhausted but unable to sleep. Our amazing contributor, Ashley Ringstaff, recently wrote an article called “Extremely Tired….but Can’t Sleep.” She says, “I can be completely exhausted where I can’t do a lot, I have no energy to even move all day, and when it’s finally time for bed, I will lay there hoping I will get some much needed sleep. But sometimes, that’s not the case.” As it turns out, many of our community members could relate to Ashley’s story. Here’s what they had to say:

I find that I’m always tired but have trouble sleeping at night

  • I need naps in the afternoon and then can’t fall asleep at night. I seem to wake up at 3:00am almost every night. I’m lucky if I sleep more than 4 hours at a time. It’s very frustrating, but at least I don’t have to get up for work.
  • This has been a new symptom for me in the last 12 months it is driving me crazy. I take trazadone for sleep, and it has worked for over 20 years but it doesn’t seem to work anymore. The summer also seems to make it worse. I am barely functioning during the day.
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 I haven’t slept more than a few hours a day for the past 6 months. I can feel the effect on my whole body.
  • MS has given me insomnia.
  • This happens to me all the time. I used to sleep 10 hours a night, anywhere, anytime! I miss that so much. But even getting some sleep now does not mean feeling rested.
  • This was me last night. I was tired but up until 5:00am, then slept until 9:30am. I’m exhausted but my body is ready to party.
  • 

‪This is me exactly! One reason I had to leave my job was because I was falling asleep around 3pm. At night my mind goes 100 miles per hour, so hard to shut it off but during the day I can’t remember what I was doing.
  • I’ve gone 7 days now with only 15 hours of sleep. In my opinion, this is this is the most irritating part of this disease.
  • People don’t believe me when I say how tired I am. They just don’t understand.

Even when I do sleep, I’m exhausted

  • I slept 10 hours last night and woke up exhausted. I spent the day riding around with a friend looking for yard sales. My body is so tired my legs don’t want to work now.
  • I think I sleep well for a while, and then I wake up. It takes hours for me to fall back to sleep, but I wake up every morning fatigued, and some mornings dizzy and disoriented.

I’ve found a few methods to help with my insomnia and fatigue

  • Meditating can help to “shut off” your brain when you’re trying to go to sleep.
  • I have tried multiple drugs, techniques, yoga, baths and meditation. I exercise frequently too, which helps when I am up for it.
  • I have had this on and off since being diagnosed in 2004. Some things that might help include taking a warm shower or bath a little before bed time or using a little lavender essential oil on your chest.
  • I only get about 5 hours a night if I’m lucky. I lay down at 11 30 but my brain won’t shut down. I read and listen to music to relax enough. Last night I had to take my lorazapam to finally fall asleep at 3am.
  • I’m lucky to get 5 hours of continuous sleep any night. I have done the sleep study. I lost significant weight some years ago, which resolved the sleep apnea. I take naps when the fatigue has taken its toll. I have accepted insomnia as my normal. I find it easier to work with it than to fight it. I do some of my best work at 0 Dark-Thirty AM.

What about you? Do you have trouble sleeping despite being tired? Share with us in the comments!

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Where Do I Fit This In?: How to Prioritize When You Have MS

Let’s face it, life is hectic. It can be messy and chaotic, and that could be just your morning. We live in a world that thrives on fast-paced routines and schedules, so people rarely have time to manage their day to day, let alone trying to manage a chronic illness like MS. Medication and symptom management play a significant role in the course of this disease, so it can be challenging to find time in the day to fit these tasks in along with life’s expectations in general. How does one try to find time to rest, or jot down questions to ask the doctor at the next visit, or to document a new symptom that has come on? There seems to be a limited amount of hours in the day to complete all of these demanding limitless activities.

Here are some tips on how to manage these tasks along with the day to day:

  • Make time to take breaks. When you have a chance to rest, do so, even if for just a few moments in the day. It may be what you need to give yourself a boost or to take the time to write down a question for the doctor.
  • Have someone else help you! It’s challenging for some people to ask for help, but if it allows time for you to take care of yourself, ask!
  • Use the MSAA’s mobile phone application My MS Manager to help keep track of your symptoms and medical records, as well as current MS related news.
  • Prioritize! Sometimes there just isn’t enough time in the day to complete all tasks, but your health should be a top priority. Make yourself a list of attainable tasks to perform in a day, and make sure health related tasks come first.

What are some ways you manage the day to day?

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