In the early days after diagnosis, MS triggers are often a mystery. However, many find that the more time they have lived with MS, the more they know exactly what makes their symptoms worse.
Dreams are a wildcard—whether you are living with MS or not. For some, dreams are an escape from the physical limitations of life with multiple sclerosis. Others experience something different when they go to bed. Good or bad, the dreams and nightmares tend to have one thing in common: They are extremely vivid.
To find out more about these experiences, we reached out Continue reading
By Scott Cremeans
I slept horribly the other night and decided to sleep in because a tired brain is a dysfunctional brain. I had nothing planned that next day to wake up early for and realized that this would be a great day to be lazy. I am not sure what caused my unrest though I lay all night with busy mind syndrome. Sadly the chaos that was to ensue would not allow the extra slumber that I so wanted. This terrible technological turmoil would not allow the excess rest to calm my brain that I desperately desired. Continue reading
We’ve talked about different aspects of wellness here on the MS Conversations blog in the past, and this month as we’ve covered topics related to depression we also wanted to touch on factors of physical wellness too, because all of the elements of wellness can intertwine and are equally important. Living with a chronic illness like MS can make it difficult at times to have control over one’s physical health because of how unpredictable and unknowing the disease course can be. However, there are pieces of physical wellness that a person can try to maintain influence over, even though MS may have other plans in mind.
Daily habits and behaviors can have great influence over one’s physical health and can include things like diet, exercise and sleep practices. With a disease like MS that can affect physical body function, maintaining consistent sleep or exercise routines can be challenging at times. It’s in these cases where people may need to get a little creative and modify/adjust practices to make things work for them. Working with healthcare professionals on symptom management strategies can help with this. Applying good habits to daily routines may improve physical health needs, especially with sleep practices. And though at this time there is no one specific diet known to influence MS and they continue to research this, maintaining healthy eating habits and a well-balanced diet can have positive effects on one’s physical nutrition. Each person is unique and what works for one’s physical health may not for another, so it’s important to evaluate behaviors and choices that can apply to your situation and what your needs are.
Another part of this physical piece includes maintenance and follow-ups when it comes to one’s care. I don’t know anyone who necessarily “enjoys” going to the doctor or hospital, but it’s one of those things that has to be done sometimes. Making sure to see your doctor regularly, notifying them if you’re having an issue or experiencing changes in symptoms are all good habits to try to enforce when it comes to your health. It’s not always an enjoyable experience having to go to the doctor or having medical tests/procedures done, but it’s a way to ensure that you’re doing all you can to keep your care in check and to maintain control over this aspect of your health. There are even tools and resources to help keep communication flowing between you and your medical team for your physical care needs. Though physicality is merely one aspect of the entire wellness sphere, it remains a vital part that contributes to all of the other elements of wellness and to one’s overall care.
By Lauren Kovacs
I can’t stress this enough. Fatigue is a relentless beast. If we want to be as well as we can, sleeping helps. From marathon naps to a wee kitty snooze, it is a must. Some days more than one is needed.
Don’t resist the craving to sleep. Cave in and watch the back of your eyelids. Mid-day naps work for me. Even my dog knows when it is my naptime. In this sense resistance is not good. Don’t fight sleep.
I sleep with the phone and I only answer it if it is my kids’ schools. Most people, with two brain cells to rub together, know I am out of order during naptime. I have “out of area” numbers blocked by my phone company and if something gets through, I turn it on and off to get it to stop ringing.
Blocking out light and sounds help me too. I have a hard time with glare and sleeping in sunglasses is uncomfortable. I put something over my eyes. Eyelids are not enough and fabric blocks it out.
A few drops of lavender oil on my sheets can be relaxing. I also have a hard time clearing my mind. Boy Scouts, soccer, Taekwondo and many other scenes in life are doing the Tango in my brain all night. I draw the curtain on that sleep-sucking dance by reading. A few pages of fiction turn the pages of life.
Listen to your body. It whispers wellness secrets. If you are too hot, your body tells you. If you need to sleep your body will tell you. LISTEN. If your body says it needs chocolate… Listen to it!
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.
- 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!
Stress is something that everyone confronts in their lives. Stress broadly falls into two categories – external stressors where another person or entity is pushing you harder and asking for more, more, more (more of your time, more of energy both physical and mental, and more than you can handle). I think everyone is familiar with the external stressors- a school deadline, a boss that keeps piling more on your plate, appointments and activities you need to get to…these can all add external stress.
The other lesser acknowledged form of stress stems from internal pressures. Internal stress arises when you place restrictions, parameters, and deadlines on yourself, where you strive harder and work longer and try to be “perfect” or to be everything you think you can and should be for everyone and more.
I’ll give you an example. The schedule says you work from 8-5 and get an hour for lunch, that is the schedule you are paid for BUT the phone is ringing, and a new project is assigned, and the work is piling up (external stressors) so your internal response is to come in a little early and only take 20 minutes for your lunch breaks and maybe on some days you stay a little later too. Before you know it you are working 5-10 additional hours each week. Sure you are getting the work done but you aren’t being compensated extra, and everyone else is taking their lunch breaks.
Sometimes people use internal stressors because they are motivated by something specific (i.e. if my boss sees me accomplishing so much maybe I can earn the promotion, and some day make it to the corner office) or maybe you love your job and are motivated by what you think you can accomplish (i.e. I’m saving the world one day and one life at a time, GO ME!) but whatever the reason at some point those additional self-imposed stressors will catch up to you. And frankly at the end of the day while your boss might acknowledge all of your hard work it is just as likely that they will raise their expectations of you, so that without a big promotion you are stuck doing all the extra work and if you try to cut back on the “extras” your boss may wonder why you can’t accomplish what you used to!
These internal stressors don’t just apply to the workplace, they may cause anxiety over what you need to do-“I’ve got to clean the house before Janice comes over to visit, but when will I have the time and energy.” If Janice is truly a friend she will understand that life got in the way and that your house can’t always be impeccable. Don’t worry, Janice already knows that you are human.
You may be asking why is it important to acknowledge when a stressor is internal or self-imposed and try to reduce those actions or thought patterns. Stress is well known to impact health. Stress has been attributed to developing or exacerbating changes in mood such as increasing worry/anxiety, but stress has also been linked to physical health including affects to sleep, cognition, and increasing levels of burnout/fatigue. On the more severe end of the spectrum, stress has been linked to heart attacks, ulcers, and has also been correlated with MS Relapses among other health issues. So, while you may not be able to stop your boss from dumping 500 projects on your desk or keep your house in a perpetually spotless state, you can put in place an internal protection system: Remind yourself that there will always be work for tomorrow no matter how much work you do today, and that friends, family, and neighbors don’t expect you to be “perfect.” Finally, let yourself know that it is okay to ask for help when you need it. Don’t be your own worst enemy, prioritize your health and try your best to stop or reduce that internal voice saying and, AND, AND.