dealing-with-ms-fatigue

When MS Fatigue Strikes

I never realized it, but I was dealing with MS fatigue for a long time prior to my diagnosis. I always thought the fatigue had to do with my depression, which may have been MS related, but I had no reason to look into the fatigue. Once I resolved or managed my depression, the fatigue would go away. I wasn’t sure how I would manage my depression, but it was in the back of my mind “to do.”

The last time I felt energetic, truly energetic and what I imagine it feels like for everyone else, was when I was a teenager.

Every day can be a struggle for me to get things done. It’s something I’ve talked about a lot on the blog, especially the feelings of frustration I get from not being able to get everything done. I have learned to adapt around the fatigue, but the unpredictability surrounding it and what affects it is still a learning curve.

I think I will constantly be working through the frustration the fatigue causes.

What is MS Fatigue?

MS fatigue, or lassitude, is something that happens every day for the majority of people with MS. This fatigue can vary day-to-day and person to person. At this point in time, researchers do not know what causes fatigue, just that it is something that happens more with people with MS (up to 80%).

My completely uneducated, unqualified guess is that it probably has something to do with how the lesions affect our body or the fact that our immune system is constantly in overdrive and attacking itself. Like how we feel when dealing with a cold, the fatigue is our body’s response to the attack.

Fatigue can so negatively impact a person with MS that it may be used as a reason for why a person leaves the workforce early. I know that it made going to a physical job more difficult, one day I had to lie down on my office floor for a nap because I was so exhausted from teaching. I was able to work, but by the end of the day, I was completely worn out because I couldn’t get any naps or periods of rest during the day.

For me, I have my most amount of energy in the morning (with or without a good night’s sleep) and slowly lose energy as the day progresses. By mid-afternoon, I am desperate for a nap and will have a minor surge in energy afterward for an hour or two, but there is no guarantee of that second wind.

Fatigue as a Background Feeling

I have found that the fatigue surrounds me so much that it has become a background feeling for me. There is a level of itchy-comfort that surrounds me every day. I know this is an oxy-moron, but what it means is that I have that weird cozy feeling all day that you get when you are just tired enough. It’s that warm feeling you get where you are just drowsy.

But it’s itchy and uncomfortable because it’s really hard to snap out of it, which is frustrating. My body wants to stay in bed and sleep all day, but my mind is “we have to move and get work done!”

I have learned to push the fatigue to the background for most of the day, working through it, but I know that it makes me cranky at times. That’s where self-compassion comes in, but also where goal-setting helps as well. I think my running training has helped a lot. Besides giving me some extra energy that comes naturally from exercise, it sets a blueprint for goal acheivement throughout the day.

Running creates this blueprint: I need to run to the next telephone pole and then I can walk for a few seconds. When I am so worn out from running a long race, I sometimes have to create these small goals to keep pushing myself towards my personal race goals. In my daily life, it is very similar: I say “I need to complete this task and then I can rest for a few minutes.” When I feel my fatigue winning, I remember that if I can push through it with running so can I push through it in my daily tasks.

Bad Fatigue Days

Bad fatigue days are some of the worst days and moments for me.

I may have a bunch of things on my “to do” list and I will not get more than one thing done on that list. And that feeling of unproductivity can be extremely frustrating and discouraging for someone who likes to get a lot done in the day.

If I do too much the day/night before, I can be wiped out the next day making getting out of bed near impossible. When this happens, I find that I am cranky for much of the day. Unfortunately, because of the nature of the fatigue, no amount of sleep helps revive me. I could sleep over 8 hours the night before, get 4 to 6 hours of naptime and still be able to go to bed early for another full night’s sleep with no relief from the fatigue.

On these days, I feel that my depression hits harder because I am so tired and frustrated with my body.

I get frustrated when dealing with exacerbations, but I find that I am less frustrated with an exacerbation than I am with the fatigue. An exacerbation can be managed with medication, my fatigue rarely can. I’ve tried several different medications meant to give me a boost in energy, but I find they don’t make a dent or make me more drowsy.

Fatigue’s Impact on Emotions

While I might take medication, drink copious amounts of caffeine, run a mile or two in the morning, drink a bunch of water, or just rest in order to raise my energy levels, I find that I get no real relief from my MS fatigue.

The lack of relief or lasting energy boosts is so frustrating and wearing that I think fatigue has the most negative impact on my emotions regarding my MS.

I really wish that I can get more things done during the day. I wish I could have all the energy in the world to do a bunch of things with Jai. I wish I could take a couple extra hours every day to work on my blog and do my daily tasks.

All of these desires lead to my feeling of helplessness and personal frustration towards myself and my MS. Any negative feelings I have towards myself stem from my complete lack of control over being able to get things done in the amount of time I want. I might plan to spend the whole weekend getting caught up on a project and then find both days are spent in bed because I can’t summon enough energy.

With these negative feelings, I have learned to embrace self-compassion as a way to manage them. I recognize that until they come up with a perfect drug to deal with MS fatigue, this is something completely out of my control. I cannot change something out of my control, so stressing over it will achieve nothing, therefore I have to be softer with myself.

On Friday I will be discussing more indepth how I deal with my MS Fatigue in my newsletter post. If you want to read more about my personal solutions to this common MS problem, please sign up for the newsletter here.


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Featured photo credit: Michelle Melton

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The Importance of Movement

It’s fall, which means colder weather makes it difficult to get moving to either exercise outside or make it to the gym. Perhaps because of the season, it is more important than ever to keep moving. As we head into winter, chances of weight gain increase along with seasonal mood changes that might be mitigated with some form of exercise.

Yesterday, researchers released a study regarding the importance of exercise and health. It’s something I’ve known a long time from health class and personal experience: exercising makes me feel better. If I sit still long enough (even in the span of a few hours), I start feeling bad.

That was the point of this study: the longer we sit during the day, the more danger we put on our health in the long-term. Sitting for vast spans of time and maintaining a sedentary lifestyle is worse than smoking. This study wasn’t providing new information, this article from 2014 discusses how dangerous sitting for hours on end is for our bodies. But this study was another confirmation of what researchers were saying: movement is important for maintaining a healthy lifestyle.

While the studies weren’t talking about the emotional impact of a sedentary lifestyle, more of the long-term impact, aerobic exercise is a form of anti-depressant for those suffering from major depression. A person should never quit their drug-regimen in favor of running without consulting their healthcare professionals first, but adding running or some other high-aerobic workout to the routine might increase the anti-depressant impact for mental health management.

This information is great to have to make informed decisions without an autoimmune disease that impacts fatigue levels, but living with MS, getting out of bed can be a hardship some mornings.

What to do when your body works against you?

I count myself lucky with my MS: my disease is rather benign and easy to manage compared to someone with PPMS, SPMS, or even some versions of RRMS. But it can cause my mood to swing, my depression to kick into high gear, and send my fatigue into overdrive for no reason other than “just because.”

Getting out of bed to go for a run some mornings is particularly rough when my body just does not want to move. Additionally, I’ve suffered from being overweight and depressed, so I understand how each individual factor can impact personal motivation and ability.

So what can you do?

  1. Speak with a trusted healthcare professional about what you can do to increase movement in relation to your particular health concerns or limitations. You want to find an expert who will be sensitive to your situation to provide positive encouragement, but also one who will point you in an appropriate direction for the types of exercises needed to get you started.
  2. Even if your doctor is providing you with generic information, use that information as a starting point with your own research.* Find simple exercises you can do from bed or the couch while watching television. From there, you can build up your type of exercise and the amount of time spent.
  3. Drink water. Water helps energize muscles to help prevent fatigue, protect joints and the nervous system (a huge plus for MS), and decrease MS symptoms.
  4. Keep your goals reachable and manageable. If you know that getting out of bed will be difficult most mornings, see about adding a different type of exercise that can be done from bed until you have a good day.
  5. If you have to miss a day or forget, just plan to restart tomorrow. Don’t look at a day off as a failure, but just something that happens. Try to maintain an attitude of moving forward rather than dwelling on forgetfulness. Don’t overdo it if you do miss a day – with MS that can set you back from exercising tomorrow.

*Note: your own research must be done with extreme caution and consideration to your ability levels. Do not put yourself at risk.  Read my disclaimer about health advice here.

Lack of Motivation

I find that the lack of motivation is my biggest obstacle to exercising. I wish I could write, “do this and you’ll always be motivated!” but the truth of the motivation obstacle is this: it varies from person-to-person and moment-to-moment. What keeps me motivated may not apply to another person and what keeps them motivated would never work for me.

When dealing with a chronic illness, motivation can run thin, sometimes without being the individual’s fault, but because of the way the illness impacts brain function. Having physical impairments stacked against you can be depressing on its own.

So how to combat this?

It’s never going to be a “snap your fingers and get over it” solution. That is not possible and won’t work. Rather, figure out what is important to you at the moment. Is it disease management? Depression management? Having more energy day-to-day? Wanting to see the numbers go down on the scale? Figuring out that primary starting place may be enough to get the ball rolling and sometimes that’s all it takes.

Having reports released about the importance of exercise are validating for me on my health journey because it shows that I am on the right path, especially on days when my energy and motivation are at its lowest. I just have to move forward and try not to be discouraged by a bad day or my MS.

What prevents you from exercising? What keeps you motivated to exercise? Relate your stories below in the comments section.


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Creating a Productive Schedule

Next to maintaining a clean house, having a daily personal schedule helps keep everything running smoothly because I love efficiency.

Ash will tell you that I get annoyed in the store if other customers navigate the aisles inefficiently and interfere with my shopping experience. Likewise, when I feel inefficient in my day-to-day routine, I get frustrated with myself. I am constantly trying to figure out the best way to manage my schedule in order to get the most efficiency and productivity within my day.

Having a toddler makes this doubly difficult because I have to be mindful of his needs and flexible to his own schedule. If he refuses to eat a meal when it’s time to eat, that can throw the day off because I will have to make sure he’s fed when he’s ready an hour later.

MS & Scheduling

With MS and any chronic illness that has some sort of energy or movement inhibitor, there are a limited amount of hours each day a person has to get things done. Those hours aren’t guaranteed because of the nature of the illness, therefore you have to account for the possibility of spending the day in bed and being okay with that scenario.

I’ve mentioned how important scheduling can be when dealing with children and MS. The key is to be mindful of when I have the most natural energy (un-caffeinated and no early morning exercise), what I want to get done during that period, and how I want to get it done.

My reasoning for this mindfulness:

  1. Knowing my daily natural energy peaks provides a baseline for the most I can expect to get done without any “outside” help. Drinking my morning cup of coffee or going for an early morning run/yoga session give me energy boosts that may not be there every day. If I set my daily goals based on my natural energy when I have days with an energy boost, I feel more productive which might help me get even more done.
  2. MS has forced me to prioritize my life where I have to set 3 major goals for the day during my high-energy periods. The first item is the most important where the third can be pushed back to tomorrow’s top item. Anything on my list that I complete beyond that helps feed the productivity ego boost.
  3. Figuring out how I am going to get something done is equally important. With my MS and a child, simply stating I will sit down and write a bunch of emails doesn’t cut it. I have to squeeze communications in while Jai is asleep or decide to multi-task laundry while I clean the kitchen during nap time.

Additionally, being mindful of my energy valleys is important. I know that around noon I start to get fatigued and after Jai eats lunch I am ready to lay down for a nap or rest between 2 – 4pm. On days where I am out of the house or so busy with a project that I miss my rest means that Ash has to take over parenting as soon as he gets home from work until it’s time to put Jai to bed.

I try to not overdo it, but I do find that because of the unpredictability of MS, it’s like a light switch. I will be fine, fine, fine, and then something flips and I am immediately exhausted with no warning. I try to be aware of any warning signs so I can rest before I overdo it, but most days I am too busy to pay attention.

I am still not sure if I have any warning signs.

Below are my tips for how I create an effective schedule that works with my MS:

  • Take a week or two to track your natural schedule. This will include your energy peaks and valleys, what you do when, and how you feel when you do it. Try to be mindful of whether or not you take an energy boost and how that affects your energy (medication, coffee, exercise, etc.).
  • Analyze your schedule and see if you can find a pattern. This is difficult with MS because each day can be completely different, but you might be able to see that around 10 am you have more energy than you do at 2pm.
  • Try to adjust your new schedule to reflect these high energy periods and schedule a rest during the low energy ones. Prioritize the more important items/appointments during a peak period of your day and not stress if the less important stuff doesn’t get accomplished until tomorrow.
    • If you work outside the home, napping at your work may not be a possibility, but finding a quiet space where you can sit with your eyes closed and undisturbed for 10 minutes might be something you can fit in. Scheduling meetings and important projects doing your high-energy periods work as well.
  • Embrace the productivity energy boosts when you get them. I find it invigorating when checking items off my to-do list. Those little boosts can be so energizing that it feeds into itself to get more done. Just be mindful to not overdo it and wear yourself out.

I think these tips are helpful for people without MS or an illness that interferes with energy levels, but it wouldn’t be my go-to set of suggestions for them. What follows are some broader observations/techniques that have helped me boost my productivity.

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Purging Clutter

The hardest part of any clean: the purging of clutter.

So many things turn into clutter, even things that you wouldn’t normally consider: sentimental items, books, or stuffed animals. It’s like the gardener’s philosophy surrounding weeds: it’s only a weed if you consider it one or it chokes out other plants. It’s only cluttered if it gets in the way and you don’t want it.

The Difficulty with Purging Items

Why purge items? Besides the obvious answer: purging items helps clear out mental clutter as well. I find that I am so much happier when I have a cleaner space, free of unnecessary papers and items.

The issue is deciding what to get rid of and what to keep/store.

I have a slight attachment to items that have a perceived sentimental value. I have three bottles of wine I still haven’t opened that I bought just after I moved South 10 years ago. I have two bottles of wine I bought 6 years ago when I visited my hometown in New England. I just can’t bring myself to open these bottles because of what they represent: the beginning of a new journey and goodbye to an old one.

But they are taking up space and at this point, if they aren’t vinegar, I can’t imagine they will taste good. We aren’t talking about quality bottles of wine.

I am not ready to make a decision about these bottles because they aren’t taking up enough space to be troublesome. Should I need to make space, then I will have to consider drinking them or dumping the contents and repurposing the bottles if I need that sentimental reminder.

But I have plenty of other items in the house that needs to be purged: clothing, toys, books, memorabilia to name a few.

Before Jai was born I went through a massive purge throughout the house in order to make room for his stuff. I knew it would be the first of several, so it felt good to watch the trash bags pile up on the curb for collection and Ash leaving with a car filled with donation boxes. I hoped to do my second purge in the spring after Jai was born, but I wasn’t able to get to it.

Now that he’s almost two, it’s time to consider making another massive purge, which should be easier to do because I already did one round. This time I will have to get rid of Jai’s old clothing, toys, and utility items that he no longer needs. I have everything mostly organized so that part should be easy, but deciding which toys should go will be difficult. That’s where having a system helps me make the more difficult decisions.

Creating a Simple System

When I am setting out to do a mini-purge I unceremoniously create three different vessels to hold my items: a garbage bag for items to be tossed, a random box for items to be donated, and a catch-all area for items to be stored or put away. When I am more organized, like when I was pregnant, I create bins to put each of these items so Ash can pick through them to see if I correctly categorized his stuff that might be mixed in.

I find big, clear, plastic totes work best. Their size helps hold more stuff, but easy to pick through and move from room-to-room if need be. Additionally, they are great to be repurposed as storage containers for the items being stored. I label each bin:

  1. To Keep and Store/put away
  2. To Donate
  3. To Trash/Recycle

Scheduling purges in small doses help keep me focused, just like my massive cleaning sessions.  I try not to spend more than 10 seconds on each item. If I am not sure in that moment I will set it aside and move on. If I find another item that is similar and I am able to make a quick decision about it (usually toss/donate) then I will return to that previous item set aside and make a similar decision. The goal is to have less “unsure” items at the end of each session than before I started.

My Favorite Tips

These are some of my favorite tips for working through a successful clutter purge:

  • I spend no more than 10 seconds on each item to decide whether I want to keep, donate or trash it. Some stuff is easy, for the more difficult items I will set aside to decide later.
  • If I am struggling to decide on a sentimental item at the end of my session, I will put it in a fourth box: this box is meant to be placed in an unobtrusive spot for 6 months. If I don’t reach in the box for the item in those 6 months, nor do I think about it, then I can seriously consider getting rid of it. I take a picture if it’s really important so I can have that instead of the physical object.
  • If an item has utility value, I ask if I will need it within the next 3 months. If no, then I donate/toss the item, otherwise, I store the item until I need it.
  • If I have multiples of an item and I only need one, I will keep the “nicer” version which is usually the newer version or I organize the items so I use the old stuff first. If an item is unopened, but I know Ash or my parents can use it, I give them the option to take it otherwise it gets donated.
  • Getting rid of important paperwork: I purchase a “year” box from a popular store that sells containers and organizing helpers. This box has the current year marked all over it, so I know what year the items were put into it. I write this note on top of it: “important paperwork to be destroyed December 31, (year).” The year is always 3 years from the current year (i.e. if the box says 2018, I am going to destroy the box contents in 2021).
  • I try to remember that we have the internet, so if I do get rid of something and I regret it, I have the means to find it again from someone. This is particularly helpful with books, especially cookbooks. My next purge will probably include all my cookbooks because I rarely crack those open anymore (though I will save my novelty cookbooks). I find that I search online for all my recipes because it’s more convenient for me.

What are some of the ways you purge your unwanted items, especially when you have something it’s hard to get rid of? Comment with your tips and stories regarding how your item purge sessions go below.


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Keeping a Clean Living Space

I have a love-hate relationship with cleanliness.

I love to be clean and organized, but I hate the work that goes into it. Having a toddler makes cleaning and staying clean Sisyphean at best. Nothing stays clean for more than ten minutes at a time with a human tornado.

This gets discouraging very quickly. Why bother keeping clean and organized if it’s only going to become a mess immediately?

It’s hard for me to get organized and easy to allow clutter to take over. I am ashamed to admit that it took until June to finally put all the holiday decorations away. They were removed from the main areas of the house but sat waiting to make it inside the storage closet we have in our room. Ash and I had to move around the boxes and clutter that kept piling up on a nightly basis as we got ready for bed.

For that, I hated spending time in our bedroom.

It took so long because it required a cleaning and reorganizing of our storage closet. We’ve accumulated a lot of old baby and maternity items that we’re not ready to part with just yet, so there wasn’t any room to put holiday decorations back inside.

This required an organization session, cleaning, and purging a lot of items. Making the time to do this is difficult with the fatigue and have limited energy stores day-to-day. Because a cleaning session wasn’t important in my mind, it kept getting pushed back in favor of working on other projects.

But that doesn’t mean the cluttered chaos didn’t cause issues.

Benefits to Clean House

Over the years I’ve recognized the benefits of having an organized house without a child: it’s a way to find things easily, everything has its place, and generally makes life easier.

I am also one of those people who gets depressed if my living space is messy. I am not just talking super messy but depression starts to set in even if there’s a little bit of clutter. So when the house “gets out of control,” I tend to freeze and get frustrated.

I am, by no means, obsessive over the cleanliness. When I can’t even get myself to spend 15 minutes tidying up because of either fatigue or feeling overwhelmed I feel frustrated.

There’s a lot of research available online that shows there’s a connection between healthy living, healthy habits, and healthy decisions and a clean/organized home. So my reaction isn’t surprising.

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