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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Self-Generosity

This post was originally published in December 2017.


At this time of year, life can get overwhelming. There are social, familial, and professional obligations that all demand our full attention. While these demands don’t go away, they do seem more urgent at the end of the calendar year.

It is easy to get caught up in these demands and struggle to prioritize them (and sometimes they don’t allow for reasonable prioritization). It leaves a person feeling frazzled, burnt out, and hating the holiday season.

That isn’t the case for everyone, but I am sure we’ve all had moments in life where we would like to skip straight to January 2nd and move on with our lives.

We’ve run into others who feel this way: try going into a mall around this time of year. I’ll just leave it at that.

Piling on top of the usual life demands are calls for generosity from various organizations at the end of the year. Commercials are filled with pathos-based appeals to get the viewer to donate to various causes. Religious leaders ask their people to open up their wallets and give money, toys, or time to those who are less fortunate. Stories of tragic events lead to calls for donations of food, items, and blood. Passive social pressures increase: social media pages are flooded with posts from others announcing their generosity.

It gets extremely overwhelming.

The issue is, that when we think about the term “generosity” we think about it as giving to others. But look at the definition of the word:

Generosity
nounplural generosities.

1. readiness or liberality in giving.
2. freedom from meanness or smallness of mind or character.

3. a generous act:
   We thanked him for his many generosities.

4. largeness or fullness; amplitude.

Dictionary.com

Nowhere in the definition does it specifically define generosity as an act we give to others. It is an act of giving and love, but with no defined recipient.

When we get caught up in the minutiae we completely forget about the importance of taking care of ourselves. We are told that we should be generous with our time and care for others, but it’s extremely hard to care about another person if we don’t take care of ourselves.

If we care for our own needs first we can be more effective for others. And when everything becomes too overwhelming, we might be able to see through it with less stress and frustration.

The Importance of Self-Care

I saw this quote posted on a friend’s Facebook wall and it was the foundation for this post. I kept the original formatting:

self care isn’t always lush bath bombs and $20 face masks. sometimes, it’s going to bed at 8pm or letting go of a bad friend. it’s forgiving yourself for not meeting your impossible standards & understanding u are worth it. self care isn’t always luxury, but a mean for survival

Cheerful Nihilism

Self-care quotes, personal revelations about self-care, articles expounding self-care all make the rounds on a fairly frequent basis. Some of them connect with us and others we either ignore or go, “yeah, if only it was that easy.”

All the wisdom in the world about self-care/self-generosity does not mean anything if it doesn’t connect with you. And let’s be blunt about the quotes/revelations/articles: they aren’t saying anything new. It’s all steeped in common sense.

We just need them to remind us every so often.

I am not an expert that can espouse pearls of wisdom of how to better take care of yourself, but I do recommend that you be more generous to yourself. Allow yourself to be more selfish.

But this isn’t the same when we think about being selfish. This is a loving selfishness.

Recognize that you need to take care of yourself before you can care for others. The Mayo Clinic recommends that caregivers take care of themselves first before they take care of others. They acknowledge that a person must be selfish if they are going to be an effective long-term caregiver.

Everyone is a caregiver. For some, it’s for another person; for everyone, it’s themselves. We all must care for ourselves.

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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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Featured photo credit: Michelle Melton Photography


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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Evicting Toxic Tenants, Part 2

This is part two of a two-part post about coping with toxic friendships. I previously discussed the formative relationship that led me to seek out toxic friendships, the anger connection that was the center of these friendships, how I chose to ignore the red flags, and my own toxic role in these friendships. What follows is a continuation of my self-reflection and how I’ve worked towards being healthier in my quest to remove toxic friendships out of my life. 

Read part one here


Preventing Healthy Relationships

By engaging in toxic relationships, I prevented myself from being receptive to healthy friendships. I do have healthy relationships, but the ratio of toxic relationships outweighed the healthy ones since childhood.

I am lucky to know people who want to establish a healthy relationship with me. Unfortunately, in the past, I haven’t done enough to nurture these friendships though I am trying to do more as I change my friendship patterns. I am not quite there yet, but I am hoping I can reach out and do a better job reciprocating once I’ve healed.

There are three main reasons why I stifled healthy relationships: one, the toxic ones took up more time and energy so I couldn’t think about fostering another friendship; two, I didn’t think I deserved healthy friendships because of my own low self-esteem; and three, I was so uncomfortable with the healthy dynamic that I did not know how to handle it.

I found myself suspicious of any healthy relationship. Clearly, the other person wants something out of me and I was unwilling to give it to them. Ironically, I was willing to give a toxic person everything and more, but when the relationship had an equal dynamic I didn’t know how to handle myself. I found myself freezing and not pursuing the friendship hoping it would go away.

Emotionally healthy people scared me for the longest time. I resented that they highlighted my own inadequacies because I never measured up in comparison. I wanted to be where they were without doing the emotional legwork.

I sabotaged healthy relationships throughout my life, which I deeply regret. I don’t know how many awesome friendships I’ve missed out on in favor of the toxic ones. I am very lucky for the healthy ones I have today, and I recognize how patient these friends are with me and how they pursued my friendship with no expectations.

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