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-Compassion and Chronic Illness

I’ve spoken about self-compassion on the MS Mommy Blog before and what a positive impact it’s had for me as a personal coping tool. When I first read Dr. Kristen Neff’s book, Self- Compassion, I fell in love with the concept as a life philosophy. I recognized that self-compassion and chronic illness go hand-in-hand, and should be recommended by our healthcare professionals as part of our disease management regimen. It’s easy for us to get self-critical when trying to manage our illness that we don’t remember that part of our care should be loving ourselves no matter how “broken” we might feel.

What is Self-Compassion?

Self-compassion is exactly what it sounds like: taking compassion (i.e. understanding and empathy) and turning it inward. Practicing compassion for ourselves is the first step of successfully being compassionate towards others. If we can love and care for ourselves, we are able to extend that love to others in our life.

Self-compassion is about forgiving ourselves even when we don’t need to: sometimes we take on responsibilities when it’s not warranted. I know I’ve mentally beat myself up over perceived missteps and learned to “forgive” myself so I could move forward mentally and emotionally.

As humans, we suffer. It might as well be the third absolute truth of life: death, taxes, and suffering.

So when we engage in compassion, we are recognizing the suffering and do what we can to help mitigate it for others. Sometimes helping others who are suffering dampens our own suffering, but the caretaker tends to be the one in most need of care.

Treat Ourselves as We’d Treat Others

There’s the golden rule we’re taught as children: treat others as you would want them to treat us. I think we forget that if we don’t’ treat ourselves well, how can we expect others to treat us well?

I know that if I don’t think very highly of myself, I  prone to let others take advantage and bully me. I feel like I deserve it, even if it makes me angry and I lash out in response. Once I began to say to myself: “no, I don’t deserve this treatment,” I found that the negative relationships went away.

And I felt better about myself for it.

Meaningful life changes come when we acknowledge our own importance in the world, something that is hard to do if we’re conditioned to feel unimportant. When we treat ourselves well,  we’ll be able to treat others well.

Tell yourself that you are worthy of your love and see how that alters your perspective.

Self-Compassion and Chronic Illness

So what does self-compassion have to do with chronic illness?

As I’ve previously mentioned in the blog, it’s easy to beat ourselves up and feel massive amounts of disappointment over something we cannot control: our health. Refocusing our anger and frustration to loving and caring for ourselves when we cannot control the situation is a better use of our emotional energy.

If your chronic illness is like mine, undue emotional stress, especially when controllable, leads to attacks. Rather than engaging in the behaviors that put me at risk for an attack, I reject the desire to blame myself and choose to love myself is a means of managing my disease.

An Invaluable Tool for Life

If you don’t have a chronic illness impacting your day-to-day life, engaging in self-compassion is a wonderful way to healthfully handle all that life throws at you. I have found that it’s a tool I wish I used more prior to my diagnosis. My overall satisfaction level with my life is up, which is something I could not say seven years ago.

Looking forward this month, the blog will discuss more in-depth the importance of self-compassion, ways to remember to use it, and reviewing the book Dr. Kristen Neff’s book that started me on this journey.

If you haven’t already, please sign up for the weekly newsletter so you don’t miss Friday’s posts and free materials to help you along your wellness journey this year.


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Featured photo credit: Priscilla Du Preez on Unsplash


Setting Attainable Personal Goals

Setting Attainable Personal Goals

A few months back I was looking for an effective way to create a one-year and a five-year plan for myself as a means to set attainable personal goals.

I was tired of coming up with the idea of doing something with no actionable plan to achieve it. I would say to myself, “I want to achieve x,y, z,” but had no plan of action. Many meaningful life goals require more thought and attention to details than simply naming them.

It was at this point I did some research and found a system that helped me better organize my thoughts, create a plan of action and feel like I could attain my personal goals.

Setting SMART Goals

Want to feel smart? Try setting S.M.A.R.T. goals.

S.M.A.R.T. is a mnemonic device for “Specific, Measurable, Achievable, Relevant, and Timely.” Created back in the early-80’s by George Doran, Arthur Miller, and James Cunningham, S.M.A.R.T.  goal creation started off as a business tool that worked its way into personal usage over the years.

Each word acts as a writing prompt, a means to get you thinking about each aspect of the overall goal. When it comes time to figure out these five elements to your overall goal, you answer the question each word presents. The question might look something like this:

  • Specific: can you be clear & exact about your goal?
  • Measurable: how can you quantifiably assess your progress within your goal?
  • Achievable: how realistic is this goal and is it attainable?
  • Relevant: do you have other goals and how does this goal relate to them? How well does this goal relate to your current needs/desires?
  • Timely: what timeline do you see yourself achieving this goal?

For a really clear explanation for each word, Mind Tools has a fantastic page breaking each word down with clear examples to get you started.

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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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Civic Duty

For the month of November, I am taking each day to highlight some element in my life that I want to express my gratitude about. This could be something deeply personal or just a passing appreciation for something more superficial. 


Today, in the United States, is the mid-term elections. So I wanted to express how grateful I am to have the opportunity to vote.

I remember learning about voting through elementary school and about the suffrage movement at the beginning of the twentieth century. I grew up knowing that being able to vote was a right, but as a woman less than one hundred years away from the Nineteenth Amendment, it was also a privilege of sorts. My great-grandmothers would have gone part of their lives unable to vote whereas I knew that once I turned eighteen I could register.

As soon as I was able to, I registered to vote. Every time I moved I switched my registration. If I knew I wouldn’t make it to the polls for a particular election, I filed for an absentee ballot or moved heaven and earth to make it home. I can confidently say that I have not missed a single November or Primary election. I even try to go to the smaller ones for the local elections.

If I ever missed an opportunity to vote, I can count them on one hand.

Voting is extremely important to me. I recognize the sacrifice that the women underwent so many years ago to make sure I had that right to vote that I don’t want to ever waste that opportunity. I feel that I am able to honor these women by standing in line and waiting my turn to cast a ballot. By going to my polling station it’s an act of gratitude for all of those who went before me to make it possible.

I also recognize that my ability to vote and the fact that my vote counts, is a privilege. Not everyone has free and fair elections even in my own country. While there is a lot of vitriol out in the US political climate right now, our elections are still relatively free. Racially, I am part of two groups of people who have historically been disenfranchised, so each time I walk up to get my card I am nervous that I might run into some conflict with a poll worker.

My state is currently under national scrutiny for the disenfranchisement of some voters over the course the current mid-term elections, so getting out to vote was extremely important to Ash and me.

So important that with the exception of the 2016 elections (Jai was only one month old at the time), I make a point to bring Jai with me to vote. I want him to see that this is his right and if he wants to help bring about change, he needs to see how that happens. Right now he’s enjoying the sticker at the end, but when he gets older I want him to enjoy watching Mommy or Daddy pressing buttons on the screen and watching the card spit out after the vote is cast.

I will start explaining what each election is about, who is running in it, what they are running for, and explain why I am voting the way I am. I hope he’ll ask me plenty of questions along the way and more importantly, I hope it gets him excited to go out and vote as soon as he can at eighteen.

So while it may be a minor thing to be grateful for, I truly am glad that I have the opportunity to play such a small role in how my country is run. Sometimes it feels as though my voice isn’t heard or ignored, but I know that I did what I could regardless.

Do you enjoy voting? What’s your favorite part of the process? Share your thoughts and any fun stories in the comments below.


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Featured photo credit: Photo by Element5 Digital on Unsplash