ms-mental-fog

I’m Sorry, but I Can’t Remember: MS Mental Fog

I first received my MS diagnosis while I was in a graduate program for literature. One of the key components to graduation is the Comprehensive Exams. In these exams, it’s expected to memorize key dates, figures, concepts, and timelines to do essay identifications and write several seminar length papers with little to no help over 48-72 hours. Prior to the diagnosis, I knew I was struggling with memory issues, but I assumed it was from lack of sleep. After my diagnosis, I realized what I experienced was a form of MS mental fog.

Granted, post-diagnosis, my University was required to make accommodations for me, but my pride struggled to allow it. Acknowledging that I have memory issues is something I still struggle with today: as someone who needs their brain for their living, knowing that it isn’t working properly is a huge blow to the ego.

All of this is to say, that this post is one of my harder ones to write because of how sensitive I am about my memory.

What is MS Mental Fog?

In more technical medical terms, MS mental fog falls under the cognition category. Cognition includes information processing, memory, attention and concentration, executive functions, visuospatial functions, and verbal fluency. As listed on the NMSS website, more than half the patients with MS experience some form of cognitive dysfunction. You have cognitive dysfunction if you experience one or more of the following (but not limited to):

  • Struggle with processing information appropriately with one of your senses, like something tastes off or does not feel like it should.
  • Remembering new information, such as names or tasks.
  • Decreased ability to concentrate.
  • No longer able to multi-task or divide attention.
  • Inability to plan or prioritize tasks (important to unimportant).
  • Decreased ability to judge spatial distances or think abstractly.
  • Struggle to find words in a conversation or writing.

I know I’ve struggled with all of these at one point or another, with some of them being an everyday occurrence like the fatigue.

Dealing with Memory Issues

I assumed my memory issues had everything to do with a lack of sleep from graduate school. Like many of the “problems” I was having, the solution would be to simply sleep when I got a chance.

I got the chance on several occasions and while it did help with my memory because anytime a person is “well-rested” they improve to a degree, the problem did not go away.

But once I got my diagnosis, it was like a flood-gate had opened. I had successfully repressed and blocked out any acknowledgement that there were deeper cognitive issues up to that point. Now that I knew what was going on, I had an “aha!” moment and felt like my cognitive issues got worse.

I don’t believe they got worse, but rather, I finally acknowledged that they existed.

Teaching was a passion and I realized how much harder it became. Remembering simple concepts, answering common questions all became more difficult. I found myself having to plan out my lessons to the very minute to ensure all the important things were covered. Half my time was spent planning my classes while the other half was spent grading.

It was little wonder I had no time to work on required work for graduation. I didn’t push myself too hard because I felt useless with my memory issues. I think I hoped it would somehow go away or I would find a key to fixing it so I could get back on track.

Testing Acuity

I eventually got so frustrated with my cognitive issues that I spent a whole day testing my acuity in a lab associated with my neurologist’s office. I wanted to get a baseline of my abilities, but I also wanted to figure out if I truly was getting worse like I suspected.

A mentally trying day, I was given a series of tests where they would ask me a series of questions to test my memory. I had to rank things in various orders, come up with synonmns for words, and other tests that really stretched my brain power, reaching far in my mental reserves.


It was one of my least favorite rounds of testing, but I made it through it.

They gave me the results: I did have some memory issues, but I wasn’t nearly as bad as I thought. They mentioned the only reason why I noticed it was because I was in graduate school and needed to use my memory more than other patients, but it was small comfort.

They provided me with some insight on how I could manage my cognitive issues, but I was doing everything I needed to do already.

Seeing Some Improvements

When I got pregnant, I put concerns about my cognitive issues on the backburner. It wasn’t until after I gave birth to Jai and getting more sleep that I noticed I had a better time remembering things. It wasn’t perfect, but my cognitive issues were better.

I don’t know why I improved my cognitive abilities. I assume that during the pregnancy, my body was able to heal in the same way it healed the lesions I previously had.

I still am not at one-hundred percent. I struggle with memory recall or committing things to memory. Word recall is a struggle on a daily basis, and I still feel this barrier in my brain that prevents me from feeling like I have full access to my mind.

The Emotional Toll

This particular symptom of my MS takes a larger emotional toll than fatigue or numbness. Fatigue is omnipresent and numbness is a sad reminder of my illness – but memory fog really hits me in my ego and feelings of self-worth. It’s so hard to say to a friend “I know you told me this already, but I can’t remember what you said…” because it feels like I didn’t listen to them in the first place.

I tell acquaintances that I don’t remember their name or their partner’s name. I generally play it off as a symptom of “getting old” if I don’t know them well, but with closer friends, I will fully blame the MS. Everyone understand because I know everyone has their own form of memory blanks.

I am just painfully aware of the blanks which is what frustrates me so much.

The biggest toll the memory fog plays is in my relationship with Ash. I swear up and down that I remember a conversation in a particular way, and he remembers it differently. I get extremely frustrated because it feels like he’s not listening to me or trying to mess with me, but deep down I suspect that he’s right and I just can’t remember anything because of the MS.

Having memory issues is one of my biggest personal fears. When I learned about Alzheimer’s, I freaked out over the idea of losing control over my mind. MS creates the same sort of fear: with each exacerbation I have, I increase my chances of cognition issues becoming permanent. What if my MS takes me down the road similar to Annette Funicello? Would I know who I am or would I be trapped in my immobile body?

As with many other symptoms, I’ve learned to place my fears aside and work through the steps of self-compassion to manage the MS. I am keeping myself mentally active through reading, writing, teaching, and playing puzzle games (all recommended by the people who tested me), and stretching myself mentally often.

I still have my moments where I am extremely frustrated by my lack of mental abilities, but they are becoming more infrequent. I think that’s all I wanted to say, but I can’t remember.


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Featured photo credit: Michelle Melton

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MS-numbness

Dealing with MS Numbness

After my Optic Neuritis, the second obvious symptom of my MS was numbness. At first, I thought I was dealing with cold weather where my ear chilled and wouldn’t warm up. But when I got into a warm location for an extended period of time and my ear was still numb AND the numbness extended down my arm – something was wrong.

Of all the exacerbations it’s the most annoying but at this point the easiest to deal with for me. Mainly because I rarely encounter it, but also because I know exactly what needs to be done.

What is Numbness?

Numbness is rather self-explanatory: it’s when something feels numb or tingles. This numbness is common for those dealing with MS and is one of the earliest warning signs of Multiple Sclerosis.

Because of the nature of the numbness, it can impact daily life: without the proper environmental feedback, the numbness can make it difficult to walk, pick items up, and in some extreme cases, hard to swallow. That’s why it is important to take these numbness episodes seriously and see your doctor immediately for treatment.

Types of Numbness I’ve Experienced

I’ve already mentioned my ear, but I never really detailed the different types of numbness I’ve experienced throughout my illness. My ear was just my earlobe and the side of my face, but it eventually extended down the entire length of my right arm. Because I was abroad, this was problematic because I had no means to diagnose and treat it until I returned home. While I was in a country with excellent healthcare and experienced with MS, I was afraid I would waste everyone’s time when I was just dealing with some weird psychosomatic stress-induced episode.

Funny enough, that’s exactly what I was dealing with but more serious.

When I returned home I lost most use of my arm. I went to my General Practitioner who sent me to physical therapy. My PT suspected it was Thoracic Outlet Syndrome and so she worked on getting my nerves and muscles to stop spasming. Through her exercises both in the clinic and at home, I was able to loosen up my muscles to alleviate some of the numbness, but it basically went away once the exacerbation stopped.

Part of the problem with this particular numbness episode is that my arm locked up at the weirdest times. I had limited range of motion and I sometimes if I was reaching backward my arm got stuck. I physically could not get my arm to move back into position on its own. I needed someone to help me get it back in front of me if my left arm couldn’t reach. Driving a stick shift was difficult (it was the only car we had at the time), so I had to be driven everywhere for a month or so.

Not long after my arm started recovering did I experience my first symptoms of L’Hermittes Sign. It was at this moment I returned to my GP and shared with them my self-diagnosis of MS. The self-diagnosis was brushed aside, I think in part because of a lack of training, but I accepted it because I didn’t want to be right. Three months later after a hospital stint with massive amounts of steroids, I received my MS diagnosis. Most feelings of numbness and symptoms resolved at that point due to the steroids.

Another numbness episode occurred about 8 months later when I woke up unable to feel my right leg. Walking was particularly difficult because I did not know when I put my weight on my leg. I ended up with an interesting limp because I was so worried about my leg giving out. I borrowed a cane that Ash got as a present so I could walk faster.

Yes, there’s a photo:

I am positive I was making a face because some kids were looking at me weird. Credit: Michelle Melton

I definitely wasn’t as glamourous as Selma Blair at the Vanity Fair party, but it was the first time my mostly invisible illness was visible.

Because I got my diagnosis, I knew what caused the numbness this time. I was put on a high-dose steroid regimen for about a week and I regained use of my legs with no lasting damage. That was also the last time I experienced numbness as an extreme exacerbation. I still experience the L’Hemittes Sign from time-to-time when I am particularly stressed, but I have yet to experience limb loss to numbness again.

The Permanent Impact

While I have RRMS, which means that after each exacerbation I will most likely return to a state prior to the exacerbation physically speaking, there are still chances for me to have permanent damage from the exacerbation. I have mental fog and mild memory loss after one exacerbation, and after losing feeling in my right arm while I was abroad, my right-hand pointer and thumb are permanently numb.

This isn’t enough to impact my daily life so I cannot use these two fingers, but it is a present feeling that I notice from time-to-time. More than anything it’s annoying, but I know that I am very fortunate that this is the extent of my lasting symptoms. It makes my MS that much more real because I know that something isn’t right with me and that this is my normal.

Emotional Impact of MS Numbness

I can only speak for myself, but I know that the numbness is the scariest symptom of MS. Memory loss is awful, Optic Neuritis is annoying, fatigue is frustrating. But because of the actual physical impact of numbness: losing function of a limb which may mean you lose the ability to do a task, particularly favorite task is frightening. As mentioned above, the numbness can also mean difficulty doing basic functions for living like breathing and swallowing depending on what part of your body goes numb.

When I was walking around with the cane, finally able to show the world I wasn’t making it all up, I was a mixture of emotions. On one hand, I was able to show that there was something wrong with me. On the other hand, I was embarrassed and mortified by how visible I felt.

I was 29-years-old and using a cane. I had people giving me “the stare.” I hated how it felt and worked really hard to avoid needing the cane out in public during this exacerbation. Fortunately, once the steroids started working, my need for a cane went away and I gladly ditched it.

But the emotional lesson remained: I have MS and needing a walking device was a very real possibility in my future. At the time I wasn’t doing enough to take care of myself, I wasn’t even on disease-modifying drugs. Losing the function of my leg made me realize that I needed to do better if I wanted to increase my quality of life. After I finished up my steroids, I went back to my neurologist and began taking Copaxone to manage my MS.

I realized that I needed to begin the process of coping with my illness becoming more visible and learn to not be embarrassed by it, but use it as an opportunity to educate others. It would take another three years before I would start my blog, but at that moment I still hadn’t really dealt with the knowledge that I had MS.

The numbness, while more manageable for those of us with RRMS, is the true devastation of MS. It takes complete control over our bodies and makes us never forget that we are dealing with MS. Many other symptoms are easy to brush aside or ignore, but it is impossible to ignore the numbness. When your limbs are held hostage or basic functions are impaired, there’s no denying that you have MS.

For that, numbness is the symptom that scares me the most when I experience it as an exacerbation. It’s the one I think about when I am working really hard to manage my stress to help manage my exacerbations. It’s the one that I think about when I go back on MS medication. I hate the numbness and I hope to rarely experience it again in my lifetime.

Which symptom scares you the most with your MS? Do you dislike numbness as much as me? Leave your thoughts and experiences below.


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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


2019-MS-Awareness-Month

Highlighting MS Symptoms

Normally this post would be for newsletter readers only, but for MS Awareness Month, I am making it available to all readers. Don’t miss a single post! Sign up for the MS Mommy Blog Newsletter today! It’s never too late to join the 2019 Wellness Challenge.


In Wednesday’s post, I highlighted a typical day with MS for me. I didn’t go into much detail of what it was like with each of my symptoms, but I wanted to spend the rest of the month focusing each post on a different symptom I’ve experienced in my MS journey.

The hope is to normalize my experience, both how I felt when I first experienced the symptom, and how I dealt with it. Obviously, what works for me may not work for everyone, but I want to highlight that even in the darkness can there be light.

Symptoms that will be highlighted for the rest of the month: fatigue, numbness, memory fog, Optic Neuritis, stress as an exacerbator, and working through recovery. Each Friday, in the newsletter, I will discuss the way I handled dealing with the symptoms highlighted during the week, so please sign up for the newsletter to read my experiences.

Please contact me if you don’t see a symptom discussed and want to see it highlighted in some way this month.


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a-typical-day-with-MS

A Typical Day with MS

MS is a disease where each person’s experience is different from another’s. With three different types of diagnoses, Primary Progressive Multiple Sclerosis (PPMS), Relapse-Remitting Multiple Sclerosis (RRMS), and Secondary Progressive Multiple Sclerosis (SPMS), the disease can behave differently from person-to-person. Within each type, there are a variety of symptoms that may not be experienced by each person. A typical day with MS will vary, but I wanted to spend today’s post discussing mine.

A Typical Day with MS

If I am in half-marathon training, then I will get up with the alarm clock really early. I typically get 5 – 6 hours of sleep which I know is not enough, but it’s hard to go to bed immediately after putting Jai to bed. I want to spend time with Ash, so I don’t get to bed until 11pm most nights.

My mood and energy are generally fine on these mornings. I keep my exercise gear set out so I don’t fumble looking for it. This allows me to sleep as late as possible before making the 15-minute drive to run with my mom.

After my run, I have to rush back home so Ash can leave for work on time. I will be full of energy at this point, but I start my first cup of coffee for the day. I probably drink 3 – 4 cups of coffee throughout the day and at least one cup of black or green tea in the afternoon to keep my energy levels up. I definitely do not drink enough water, which may be hindering my energy levels in its own way.

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