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Illness as a Positive, Part II

In November 2018, I surprised myself when I wrote about how I was grateful for my MS diagnosis. Before writing it, I thought about the benefits of my diagnosis, in light of all limitations. I was healthier, mentally and physically because of it. I made and achieved personal goals since my teenage years. Can an illness be a positive? I asked myself.

As I wrote, I found the answer was “yes.”

This isn’t a case of the dreaded “inspiration porn,” that plagues people with chronic illness. I am not saying that chronic illness is some test that brings enlightenment to its sufferers meant to inspire others.

I was talking to Ash a few weeks ago about how my MS isn’t “sexy” enough to be inspirational. I’ve temporarily lost leg function before, but never to the extremes that other people with MS experience. There’s nothing inspirational about my diagnosis and disease-management story.

What I am saying is that, for me, getting ill was the wake-up call I waited for all my life. The call rang in the background, but I kept ignoring it. Getting the “all clear” from my neurologist on my brain lesions shook me out of complacency. I reached my “rock bottom” and needed to work towards the person I dreamed of becoming for so long.

I absolutely have my moments where my MS is a negative thing. I hate my brain fog, when objects slip out of my hands, or I struggle to get out of bed due to fatigue. There are days where I wish I could trade places with someone who isn’t chronically ill just to feel “normal.” I will admit: this daydream occurs at least once a week.

Taking a mental tally of the benefits my illness brought me versus the negative, I’ve found that the positive outweighs the negative. This won’t be the case for everyone, my MS was never that bad, to begin with, but making the decision to be positive is one form of disease management.

How? It gives me a more realistic view of the severity of my illness. Before, I had a hopeless view of my future. I waited until I progressed to Secondary-Progressive. I now see that the MS does not limit me as much as I thought it did.

Deepening Appreciation

My perspective on my illness is evolving. Rather than re-publish the post in November with some edits, I wanted a separate post to reflect on everything I’ve learned about myself and my MS in the last eight months. Life is a classroom, and I’ve learned a lot more about myself since November.

In childhood, I was taught adversity was a good thing: it’s what shapes us into stronger adults. It’s one of the reasons why I chose the lotus for MS Awareness on the blog. Through the mud does the beautiful lotus flower bloom: a perfect metaphor for what it’s like to live with a chronic illness.

We sit in our dark moments, in the middle of an exacerbation, unable to see the internal growth taking place. When the exacerbation is over, we blossom into a more resilient person, wiser from the experience.

I just passed my second anniversary since my last major exacerbation, but I still live with a fear that I will wake up with blindness in one eye, or unable to lift my leg to walk.

I am more aware of a lot of things in life.

I’ve become more mindful of my time, choosing to live in the moment more, rather than focusing on the future fear of an exacerbation. I appreciate each day I get exacerbation-free. I am aware of my aging, and what my elder years might look like with MS. I recognize my mortality more, not because MS might kill me, but it might take my ability to function away from me, so I have to wait for years to die in a hospital bed.

This is unlikely to be my situation, but this disease is so unpredictable that I cannot rule it out entirely.

That is something the MS taught me: the unpredictability of it all. Everything. Each time I go out to exercise, I play with Jai, I interact with Ash, or love on my cats; each of these moments is so precious because I do not know what I will wake up to in the morning. If I am lucky, MS won’t get me, but MS did make me aware that anything can. MS taught me that every day is a gift and you never know when it is your time to go.

I know that’s morbid, but it’s why I developed a more positive outlook. If we are given a brief chance to look back at our lives at the end, will I leave feeling positive about my life overall, or negative?

The Importance of a Positive Outlook

I am speaking from a place of acceptance with my illness, so it’s easy to maintain a positive outlook. We are not all there yet, as we work through the stages of grief post-diagnosis.

Once you reach a space of acceptance, try to look at life more positively. Look not at the series of moments of what you cannot do, but at the moments of what you can. You may be surprised that you can do a lot more than expected. Now re-examine the things you think you can’t do and see how you can adapt to make things happen.

I never thought I could be a runner, before MS and especially after my diagnosis. I did not think I could be a mother. I never anticipated getting into a positive space with my more adversarial acquaintances.

I never thought I could improve as a person, especially after my diagnosis.

And yet, here I am. If I had the opportunity to go back ten years to interact with myself, past me would not recognize present me both physically and in personality. I am a completely different person.

It started when I stopped looking at what I couldn’t do and adapted myself, so I could “do.” Embracing a more positive outlook, I started to say “yes,” to more opportunities to grow. I don’t know if that would have happened without my MS.

The Grace of Chronic Illness

Having a chronic illness is awful. This is never in dispute.

There are difficult days where we can’t get anything done. Where we are so miserable, physically, and emotionally, that we just wish it could be over. But the grace of the chronic illness is this: it teaches us compassion towards ourselves and to others in similar situations. We can share our knowledge and experiences with others who are struggling to navigate their chronic illness.

Another reason why we should view ourselves as lotus flowers: the lotus flower represents compassion and courage. We are reborn in our illness and able to cope in ways we previously wouldn’t expect.

The illness teaches us how much we can endure, and we are capable of enduring a lot. You might discover one day that a friend experiences the same pain you do, but cannot manage it without external help. Meanwhile, it’s a pain you experience daily but manage through mindfulness and perseverance.

It’s not about comparing pain or experiences, but acknowledging that our perspectives and thresholds differ from person-to-person. It’s also about acknowledging what you are capable of doing.

Who you are and who you can be.

It would be nice to have a cure for our illnesses in our lifetime. But that may not be on the horizon any time soon. Waiting for a cure and rehabilitation to change our lives is something we may not have the luxury in doing. Shifting our perspective towards our illness, no longer looking at it as an entirely negative force in our life, can help get us on the path of self-discovery and self-appreciation.

The grace of our illness teaches us to appreciate our lives as they are now and the value of life itself.


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Featured photo credit: Michelle Melton

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Self-Reflection with a Chronic Illness

My self-reflection journey had two significant steps: step one, reflecting on life immediately after receiving my diagnosis; and step two, reflecting on life after Jai’s birth. You could say that I am in the middle of step three because self-reflection with a chronic illness is a lifelong exercise. I am a firm believer that self-reflection should be a lifelong practice regardless of your health. It keeps us moving forward and prevents becoming stagnant.

Today’s post is about the answers I came up with when I looked at my life just after my diagnosis up until now. Like with Monday’s post, I will end with some questions to ask about your current situation.

Post-Diagnosis; Pre-Health Minded

I have discussed this period of my life a few times on the blog.

After my diagnosis, I was in not in a healthy emotional place. I grieved the loss of my “old life,” such that it was. I tried to process the physical betrayal I felt, the uncertainty of my future, and why I felt like life just hated me. Despite that, or perhaps to help cope with it, I did self-reflect a little bit about my life and MS.

A thought I kept coming back to was my mortality and what that might look like. While MS is unique to everyone, the only example I had in my life was Annette Funicello. I swore that my health trajectory would take me to a place where I would be trapped in my body like her. I told those close to me that I was convinced my RRMS would progress to SPMS by the time I was forty, just eight years away at the time.

I was in a weird space of fighting the progression of my disease, but also just accepting what was happening. Part of my anger and self-loathing I had at the time led me to just want to give in and let MS kill me. But I also wanted to fight MS and get healthier. Torn between the two extremes I got stuck in a holding pattern for several years.

I did make an effort, if you could call it that, by speaking with my neurologist about disease management through healthy living, but I didn’t make any of the changes I told him I would. Thankfully, he was patient with me to wait until I was ready to get onto a drug regimen to manage my MS.

Once on Copaxone and later Tecfidera, I managed my flare-ups. Any exacerbations I got tended to be mild compared to the ones I got off medication. I was still super stressed, not exercising, not eating well, and not feeling good. The medication worked overtime.

2014. Hampstead Heath, London, UK. I was on Copaxone at the time, but unmotivated to take care of myself. I tried several months before to live “healthy” for a while, but failed to actually do anything.
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Recovery after an MS Exacerbation

So you’ve had a relapse/exacerbation/flare up. Hopefully, you’ve already had the conversation with your healthcare professional about managing the flare-up. You may take high doses of steroids to reduce the inflammation, but you’re coming down from the drugs and looking at recovery. What does recovery after an MS exacerbation look like?

Like all things MS related, your recovery is going to look different from mine which is going to look different from someone else’s. Having some ideas of what you can expect and what you can do on your own might help plan your next exacerbation recovery.

I am not a healthcare professional so all that follows should not be taken as medical advice.

Relapse-Remitting & Recovery

With Relapse-Remitting Multiple Sclerosis (RRMS) there’s a chance of recovery after each exacerbation. That means, there’s also a chance you won’t go back to the way you were prior to the flare-up. After my second major flare-up when I was abroad, I never got my full feeling back in my right index finger and thumb.

When you don’t go completely back to the way you were before, it’s extremely frustrating. But there are some ways to manage your recovery as a means of self-care, i.e. taking back control of your body. These are forms of complementary care: suggestions to work in tandem with your medical treatment.

Because I have RRMS, I can only speak to what recovery looks like after each exacerbation. If you have Primary-Progressive or Secondary-Progressive, recovery is going to look completely different. What follows are based on my experience dealing with RRMS.

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MS Symptoms: Optic Neuritis

The very first MS symptom I experienced was Optic Neuritis. I woke up one morning in a hotel room unable to see out of my left eye after a stressful experience. I’ve talked about this particular symptom throughout the blog because it played such a significant role in getting my MS diagnosis.

From the time I’ve spent in online MS support groups, I’ve found that the majority of other people with MS received their diagnosis after experiencing the optic neuritis exacerbation. I imagine it is the shock value: waking up and suddenly having a blob in your field of vision? You have to pay attention to what is going on because it is literally in your face.

What is Optic Neuritis?

Simply put: it’s an inflammation of the optic nerve which causes a temporary loss of vision. It can be painful and is primarily linked with Multiple Sclerosis and a few other autoimmune diseases such as Lupus.

Symptoms of optic neuritis include:

  • Pain
  • Loss of vision in one eye
  • Reduced field of vision
  • Loss of color (colors are muted or vision is grayscale)
  • Flashing lights

Optic neuritis is primarily treated through steroids to help reduce the inflammation.

I cannot diagnose anyone online, but I can offer a suggestion to bring to your healthcare professional for discussion:

If you are experiencing loss of vision in one or both eyes and your otomotrist, primary care provider, or opthalmologist are unable to figure out what is going on, consider asking them to test for optic neuritis. I wish someone had told me to consider this option early on as it would have reduced months of confusing and frustrating tests and gotten me the necessary treatment sooner.

Canary in the Coalmine

While the L’Hermitte’s Sign is one of the first indications that I am really stressed out, waking up to an optic neuritis blotch in my field of vision means I have an exacerbation requiring medical intervention. Sometimes I get numbness in my limbs, but I know that I am in trouble when I cannot see or am losing vision in one of my eyes.

Prior to my diagnosis, I was completely unaware as to what was causing my optic neuritis flare-ups. I thought migraine auras, as I had migraines previously but no auras. I would eventually get a migraine and the optic neuritis would fade away, but I can imagine it was a coincidence.

Now, if I get the slightest blotch in my eyes, I immediately contact my neurologist so we can come up with a treatment plan. Sometimes we wait and see if it gets worse and other times I get on some steroids to help reduce the inflammation. Regardless, I know I need to figure out what is stressing me out to cause the initial inflammation episode.

Invisible Symptom = Lying?

Many people with MS have that story.

That story of: “but are you really sick or are you just lying for attention?” My optic neuritis gave me my first and hopefully the only story of ableist treatment by others.

It was prior to my diagnosis and I volunteered in graduate school over the summer. This position required my sight. No amount of accommodations would work: I needed to be able to read to perform my duties as a volunteer.

I tactfully told the people running the program that I could not volunteer and teach at the same time due to some health concerns. I couldn’t stop teaching, so I figured all unpaid work could wait until I was feeling better or at the start of the fall semester.

Because it was summer and I made plans prior to my flare-ups, I went to a concert with a friend and posted about it on social media.

I didn’t realize this caused a stir with those I volunteered for until someone unaffiliated reached out to me. I remember the conversation divulging how people said I lied about my health to get out of volunteering my time.

I was flabbergasted at so many people: at the person bringing this information to me; those in charge; and everyone unaffiliated with situation talking about how I was faking my health issues. My health issues were none of their business and they did not know how I got to the concert. I told the person who started the conversation that concerts do not require sight and I deserved a bit of a break from my health issues if only for a night.

This accusation of shirking my duties made me feel insecure about my health that I felt obligated to overshare with the program once I got my diagnosis. Up until recently, I would explain my issues with MS as a reason for not doing something.

I am at a point where I realize that I do not owe an explanation for myself or my health.

The Emotional Impact

Warning: talk of self harm ahead. If you or someone you know self-harms, please know you are not alone.


Now that I know how to treat this exacerbation, I typically go with the flow and it’s more of an inconvenience than anything. I am bothered when it happens, sure, but that has more to do with feeling frustrated that its happening in the first place.

But when I didn’t know what was going on, this symptom caused the greatest emotional breakdown I had prior to my diagnosis. I needed to see for school and work, I could do neither. I was terrified because the doctors were not providing me with any information or hope of getting better.

Each day, I would wake up hoping I could see out of my left eye again. Each day I woke up unable to see I grew more and more anxious and frustrationed with my body.

I remember taking a shower one day, in the middle of my worst optic neuritis exacerbation (I couldn’t see out of both eyes), completely frustrated over no answers to what was happening to me. I started bashing my head against the side of the shower wall because I was so angry at my body that I wanted to knock the sight back into my eyes.

Fortunately, Ash was there and heard the banging that he immediately jumped into the shower to stop me from causing any serious damage. I was lucky to not concuss myself or cause any lacerations. I just remember him holding me down to stop me from harming myself further and comforting me as I cried for myself.

It was one of my darkest emotional moments.

Even thinking about it puts me back into that mindset of abject hopelessness. That complete lack of control and confusion is indescribable. I hope never to be in that place again.

Once I was in the hospital after my MRI, I felt so much relief in finally getting treatment. An answer was secondary at that point, but I was glad to be on the road to receiving one. If you are interested in reading how I’ve learned to manage this symptom and my cognitive fog from Monday’s post, please sign up for my newsletter. I will be discussing both symptoms in Friday’s newsletter.


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Featured Photo Credit: Amanda Dalbjörn on Unsplash


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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