ms-symptoms-optic-neuritis

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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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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Where to Start with Self-Compassion

There is a lack of control when it comes to a chronic illness. For many of us, that lack of control gets frustrating and lead us to take our frustrations out on ourselves and those closest to us. True, society doesn’t blame us for feeling frustrated, but I hate feeling like I am mad at everyone, the world, and myself. I had to figure out where to start with self-compassion to help feel better about myself.

I am not going to be discussing anything groundbreaking, but I do want to spend this post detailing ways you can start the process to love yourself in spite of your chronic illness. The person most in need of love is yourself and I want to give you permission to do so.

Chronic Frustration & Struggles

Chronic illnesses lead to feelings of frustration with self beyond the normal struggles people face daily. Some typical struggles may be:

  • Figuring out what is wrong
  • Knowing what’s wrong and not knowing/wanting to deal with it
    • I know that this is an attack, but I really don’t want to go to through the doctor hassle to deal with it. Maybe it will calm down after a few days…
  • Feeling singled out with symptoms
    • Karen has the same illness as me and she seems to be doing better than me. That’s so unfair.
  • Frustration over limitations brought on by the illness
    • I took it easy yesterday so I could do a bunch of stuff today, but I still feel like I was hit by a semi-truck

This is just the tip of the iceberg for frustrations and struggles, but they are very real and impact how we live our lives. Our thoughts hold so much sway over how we act and interact with the world. When we listen to the frustrations and give into perceived limitations, it can impact how we manage our illness and possibly the degree the illness affects us.

We may direct our anger towards ourselves because we feel like we have no one else to blame. We may not want to take it out on loved ones because it’s not their fault. We also may not have anyone to talk to, despite having a possible support group, because chronic illness feels so isolating.

Feeling out of Control

All of this is to say, there’s a complete lack of control over what is going on when dealing with a chronic illness. You may have your illness so well-managed with medication, complementary therapies, and wellness-based living that you feel in complete control of your situation. But all it takes is one slip up, like a bit of unknown gluten slipping in your diet, or just life throwing an unplanned curveball for an attack to arise and make you feel completely out of control.

That’s the problem with chronic illnesses: there isn’t always a concrete reason for the attacks or symptoms. What minimally affects one person may be completely overwhelming for yourself. When I first received my diagnosis I couldn’t help but feel like the universe had it out for me and was so frustrated by the lack of control over my symptoms and disease.

What many of us want in our chronic illnesses is to control the uncontrollable.

An unproductive way to feel in control is to focus negativity inward. Some of us feel a lot of self-loathing and act on that in unhealthy ways, while others may just want to be down on themselves because it’s a “go-to” coping mechanism.

Where to Start with Self-Compassion

Some ways to begin incorporating more self-compassion in your life:

  • Recognizing the moments when you are unnecessarily harsh on yourself. I know that these moments can happen at the most random times for myself, but are highest just before or in the middle of an MS exacerbation.
  • Once those moments are identified, just start saying to yourself “it’s okay, I’m okay, I’m only human and that’s okay.” Come up with a silly, but the memorable mantra that works for you. Positive forms of humor may help shake you out of your feelings of frustration.
  • Talk to yourself like you are soothing a small child. This isn’t a condescending practice, for many of us, there is an inner child needing special love and attention. If you never received guidance on how to speak with a hurt child, think about what you would want a grown-up to say to you when you were younger.
  • Seriously consider looking into therapy for yourself. Sometimes the hurts run too deep that you need an objective third party to sit down and speak with you and provide positive guidance in your journey. Using therapy isn’t defeat, it’s using tools available to you. Ask if they promote self-compassion.

Beginning to see your Self-Worth

The first, and hardest, step you will need to take is acknowledging the following: I am worth loving myself. I am worth caring for myself. I am worth forgiving myself if I feel like I need to.

When you mentally accept that you are worthy of love, particularly your love, you begin a journey down a healing path. You will start to see things differently: relationships, perspective, life-management; all will shift into a more positive and healthy space.

You will get push back and that will be hard.

That’s why saying “I’m worthy” is the first step in the self-compassion journey. When it’s time to care for yourself because someone or something hurt you, you already know that you are worthy of that self-care. You can own your decisions as being what’s best for you, and curtail internal concerns that you are responsible for others.

I have found caring about what others think and how they respond to me puts me in an unhealthy mental space. Saying that I am worthy of positive interactions helped me phase out negative individuals with minimal guilt. The guilt is still there because that’s still ingrained, but I no longer back-track and allow the negativity back into my life.

Do you see your self-worth? What works for you to see it?  Leave your thoughts and suggestions below.


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Featured photo credit: Tim Mossholder on Unsplash


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Overcoming Roadblocks with a Chronic Illness

If you are taking this journey to wellness with a chronic illness, an understandable first concern will be: what about the normal roadblocks I encounter with my illness? What if I have a flare-up and cannot do anything for weeks time so it sets me back?

These are valid concerns and I am here to tell you that it will be okay when that happens.

Despite my best efforts, I still get mild MS flare-ups throughout the year. Because of my blog, I’m more aware that during the transitional times of the year, spring into summer, summer into fall, I am more likely to have some form of a flare-up.

These flare-ups can set me back a day, a few days, a week, and in one extreme case, a few months (though that’s been a while). 

I have learned to accept that these flare-ups are normal and move forward in my journey in spite of them.

New Journey; New Frustrations

Whenever starting a new journey there’s always moments of self-doubt. Will I succeed? What will the success look like? What would failure look like? How do I avoid failure?

There are always a ton of questions. When dealing with personal goals that require us to do extra work, such as adding in an extra walk for the day, looking over a boring task that you’ve been avoiding, or working through a particularly emotional part of your life; it’s easy to get stuck and want to avoid dealing with it altogether.

That’s part of the problem, something gets frustrating so we put it off and then we get discouraged and the cycle continues. Adding in a chronic illness where things happen out of our control adds an additional layer of frustration.

Chronic Attacks!

In the Multiple Sclerosis communities, we have many different names for when the illness/disease takes over: flare-up, exacerbation, and my personal favorite, the relapse. If you have another autoimmune disease, chronic illness, or personal wellness roadblock, you might have a different name for it.

To avoid confusion, let’s just call it an “attack.”

Attacks happen. You know they are going to happen and that might be discouraging, but it’s part of your normal like it or not. We might as well take a moment and embrace it. Our normal is not the same as anyone else’s normal. Let’s be honest: no one’s “normal” is like anyone else’s with or without a chronic illness.

The best thing we can do in these situations is to recognize that attacks will happen and prepare ourselves for dealing with them effectively. If you know what triggers an attack and how to manage it, then make a game plan.

Make the Changes Anyway

Since we know roadblocks with a chronic illness are going to happen anyways, there’s never going to be a good time to make the wellness changes you’ve been wanting to make. That’s why now is the time to make those changes regardless.

I would love to have a day where I don’t deal with any fatigue so I can do my yoga or respond to a bunch of emails that end up taking several hours. But I won’t get that day and if I do, I cannot plan for it. Chronic illness never allows me to fully plan when and if things get done.

If I want to do yoga or be productive, I have to make those changes regardless. Roadblocks with a chronic illness are normal, so it makes sense to accept them and work with the roadblocks when it comes time to start a wellness journey.

It sounds like I am saying “just do it,” and on the surface level, I am. But what is different is how you approach the “just do it” attitude. I am reducing a very complicated situation down to changing perspective because that’s the first step in a very difficult and very personal journey.

It’s all a Matter of Perspective

If you’ve been in the middle of your illnesses long enough, it’s easy to forget what it’s like to have a “normal” life. Concerns for attacks can rule your days, so you forget how different concerns would interfere with those who don’t cope with a chronic illness.

A car breaking down can take someone out of commission for weeks at a time, like an episode for us. Twisting an ankle might keep a person from exercising for a week until they recover, just like an attack.

Sure, we have the added concern the same things that happen for “normal” people happening to us PLUS dealing with an attack, but the point is –  everyone has things that can bring up a roadblock and stymie all progress made when trying to live a wellness-based life.

Maintaining the perspective that there is always a concern for an attack, but focusing on it ending (even though you don’t know when) and finding small ways to work around it will keep you going. Obviously, some attacks will prevent you from moving forward because if you are bedridden and there may be little you can do to adjust. However, if you are bedridden but able to lift a weight, even if it’s a book for a couple of repetitions, the very act of doing something may be enough to help keep you going.

Adjust your perspective to see that you are not alone because everyone has roadblocks, and that your roadblocks just look a little different than others.

Roadblocks with a Chronic Illness

As you begin your wellness journey, expect the roadblocks or attacks to happen, and embrace them. I am not recommending leaning into them to make excuses, but say to yourself: well, this is going to happen and I can’t necessarily change it, so I might as well work around these roadblocks to bring about a positive change in my life.

I cannot guarantee it because I am not a healthcare professional, but there’s a chance recognizing these attacks as normal and adjusting your perspective to be prepared for them might help lessen the attacks when you get them. It may never prevent them and what damage/time taken away from your life, but when you are ready for something you know how to effectively deal with it.

I have found that I’ve shortened the length of my attacks when I am prepared and don’t allow the attacks to discourage me or my progress. I tend to have an attitude of “well this is an annoyance, but I clearly need to slow down because I am overworking my body in some way.”

This suggestion and method of approach are not “one-size-fits-all” but if you’ve never tried to prepare yourself for these attacks in mind, it would be worth trying to account for them over the next couple of weeks.

For Wednesday, look for a post on how to begin the process of planning for and accounting for roadblocks.


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Beating the Heat with MS

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Multiple Sclerosis is no fun. Especially in the summertime.

Around this time of year, every year, I find that my energy and motivation wanes and my productivity level drops. I am pretty hard on myself, always having high expectations of my abilities and what I can get accomplished on a day-to-day basis, so any time I feel like I am doing less than what I could be doing, I get really down on myself.

I recognized that there is a pattern to my productivity levels depending on the temperature outside. On the cooler days of late fall, winter, and early spring I am able to get more done every day. It isn’t perfect or guaranteed, I am just more likely to get everything done that I want.

But once late spring, summer, and early fall hits, when the really hot and humid days sink in, I find that I am lucky to get more than two major things done on my to-do list. Most days require me taking a nap and if I push myself through it (and therefore too hard), I won’t get anything done past a certain time in the day.

Weekends are the hardest. I am so worn out chasing Jai around all week that when I get the opportunity to stay in bed for most of the day while Ash does the “heavy” lifting, I do. And then very little gets done on my to-do list.

There is a definite correlation between my productivity and the weather.

And I am not imagining it.

Heat & MS

It’s well-known that MS and heat do not go hand-in-hand. Many other MS patients find that the heat can be particularly draining, possibly due to electrical connections between neurons no longer being efficient from the heat. Because of this, flare-ups are more common, especially for those who suffer from spasticity.

In researching this post, I learned something I didn’t know: prior to MRIs and other efficient tests to diagnose MS, patients were submerged in hot water baths to gauge their symptom reactions to the heat.

I find this fact particularly interesting considering my intense love of hot, hot showers. Ash does not understand why I love them so much. And now I don’t know why I love them so much, I don’t find that it affects my body in a negative way, in fact, I find them extremely relaxing and soothing. I should try some lower-temperature showers to see how it impacts my energy level for the day. I may be negatively impacting my productivity in favor of a hot shower.

The recommendations by medical professionals are for MS patients to avoid the heat and humidity as much as possible. Some recommendations go so far as to tell patients to move to better climates. This is all well and good, but sometimes it’s unavoidable, not economically feasible, or we don’t want to let the weather affect our social plans.

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