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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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


where-to-start-with-self-compassion

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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Toddler Life Lessons

This post was originally published August 2018.


Toddlers are too young to understand deep, philosophical lessons. They are too young to understand moral quandaries. They are too young to really grasp right from wrong.

As parents, we know that just because they can’t understand it, doesn’t mean it shouldn’t be taught. I feel like this is a “no, duh” moment many parents are saying to themselves right now.

Yet an issue I run into as I parent Jai with Ash is knowing what lessons to teach and how best to teach them. Questions I ask myself on a daily basis: is this something worth correcting Jai on? How do I correct him, with a warning or straight to time out? Should I follow the mainstream recommendation or go with my instinct?

A mentor once told me years ago, well before I met Ash, that you are never truly prepared to have a child. So if you want to have one, you have to just jump in and learn as you go. It won’t be easy, but the payoff will be worth it in the end when you have a functioning, well-adjusted adult that wants to have a relationship with you after they’ve moved out of the house.

But in order to achieve this, I have to begin training Jai to be polite, thoughtful, a good listener, able to share, and comfortable with adults as a toddler. The list is a bit longer than that, but those are the main concerns I have on a daily basis with a toddler.

As I am training Jai, I have to be mindful of several things: I’m an adult, what battles to pick and being humble throughout the whole experience.

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