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Is there Positive in an Exacerbation?

Ask yourself this: is there anything good that comes from a chronic illness exacerbation? The obvious answer is no. The hidden answer is yes.

Exacerbations do a number on our bodies and psyche. They are physical and mental setbacks that leave us feeling stuck in place until they are over. They can cause long-term damage or help progress our disease farther along.

Stating that an exacerbation can be “good” is unconscionable. As people coping with a chronic illness, we want to avoid them at all costs. Absolutely. But that isn’t always possible. I am aware that I could become a Zen Master and banish all the stress I feel in life, and still get hit by an MS exacerbation without warning. That is the very problem with a chronic illness: the unpredictability.

The key is to find a silver lining in the middle of each exacerbation as much as possible. There will be moments where maintaining optimism is near impossible, and that is fine. But in the moments we can find a ray of sunshine, we should embrace positivity.

The Frustration of an Exacerbation

Exacerbations slow us down. They can land us in the hospital for treatment, and they can leave us searching for more answers on how to best approach our treatment.

I hate exacerbations because of how much they set me back. Before I managed my MS, I would be in the middle of an important project, and an exacerbation would slow me down for several weeks while I recovered. My usual MS symptoms, like fatigue, often cause me to take a day “off,” while I recover in bed.

I often wonder if my body coordinates the timing of the exacerbation as a form of self-sabotage. I get ahead, and my exacerbations/symptoms pull me back.

There might be some truth to that conspiratorial belief. I am pushing myself so hard that I do not listen to my body, so my body has to get my attention. Fatigue, L’Hermmittes Sign are red flags that I am not taking care of myself.

And if I continue not to listen, the exacerbation comes along to stop me in my tracks and take a break. But by then, it’s usually too late, and I may not know the extent of the damage done by the flare-up.

Gratitude in the Lowest Moments

We know that exacerbations are annoying, we know that they can be damaging, so how can I find the positive in these adverse chronic illness events? What follows is what works for me, so your own experience may not reflect my own.

I learned that an exacerbation is an excellent opportunity to practice gratitude. Sometimes the flare-up affects my depression, so finding appreciation might be impossible. Literally, because the exacerbation is the source of a mental block. If this happens to you, try to remember not to feel discouraged because it is out of your control.

But in the moments where this isn’t the case, where the exacerbation impacts your body, where you can recognize what is going on, we can practice gratitude. This isn’t something you will be able to whip out on the first go, it will take practice. A lot of practice. Gratitude and positivity are hard to be the first thing we reach for in our lowest moments.

What would gratitude during an exacerbation look like?

Take time reflecting on the points I’ve listed below and try to find gratitude in at least one of them. If one of the points don’t fit or bring on further negative thoughts, move on, and find another aspect that can help.

When you find a point that works, take time to examine it thoroughly. Reflect on each part that you are grateful for, each positive experience you’ve had relating to it. This will serve as a healthy distraction from your exacerbation.

  • Your medical team. How quick are they to listen to you and respond to your needs?
  • Your support team. This might be your family, professional nurses/helpers, and beyond.
  • Your social network. Both online and offline. How well do they listen, respond to your needs, and help you through your tough times?
  • Your financial situation. Is it favorable or not? Do you have the means to care for yourself?
  • Your overall health outside of the exacerbation. What are you usually able to do and looking forward to once this resolves?
  • Your professional situation. Are you satisfied in your professional life, and do you find validation there? Are they supportive of your case?
  • Overall survival security. Do you have a home, food, ways to clothe and take care of yourself? Ability to get around, even if it’s less than ideal?

Hopefully, you’ll find plenty of things to be grateful for running for this list or have a starting point for your own gratitude list. It’s essential to find things you do have in your life, despite this low point, and focus on them as a means of distraction. The idea is to help uplift you until you recover.

Searching for Positive

I will acknowledge that it’s privileged to say that there can be a silver lining in almost every situation. Certain fundamental conditions need to be met before taking a step back and look for the positive. I am sure a number of my readers are in that position of privilege, but I won’t make a sweeping generalization.

That said, try and look for the positive even in the middle of your exacerbation. Finding the positive does feel futile at times, so don’t feel pressured if you can’t find it. There are going to be good moments, and there are going to be bad. When you first start off, there will be more bad moments until you get more practice.

The key is to retrain your brain to not focus on the negative, but be receptive of the positive. This will be an uphill battle, as our biology steers us towards the negative. We are no longer running from other apex predators when we walk in the woods, so take time to retrain the primitive brain.

Exacerbations, while overall, are not a positive experience, they can give us a chance to find the positive in our lives separate from the negative experience. They give us a chance to slow down, appreciate what we do have, and find a way to retrain our brains to focus on the positive aspects of life. It’s not ideal, it never is, but it’s one way to cope with an uncontrollable situation.


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Listening to our Self-Doubt

How often have you listened to your self-doubt? Listened to the point that it affects a decision you want to make?

You may not even know you are allowing your self-doubt to affect your decisions. It’s okay. We’ve often done things without realizing the where’s and why’s. But next time you want to make an important decision, and you feel yourself freezing, ask yourself: is this coming from a place of self-doubt?

Listen to the voice that pipes up. What is the tone of the internal conversation? Do you hear encouragement or discouragement? Is the rationale reasonable, or is it unfairly assessing your capabilities?

What Does it Mean?

Self-doubt is the belief we are incapable of doing something. We might compare ourself to others, be obsessively goal-oriented, or feel like an impostor. The end result is feeling like we aren’t able to do something, so why bother trying?

There may be an appearance of logic to our reasoning, i.e., why should we attempt something new that might be dangerous if we’ve never done it before? But that itself is dangerous thinking. It keeps us within our comfort zones and does not allow for growth of any kind.

We have to look at why our self-doubt wants to keep us within an unhealthy dynamic and what it’s trying to tell us.

Often, self-doubt follows moments of deep self-reflection because we are now acutely aware of our limitations. I find that I get frustrated by my anxiety after some self-reflection, which heightens my anxiety and can cause me to freeze. Self-doubt is the voice I hear that encourages me to engage in the unhealthy behavior of staying frozen.

What helps me is figuring out the root of my self-doubt.

Origin of Doubt

Like many of our internal beliefs and behaviors, doubt comes from childhood. It may come from grownups in our lives teaching us to doubt ourselves, or it may come from our experiences. Think back when you did something dangerous on the playground. You may have really hurt yourself to the point of never wanting to take the same risk again. Now you have an aversion towards tasks and opportunities that remind you of the incident.

The self-doubt does not come from a bad place as much as it comes from a place of personal protection. You may want to protect your ego, body, or relationships because you are worried about the pain.

We may no longer be running from other apex predators, but humans still (for the most part) try to avoid painful experiences emotionally and physically. We find ways to protect ourselves from feeling that pain. We may blame others for our own failings, project our deepest thoughts onto others, and we engage in our self-doubt to not even attempt to make changes or do something new.

But it’s about pushing through that pain, embracing it, getting back on that horse and not worrying about the consequences.

But let’s take a moment and talk about those…

The Consequences

When we give into our self-doubt and say “it’s not worth making a lifestyle change;” or “I don’t do diets because they never work;” or “why try finding a way to adapt to my chronic illness, I am never going to be cured;” we accept the severe consequences. Sorry to be melodramatic about it, but the consequences are what keeps us in an unhealthy mindset, body, and approach to our chronic illness.

When we give into our self-doubt, we say it’s okay to be unhealthy.

There are moments, to be sure, when we engage in self-doubt and those are okay provided we find a way to move beyond them. I am talking about refusing to make any changes when you recognize the problem.

A moment of self-doubt that I am still working through is written communication. I love writing my blog posts, but when it comes time to write and email or text message, I freeze. It comes from a place of fear, mostly of the other party expressing frustration or anger at my delay in responding.

So I don’t send the communication. I don’t even write it most times. Which gets me more anxious over how much time has passed…it becomes a vicious cycle.

This unhealthy way of thinking and behaving causes me to lose out on meaningful connections and opportunities because I am so caught up in my self-doubt. It took me years to get healthy because I doubted I could.

You may find yourself in a similar space where your self-doubt stops you. There may be something you really want to do, but because of your chronic illness you don’t want to try because you don’t think you can.

I am here to tell you that you can. You can always try and do something. It may not look exactly the way you want because you don’t have the means to match your mind’s eye, but you can always make an attempt.

At this moment, the only person stopping you from figuring out how you can do it is yourself.


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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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When MS Fatigue Strikes

I never realized it, but I was dealing with MS fatigue for a long time prior to my diagnosis. I always thought the fatigue had to do with my depression, which may have been MS related, but I had no reason to look into the fatigue. Once I resolved or managed my depression, the fatigue would go away. I wasn’t sure how I would manage my depression, but it was in the back of my mind “to do.”

The last time I felt energetic, truly energetic and what I imagine it feels like for everyone else, was when I was a teenager.

Every day can be a struggle for me to get things done. It’s something I’ve talked about a lot on the blog, especially the feelings of frustration I get from not being able to get everything done. I have learned to adapt around the fatigue, but the unpredictability surrounding it and what affects it is still a learning curve.

I think I will constantly be working through the frustration the fatigue causes.

What is MS Fatigue?

MS fatigue, or lassitude, is something that happens every day for the majority of people with MS. This fatigue can vary day-to-day and person to person. At this point in time, researchers do not know what causes fatigue, just that it is something that happens more with people with MS (up to 80%).

My completely uneducated, unqualified guess is that it probably has something to do with how the lesions affect our body or the fact that our immune system is constantly in overdrive and attacking itself. Like how we feel when dealing with a cold, the fatigue is our body’s response to the attack.

Fatigue can so negatively impact a person with MS that it may be used as a reason for why a person leaves the workforce early. I know that it made going to a physical job more difficult, one day I had to lie down on my office floor for a nap because I was so exhausted from teaching. I was able to work, but by the end of the day, I was completely worn out because I couldn’t get any naps or periods of rest during the day.

For me, I have my most amount of energy in the morning (with or without a good night’s sleep) and slowly lose energy as the day progresses. By mid-afternoon, I am desperate for a nap and will have a minor surge in energy afterward for an hour or two, but there is no guarantee of that second wind.

Fatigue as a Background Feeling

I have found that the fatigue surrounds me so much that it has become a background feeling for me. There is a level of itchy-comfort that surrounds me every day. I know this is an oxy-moron, but what it means is that I have that weird cozy feeling all day that you get when you are just tired enough. It’s that warm feeling you get where you are just drowsy.

But it’s itchy and uncomfortable because it’s really hard to snap out of it, which is frustrating. My body wants to stay in bed and sleep all day, but my mind is “we have to move and get work done!”

I have learned to push the fatigue to the background for most of the day, working through it, but I know that it makes me cranky at times. That’s where self-compassion comes in, but also where goal-setting helps as well. I think my running training has helped a lot. Besides giving me some extra energy that comes naturally from exercise, it sets a blueprint for goal acheivement throughout the day.

Running creates this blueprint: I need to run to the next telephone pole and then I can walk for a few seconds. When I am so worn out from running a long race, I sometimes have to create these small goals to keep pushing myself towards my personal race goals. In my daily life, it is very similar: I say “I need to complete this task and then I can rest for a few minutes.” When I feel my fatigue winning, I remember that if I can push through it with running so can I push through it in my daily tasks.

Bad Fatigue Days

Bad fatigue days are some of the worst days and moments for me.

I may have a bunch of things on my “to do” list and I will not get more than one thing done on that list. And that feeling of unproductivity can be extremely frustrating and discouraging for someone who likes to get a lot done in the day.

If I do too much the day/night before, I can be wiped out the next day making getting out of bed near impossible. When this happens, I find that I am cranky for much of the day. Unfortunately, because of the nature of the fatigue, no amount of sleep helps revive me. I could sleep over 8 hours the night before, get 4 to 6 hours of naptime and still be able to go to bed early for another full night’s sleep with no relief from the fatigue.

On these days, I feel that my depression hits harder because I am so tired and frustrated with my body.

I get frustrated when dealing with exacerbations, but I find that I am less frustrated with an exacerbation than I am with the fatigue. An exacerbation can be managed with medication, my fatigue rarely can. I’ve tried several different medications meant to give me a boost in energy, but I find they don’t make a dent or make me more drowsy.

Fatigue’s Impact on Emotions

While I might take medication, drink copious amounts of caffeine, run a mile or two in the morning, drink a bunch of water, or just rest in order to raise my energy levels, I find that I get no real relief from my MS fatigue.

The lack of relief or lasting energy boosts is so frustrating and wearing that I think fatigue has the most negative impact on my emotions regarding my MS.

I really wish that I can get more things done during the day. I wish I could have all the energy in the world to do a bunch of things with Jai. I wish I could take a couple extra hours every day to work on my blog and do my daily tasks.

All of these desires lead to my feeling of helplessness and personal frustration towards myself and my MS. Any negative feelings I have towards myself stem from my complete lack of control over being able to get things done in the amount of time I want. I might plan to spend the whole weekend getting caught up on a project and then find both days are spent in bed because I can’t summon enough energy.

With these negative feelings, I have learned to embrace self-compassion as a way to manage them. I recognize that until they come up with a perfect drug to deal with MS fatigue, this is something completely out of my control. I cannot change something out of my control, so stressing over it will achieve nothing, therefore I have to be softer with myself.

On Friday I will be discussing more indepth how I deal with my MS Fatigue in my newsletter post. If you want to read more about my personal solutions to this common MS problem, please sign up for the newsletter here.


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Featured photo credit: Michelle Melton


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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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