Reflecting on Life Before a Diagnosis

My MS diagnosis was one of the best things to happen to me. I hate admitting this because it means I needed a chronic illness to shake me out of complacency. I am one of those people that needs to be smacked in the face, hard, to get an important message. I know this because I’ve reflected a lot on my life prior to my diagnosis.

Hopefully, I learned the lesson to listen more closely to life before it needs to hit me with another big smack.

I think it’s important to acknowledge and honor our life before the diagnosis. It’s so hard to look back at that time: seeing how capable we were, what we could do, what we took for granted…

I wanted to highlight some of the thoughts I’ve had while I’ve self-reflected on my life before my MS diagnosis. Towards the end of the post, you’ll find some of the same questions I asked myself to get you started.

Unhealthy Before the Diagnosis

To say that I was unhealthy prior to my diagnosis is an understatement.

I was unhealthy in body, mind, and emotionally speaking. I will primarily focus on the negative aspects of my life in this section. As I mentioned last Wednesday, self-reflection takes us down paths we would instead not acknowledge. I have a lot of pain I carry around in my life, and I’ve found what I’ve done up to this point has not worked in effectively managing it. I noticed looking at the origins of the pain helps me begin the process of healing. I am able manage situations differently, in a mature manner, and manage my MS until I am ready to get back on medication.

I broke down each section of my life where I did significant self-reflection.

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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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Stress and MS



Stress and MS.

These two go hand-in-hand. Without one, you wouldn’t get the other. Stress is a universal problem, something everyone deals with at some point in their life. Sometimes it is good, it motivates us to push through a problem for a solution. Other times it can hinder us and negatively impact our health.

I’ve talked about stress multiple times on the blog, but I knew that for MS Awareness month it deserved its own post. Stress plays such a big role in coping with MS, that for some of us, it induce our initial symptoms.

What is Stress?

Experts talk about stress on the morning talk shows. We complain to friends about it. Universally, we know and understand stress. But physiologically, what is stress and how does it affect someone who isn’t suffering from MS?

Stress is the body’s response to changes in mental, emotional, or physical changes. While the body is designed to handle stress, too much can trigger a negative physical reaction. If enduring a period of long and extreme stress, you are more likely to get sick. Your body starts to work against itself: ulcers, headaches, depression, anxiety/panic attacks to name some conditions induced by stress.

But it’s not always a bad thing.

Stress as a Positive

I firmly believe in good and bad stress. I thrive on positive stress: working on an important personal project and working up to the deadline to complete it.

Stress is one of the main drivers to get me to write as much as I do for the blog. It keeps me on track and keeps me posting.

I find that it’s such a major motivator in my life: I am freaking out to complete something, but I feel so productive once it’s accomplished. Turns out that “good” stress is a thing: it’s also known as eustress. Eustress we know we can handle and it’s usually short-term. It’s not necessarily easy to handle, but it’s manageable and can be used to drive us forward.

It’s what helps make an effort towards self-improvement.

Stress as a Negative

When we think about stress, it’s usually negative. It’s what causes us to freeze and feel burnt out. It’s hard to work through and can leave us feeling tense and angry.

This sort of stress is the kind that shortens your lifespan. It’s the kind that you have very little control over. When life throws hurdle after hurdle at you, and there’s no way to get out from underneath it, it’s this form of “distress” we experience.

This distress is where morning shows stake their segments upon. We buy books, browse blogs, pin ideas, and take classes all trying to cope with the distress we experience. We want to get rid of it because of how uncomfortable and miserable it makes us feel.

Unfortunately, we have very little control over when it ends and what it does in our lives.

Stress and MS

I spoke with my neurologist a year or so into my diagnosis and mentioned a potentially stressful situation. I asked him about how this situation would impact my health and my MS.

“Negatively,” was his response, “ask [those involved] to knock it off and do you want a prescription to give them?”

We had a good laugh over the absurdity of doing such a thing, but it got me to thinking. I was still in the middle of a stressful situation with graduate school and I wondered if it was contributing to some of the “secondary” MS symptoms I experienced: memory fog and fatigue.

I was not wrong: stress does lead to flare-ups. Curious enough, having MS (or any chronic illness) can cause stress too. It turns into a vicious cycle: you worry about the disease, the disease acts up, which stresses you out even more.

Exacerbations Induced by Stress

This study, published in 2004, looked at all the studies associated with MS, stress, and exacerbations over the period of thirty-eight years. They found a connection between stress that increases the chances of exacerbations with those diagnosed with MS.

If you have MS and found that your exacerbations or just your normal symptoms get worse when coping with a stressful situation, you aren’t imagining it. I personally found relief in knowing that managing my stress was a way to lower my chances of getting an exacerbation.

I understand that I am in a unique position to be able to manage my disease to lower my chances of an exacerbation. Not all people with MS are able to do so, if at all. There are days where stress gets close to causing an exacerbation, but I am able to recognize what is happening to help slow everything down to avoid it.

The Emotional Toll

Anecdotally, I can say for certain that extremely stressful situations, particularly relating to my personal life, increases my chances of getting an exacerbation. I was shocked at how quickly a flare-up appeared when I was in the middle of an extremely stressful moment and my arm started to go numb. Normally, I wake up with the exacerbation. It doesn’t literally happen before my eyes.

Thankfully, when I resolved the situation, the numbness went away within a day.

What’s most annoying about stress is that I have to plan my life around it. I have to take it into consideration when making major decisions. Will this freak me out? Will this bring on an exacerbation?

As I mentioned in my posts about toxic relationships, I’ve had to learn to be okay with cutting toxic people out of my life because of the problems the relationship induces. It’s discouraging when I have to manage relationships for my MS because there’s always this fear of lacking compassion on my part.

I’ve had to learn how to deal with feeling selfish which is always an uncomfortable place to be in.

Managing my stress is emotionally draining and stressful in itself. Later this week, I will discuss how exactly I manage it. Hint: self-compassion is involved along with learning to no longer care.


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Featured photo credit: Leah Kelley from Pexels


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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