self-reflection-with-chronic-illness

Self-Reflection with a Chronic Illness

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

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

Post-Diagnosis; Pre-Health Minded

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

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

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

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

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

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

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

Recovery after an MS Exacerbation

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

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

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

Relapse-Remitting & Recovery

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

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

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

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ms-symptoms-optic-neuritis

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


ms-mental-fog

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


MS-numbness

Dealing with MS Numbness

After my Optic Neuritis, the second obvious symptom of my MS was numbness. At first, I thought I was dealing with cold weather where my ear chilled and wouldn’t warm up. But when I got into a warm location for an extended period of time and my ear was still numb AND the numbness extended down my arm – something was wrong.

Of all the exacerbations it’s the most annoying but at this point the easiest to deal with for me. Mainly because I rarely encounter it, but also because I know exactly what needs to be done.

What is Numbness?

Numbness is rather self-explanatory: it’s when something feels numb or tingles. This numbness is common for those dealing with MS and is one of the earliest warning signs of Multiple Sclerosis.

Because of the nature of the numbness, it can impact daily life: without the proper environmental feedback, the numbness can make it difficult to walk, pick items up, and in some extreme cases, hard to swallow. That’s why it is important to take these numbness episodes seriously and see your doctor immediately for treatment.

Types of Numbness I’ve Experienced

I’ve already mentioned my ear, but I never really detailed the different types of numbness I’ve experienced throughout my illness. My ear was just my earlobe and the side of my face, but it eventually extended down the entire length of my right arm. Because I was abroad, this was problematic because I had no means to diagnose and treat it until I returned home. While I was in a country with excellent healthcare and experienced with MS, I was afraid I would waste everyone’s time when I was just dealing with some weird psychosomatic stress-induced episode.

Funny enough, that’s exactly what I was dealing with but more serious.

When I returned home I lost most use of my arm. I went to my General Practitioner who sent me to physical therapy. My PT suspected it was Thoracic Outlet Syndrome and so she worked on getting my nerves and muscles to stop spasming. Through her exercises both in the clinic and at home, I was able to loosen up my muscles to alleviate some of the numbness, but it basically went away once the exacerbation stopped.

Part of the problem with this particular numbness episode is that my arm locked up at the weirdest times. I had limited range of motion and I sometimes if I was reaching backward my arm got stuck. I physically could not get my arm to move back into position on its own. I needed someone to help me get it back in front of me if my left arm couldn’t reach. Driving a stick shift was difficult (it was the only car we had at the time), so I had to be driven everywhere for a month or so.

Not long after my arm started recovering did I experience my first symptoms of L’Hermittes Sign. It was at this moment I returned to my GP and shared with them my self-diagnosis of MS. The self-diagnosis was brushed aside, I think in part because of a lack of training, but I accepted it because I didn’t want to be right. Three months later after a hospital stint with massive amounts of steroids, I received my MS diagnosis. Most feelings of numbness and symptoms resolved at that point due to the steroids.

Another numbness episode occurred about 8 months later when I woke up unable to feel my right leg. Walking was particularly difficult because I did not know when I put my weight on my leg. I ended up with an interesting limp because I was so worried about my leg giving out. I borrowed a cane that Ash got as a present so I could walk faster.

Yes, there’s a photo:

I am positive I was making a face because some kids were looking at me weird. Credit: Michelle Melton

I definitely wasn’t as glamourous as Selma Blair at the Vanity Fair party, but it was the first time my mostly invisible illness was visible.

Because I got my diagnosis, I knew what caused the numbness this time. I was put on a high-dose steroid regimen for about a week and I regained use of my legs with no lasting damage. That was also the last time I experienced numbness as an extreme exacerbation. I still experience the L’Hemittes Sign from time-to-time when I am particularly stressed, but I have yet to experience limb loss to numbness again.

The Permanent Impact

While I have RRMS, which means that after each exacerbation I will most likely return to a state prior to the exacerbation physically speaking, there are still chances for me to have permanent damage from the exacerbation. I have mental fog and mild memory loss after one exacerbation, and after losing feeling in my right arm while I was abroad, my right-hand pointer and thumb are permanently numb.

This isn’t enough to impact my daily life so I cannot use these two fingers, but it is a present feeling that I notice from time-to-time. More than anything it’s annoying, but I know that I am very fortunate that this is the extent of my lasting symptoms. It makes my MS that much more real because I know that something isn’t right with me and that this is my normal.

Emotional Impact of MS Numbness

I can only speak for myself, but I know that the numbness is the scariest symptom of MS. Memory loss is awful, Optic Neuritis is annoying, fatigue is frustrating. But because of the actual physical impact of numbness: losing function of a limb which may mean you lose the ability to do a task, particularly favorite task is frightening. As mentioned above, the numbness can also mean difficulty doing basic functions for living like breathing and swallowing depending on what part of your body goes numb.

When I was walking around with the cane, finally able to show the world I wasn’t making it all up, I was a mixture of emotions. On one hand, I was able to show that there was something wrong with me. On the other hand, I was embarrassed and mortified by how visible I felt.

I was 29-years-old and using a cane. I had people giving me “the stare.” I hated how it felt and worked really hard to avoid needing the cane out in public during this exacerbation. Fortunately, once the steroids started working, my need for a cane went away and I gladly ditched it.

But the emotional lesson remained: I have MS and needing a walking device was a very real possibility in my future. At the time I wasn’t doing enough to take care of myself, I wasn’t even on disease-modifying drugs. Losing the function of my leg made me realize that I needed to do better if I wanted to increase my quality of life. After I finished up my steroids, I went back to my neurologist and began taking Copaxone to manage my MS.

I realized that I needed to begin the process of coping with my illness becoming more visible and learn to not be embarrassed by it, but use it as an opportunity to educate others. It would take another three years before I would start my blog, but at that moment I still hadn’t really dealt with the knowledge that I had MS.

The numbness, while more manageable for those of us with RRMS, is the true devastation of MS. It takes complete control over our bodies and makes us never forget that we are dealing with MS. Many other symptoms are easy to brush aside or ignore, but it is impossible to ignore the numbness. When your limbs are held hostage or basic functions are impaired, there’s no denying that you have MS.

For that, numbness is the symptom that scares me the most when I experience it as an exacerbation. It’s the one I think about when I am working really hard to manage my stress to help manage my exacerbations. It’s the one that I think about when I go back on MS medication. I hate the numbness and I hope to rarely experience it again in my lifetime.

Which symptom scares you the most with your MS? Do you dislike numbness as much as me? Leave your thoughts and experiences below.


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