Checking In: MS Symptoms

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better. Still, on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a virus like this, they may feel wiped out but can go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep. This afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a crucial example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm. Still, infections are a significant cause of flare-ups, so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick. Still, I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

I usually wouldn’t write about getting sick factoring into how I am currently feeling because I tend not to get sick all that often. Still, since having Jai, it has become a more common occurrence. 

Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted. I am doing what is best for my overall health, and that is more important. My brain fog and memory issues haven’t lessened, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.

Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days mean that I have more energy throughout the day. On the days I only do yoga, there might be a more significant dip in energy by the afternoon.

Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no apparent changes to my MS symptoms.

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parenting-with-a-disability

Parenting with a Disability

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


This is the final week in a 3-week series on parenting observations. Week one is based on gentle parentingweek two is about parenting with compassion, and week three is about parenting with a disability.

These posts are based on my personal experiences as a parent and are not meant in any way to judge other parenting styles or decisions. I am offering my own research and conclusions as possible suggestions for others out there; therefore, these posts will be as objective as possible. When it comes to parenting: if the method isn’t abusive, there really isn’t a wrong way to parent your child. Be secure and do what works best for you and your family and ignore outside judgment.


For many people, parenthood is fraught with challenges: getting enough sleep, the terrible twos, and the need for independence as children grow older. For a select few, there is the added challenge of balancing parenting and a disability of some sort.

Parenting without a disability is difficult, and parenting with one presents its own unique challenges. With some adaptations, parenting with a disability is no harder than parenting without one. Remember: it’s comparing apples and oranges; each type is challenging and straightforward in their own ways.

The key is to know what the limits are, having a support system of some sort to help manage those limitations, and keeping everything in a proper perspective.

In the final week of my parenting series, this week will be based more on observations from my own experience coupled with resources found online. If you are a parent with a disability, you may see some similarities in your situation. Hopefully, this will provide some validation to your experience.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so it may not speak to your experience directly.

Visible versus Invisible

There are two different types of disabilities out there: the ones you can see and the ones you cannot. For people with invisible disabilities, this can lead to a lot of issues, mainly if a person looks “normal” but uses a handicap parking space. A person does not need to be in a wheelchair, despite the universal logo, to be disabled.

Multiple Sclerosis can be both: for those with PPMS and SPMS (and at times, RRMS), it’s a more visible disability. The person can use a cane, walker, or scooter. It can be abnormal speech patterns, cognitive difficulties, or physical weakness. The outside observer can see the disability.

But many with RRMS don’t display outward symptoms of their diagnosis. Yet, the disability can still be there: fatigue, mental fog, or pain. Flare-ups can cause limb weakness or numbness, which several limits mobility for a short time.

When it is hard to see the disability, it is hard for outsiders to understand the extent of the disability. This can lead to feelings of frustration, inadequacy, and self-doubt by the person with the diagnosis.

Parenting with an invisible disability adds an additional layer of complications: sometimes, it’s hard to make playdate plans because you don’t know how you might feel that day. You may not remember simple details about your child’s life, and therefore seem disengaged with the parenting process from the outside. None of these reasons make you less of a parent, it just alters how you parent.

Ultimately, for those with an invisible disability, they can spend part of their day mentally preparing for outside judgment because people might not know or understand the situation. Outside judgment isn’t a daily occurrence, but when it happens, it stings because you are left feeling inadequate.

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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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blaming-god-for-my-illness

Who is to Blame?

After getting a chronic illness diagnosis, there is a flood of emotions and thoughts for the first couple of weeks. One significant feeling is strange relief in finally having an answer depending on the length of your search. But what follows behind is the dark cloud of, “why me?” It’s tempting to blame your higher power for your illness.

To a certain extent, externalizing the blame can be healthy because often it isn’t our fault we got sick. The source of many autoimmune diseases is nebulous or entirely out of our control.

When you blame your higher power, you run the risk of negatively impacting your faith or misplacing it all together. If your higher power is a stable source of comfort and you feel betrayed by them, then the internal conflict that arises can be destabilizing.

The Chronic Illness Crisis

Chronic illness creates a rift in so many different parts of your life. It can negatively impact your intimate, professional, or higher power relationships. There is an existential crisis that occurs when you get your diagnosis. So many overwhelming emotions and very little room to navigate through them. 

When you get into a place where the dust settles, you may be left wondering, especially if you have a belief system, why it is happening to you. How did this happen? Why did this happen? What did I do to deserve this illness?

If you speak with your higher power and hear silence, it can feel particularly frustrating. Often, we are taught to believe that they will be there for us, comfort us, and protect us. Or if you are taught that these sorts of things happen for a reason, it is natural to want to blame the higher power. Rarely do we find a good enough reason to be given a chronic illness.

More concerning, we may even feel to blame for the illness. That we get it because we aren’t following a particular path our higher power laid out for us. Even worse is if an outsider tells us that’s the case.

So did your higher power turn their back on you? And who is actually to blame?

Happenstance or Punishment?

Is your illness a coincidence, or was it some test/punishment put before you?

That’s a question only you can find the answer. I want to tell you that it is not a punishment, that your higher power had nothing to do with giving it to you or allowing it to happen, but that isn’t my place.

If it helps to view illness as a test, and that creates a healthy challenge for you to work towards overcoming, then do it. But if it brings you into a dark emotional place and causes a conflict with your higher power, look towards your options. Your higher power wants you to be healthy and find comfort in them. See what you can do to get back into that space.

When you blame your higher power, you place yourself in the role of victim, and that creates a negative emotional cycle that can spiral out of control. You are a victim of the illness, yes. But you don’t have to give in to the mentality which can lead you to feel stuck.

Who is Responsible for my Illness

Depending on your type of illness, no one.

I have plenty of spots in my life where I can say I am partially to blame for getting my MS. I didn’t get enough vitamin D growing up in New England. I got mononucleosis as a child. But what if I drank a cow’s worth of milk a day, never got mono and still got MS?

It’s pointless to blame myself because I genuinely have no clue why I got MS. I view it as the luck of the draw. If I spend time reflecting on the “shoulda done this,” I would drive myself crazy. I accepted I am not responsible for my illness.

I was deconverting around the time of my diagnosis, but I know precisely my response if I was still religious. It would be a back and forth between blaming my higher power for allowing it to happen and blaming myself for doing something that displeased my higher power. I wouldn’t consider the diagnosis as something that happens in life. I already had a lot of emotional pain with my higher power. I would have either gone to an even darker place emotionally or begun the process of deconverting to protect my mental health.

Yet, my higher power was not to blame for my diagnosis. When I was younger, I often thought of my higher power like a child that flicked bugs for their pleasure. I was a bug, and so they put negative lessons in my path to make me miserable. It wasn’t until I could look back and see what was really happening: I was experiencing the same sort of stuff everyone else did. I was not being singled out as I thought.

Maintain Your Source of Comfort

You need as many sources of comfort in your corner with a chronic illness. If you feel that you must blame your higher power for your chronic disease, consider finding a leader within your community to help you through the healing process. Make sure it is someone you trust, and remember they are fallible too. Their interpretations may not be healthy either, so you may need to search around for someone who provides you the comfort and answers you need.

Blaming your higher power will cause a rift in your relationship. If a relationship brings you comfort, then you want to maintain that connection. It will give you the emotional and mental strength you need for your flare-ups and treatments. Do what you need to do to repair that relationship so you can focus on your health.

If it helps, consider placing the blame where it belongs: circumstance. It’s a random confluence of events that led to your health getting to this point, not you or anything else. While it is a rather abstract thought, and sometimes that does not bring the same level of catharsis, it is healthier than blaming yourself or your higher power.


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surrendering-control

Surrendering Control

As a child, I heard about the importance of surrendering control, especially how it pertained to a higher power. While I spoke a bit on Monday about the importance of giving up control, this post is for those of us who cannot stand the idea of giving up control. When I heard the words “surrender control” growing up, I found that I would internally shudder at the thought. The word “surrender” in this particular context still irritates me years later.

I still haven’t quite identified why I hated the thought of surrendering control, even as a child. I suspect it has something to do with the abject vulnerability that comes from giving up control. I saw that the moments I was most vulnerable, I was also treated as though I was weak. So any display of vulnerability was a display of weakness. Surrendering was the ultimate sign of weakness.

Additionally, growing up, you are beginning to assert your independence. Being told to give up control, just as you are starting to come into control of your own life, feels like so many steps backward. I learned to associate giving up control as infantilizing. I could not differentiate between the “positive” forms of giving up control like going with the flow, and the “negative,” which was micromanaging all aspects of my life.

And so I became a control freak.

How to Give Up Control when You Can’t

It’s all well and good to be told to give up control. It’s one of those “easier said than done” situations.

But when it comes time actually to try and give up control, it can be difficult. I think for those of us who need to be in control are keenly aware of how out of control the world is, so we cling to whatever means to maintain a sense of order. We find areas in our lives we can manage, and even if we manage it poorly, there is some stability in the belief we are in control. 

Humans are masters of deception. Especially self-deception.

So, how do you surrender control?

Not easily, and I wish I were joking about that. This would be one of those areas where, if we could snap our fingers and fix everything, we would do it. I thought if I reflected on it hard enough, it would happen.

But it doesn’t work that way. Giving up control isn’t just a thought-based exercise. It requires active participation. I was seeking for something else to take control from me, even though it wasn’t for it to take, nor was I willing actually to give it. I couldn’t expect anyone, or thing, to take control. 

I, and I alone, could give up the control in my life. But I am like an addict, and to be sure, control is addictive, and addicts struggle to give up their drug of choice. While micromanaging my life brought on only stress, frustration, and health problems, I was unwilling to give up my “drug.”

Once I realized that I was responsible for my own burden, that the only way I would regain control in my life is to let it go, was I able to make a choice needed in the situation.

Now, if you have a higher power, you might say this: my teachings tell me to give up control. Many allegories teach to give to your higher power. Yes, but make sure you are actively giving up control and not expecting your higher power to take control from you. This is the trap I fell into. Make them your focal point, but remember that only you can say “I am going to give up control in this area of my life.”

Often, meditating or praying to that higher power or the universe can give you the strength you need to do so, so keep that in mind as well.

But it really has to be your decision to let go. Acknowledge that you are not in complete control of your life, that you are going to go with the flow, and accept whatever life hands you as graciously as possible.

Clear Head; Healthy Decisions

Control freaks: do you find that your head gets so cluttered with all that you have to do? All that you have to remember? All that you didn’t do, and now you feel frustrated?

The advantage of surrendering control is that it gives you a clearer head. No longer do you have to think about all the parts of your life you need to manage. You get a chance to prioritize what you can control and what you can’t. It allows you to reflect on your life more objectively.

Remember when I talked about not having expectations and accepting everything? No longer do you place expectations on your higher power or life to take control from you (you’ve given it over freely), and therefore, you can accept anything that comes your way. Often we get so wrapped up in controlling everything that we miss out. We might miss an answer we were waiting for, or an opportunity we’ve been wanting because it does not fit into the framework we’ve set up for ourselves.

We can make healthier decisions when we are in an objective head space. We can see what we need when we need it, and why we need it when we aren’t so focused on the minutiae.

Deeper Connections

Seeking a deeper spiritual connection with your higher power, the universe, or life? I found that once I gave up control in my life, truly gave it up, I had a deeper spiritual connection to those around me and the world at large.

I used to get so focused on the minutiae, but each time I slowed down, took the time to relax and go with the flow, I felt more at ease with myself and my placement in the world.

I also find that my compassion deepens for others and myself. My resiliency increases, and I am more accepting of what happens to me and around me. I am more willing to stand up for myself where I never could before, and be selfish in healthy ways.

Once I gave up control, I felt freer and in control, rather than out of control like I assumed I would feel.

Taking the Right Amount of Responsibility

Just as a reminder, when you give up control, you are still responsible for what happens in your life. You might be waiting for an answer, so what happens between asking the question and receiving that answer is your responsibility. We sometimes use giving up control as an excuse to sit around and be inactive. Instead, we should continue to be proactive in our lives. Seek other answers while waiting for a specific one.

Sometimes we don’t get an answer, or it’s not the one we want, and that’s okay. Consider the timing wrong, and ask again later. Look at it as a roadblock, and find a way to adapt around it.

Whatever you do, when you surrender control, view it as a chance to be more free and active in your life.


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