Love & MS

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


We don’t get to choose whether or not we get MS, nor do we get to decide when we get that diagnosis. For some, it comes while in a relationship, and for others, it happens outside of one.

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis my partner with me because they feel obligated? Do they resent having to care for me? Are they only interested in me because they have to “fix” me? What happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home). They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. In addition to maintaining a relationship, I am trying to learn my limitations. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things, and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

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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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Humiliation with a Chronic Illness

I’ve discussed how frustrating it is for me to ask for help, how the act of requesting help is a perceived admission of weakness. I’ve even highlighted the trouble I, we, sometimes have in the act of asking itself. To humble yourself before someone is humiliating, but this is for those without a chronic illness out there: having a chronic disease is humiliating.

Not being able to remember the details of a conversation I had five minutes prior is hugely frustrating, but typical for me. Having to cancel a social engagement because I am too exhausted causes more anxiety than if I went. Realizing that I am having an irrational reaction to a minor situation, but unable to control it causes a lot of shame.

These are the “in-the-moment,” examples of my MS humiliating me. I also have an unknown future ahead of me. While I try to be mindful and live in the moment, there are times where I must confront my future with the illness. I can’t be a grasshopper in my disease and live every day like it is summer. With a little one, I need to mentally and physically prepare for possibilities.

And these possibilities can be humiliating. The idea of asking for help if/when I reach one of these possibilities heightens my anxiety even if it’s all hypothetical right now.

Debilitating Disease

Has something fallen from your grip, and you know it’s due to the disease and not carelessness? Have you used store-provided scooters to get your errands done? Used a mobility cane to help you walk during an exacerbation, or because of damage done by one?

In each of these cases, you may have dealt with strangers’ stares, rude comments, or well-meaning looks from close ones. Humiliation comes not just from the outward expression of the disease, but how the condition impacts our egos. Each time we must compromise to accommodate the disease, there comes a moment of humiliation where we recognize the deteroation.

Intensifying the humiliation are strangers commenting how we should leave the scooters for those who need it; how we need to get out of their way because we’re moving too slow*; or you don’t look sick, so stop faking.

*I had an elderly stranger get snippy at me when I moved too slowly through the aisles in the days after my hospital stay. 

Admittedly, before I got my diagnosis, I did the same thing. While I kept my thoughts to myself, I often wondered if a person using a scooter or handicap placard needed them. Post-diagnosis, I am more sensitive to the fact that disability is invisible, and I shouldn’t judge strangers for using the tools available to them.

Most of us have experienced some negativity surrounding our illnesses by strangers. When these moments happen, like when the man got mad at me for being in his way at a store, it causes intense feelings of humiliation. It makes it hard to want to ask for help or take advantage of the support available to us.

Chronic Illness: the Humbler

A quick disclaimermy MS/chronic illness looks different from others. It’s the nature of autoimmune/chronic disease: each case is distinctive. I do not have to deal with the same issues as others, and I may never have to experience the same problems, but there is no guarantee the direction my MS will take. I may get worse; I may stay the same; I may get better.

I see my neurologist every year. At this point, it’s a simple check-in with my health. They like to know if I am getting worse or staying stable with my MS. Right now, I am maintaining, so it’s always a quick session. But the questions the neurologist asks are the same, and each time I go in, I am afraid of the day I have to say “yes,” to some of them. 

The question that scares me the most is: “do you have any issues controlling your urine?” My neurologist wants to know if I am incontinent, a symptom of progressing MS. I can continue to answer “no,” but there are moments in-between appointments where I am worried about my control. It might be symptomatic of my MS, or the fact I gave birth

Being faced with that question each time I see my neurologist is embarrassing, but I must be honest in my response. With incontinence affecting 80% of MS patients, there’s an excellent chance I will start experiencing it in the future. The day I answer “yes,” is the day my neurologist and I know my disease is progressing.

Knowing that there’s a chance I will need to wear urine control aids is humiliating. Let’s be realistic: the day I realize I need to start doing so is the day I have an accident. Hopefully, not in public, but it could happen.

Don’t Be Alone

In our most intense moments of humiliation, there’s a desire to isolate ourselves. Please avoid doing that as much as possible. Ask others for help or find ways to adapt to your illness as much as possible. Reach out to others for comfort, so you don’t feel alone.

I’ve said it often before: the chronic illness is isolating enough, don’t allow yourself to become further isolated.

Help is Temporary (and That’s Good)

If it helps you, remember this: everything happens in cycles. Life is one big cycle. Our exacerbations occur in cycles. You may be in a period where you need a lot of help, but it might be temporary. You may not always need as much support. You’ll figure out a way to adapt and do things on your own.

Keep that in mind if you are afraid to ask for help: this may be a short cycle, and you may not need to keep asking for help. While it is humiliating to ask, it will be a blip.

Chronic illness is humbling. Asking for help is humbling. But remember, acknowledging both and not giving into the isolation shows your resilience. The disease takes so much, don’t let it take what makes you durable.


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Fall Festival Fun

Depending on where you live, festivals are happening throughout the year. Living in the South, we tend to only have major festivals in the spring and fall when the weather is optimal. Because fall in the South is vastly different from what I grew up with, I’ve come to rely on the fall festivals to be a vehicle to “feeling” the fall season.

A lot of that stems from childhood activities during the fall and the mother of all fall festivals.

My Love for Fall Festivals

Growing up in New England, every year around this time is a massive fall festival that highlights all the New England states. Centrally located, going to this festival was a highlight of my childhood. For many children, myself included, it meant skipping a day of school in favor of going because the weekends were always too crowded.

This festival takes place on massive fairgrounds with several exhibition halls filled to the brim with vendors, displays, competitions, food, and informational exhibits. A crowd favorite? A butter sculpture that changes from year-to-year. They also have different buildings that highlighted everything each New England State produces or grows.

It was at this festival I learned about a new thing called “the information superhighway,” or the “World Wide Web.” They had an exhibit explaining what this new-fangled, recently released to the public in a more open capacity (it was limited until that point). I was more interested in the coloring book and stickers I got after going through the exhibit than what it had to tell me about “the internet.” Oh, if only I knew.

They also had a sizable midway and barns filled with various livestock for show and sales. In high school, I attended most years either as a volunteer for the agricultural display where we made free bows for fairgoers or as part of a competition. Never won anything significant, but it was always a fun excuse to skip school legitimately.

Unfortunately, there is nothing comparable in the South, at least nothing I’ve found. I do have plans to bring Jai up when he’s older so he can experience the same excitement I had for this festival as a kid.

Fun & Cheap (even Free!)

Another reason why I love fall festivals is their price. A favorite one we attend every year is only $10 for the public to attend, but free for members. Once inside, goers are able to view various points-of-interest, participate in fun activities for children, watch dancers showing off, listen to music and walk through both food and trinket vendors.

Other festivals near where we live are free to attend, which can also include free demonstrations and live music that always appeal to fascinated toddlers. There is never a requirement to spend money at these festivals, which both Ash and I love, though we try to support local artisans when the price is reasonable.

Suggestions for Attending (especially in hotter climates)

Some tricks that I’ve gathered from attending festivals all these years

  • Bring a sizable and easy to carry a water bottle. Water can get expensive but is necessary to have when dealing with hot weather and walking around.
  • Limit alcohol consumption (even if it’s a wine/beer festival). If it’s a particularly hot day, drinking too much will quickly dehydrate you. If you must drink, consider matching each cup/glass with an equivalent amount of water.
  • Hats, sunscreen – the works for sun protection. Some locations may not have shade and where they do you may end up fighting others for space.
  • Bring layers, comfortable shoes, and check the weather. While in the South, wearing shorts and tee-shirts might be the standard uniform for most days, there are the occasional cooler days where having a sweatshirt for part of it might be ideal. Comfortable shoes are also a must as most of your activity will be walking up to a mile.
  • If allowed, bring in a picnic lunch to help save money and stick to a healthy eating plan. Festivals always have tempting terrible foods that are deep-fried, but if you are trying to eat healthily, it can be discouraging to see and smell the foods you want to try but know you shouldn’t. Bring the main parts of your lunch if you can and then treat yourself after you’ve eaten to a festival dish. That way you are already full and will eat less and only limiting yourself to one unhealthy item versus a meal’s worth.
  • For those with children:
    • No matter the age, an extra set of clothes (especially bathing suit & towel) and shoes. Some places have previously unknown water/pool offerings and nothing is more discouraging to a kid than saying “no” because you are unprepared.
    • Bring cash because some festivals have play areas to burn off energy that might only accept cash.
    • If bringing a lot of stuff and you have one, consider bringing a heftier stroller versus the simple umbrella stroller. Strollers are great for carrying food, extra clothing, etc. If your little one is too old for a stroller, consider a collapsible wagon. Some are highly rated and can carry up to 150 lbs (which will be useful when little ones outgrow that).
  • For those with MS or illnesses affected by the heat:
    • Bring a cooling towel of some sort that you can re-wet frequently to help keep you cool.
    • A portable chair that can function as a cane while walking around. Getting down on the ground can be difficult and more difficult to get up.
    • Check, if you can, for motorized access if you use a scooter. Most festivals have to be ADA compliant, but one of the ones near where we live has very narrow walking paths between the vendor tents which can make it frustrating for those in a scooter.

What are some of your favorite fall festivals that you attend? Do you have any fun childhood memories of fairs? Share your experiences in the comments below.


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Featured photo credit: Michelle Melton


Beating the Heat with MS

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Multiple Sclerosis is no fun. Especially in the summertime.

Around this time of year, every year, I find that my energy and motivation wanes and my productivity level drops. I am pretty hard on myself, always having high expectations of my abilities and what I can get accomplished on a day-to-day basis, so any time I feel like I am doing less than what I could be doing, I get really down on myself.

I recognized that there is a pattern to my productivity levels depending on the temperature outside. On the cooler days of late fall, winter, and early spring I am able to get more done every day. It isn’t perfect or guaranteed, I am just more likely to get everything done that I want.

But once late spring, summer, and early fall hits, when the really hot and humid days sink in, I find that I am lucky to get more than two major things done on my to-do list. Most days require me taking a nap and if I push myself through it (and therefore too hard), I won’t get anything done past a certain time in the day.

Weekends are the hardest. I am so worn out chasing Jai around all week that when I get the opportunity to stay in bed for most of the day while Ash does the “heavy” lifting, I do. And then very little gets done on my to-do list.

There is a definite correlation between my productivity and the weather.

And I am not imagining it.

Heat & MS

It’s well-known that MS and heat do not go hand-in-hand. Many other MS patients find that the heat can be particularly draining, possibly due to electrical connections between neurons no longer being efficient from the heat. Because of this, flare-ups are more common, especially for those who suffer from spasticity.

In researching this post, I learned something I didn’t know: prior to MRIs and other efficient tests to diagnose MS, patients were submerged in hot water baths to gauge their symptom reactions to the heat.

I find this fact particularly interesting considering my intense love of hot, hot showers. Ash does not understand why I love them so much. And now I don’t know why I love them so much, I don’t find that it affects my body in a negative way, in fact, I find them extremely relaxing and soothing. I should try some lower-temperature showers to see how it impacts my energy level for the day. I may be negatively impacting my productivity in favor of a hot shower.

The recommendations by medical professionals are for MS patients to avoid the heat and humidity as much as possible. Some recommendations go so far as to tell patients to move to better climates. This is all well and good, but sometimes it’s unavoidable, not economically feasible, or we don’t want to let the weather affect our social plans.

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