What Self-Care Looks Like When You Have MS
"I was waking up with massive headaches, numbness in my hands and odd parts of my body."
Sundays are a day to recharge and reset by hanging with friends, turning off your phone, bathing for hours on end, or doing whatever else works for you. In this column (in conjunction with our Instagram Self-Care Sunday series), we ask editors, experts, influencers, writers, and more what a perfect self-care Sunday means to them, from tending to their mental and physical health to connecting with their community to indulging in personal joys. We want to know why Sundays are important and how people enjoy them, from morning to night.
While roller skater, blogger, and realtor Kaci Bell started doing graphic design work for sign shops around Dallas-Fort Worth, Texas, just after college in 2019, she says that she realized something wasn't sitting well with her. "I couldn't figure out what it was, but I just knew that I was uncomfortable with my life, career-wise," the now 26-year-old tells HelloGiggles. "I worried and stressed myself sick and into panic attacks almost weekly. I was constantly overwhelmed with where I worked and the people I worked with to the point of crying every morning knowing I'd have to return back to that place."
And because Bell has Multiple Sclerosis (MS), this stress not only affected her mentally but physically, too. "I was waking up with massive headaches, numbness in my hands and odd parts of my body, and a rising inner body temperature," she says.
But it wasn't until the coronavirus (COVID-19) pandemic hit, forcing her to be laid off from her job, when she figured out what was causing all her stress. "It was that moment of freedom where I realized that I was uncomfortable working for someone else and losing my own desires to make someone else's dream come true," she says. "I was dealing with a terrible boss in an already terrible environment. I was broke as hell coming straight out of college and I felt that I 'needed' this sign shop job in order to survive. It was like Stockholm syndrome."
When she finally realized it was okay to leave, "it was like a breath of fresh air," Bell says. After quitting, she enrolled in real estate school ("I have been a licensed realtor for four months and I absolutely love it," she says now) and also started to focus on blogging and Instagram full-time. On the platform, she discusses her love of roller skating and her journey with MS, sharing her experiences and providing tips for others with the condition.
These changes, in turn, allowed Bell's MS symptoms to settle down. "I no longer felt suffocated, overwhelmed, and in constant panic mode," she says. "I realized then that stress isn't good for anyone, but also, it can literally make me physically sick! I wanted to avoid feeling like that and putting my body through that again... being my own boss really lightens up the load."
For this week's Self-Care Sunday, we spoke to Bell to learn more about her relationship with her mental health, her go-to self-care rituals, and what she wants doctors to know when treating women with MS.
HelloGiggles (HG): How has your relationship with your MS impacted your mental health?
Kaci Bell (KB): I would say there are good days and bad days. Overall, my MS has influenced me to see the good in things no matter what, and most importantly, that those thoughts are powerful! I experience symptoms every now and then and really try to remain positive throughout the process. I've learned to laugh at myself when I'm not able to walk in a straight line or forget what words to use in a sentence. It's helped me not take myself so seriously and enjoy the experience of being a little different than everyone else. I don't think about my MS very much, but when I do, I always feel so blessed because I don't despise my diagnosis or feel down about it because it's influenced who I am today.
HG: What are some practices or regimens you'd suggest others with MS do if they feel like their condition is becoming overwhelming?
KB: I would suggest getting into the habit of thinking about MS in a completely different way. As far as I know, MS isn't lethal, so all we have is time and our sense of humor! Get in the habit of laughing at yourself. Expect the unexpected—those lousy symptoms are going to show up one way or another, so getting comfortable with the idea of pausing and existing through that moment goes a long way. I also think that ultimately thinking about MS in a positive light makes a difference; thoughts are things, and we are always listening to ourselves.
It's also so important for people living with MS to be proactive in taking control of their health, find the right care team, and seek treatment early.
HG: What do people get wrong about how MS affects your mental health, and what do you want people to know?
KB: I often feel that people who don't know a lot about MS know that it affects the brain, and those same people assume that means we are less intelligent and less capable. That our brains are so messed up, that our thoughts and everything that goes on in our heads is also messed up. But this is certainly not true! I want people to know that MS literally affects all of us differently. We all have varying degrees of disability with this disease, so of course, there will be varying degrees of mental capacity for dealing with such illness. Not all of us are in a slump about the diagnosis and it is possible for us to feel our disease with hope and positivity. MS isn't lethal, but we all try to live our lives to the fullest while we still can.
HG: What physical activities have you been doing lately to help with your MS?
KB: Since my diagnosis, I've really gotten into roller skating. It has helped me stay positive about my diagnosis and challenge the way I use my body. It also helps me get out of my head when I'm having a hard time mentally.
HG: How do you suggest others physically connect with their bodies to feel more connected to themselves?
KB: I would suggest finding an activity that you enjoy that can easily make things about your MS fun, like hula hooping or dancing. Maybe even something more mobile ,such as riding a bike or even yoga. Make it silly! Have a laugh! When you can move your body in ways that are fun and out of the ordinary, your mind starts to enjoy the activity and that makes you want to continue doing the activity and releasing dopamine as we learn to enjoy it.
HG: What form of community care have you been gravitating toward lately? And how do you believe it has impacted you?
KB: Right now, my favorite form of community care that I've been gravitating toward is social media awareness and blogging. Although I don't fit the "norm" of being disabled (since I roller skate often while having a chronic illness, which is quite unheard of), I started a blog where I not only discuss everything roller skating, but I touch on sensitive subjects about MS like dealing with flare-ups. I use my Instagram to talk about my experiences and open up conversations about things we may be experiencing and how we are all coping with different symptoms and new discoveries that I've learned along the way. I've built a brand around my skate journey, but I've also played a part in inspiring others with chronic illnesses to engage with their bodies a new way.
Additionally, I'm excited to share I'll be participating in a first-ever, free #MSVisibility virtual concert featuring a variety of performers and MS advocacy organizations. Be sure to follow the hashtag to learn more in the coming weeks.
HG: How can doctors better support people who have MS?
KB: I wish other doctors would actually take the time to study some people's symptoms and experiences without simply labeling their journey as something that it's not. A lot of the time, it takes people months or even years to get an MS diagnosis, go through recommended treatments, get a second opinion, go through other recommended treatments, and get a third opinion until they finally reach a true diagnosis. Meanwhile, wasting so much time, money, and effort just to get some help. Medicine and treatments should not be rushed in order to see a quota of patients a day and collect a check.
HG: Are there any products you've been gravitating toward lately during your self-care routine?
KB: My self-care routine has been about keeping my face clean and clear. I've been using St. Ives Apricot Scrub to keep my face clean and the little bit of acne I do get at bay. I also love to use my Bath & Body Works Magic In The Air lotions that make me feel so good. It just gives me that extra boost of femininity!
Doing my makeup is probably another one of my favorite forms of self-care. Lately, I've been obsessed with Fenty beauty products. Usually, on my nights off from work I like to relax and give myself a well-needed back massage, and I use my MOICO Back Massager when my muscles get really out of control! And certainly not least, I have really taken a liking to CBD products for the past year. I use products from both Envy CBD as well as Gold Standard CBD. They have oil tinctures and gummies that really help with muscle spasms and overall relaxation.
HG: How do you think self-care looks different for someone with MS?
KB: I think it looks different in the fact that we spend time caring for ourselves medically, whereas most people don't. We are more conscious of nursing our bodies in the best ways we know how, doing our best to rid symptoms with heating pads, ice packs, and alternative medicines. On average, a bit of self-care for someone with MS might involve taking long (well-deserved) naps, taking disease-modifying therapies, getting massages or physical therapy, and rest.
HG: What are some self-care practices that have been bringing you joy?
KB: The practices that bring me the most joy are definitely roller skating, my number one. Petting animals, planting and taking care of plants (#plantmom), spending time with friends, having sex with my partner, doing my makeup, going on dates by myself, and eating all my favorite snacks.