Living With MS: My Everyday Life
A few years ago I did a post talking about my story of living with multiple sclerosis. This year marks 10 years since I was diagnosed. Since then, I have created habits to help me live more comfortably with MS. You may be curious to know what tools I use to keep my nervous system in check, what my daily life is like with MS, and what other life expectations they are for someone living with this chronic anti-inflammatory disease.
Can You Live a Normal Life with MS?
When I was first diagnosed in 2014, I definitely felt the weight of having a lifelong disease would be very heavy. I was young and had not dealt with any major illnesses in my life so the idea of being a patient was very foreign to me. Because of my faith, I never questioned whether or not God still had a plan for my life, but I can imagine that this question does come across the minds of newly diagnosed. Although I was afraid of the unknown and the possibility of disability, I clung to the Jeremiah 29:11 verse that promises that He has good plans for me.
How does MY MS Diagnosis affect everyday life?
Everyday life can vary for someone living with MS depending on many factors. For me, I have to prioritize good sleep and regular exercise to keep myself feeling my best. Because I’m on an infusion therapy regimen and have implemented practices of my own at home, I would say that the majority of my days right now are great! I have days where I feel the residual damage from previous attacks and my mental clarity and mobility are noticeably different. There are other days when fatigue makes normal day-to-day tasks next to impossible. However, I would say that for the most part, as long as I nourish my body with good food, get good sleep, and don’t overrun myself, I feel great! I see a therapist regularly and she keeps me accountable which I am so grateful for.
What am I Doing at Home to Boost My Wellbeing?
Living with MS can be a roller coaster if you’re not taking charge of your wellbeing every day. Here are some of the holistic approaches for MS symptom management that I have incorporated into my daily routines to make sure that I am prioritizing my mind, body, and emotional health.
Pilates
At the beginning of the year, I became obsessed with doing pilates mat workouts at home and it has been so good for my muscular strength and regulating my nervous system at the end of the day. When I began incorporating mindful Pilates practices for my MS symptoms I found that the workouts are low-impact and challenging at the same time and it forces me to be mindful of how my body is feeling from head to toe. I’m hooked! And dare I say that my core is stronger than before I gave birth? This is my favorite instructor and I feel like she’s my friend in my head because we work out together virtually every night.
Sleep
I am an early riser by nature, but I know that I need to get a solid 7-8 hours of sleep to get the restoration my body and mind need. I make it a point to start winding down every night and prioritize comfort so that I go into a deep sleep quickly and stay asleep! I love my heated blanket to get cozy under and I cannot live without a great mattress and sheets. The Hatch Alarm Clock is great too for slowly waking you up rather than jolting you out of your REM cycle.
I cannot stress enough how much of a difference a good mattress can make in your sleep life! Currently, we have a Stearns and Foster mattress and it works beautifully for both my husband and me. It took a long time for us to find the perfect fit being that we’re on the opposite ends of the spectrum in size (tall and small!) but both of us sleep like babies on it. It’s totally been worth the investment. Even if you don’t want to spend thousands of dollars on a mattress, you can probably find a lower cost mattress to replace your old worn out one or a great memory foam topper.
Aromatherapy
Something small but so impactful is using aromatherapy to help my mental clarity and emotional energy. I have always had a strong sense of smell and so good or bad smells have a big impact on me. I have various tools that I use throughout the house to keep it smelling fresh and in my resting areas, I like to warm candles with calming essential oil blends. I even have a travel diffuser that fits into the cupholder of my car and is powered via the cigarette lighter that allows me to plug in and have an aromatherapy session while I’m on the go.
How long does MS take to disable you?
Contrary to popular belief you can live a long life without substantial disability due to MS. The medical community has made great strides in research to yield disease-modifying therapies that are effective and sustainable for many living with MS. Multiple sclerosis does progress over time, but with early diagnosis and treatment, the progression can be minimal.
You may be wondering if MS will paralyze you and that is a complicated question to answer! Some MS patients may experience temporary paralysis, as in my case I did in 2017 when I experienced what they call “foot drop” and had to use a cane to be able to walk because I could not feel my left leg. Thankfully, I was able to receive steroid treatments to regain the feeling in that leg, and have been able to walk normally ever since.
Will I ever feel normal again with MS?
The short answer is NO. The long answer is that you can feel good within your new normal of multiple sclerosis. For me, I thought I was in the best shape of my life until the day I lost 90% of my eyesight. Ten years later, there are days that I do feel “normal” or how I felt before my diagnosis, but my eyesight will never be what it was before, AND my body has naturally aged 10 years as well. So I think when people ask the question “Will I ever feel normal again with MS?” they are looking to feel how they felt at the age and stage of life they felt at their diagnosis. But the reality is, the clock doesn't stop and our bodies are wasting away, MS or not.
Conclusion
Let me end on a high note by saying that I have a full, beautiful life! I have a wonderful husband, an amazing daughter, a thriving business, and lots of love in my life. I lack nothing, and I thank God every day for that. Being diagnosed with MS was certainly a pivotal moment in my life, but since then it has only been up. Yes, there have been bumpy roads to travel on the way up but I can honestly say that my life is better today than it was 10 years ago when I heard that draw-dropping diagnosis. According to WebMD, the life expectancy for people with MS is 75.9 years old, on average, compared to 83.4 years old for those without. That 7.5-year difference is similar to what other researchers have found recently. I plan to live out the rest of my days to the fullest and see the goodness of the Lord while I’m here!
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