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More Than Our Story
A Day In My MS Life
Table of Contents
Once a year the world comes together to raise awareness to a disease called multiple sclerosis (MS). According to the MS International Federation, there are estimated to be around 2.9 million people in the world currently living with MS. I happen to be one of those people.
There’s a big challenge I face when I try to raise awareness for MS. My MS story is unique. In fact, every MS story is – and therein lies the problem. To say I know what MS feels like, even while I live with the disease, does a disservice to someone else whose experience with disease is drastically different.
MS is often referred to as the snowflake disease. Just as there are no two identical snowflakes that fall from the sky, a mind boggling concept considering more than 1 septillion (that’s a 1 followed by 24 zeroes) decorative ice flakes fall each winter globally – there are also no two identical cases of multiple sclerosis.
Common MS Symptoms:
The symptoms of MS vary greatly. Here are some of the most common ones:
- Bladder Dysfunction
- Bowel Dysfunction
- Cognitive Changes
- Depression
- Emotional Changes
- Fatigue
- MS Hug (a squeezing sensation around the torso that feels like a blood pressure cuff when it tightens
- Numbness or Tingling
- Pain and Itching
- Sexual Dysfunction
- Spasticity
- Vertigo and Dizziness
- Vision Issues
- Walking / Gait Difficulties
- Weakness
Less Common MS Symptoms:
There are also a myriad of less common, some of which include:
- Breathing Issues
- Hearing Loss
- Loss of Taste
- Seizures
- Speech Issues
- Swallowing Difficulties
- Tremors
Why the wide range in symptoms? This is largely due to the way MS manifests itself. MS is a chronic autoimmune disease in which a person’s immune system attacks the myelin sheath, a protective coating that enshrouds the nerve fibers throughout the central nervous system. Demyelination can occur in the brain and spinal cord. This damage to the nerve fibers leaves scars (also called lesions or plaques) and is where the disease gets its name (multiple sclerosis, translated literally: “multiple scarring”).
This damage to the nerve fibers causes rampant disruption to the flow of signals from the brain to other parts of the body. Signals sent out from the brain are either slowed down, distorted, or halted altogether. It is this disarray in neurological processing that causes all the symptoms in MS. The variety and severity of symptoms is largely dependent upon the location, prevalence, and depth of demyelination.
Different Kinds of MS:
MS gets even more nuanced as there are several different kinds of MS:
- Relapsing Remitting (RRMS): Characterized by isolated attacks of the immune system (or relapses) followed by periods of either partial or full remission (85% of people will start with this kind of MS).
- Secondary Progressive (SPMS): For most people with RRMS, a transition into the secondary phase of the disease occurs in which relapses cease, but disability continues to worsen.
- Primary Progressive (PPMS): Affects about 10-15% of people diagnosed with MS. This kind of MS is typically characterized by a sudden onset of symptoms (or relapse) followed by a steady decline in disability without improvement.
While this summary of MS pathology only scratches the surface, it gives explanation and further credence to the reality that no two MS stories are the same. For one person MS may look like being confined to a wheelchair. For another, it may mean significant challenges with cognitive function. For another – vision issues and bladder issues. It can also manifest in many ways, in which one person could struggle with all of these symptoms (and then some).
For me, my MS plunged me into a precipitous plummet of decline. In a matter of 3 weeks, I lost the ability to walk, started losing my vision, and was wetting the bed every night. My body would tremor and I experienced several heart-attack-like episodes (which were later determined to be severe MS Hugs), tremoring, and seizures.
I consider myself very fortunate today as my initial prognosis of being wheelchair bound never did manifest (at least not yet). Thanks to my unshaken commitment to my faith, rigorous diet changes, and unyielding fitness endeavors I have been able to regulate my disease course to a much more “livable” tone. Yet behind the IRONMAN accolades and muscular physique exists a man that still struggles and wages war against MS daily.
Most of the symptoms I deal with now are invisible to the naked eye. MS fatigue seeks to crush me from the time I wake up until the time I fall asleep. I wrestle with my cognitive acuity that prevents me from staying focused and hampers my short-term memory. I still experience numbness and tingling in my legs, hands, and face. I must stay ever vigilant with my bowel dysfunction and be ready to race to a restroom before I have an accident. I give extra care and attention to the simple act of drinking water as I often choke due to swallowing difficulties. I can’t stay outside in the cold weather for too long as I’ll experience a chronic brain-freeze like pain in my head that is incapacitating.
Beyond my aggravating symptoms, my biggest grievance with my MS story is how different it is. There is no plug-and-play solution that I can offer to others to “fix” their MS or recover like I did. While there are controllable factors such as diet and exercise that can make a big difference – there is no cure for MS. And just because one approach works for one person, it doesn’t mean it will work for the next.
But beyond the grievance lies the beauty and blessing of MS. My MS story has helped shape who I am today. It has given me a new lens on life, a new perspective, a new paradigm to live by. Every day is a gift to be cherished. MS has raised my level of necessity in all aspects of life. MS demands that I bring my best attitude, my best effort, and best mindset to each moment of the day. Though my MS will not relent, neither will I. Whether good or bad, painful or pain free, running or wheelchair bound – the only way to get through my MS is to welcome and accept it with open arms; embrace it.
This is my MS story. It won’t sound or look like anyone else’s and that’s okay. If you really want to know what MS is like, don’t read about it in books or on the internet. Talk to someone who has it. Listen to their story. There are at least 3 million MS stories out there on this planet. Together, we create a beautiful snowfall that shines and reflects a brilliant light on our resolve and undeterred spirit. As long as I still have today to live for, I will continue to strive for the sake of my fellow MS-warriors that fight this battle with me. To them and to all of us: never quit, never surrender, and always…
Embrace the day,
Stephen Glaus
RELATED PROFILE:
Watch Stephen's full profile interview here: Stephen Glaus.
Stephen Glaus
Stephen is a devoted husband and father and the epitome of pure grit and determination. He tirelessly advocates for multiple sclerosis, and shares about his own journey with MS. He is also a three time IRONMAN and Les Mills U.S. BodyPump Trainer & Presenter.
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