MULTIPLE SCLEROSIS
UNIQUELY UNPREDICTABLE
My name is Charlotte Raejole. I am 32 years old. I was diagnosed with Relapsing Remitting Multiple Sclerosis in January 2020. This is My starting line. My story. My journey. My Words. My perspective. My life reimagined, with the mess of MS. Re-inspiring myself & others through re-discovering a new me. A me with MS.
May we all be blessed and be a blessing. Mais Oui.
My Journey.
My symptoms, diagnosis, and process.
Demanding Self-Awareness, Self-Accountability, and Self-Advocation.
How would I define Multiple Sclerosis?
MS, is an auto-immune disease that impacts individuals from pre-diagnosis to death. It typically affects the nerves in the brain & spinal cord, causing neurological signal interruptions. The protective layer around nerves (myelin) is attacked by the immune system and begins to “demyelinate”
It can cause problems with vision, balance, muscle control and/or motor functions. This disease effects each individual differently. It is uniquely, remarkably unpredictable.
Self-Advocating.
Your health is your privilege and right to stand up for. Self-Advocating for your needs, wants, your life and your future is crucial throughout this journey.
Beyond Treating [BEAT] the Disease.
Eating.
What you eat is at the core of your health. It is important to learn what your body needs in order to ensure you’re approaching your treatment with a well-rounded regiment fit for your body.
I personally adapted into a plant-based vegan diet as I learned what my body needed to feel strong & healthy.
Vegan doesn’t mean deprivation. It is simply substitutions with clean eating in mind.
Plant-based isn’t easy but choosing whole-foods with fewer ingredients / limited processing gives me the fuel I need.
Exercising.
Working out looks different with MS. It is not just about endurance or strength. Now you have to add in balance, mindfulness, and cross-training.
Keeping your body MOVING is more important than ever.
I used to run 5 miles a week, and go to the gym 3-5 days per week. Now my approach has evolved into just walking 35-45 miles per day, and practicing yoga to focus on balance, muscle control, and stability.
Your movement is more than “weight loss”. It’s about regaining or maintaining control over your disease.
Self-Care.
Your body will start to tell you what it needs… if you listen. If you honestly, openly, and intentionally promise to LISTEN to your body, self-care becomes a seamless process.
Sometimes it is sleeping in, or NOT going on that walk, or having tea instead of coffee.
I love getting massages to relax the tight muscles, but self-care is more than “treat-yo-self”. It is about hearing your body ask you for what is best vs. feeling it scream at you through the pain.
Outward Communication
Relationships
Family, Friends, Partners, etc: Be open, Be patient, Be Supportive. This is a journey for them too. They’re learning what you need, and everyone plays a different role in the care-giving / support process.
Some are listeners, or distracters, or inspirers. Some people bring the ice cream, wine and movie. Just be welcoming of how people show their care and support.
Work-Place
I strongly suggest being completely open and honest with your employer and colleagues. You spend most of your life with these people. Don’t hide yourself, your needs, or your diagnosis.
Your workplace should be a safe and welcoming space. It is both illegal and immoral to be unaccommodating and unaccepting of medical issues.
Social Media
Express yourself. Be yourself.
Don’t be afraid to post your needs, to express your hopes, to be sad, angry, empowered, strong, proud, or more/less.
Everyday will be different. Everyone’s experience’s will be unique. It’s important to never feel forced to hide or create an image, post, status, or quote that is inauthentic.
Personal Life
Use your voice. Stand up for your dreams.
Not every moment needs to be about the journey. Be comfortable & confident in the silence and in the sharing.
GLOSSARY
CHARLOTTE’S DEFINITIONS
Auto-Immune Disease:
A condition in which your immune system mistakenly attacks your body.
When the immune system mistakes part of your body, like your joints or skin, as foreign. It releases proteins called autoantibodies that attack healthy cells.
Hope:
The offering of faith without a promise. The knowledge that it is all unknown and our faith, hope, prayers, and attitude are all that we may have to help us get out of bed.
Trust in the unknown, and the belief that whatever comes, you will over-come.
Cure:
A solution to a disease or problem. This would permanently put you into a remission state with limited future risk of relapse or required treatments.
Fear:
The terror of planning a future that is now even more unknown and un-promised than before…
And somehow greeting it with a hug and recognition that fear is not meant to control you. It will not age you. It will not keep you from your life. It will simply prepare you.
Respect Fear.
Treatments:
A variety of options to support the body in reversing or stalling the progress of the disease.
Oral, Injectable, or Intravenous options are offered to treat MS. The specific regiment, cadence, and form of these depend on the stage, type and individuals preferences.
Strength. Strong.
The acceptance in the lack of control, and the truth that you’ve never been in control. Commitment to taking it one bad day, one relapse, one blessing at a time.
Relapse:
Specifically with Relapsing-Remitting MS, there are periods when few or no symptoms are felt or visible.
A relapse can be visualized as a roller coaster. There are stages of calm and stages of spikes. Some spikes are aggressive, others are slight and more manageable.
Passion:
The drive to live your life without limits. The desire to live each day as if it were your last.
The art of knowing you’re incredible. You’re blessed. You’re more than this moment, or this week, or this disease.
Types of MS
Relapsing-Remitting
Relapses and Recovery
Intermittent periods of relapses that subside, with full or partial recovery, and no disease progression (worsening) between attacks. Each relapse may vary with new symptoms or a worsening of older symptoms also called attacks or exacerbations.
The relapses can last hours to days depending on the severity. Some may require an ER or hospital stay in order to recover quickly and fully.
Secondary Progressive
Progression & Relapse ongoing with periods of no symptoms.
SPMS follows an initial relapsing-remitting form. Approximately 50% of people who are diagnosed with RRMS will eventually transition to a secondary progressive course in which there is a progressive worsening of neurologic function over time. SPMS can be characterized at different points in time as either active or not active, as well as with progression or without progression. Relapses with obvious attacks or appearing Asymtomatic, yet the brain shows an advancement of the disease.
Primary Progressive
Consistent Progression
Viewed as the most aggressive and least treatable form, this is a gradual but steady progression of disability from the onset of symptoms, with few or no relapses or remissions.
Loss of function and mobility with a steady and sometimes rapid decline depending on the treatments effectiveness at “slowing” the progress.
MS Awareness & Chronic Illness Disclaimer:
Each warriors journey and needs are uniquely unpredictable.
The content discussed and advised within this website is not intended to be a substitute for medical advice, diagnosis, or treatments. Please consult with your physician for specifics related to your personal process.
— Thank you