Learning and Experiencing My MS

Over the years, I've shared my MS story and experiences multiple times, primarily through my writings. My audience has reached many people - from fellow MS-ers and others living with chronic diseases to empaths; those who are caring, curious, and interested in hearing the struggles we encounter and how we manage and cope with our challenges just to understand or maybe provide help or support in some way. My knowledge of MS and my story has snowballed since my 2007 diagnosis as studies and awareness have evolved along with my disease progression and life changes.

The day I was diagnosed

When I received my diagnosis of relapsing-remitting MS (RRMS), I knew very little about MS. I was told by my neurologist that multiple sclerosis is an autoimmune neurological disorder that is a serious, chronic disease, but not fatal. And at present, it's incurable. I was advised that there are maintenance medicines I'd be prescribed to manage my current symptoms, but more importantly, I  needed to select and begin a disease-modifying drug (DMD) right away as its purpose is to slow the progression of the disease. And I was to fill a script for a cane that I should begin using immediately for my safety. This day began my journey of learning about and experiencing my MS.

I continue to learn more about MS each day

I eventually learned several more facts that I began to share in my writing, such as: MS is very unpredictable and complex.

It's referred to as the 'snowflake disease' because it affects those with it differently; however, we are all still one as I talk about in my article X's And O's.

Uncommon symptoms

Something else I learned is that in addition to the more common symptoms like fatigue, vision loss, numbness, weakness, and impaired mobility, for instance, there are some that are quite unusual such as:

• The 'MS hug' which isn't warm or loving, but more like a tight, painful squeeze caused by spasms in the muscles between your ribs.
• The 'creepy crawlies' which I talk about in my writing that I titled Catching Feelings With ‘Sensational’ MS. Sensory symptoms stem from distorted brain signals making you feel abnormal sensations.

Coping skills

I've learned that each person has to find ways which work for them when Living With ‘This’

Coping skills are very important for a healthy mental well-being. I share some of mine in my article What's In Your Toolbox?

MS affects so many aspects of life

What I've experienced, in addition to a plethora of symptoms and disease progression over the course of these near 14 years, are the effects of the aforementioned such as:

• A loss of independence which I talk about in Independence Valued
• Changes throughout my career and my ability to work, like when MS Brought Me Home Instead
• My ability to drive which I lament in I Don’t Drive Anymore
• Severely impacted fine and gross motor skills
• Parenting, discussed in Mothering In Spite Of my limitations.
• Living in a society that sometimes just doesn't 'get it' and makes the disabled less than comfortable merely offering the The Bare Minimum as it relates its accessibility

The world doesn't stop for MS

Through all that I've learned clinically about MS, what life is with MS, and the myriad of experiences over the years, a large revelation is that The World Doesn’t Stop for MS.

So, is my living in vain?

No. It has all revealed to me that Finding the Value in Change was indeed necessary to develop an understanding on how to live with MS. That's why sharing our stories is paramount. Over the course of our journey, what we've learned and our experiences can be a testament to someone.