MS Brought Me Home Instead of...
“This is not a great way to start the new year.”
This text was the cold response received after advising my employer I’d be unable to return after the Christmas holiday break due to suffering one of the most painful MS exacerbations since I was diagnosed approximately 3 years prior.
How it all began
Randomly, early one morning in November 2001 it all began. A plethora of symptoms over a number of years such as weakness, pain, fatigue, random bouts of incontinence, heat intolerance, numbness, tingling, and more. The problem wouldn't be determined until July 13, 2007...when I was diagnosed with Multiple Sclerosis.
Happily employed
At the time of diagnosis, I'd been happily employed for nearly three years as an Admissions Receptionist/Secretary. My Executive Director and entire department were very supportive after my diagnosis as I dealt with my condition and its effects. After five years, I applied for an advanced position in a different department and received the promotion. I was proud of my achievement and excitedly became the Administrative Secretary to the Dean. Unfortunately, MS may remit for a while, but it never goes away. After a while, I found that the new department wasn't as supportive as my previous; however, I loved my position and excelled at it so that made it bearable for me....until that last exacerbation.
An exacerbation changed everything
I maintained as well as possible although MS and my superior ‘fought’ me every step of the way. The doctor, my children, family and friends watched me suffer emotionally and physically and strongly encouraged me to consider disability in order to preserve my health, wellbeing and quality of life. I absolutely hated to relent to this horribly selfish disease, but on October 21, 2013, I went to work in so much pain so as not to give ‘ammunition’ for further strife. My Occupational Therapist asked me ‘when is enough enough?’ When I left at the end of the day, I never returned. My neurologist and staff were ecstatic when I called the next morning and advised them to submit the disability paperwork.
I wanted to work
I wanted to work. Hence, I did not share their excitement. Though, I must confess.. The first morning of not feeling like I’d already worked a full eight hours plus overtime - before even leaving my home? Divine!
At a follow up appointment with my Neurologist, he mentioned that I may qualify for assistance in areas of personal and home care to make some things easier for me. My insurance confirmed it: I qualified for caregiver services. I was reluctant. I'm not a Senior yet!!
Choosing a home care agency
After several calls and a bit of research, ironically, I selected an agency entitled Home Instead. The irony in the name was the correlation with my personal situation: Having to be Home Instead of work.
At any rate, in order to avoid bitterness and unhappiness, I weighed Multiple Sclerosis/being home in a pros and cons manner.
Cons: MS brought me Home Instead of...
Letting me remain in the workforce
Giving me a choice
Letting me be me
Pros: How being home has added positives to life
Being Home Instead of working has added many positives to my life such as people that I may have not otherwise met if on a different trajectory. (“Sometimes people come into your life for a moment, a day, or a lifetime. It matters not the time they spent with you, but how they impacted your life in that time”). The energy that the assistance saves me is insurmountable.
The best aides are like compassionate friends
As for me and my vibrant, 47-years-young self, the best aides are more like compassionate friends simply being helpful while visiting socially anyway. Perceiving their presence as companionship makes me feel more comfortable. Some are naturals, and Home Instead has truly provided me several memorable CAREgivers that are/have been assets to me and my home.
If for nothing else, I can thank MS for enlightening my life with new, interesting, helpful, and kind people in my life through (being) Home Instead (of working)!
Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.
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