“We’re all social creatures.” -Social Media Monthly Magazine
In order to say what I want to say here, I first need to go back in time….
When I was first diagnosed with Multiple Sclerosis in 1987, the world of MS was a much different place. After learning of my diagnosis, I thought, “What will I do now?” I was strung out on steroids and always alarmingly famished. My heart was constantly palpitating. I couldn’t sleep, yet I was overwhelmingly tired all the same time. I now had a chronic illness that I knew nothing about. I felt horrible, and didn’t know who to talk to about how I felt. My doctor had told me to go home and rest until the next flare-up happened. I felt lonely, isolated, discouraged and disconnected from the world. It was horrible and surreal. I went home, lay down on my bed, took out a book and started reading as if nothing happened. It was the beginning of my MS journey.
Then someone told me to call The National Multiple Sclerosis Society and request information about MS and being newly diagnosed. When I finally called, the person at the other end of the phone was cheerful, upbeat and kind. She helped me understand what the Society’s mission was, and went to great lengths to assure me that whatever questions I had, they were always there to help. She also suggested I join a local support group so I could interact with others like myself – a way of socializing while learning about the disease I now had. She gave me the name and telephone number of my local support group leader and wished me luck. When I called the group leader, she told me she would no longer be conducting the group, and asked whether I’d be interested. I said I’d love to. And so my journey took a first step.
I led this group for a few months, bringing local speakers to talk to us about MS – ophthalmologists, neurologists, chiropractors – they were all well received. It was through these doctors that I heard about a wonderful MS Center that provided care for the whole person – neurologists, nurses, psychologists, therapists – a place to help you - as well as your family’s - MS needs. I jumped at the chance to be part of such a place. I am glad I did.
The MS Center not only provided a place for my physical needs but also my emotional ones. Being a nonprofit I decided to get involved with their fundraisers, which included a group of young professionals. I met many wonderful people during this time – people who have forever touched my life and to whom I am forever grateful. But, as we know, life always changes, and it did.
After getting married and having a child I moved to the suburbs and became, by choice, a stay-at-home mom. I loved every minute of it. But, as your child grows and requires less and less of your time, you begin to feel a bit lonely and isolated (at least I did). By that point my MS had worsened and I experienced daily overwhelming fatigue. I was unable to work a full-time job while caring for my family and myself.