Tuesday, October 31, 2017

Real MS Profiles: Meet Kathleen G

Kathleen G. was diagnosed with MS in 2006 after a very long year of testing. We spoke with Kathleen about her MS. Here is an excerpt from our discussion.

Q: How has MS impacted your life?
Kathleen: My life ended while I was waiting to be diagnosed. My brain didn't work right anymore and I couldn't do my job. I couldn't do any job because I didn't know how I would feel from one day to the next. My kids were in high school, middle school, and elementary school. I couldn't keep up with them. I was so emotional that they lost a lot of respect for me really fast.

Q: Have you made any conscious lifestyle changes due to MS? If so, have they affected your quality of life?
Kathleen: I went back to bare basics. Moved out of a big house that I couldn't get around in to a tiny one-bedroom apartment with utilities included. Something finally clicked inside me. I focused less on stress and trying to do what I should be doing and instead be OK with doing what I could.

Q: What are your greatest joys with MS?
Kathleen: I was so happy to just know what the heck was wrong with me, I didn't care what it was. At least I knew, and no one could say it was all in my head anymore!

Q: If your MS were an animal, what would it be and why?
Kathleen: A sloth—because that's how I feel most of the time. And because MS is ugly and dirty with even more disgusting twists and turns the more you learn about it.

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RealMSProfiles: Kathleen G

Tuesday, October 24, 2017

What Do I Mean When I Say I'm Fine?

Living with a chronic condition, such as multiple sclerosis, brings with it a heavy load of emotional, physical, and social challenges. The symptoms alone can be perplexing and are never the same between two people. Lately, there’s one social challenge that has been on my mind—how to respond to the question, “How are you?”
When in a group setting, I almost always respond with “I’m fine,” or “I’m good,” without thinking about it. An upbeat “I’m fine” is automatic. When in a one-on-one setting, I may pause and consider how exactly I want the conversation to go. If I’m with a very close friend, I might expand my response and go into more detail, regardless if the update skews positive or negative.
When talking to my husband, I want to be honest but I also know how much he wants me to feel well. Depending upon what type of support I need at the moment, I might allow my empathy for his feelings to color my response. I don’t like to feel as though I am dumping all my crap on him. But when I need extra support or understanding, I feel safe in sharing what’s really going on and how I feel about it. When I tell my husband “I’m good,” it generally means I feel confident that I can manage things at the moment.
Earlier this summer, I was experiencing increased pain due to knee osteoarthritis and was seeking care from my orthopedic doctor who prescribed a series of injections. My mother-in-law has had her own knee problems, so she felt sympathy for what I was going through. I visited her following one of my knee injections and she asked how I was. My response was a neutral “I’m okay.” Her brow furrowed and she replied, “Not good, then?” “No, I’m doing fine,” I insisted. Her experience colored how she heard my simple words.

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The Many Shades of I'm Fine

Friday, October 6, 2017

Remembering Life Before MS: What I Miss Most

My multiple sclerosis diagnosis took multiple years. It wasn’t a quick affair. Years separated early attacks, including five years between a case of temporary blindness from optic neuritis and the loss of the use of my left hand and arm which finally led to a diagnosis. During those years, my life was evolving as well.
Before MS, I was actively building a career as a freelance musician in the Washington, D.C., area. At one point, I was teaching a weekly schedule of 44 private students while also performing in at least two or three concerts each month. The demand upon my time and energy was tremendous.
Since MS, I have become a wife, writer, patient advocate, speaker, consultant, moderator, medical reviewer, and new Bike MS participant. I will always be a musician and still teach private lessons in my home studio. My schedule is just as busy as before, although I am engaged in different activities.

What I miss most:

Chest-thumping sounds

I miss the tremendous sensation of the sound waves produced by 100 other musicians on a symphony stage traveling through my body during a performance. The joy of listening to perfect harmony and stylistic precision up close and personal. The mix of overtones in the ears that stimulate the brain in a most satisfying way. There is nothing quite like it.

Separation of work and home

I miss that satisfying feeling of coming home after a long day of lessons and/or rehearsals to take my shoes off, sit on the couch, and chill with some late night television. With clearly defined boundaries, both physical and mental, of what is work and what is not work, it is nice to feel the separation between activities.
Now, I work from home. As a writer and community moderator, I can be “at work” 24 hours a day, anytime of the day. I find myself with my laptop computer in my recliner toggling between projects for hours at a time. And with the potential cognitive problems associated with MS, it becomes difficult to stay focused on any one project.

Hiking and crunching leaves

As a graduate student, I lived not far from beautiful Brown County State Park in Indiana. Hiking was particularly fun during the autumn, when leaves of many colors covered the ground. The combined sound of rustling leaves in the trees and boots sweeping through blankets of leaves on the trail was particularly satisfying on a cool, crisp morning.
Now, I need to be able to see any obstacles on the ground or risk catching my toes on the tiniest of surface imperfections. Tripping on air has become one of my special talents since living with MS has impacted sensation in my feet. Walking on any path that is covered with leaves, stones, or debris poses an extreme tripping hazard.

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Three Things I Miss Most About Life Before MS