Many of these trips I made in a wheelchair.Īs I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. I can honestly say that I have, and will continue to have a fulfilling life with my husband of thirty-seven years and my 32-year old son. But amazingly for me, in the end each difficult decision resulted in a good outcome. It helped that I am a positive person with an “I can do this” attitude.ĭifficult decisions had to be made-giving up my career, having only one child, going on disability, having to move out of my house… It was hard. It took time, but I learned to manage my MS well. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life.
Truthfully, I hate MS-it’s interfering, unpredictable, and invisible in so many ways. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more… Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.įlash forward to present day, 35 years later. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. I was only 25 in 1980 when my MS symptoms started. Posted in Advocacy, Awareness, Relationships & Communication | Tagged Living with MS, MS Education, MS information, MS relationships, Multiple Sclerosis, Multiple Sclerosis Awareness, Multiple sclerosis books, understanding MS An MS Journey Often, many things get done differently, partly, or not at all.īut how do you explain all this? Should you try? Do they really want to know? If you think so, maybe take the opportunity to say, “not as much as I’d like, I can use some help.” Or is it easier to just say one thing, and then ask in return “What do you do all day?”Ĭommunity Advocate for Throw in MS and the time and energy it takes to do a task double or triples. Life without a chronic illness is challenging enough. We have kids and grandkids, chores to do, errands to run, households to maintain, finances to manage. It doesn’t matter whether we are in a wheelchair or not. We folks with MS endure invisible things like the fatigue, depression, numbness, and weakness that make life complicated.
It conveys a message that “I can do it all is well…” Then if superwoman starts to fall apart, I’m asked “What’s wrong with you?” Like most people with MS, I do things on my own as much as possible and strive to maintain independence. It’s like they’re wondering why I got disability from the government or why I don’t want to go out somewhere. “So, what do you do all day?” Even when I used a cane, then a walker, and now a wheelchair I usually “look so good” and am smiling and perky. And then there are the “one-uppers” who are more interested telling a personal story that is far worse than your situation.īut occasionally, someone asks me that question in a way with a certain tone that will get a rise out of me. For example, there are the people who want to give advice about all kinds of things, which can get annoying if they really do not understand MS. There is no sense in getting into the details of what a typical day is really like it would probably make them uncomfortable, speechless, and sorry they asked.īesides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can lead into unwanted conversation. One of those subjects will usually switch the conversation toward another direction. If it’s a casual acquaintance, I give them a few of the basics: I rest intermittently, exercise or swim, read, write, and volunteer when I can. Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?” It depends on who’s asking and what mood you’re currently in. From time to time, the question surfaces, “What do you do all day?”
My occupation is now “retired” after being on long-term disability for years.
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