I’ve noticed quite a few articles on MS popping up on my AOL homepage recently. Some good, some bad, but almost all of them a little too…um, I guess optimistic is the word I’m looking for. Today’s MS article du jour is Living Well With Multiple Sclerosis. I admit, it’s probably not a good time to be writing about this since my MS is giving me problems right now, but I saw this article, read it, watched the video, and none of it elicited much of a response from me except maybe, “yeah, yeah, I’ve heard it all before.”
And then I read the comments and they finally pulled forth a reaction, especially the first one from someone named Dave Teems. His story is eerily similar to mine; diagnosed late in life, early retirement because of the disease, and as Dave says, “I LOL when I see this stuff”–he’s referring to the video and articles that all seem to paint such a rosy picture of dealing with MS.
Don’t get me wrong, I know it could be much worse, and am thankful it isn’t, but sheesh, I wish these people would tell the truth about what an MS patient goes through. Like right now, I’m sitting here with a patch over my right eye because my vision in that eye is…wonky, that’s the only word I can think of to explain it. Not blurry exactly, but…wonky and it’s easier to focus with only my left eye. Vision problems seem to be the most chronic symptom of my MS.
I say MY MS, because that’s what it is. Given the nature of the disease, every single person who has it will experience symptoms that are unique to them and the symptoms are rarely the same from day to day. I’ve often said the only thing predictable about MS is it’s unpredictable.
Add the vision problems to the almost daily fatigue and I’m here to tell you MS is not a walk in the park. Sure, you can live with it but at times it can be extremely hard. So, I know exactly how Dave feels and I agree totally with him when he says about the video:
“…the disease is not the pretty, cut the veggies on the board that the video makes it out to be. I LOL when I see this stuff. This may be that Woman’s life, but it’s certainly not mine.
And then further down in his comment:
“…the issues that I have with the video are similar to the issues that I have with the National MS web site. They “Paint” MS as a disease that is some how very livable, non-toxic, and more of a bee sting on your life than what the real truth of MS is on one’s life.
It ain’t all music in the background……summer breeze’s and butterfly’s out the window. Talk about the REAL effects of the disease. Like digestive issues, plumbing issues, constant fatigue, MS pain, cognitive issues, ect.”
It’s almost as if he’s reading my mind. MS definitely isn’t all summer breezes and butterflies out the window…but the article does get one thing right, if you find the right coping mechanisms, it is possible to live a full life–well, maybe full isn’t the right word, more like, a good life. I agree with all the tips the article gives but I think the one thing they neglected to mention might be the most important thing; your support group. Having a good support group is essential because it’s the people in your life that make the disease bearable.