Second-Hand MS

Before Lynn was diagnosed with MS, my experience with the condition was from a distance.  I knew of a third cousin with it that family members talked about in sympathetic tones of doom.  I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully.  I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy,  Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.

Our first appointment with the neurologist was a little over-whelming.  We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…”  Lynn didn’t want to have anything to do with any of it.  He gave it to me; said, “tell me what you think,” and turned his back on the entire thing.  At that point, I believe he was too depressed to let anything in.  He wanted to be in denial and would not even let us say aloud that he had MS.  His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.

…So began my journey of having “second-hand” MS.

Continue reading at http://multiplesclerosis.net/living-with-ms/second-hand-ms/

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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3 Responses to Second-Hand MS

  1. While reading this, I couldn’t help thinking about the times Bill said, “What if I want you.” Often after doing something for him, I handed him the cordless phone or bell and told him to call if he needed anything, but there were times when he only wanted my company. I sometimes sat with him outside or in the living room when he was in the recliner, but now, I wish I’d taken more time to just snuggle with him. In the last months of his life, we decided to sleep apart, but I wish now that I’d just lain on the bed next to him for a bit, especially on his last night at home.

    • I’m sure I would feel the same way. I often get frustrated and want to stop doing what I’m doing but I honestly think I would miss it if I did. I want to be his support and try to help him as much as I can. I hope you’re doing well, Abbie. I expect it’s been a long adjustment for you since Bill died.

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