Tag Archive | MS

A Quiet 4th of July

world_spinningKen’s Multiple Sclerosis is a puzzling disease. Everyday is a surprise. Neither of us know whether he’ll have a day free of fatigue or one that is full of it. We hope the different holidays throughout the year will end  up being good days, but as time goes on, we’ve learned MS doesn’t care if we have plans or not.

The Fourth of July this year was a particularly bad day for him. In fact, he fought to keep his eyes open–literally. Not that he was tired. The muscles in his eye lids refused to work, no matter how hard he tried to fight them.

Needless to say, the downtown parade was out. He made me go to lunch at a friend’s home because we are invited every year, and she was expecting us. By evening, he still wasn’t feeling well enough to watch the fireworks–not even on television.

The day was a wash for him. I found myself very angry at the cruelness of his disease because no matter what he feels or thinks, the disease calls the shots. I suppose any serious diseases has the say-so too, but I’m not living with them. I am living with this. I want to shout, “It’s unfair!”

But this thing we call the human condition is not fair. We both accept this fact, so when these days come along, he rests, and I keep quiet and read. It’s called coping. It’s called love.Blog 3-31 003

MS Calls the Shots


This is your body with Multiple Sclerosis.

In Wisconsin we wait for warm weather all year. When it comes, we want to be outside enjoying the sun and breezy days, but unfortunately this is the time of year Ken and I find ourselves indoors keeping cool in the air conditioning.

Why? Not by choice that’s for sure! The hot weather of July takes the sap out of Ken. This behavior is typical for an MS patient who generally has trouble with fatigue, but when the heat comes along he or she becomes a puddle. Here’s what I’m talking about.

One day last week, Ken rose feeling energetic. He made himself breakfast, walked into the living room with the aid of his walker, and within a few minutes his eyes glassed over, and he collapsed in his chair. The next thing I knew, he was sound asleep for four hours. He slept so long, I began to worry there was really something more wrong than just being weary.

This is what life is like when you have MS or when you live with someone who does. Everyday is an adventure with this disease. Things can change from good to bad in a matter of minutes or a matter of days. Sometimes things stay status quo for months. The real challenge is to try to be ready for the next change. Through this uncertain journey, Ken and I have become pretty good at waiting for change.

Living with a mystery everyday is not exciting. Sometimes I just want to throw a tantrum and scream, “This isn’t fair!”  I want to spend my summers with my love like we used to do. . . enjoying art fairs, family picnics, and an occasional day walking around at the zoo.  I’m not asking for much, only a little normalcy in warm weather.

That Four-Letter Word

Which wayAnother grey February day, but my spirits are bright. Snow is coming, but it doesn’t matter. Why? Because I finally found direction.

Yesterday afternoon Ken and I met with a representative from the ADRC — Aging and Disability Resource Center. It was a pleasant visit. Much more pleasant than I anticipated. I admit, some of the questions we had to answer were a little embarrassing, but at the end of the meeting, I felt lighter.

For those of you who’ve been reading my blog for a while, you know my pride gets in my way — on occasion. It’s in my DNA to be ashamed of defeat. It turns out my Grandfather had to accept “RELIEF” during the depression when he was fired from his job. For him, accepting money from the government to feed his family of eight was humiliating. He had fought for years to make it BIG in America as an Italian immigrant. But when both of us were backed into a corner for the sake of our family, we had to put our pride aside and ask for assistance. Liked Grandpa, I am backed into a corner, which gave me two choices, lay down and quit, or come out swinging. I chose the latter. And like Grandpa, I decided it was finally  time to fight for some help.

Ken’s MS and my long-term unemployment has destroyed our financial situation. And through the last three years, things have changed. Now, I must be home to care for him. He can no longer stay alone all day long, so full time employment is out of the question. Like everything complex, on one hand this is a curse, on the other it’s a blessing. After all, look at all the wonderful time we get to spend together.

As the ADRC  interview progressed, we found out we are eligible for financial assistance. We aren’t sure of the nuts and bolts of it all, and there’s TONS of paperwork to wade through, (it is the government, you know) and it will take time. But with guidance of helpful people and learning to utter that four-letter word, HELP, we will get some relief from some of the pressures we’ve been enduring for three years.

So, the next time you have a choice to yell, HELP! or keep quiet, I’m all for the yelling–now that I can utter the word out loud.

Saying that, just remember asking for HELP is a practiced behavior. Don’t beat yourself up if you can’t do it on the first try.