ELLIE'S BLOG on Living Well with MS

RELUCTANCE

To go with the drift of things.

To yield with a grace to reason.

And bow and accept the end.

Of a love or of a season.

Robert frost

This is one of my favorite poems and many times I refer to it.  I remember all the lines and repeat them to myself when I need them. 

I think it keeps coming back to me because in many ways people with MS live in many different seasons.  It also reminds me of my mother.  And then I think of the summer season's we spent in our cottage on the beach.

Here I am with my younger brother Bill and sister Ruth

Every year when we arrived after school closed we would rush to see what the Fall, Winter and Spring seasons had done to the landscape. Had the ocean storms and the winds drifting the sands changed it. Was the sand dune in front of our cottage higher or lower?  We played all kinds of childhood games on that dune in front of our house. And the height of the dune affected those games we played.

Then we would rush to see how  the brook that ran from the pond to the ocean had changed. When we were young the brook was very important. We learned to swim in it. When we could swim safely in the brook we could accompany an older brother or sister to the ocean to swim. But the big thing with the brook was how deep would it be as it opened onto the ocean. There were times when it's mouth opened onto the ocean with deep water.And then we could dive from the sand banks into the brook. At other times it was just a profusion of rivulets.

So depending on our age the situations could be perfect or disappointing for each of us. And if they were disappointing we would moan and complain until my mom would sympathetically point out we couldn't change what nature does. And maybe we should put our energies into getting around the situation with a little creativity.

We who have MS also have seasons in which we are at natures whim.  And the season's of MS can be very different in each of us and in how it effects our lives. This requires us to be patient and also learn to be creative to help us to go with the flow.

In my case with my current meds I usually have a best ever season which can last for a month or two . I can walk 400-500 steps, my arms and trunk are great and my thinking is good. At this time I can do so much more it's amazing.  I'm in a full remission.

Then I have another season where I can only take a step or two,  sometimes the arms and or trunk are really bad also. And I'm just plain exhausted, cognitively spent as well as really achy.  And that can last 2-3 days or a week or more. I'm in an exacerbation.

Then  a third season where basically I start to get better but it's kind of of 12 to 20 steps, and the arms and cognition get better as well as the fatigue level.  But it doesn't last if I do any activity all.  Rest will help the return of some of what I've lost but never all of it. 

And then there's the fourth season where I slowly get better up to 80 to 300 steps but then the next day I could be down to two steps. But then it's back up again . The same happens with my arms,trunk,cognition and fatigue levels. I call it my up and down season .

I have found that if I try to be as active in my great season when I'm in an up and down season I only  defeat myself. This is the season where I really can't plan ahead. And the one where I probably can have the most disappointment in my life socially.

If I am in the real down season I know I just have to rest and I'm too fatigued to do anything else anyway. However, I know it doesn't last that long and I will eventually get better.

When I'm in my middle type of season where I'm better but not all better I can plan ahead many times to go out and do things if I rest the day before and before I go out.

When you have MS you have to learn to adjust and go with the flow of the season your in. At times this can be very difficult.  Not only in the activities that you normally do but those special extras you hoped to do. It also has a big effect on your family, friends and on planning socially.

I remember talking to an old acquaintance at a preview of an art show at our local college. She knew I had MS (I was in my WC) and confided in me the concern she had of the difficulty she had in maintaining her friendship with 2 old friends who also had MS. She stated she did not want to lose their friendship but they varied so much from time to time it made it difficult to plan. One friend sometimes was walking and the next time in a wheelchair. And with her other friend it was her cognition that varied that made it just as difficult to plan . And of course there was the question when they were good when would the fatigue kick in.

I felt she wanted me to tell her how she could handle it better. I tried to but there's no special way. I suggested to try to understand and go with the flow or drift of her friends disease. Try to be there when they were really not good and let them know you understand and you'll be back when their better. Also let them know that when they're in a really good season you'll try to be there to do things with them.  She looked at me and said: " It's not easy for you and other people with MS is it? "

It's true it isn't.  I was out lately for dinner with my husband and his tennis friends. It was a good season and day for me I was walking with my walker and it was nice. And then a couple mentioned to us that they would like to go out to dinner with us some time. Of course we said we would love to. And we would.  Then of course a couple of days later I went back into a relapse. So I'm hoping they won't call until I'm out of it. Then I don't have to decline and not be able to set a definite date. And if I feel up to it but need my wheelchair they will be people who can just go with the flow of what nature's doing to me.

Have a creative and happy New Year 

ellie