ELLIE'S BLOG on Living Well with MS

I've been thinking a lot about balance lately. Probably because I feel that I'm fighting hard to stay in balance.  When we think of multiple sclerosis and balance safe mobility is what comes to mind.  But the balance I'm talking about is more than just safety in mobility, although that is critically important.

I have found over the years that to successfully cope with the ups and downs and more downs of Multiple Sclerosis having control of balance in all spheres of your life is critical. Control of your mobility, energy, emotions, and being able to do the activities that you want to do make such a difference in your life.

And the latter is what I want to talk about here. With loss of mobility and decreased energy (and that insidious MS fatigue) you lose time to do all you want to do. You find that how you spend your time, what you read, go to see,things you do is so dependant on MS.  When I was young and raising a family and working, gradually I was able to do less and less of what I wanted. My time was eaten up by my family and my work. Before I retired fully at 61 I had no energy left to do much of anything else even when working part time.

When I first retired I suddenly had all that missing time. I found myself reading books that I had to wanted to for years. And to take up activities and hobbies I had given up that I had no time for like gardening.  I also took up learning how to use the computer.I've gradually been writing my family history which I share online. This family history was very helpful when we lost both a younger sister and an older brother within a year.  We share photographs, old family stories and memories. I also use the computer to make my own cards so their more personal.And of course there is e-mail.

These activities are ones I am able to pick up and do when I'm good (in a remission and my energy is up)and when my energy lags the project will still be there to pick up again.  

But the one area I found that wasn't as easy was going back out and being part of a group again or picking up with old friends.  As MS is inconsistent from day to day or hour to hour making plans was and still is difficult .  I was also losing mobility. In 15 years I went from using a cane to a walker to a manual wheelchair then an electric wheelchair.

A former patient of mine who had Multiple sclerosis called me when she heard that I too had multiple sclerosis and asked if she could be my friend.  In our conversation she mentioned that I should not to be surprised if I lost friends. She was right.When you can't plan, are in and out of the social scene and so tired so much of the time it becomes a problem.

Late last winter I changed doctors and meds. Then in the spring I went into a marvelous remission. I was able to go back to using a cane or walker for short distances.  I also had much less fatigue.  This new me decided to use my increased energy to do more with people like visiting my family, trying to renew old friendships and to meet new people.  I never understood the Barbara Streisand song " People who need people are the luckiest people in the world".  Being more isolated and away from people due to MS I now understand.

So when I went into a relapse again in the end of September I fought it. I tried to keep doing things the same as when I was in that wonderful spring-summer remission. Of course I couldn't and I just made myself more tired, achy and miserable. I was walking or wheeling around the house saying I'm just so tired ..I'm so tired. Then I began to think to myself just saying it had to make me more tired! 

Recognizing that a change of attitude was needed I decided to take up meditation again. And while meditating I remembered the Buddhist philosophy of unhappiness. They state that many times we cause our own unhappiness when we cling to what had been  making us happy and can no longer be.

Admitting to myself that yes I was in a relapse ( and the thought that maybe I would never get back to where I was in the summer is what was really bumming me out).  But as I meditated the reality that even though I was in a relapse I was still better than I had been for years. I certainly had survived being much worse. I knew I could use what I have learned during those years when I was not as good.. 

This realization really helped me. I felt I could work on  starting to get back into balance again. And without the baggage of fear of what might be, I knew things would be much easier.

So when I felt that fatigue coming I stopped what I was doing and rested. I didn't wait until I was collapsing. I found that just as little as 15 to 30 minutes could help.  Then I could get up and do some more things.  To be honest I'm not doing as much as I'd like. I'm trying to prioritize what's really important to me and what I can let slip. But the one very big plus is I'm not walking around in a state of exhaustion ready to snap at people all day!  I'm enjoying more what I'm able to do.

A perfect example of how well this can work and help                               you to do what is really  important to you was when I went to church this past Sunday.  We go to an Episcopal church with a sung- Eucharist service.  We stand and  kneel and sit and stand and kneel and sit again and again.  We sing hymns and response's as well as praying  and listening. It's a beautiful service in a beautiful church with wonderful people but it's a physical event for me.  This spring and summer I was able to stand and sing out those lovely hymns I love as well as  participating more fully in the rest of the service.  But the last few times I went I tried to do this which I couldn't. And because I wouldn't admit to myself that I was becoming totally exhausted by trying I missed a part of the service which was important to me. That was "fellowship" going to coffee afterwards and talking to other members of congregation

So last Sunday I listened to my body and when the fatigue started I stopped and sat till it passed.  I still participated in the church service I just didn't do as much standing and sitting, kneeling  etcetera. And I made it over to coffee to chat and reconnect with people.  And then when I came home I took a nap.

We're having my nephew his wife and their two children over for Thanksgiving.  I'm putting this whole rest properly and prioritize routine in place.  If something doesn't get done it doesn't become an epic event. What matters is that I'm rested and there is food on the table(thanks to my son's) and we have a happy day with family and were all rested.

I hope all of you will do the same thing knowing your priorities and what's most important to you and then follow through. Have a wonderful Thanksgiving with your family and friends.

Stay well rested!!    Ellie