Weight, Exercise, and Lifestyle

Less than a year after I was diagnosed with M.S., my extended family celebrated Thanksgiving.  During the previous Thanksgiving, I was stumbling around and holding onto furniture, so this one was markedly better.  But with the holidays, comes stress, and with stress M.S. flair-ups inevitably follow.  I had been fortunate enough to avoid any major flair-ups since my diagnosis.  The ones I experienced were minor and temporary; an occasional bout with imbalance, weakness, or fatigue; sometimes slight banding.

That day, after a full Thanksgiving dinner, the banding set in.  This time, it was stronger, tighter.  M.S. patients have described this sensation as a tightening of the muscles around the abdomen and chest that is often comparable to a heart attack.  As a matter of fact, many have made that trip to the E.R. fearing that very thing.  You may have difficulty breathing and find that the pain is incredible.  (Whoever dubbed it the M.S. hug should be taken out and wrapped in tight metal bands until they beg for mercy.  It is as much like a hug as a house fire is like a birthday candle.) 

Yes, it scared me but I recognized it for what it was.  But here’s the thing; after eating a huge meal, the banding pushed every bit of fat around my waist to my stomach area.  It was truly uncomfortable.  Talk about trying to hold your belly in!  This began to happen more and more frequently, to the point where a student in a class where I was subbing asked me when my baby was due.  I was 47 years old, so you know I wasn’t planning on having any more babies.  Before Christmas, I decided that if I wanted to get through this I’d have to lose some weight; the less fat there is to push around, the less discomfort I’d suffer through when it hit, right?  Also, the more weight you carry, the harder your muscles and joints have to work to support it.  Basic movement becomes a lot harder than it has to be. 

So I found a diet that worked for me.  That sounds a lot easier than it was. In fact, if you’re like me and have always loved good food, then you know how hard this can be.  I lost 50 lbs. on the “Flat Belly Diet” and have managed to keep it off for about five years now.  It helped a lot, and boy did I LOVE the compliments I got.  I still band, especially when I’m tired or stressed, but it isn’t as hard to handle now.  The added benefit for me is that now my blood sugar and blood pressure are also in control.  Those were a big problem before.

Along the same line, exercise also made a difference.  M.S. robs you of strength in your limbs and causes spasticity especially around the joints.  I have a hard time with walking very far or running at all for obvious reasons, so I began riding an exercise bike for 30 minutes every night just to keep my knees flexible and my legs strong, but it had the added bonus of a decent workout.  I also do yoga each morning for about 30 minutes.  It’s a simple routine that helps me to focus, relieve stress, and strengthen my muscles.  It also helps me manage pain and increases my flexibility.  I’ve always been about as flexible as a steel rod, so this is a big thing for me.

I’ll spend more time with healthy foods, yoga and other workouts on another blog, but here’s what you can hopefully take away today. 

1.       If you can manage it, keep your weight down.  It’s tough, but it really makes a huge difference in the way you feel.  Find a diet that you can stay on, and once you lose the weight, maintain it with sensible eating.  I try to eat a healthy diet with smaller portions now. I still splurge on deserts but with some common sense it works.

2.       Find a workout that you like and can keep up on a regular basis.  I love my stationary bike because I can listen to a book on audio while I’m riding.  I love yoga because it keeps me strong, flexible, and much calmer.  By the way, if being with others makes it easier to work out, then by all means, go to a class or a gym!  If you prefer to do this privately, there are lots of available workouts on Hulu, Netflix, DVD, etc.  

If you have a busy lifestyle, and most of us do, then you really have to make an effort to incorporate these into your daily routine.  But please don’t put them off. Your doctor can help you decide the best way for you to handle diet and exercise.  Do yourself a favor and be proactive.  As an M.S. patient, if you don’t take care of yourself, then someone else will have to do it for you.

Multiple Sclerosis...My Story

Aug. 12, 2013

This is a blog for MS patients and those who love them.  I hope to share ideas that have made my life easier as an MS patient as well as the stories of others.  Please remember that nothing replaces a good relationship with your neurologist.  MS is extremely varied in the way it affects people, so what works for me may not work for you; I can only tell you what I’ve learned and hope it helps.

Let me start with my own personal story.  In 2005, just before a trip to Disney World with my family, I began feeling a slight numbness in my toes.  As with most illnesses, I hoped that if I ignored it, it would go away.  It didn’t.  Instead, it began to creep into my calves.  I mentioned it to my doctor at my regular checkup and he told me it was likely to be some form of neuropathy, which can occur for no good reason.  Still, over the next eighteen months, he sent me to a rheumatologist, a neurologist, and an endocrinologist.  None of them could put a finger on what was happening. 

In the meantime, the numbness was working its way into my knees.  It was a partial numbness that didn’t stay with me all the time.  By the middle of 2006, my writing career was taking off and my books were selling. Schools were frequently requesting that I visit to talk to kids about literacy.  Since you can’t do that while teaching in your own classroom, I made the painful decision to give up teaching to write full-time. Before I left my classroom permanently that spring, I realized that I could no longer reach the end of the eighth grade hall without feeling as if my legs were going to give out on me.  My doctors were still trying to figure out what was going on.  Then my balance went wacky.  I couldn’t walk across the hallway without tripping or falling sideways. I’d spent hours self-diagnosing on the internet with no luck.  A couple of times, my research sent me to the words, Multiple Sclerosis, but I figured that just wasn’t possible.  Nobody in my biological family had it.  What were the chances? 

Whatever was wrong with me, I decided that if this creeping numbness continued into my heart and lungs, I would die.  I must be dying. I began to put my affairs in order, thinking that my kids might have to attend college without me to back them.  My husband would be left alone to handle all of the stuff we had dealt with together over the years.  Of course, I didn’t tell anybody that at the time.  They’d think I was crazy, right?   I went back to the neurologist, and this time he decided to do an MRI.  That was loads of fun.  I’ve since learned to tolerate them without much grief.

I remember that all of these tests were happening over Christmas holidays and it was hard to be jolly with all of that hanging over my head.  In early January, Dr. Cunningham told me that I likely had MS and he’d confirm it with a spinal tap.  I cried when he told me, but my husband was there to hold my hand.  Dr. Cunningham asked me, “What do you know about MS?”

Images of wheel chairs and crutches and death raced through my brain.  They were the only visuals I had about the disease.  I’ve always believed that if you get the worst case scenario out in the open air, first, the rest is not so hard.  “Sometimes,” I blurted out, “you can die from it.”

He gave me a gentle smile and shook his head.  “Not so much,” he told me.  And with that out of the way, it got easier.   An infusion of steroids brought me back to a semi-normal state, though I’ll always have some numbness and imbalance.  I told my friends and family, not surprisingly, with tears.  They responded in kind.  Some looked at me with pity; others with a knowing expression that said, “You will get through this.”  I liked the second one better so that’s the one I decided to go with.

These days, I experience banding (a tightening in the chest also called the MS Hug), numbness in my throat and legs, occasional dizziness, sensitivity to heat, and of course, the ever-present, imbalance, and fatigue.  Thankfully they don’t all happen at once.  None of these, however, have stopped me from going through my daily routines.  

In this blog, I want to try and share my journey through this disease and its daily battles, most not seen by others.  We’ll talk about symptoms, things that have helped and the experiences of others.  Please feel free to comment.  I want to hear from you.