Staying positive with MS

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MS and stress

Stress is a huge topic. There is no way I could cover it completely in one post. It is significant though, and I would be remiss to ignore it. Stress is already well known to aggravate symptoms in MS. It goes hand in hand with fatigue. As a culture we are obsessed with it. With so much already available, what do I have to add that has not already been said?

I can share my own experience. Nobody else can do that.

I am coming out of a month of higher than usual stress from myself. I am also right in the middle of a personal life skills project that includes learning the differences between good stress and bad stress, and how to deal with them.

Good stress is the kind of stress in which you are in immediate physical danger and your body kicks into overdrive to handle the situation. I got my taste of that at the end of January when a silver ford pickup truck ran a red light and collided with my vehicle. I became very keenly aware of my surroundings and everything felt like it was moving in slow motion high definition for a short period of time. I swerved and braked hard, confining the impact to the front left corner of my car. I got out with minor bruising that went away in a matter of days. I was able to handle the situation and the events that followed. My car, on the other hand, was totaled. After everyone else had gone and I was waiting for a tow truck, my system came crashing back down, and I was able to find a “normal” state again.

What transpired after that initial event is a perfect example of good stress. Good stress peaks, helps you to handle a situation, and then reverts to a “normal” state of functioning. Bad stress is when you go into that heightened state, yet for whatever reason you are not able to revert to your normal relaxed state of functioning. I spent over a month dealing with insurance, rentals, dealerships, insurance, and the works. It made getting to work hard, which was stressful. One of the worst ice storms in recent history crippled our entire area, which slowed everything down and made it more stressful.

What does all this have to do with MS?

Well, dealing with MS is another prime example of the second “toxic” kind of stress. You don’t know how your disease will progress in the future. With RRMS you don’t know if the new symptom that cropped up is permanent or just visiting. You don’t know if/when old symptoms will crop up again. You never really know for sure what’s in store for you that day. It is one long string of points in which your mind and body want to ramp up into a fight/flight mode, but there is never anything to tell it when the danger has passed, and it’s ok to relax again. This is where the life skills I’m learning come into play.

There are two major ways to view anything that happens. They are permanence and pervasiveness. They are applicable to both good things that happen, and bad things that happen. They can be written in a graph form, which
makes it much easier to see.

permanence_pervasiveness

Note this image is not original with me, but from a source I’d like to remain anonymous.
Basically we want to view good things in the upper let hand quadrant, and bad things in the lower right hand quadrant. For example,

I chose to view the collision as “non-permanent” (My car is gone. I can get a new one). I chose to view it as non-pervasive (I was involved in an accident. It does not mean I am a horrible person. It does not mean I have to be miserable in all areas of my life. I don’t owe that to anyone or anything.)

Again, what does this have to do with MS?

Be aware (mindful) of your own response to the symptoms that you are dealing with. Let’s use some concrete examples. Say you fall down in the middle of the sidewalk, or crossing the road. This is an unfortunate thing to have happen, to be sure. Once you have dealt with the immediate situation (Am I injured, am I about to be), let it go. It is one thing that happened at one point in time. Don’t give it more than that. (“I fell down while walking”, not “I always fall down while walking”) Let it have low pervasiveness in how you view the world. (“Well that was unfortunate”, instead of “I am horrible at walking”)

I will finish my story where we started. In spite of the difficulties, I now have a new (to me) car that is almost exactly what I wanted. In dealing with everything in between the initial event and driving my new car home, there were a lot of hiccups along the way. By being mindful of how I viewed what happened and what was happening, I was able to maintain a much more positive outlook. I allowed myself to return back to a “natural” state, instead of getting caught up repeatedly in a high-stress mode. Stress can be a significant influence on MS, and I like to believe that as I continue implementing these skills it will make for a longer, healthier, more enjoyable life, in spite of whatever diagnosis I may have.

Sleep

One of the major key factors in MS for most people is fatigue. It is both a symptom, and something that aggravates symptoms.

How is that fair?!

The most obvious answer to fatigue is sleep. On an off day, I  might sleep for eight hours, then take an two or three hour nap, and still get to the end of the day exhausted. This is not a sustainable lifestyle for myself, or for most anyone else. Obviously quantity is not the answer. It does not fit with a full life not dictated by MS, which is what I choose to live.

I’ve found myself drinking more coffee and tea at my current job than I ever have before. I know this is a common solution for many people who just can’t seem to get going in the morning. Studies show that, while there is a short boost in alertness from caffeine, the crash at the end of your caffeine high is longer than the high was, and consuming it too late in the day can interfere with your sleep that night.

I have other days when I fall asleep quickly, sleep soundly for seven or eight hours, and wake up fully rested. That tells me that it is not the quantity of sleep that helps deal with fatigue, but the quality of sleep you get. This subject is getting more attention these days, and there is a lot of information available if you do a search for it. The thing that was most useful for me in sorting out what works best for me was being an early adopter of WakeMate, a wristband that would track your sleeping and wake you at the optimal point in your sleep cycle. The most useful part of the product for me, though, was how it recorded your sleep patterns and made them available for analysis later. With this, I was able to experiment with all of the different solutions for sleep, and have direct measurable feedback on what works for me and what doesn’t. While the exact hardware I used is no longer available, a quick search returns a number of other newer options that provide the same functionality. I highly recommend looking into one of them if you want to learn how best to deal with fatigue. I will go into more detail later on what methods worked for me.

MS Awareness Week

A big Thank You to the National Multiple Sclerosis Society for letting me know about this!


MS Awareness Week  is THIS WEEK (March 2-8) and people everywhere are creating meaningful connections stronger than the ones that MS destroys.

During this special week, the Mid South Chapter urges you to take action to help others learn more about MS and what they can do to make a difference!

In what ways can YOU make your connections count? You could try to….

-Attend a MS program with likeminded people and friends

-Join Walk MS in your local community

-Create actionable awareness by becoming a MS Activist and writing your legislators a message explaining to them why MS related legislation is important

-Donate to someone participating in the Savannah Challenge Walk (March 6-8)  Mid South’s team, MS Busters

-Tell someone about MS; post on your Facebook page, send an email, or tell a friend why YOU connect with the Society and others

-Host a DIY event to fundraise dollars that go to supporting research and those living with MS

For more ideas and informaiton, visit www.MSConnection.org and get involved in MS Awareness Week TODAY!!

Exercise

This is a very crucial part of my well-being.

On January 2nd, 2014, I watched Conan O’Brian interview with George Tekai. Conan asked George Tekai how he stayed so fit. George Tekai said he does 100 pushups every morning. http://teamcoco.com/video/george-takei-shows-off-mad-push-up-skillz I realized at that moment that if a 76 year old man could do this, I had no excuse. I decided this was what I was going to do.

I decided I was going to do pushups every day, 100 of them. Pushups have never come easily for me, even at my best. Initially I could only do five or ten at a time. I set some rules for myself. It didn’t matter how many sets it took. I just had to work in 100 of them.

I told nobody what I was doing. I worked them in throughout the day, and the next, and the next. I decided I’d try it for a week. After two weeks of doing this, it started to come easier, and I was completing them in fewer sets. Then I decided to shoot for a month. Then another.

After several months, I was doing them in two sets. I would do my first set of fifty, and then finish with a second set. Even when I felt like I could keep going, I deliberately quit at 100. I was getting to where I could do my first set of 75.

By the end of the year I’d missed a few days, but I had some days when I could do all 100 of them in one set. I was faster, and my form was better. I was knocking out all 100 of them consistently in two sets in less than five minutes. I saw visible improvements in my body, and felt significantly better. Not only did I have the physical exercise, but it did wonders for my psyche.

In August, I ran into several things and had talks with a few people that got me to thinking about my lower body as well. One of the great things about the pushups is that I could do them any time, anywhere. I didn’t pay for a gym membership. I didn’t have to schedule time. If only there was a way I could do the same thing for my legs.

Enter squats.

They don’t have a sexy name, and they aren’t glamorous, but I started working them in. Wow! One of the things that has changed a lot for me with MS is my walking gate, and not in a good way. Initially it was rough getting started, but the squats have been a major key in improving my walking abilities. In short, I had been falling down several times a day on average, but with the exercise and a couple other things (that I will cover in later sections), that happens rarely, and always includes external circumstances that would have made me fall when I was a fully able-bodied person.

So where am I now? This year, in 2015, I have set myself some goals. I am not doing pushups every day. I want to give my body a chance to rebuild between workouts. This is my current schedule:

* Monday: 50 pushups, 1 set
* Tuesday: 50 squats, 1 set
* Wednesday: 50 pushups, 1 set
* Thursday: 50 squats, 1 set
* Friday: 50 pushups, 1 set
* Saturday: 50 squats, 1 set
* Sunday: Rest

To help me not miss any, I have set up a reminder on my phone that has the details for what to do that day. So far, it is going very well!

Hello world!

As someone diagnosed with MS almost ten years ago, I have fought being a member of the “MS Society”. There are as many stories about MS as there are people that deal with MS, each of them unique. Unfortunately so much emphasis in the community has been on tragedy that most of the time I engage there I come away feeling more depressed than before I went.

This is a space for my story. There are hard bits of my story, but that’s not the point here. I’m not here to tell you about what I lost, or who I used to be, or how hard everything is. This space is about life, about success, about what works, about how great it is to exist in this amazing and wonderful universe.

I hope in doing this that I will find other people that want to grab this fleeting time we have here and wring it for every last drop they can. That’s what I am here to do.