Life with MS
So after the exhaustive battery of tests, I am waiting for an appointment with my neurologist to go over the results of said test. This is scheduled for the end of this month, and I am looking forward to going over everything and setting a plan of attack. What am I doing with myself in the meantime?
Well, I’m working on implementing what I already know. I’m doing my best to improve my sleep hygiene, I’m continuing to exercise, and I’m working to gain access to a pool that fits the prerequisites for the aqua therapy I’m going to start as soon as I can.
What else do I have going on? Well, let’s talk about it some. Something that I have hinted at already, and I know is a hot button topic for a lot of people in the prime of their life with MS, is starting a family. Three years ago, my wife and I had no children, and I had deep seated concerns about what life would be like if we had children. What about the energy necessary to have a family? What about falling down? What about falling down while carrying a newborn?
In short, we now have two beautiful sons, and I could not be more thrilled. Is it easy? Of course not! Is it worth it? Absolutely! I feel very fortunate in the reversal of a lot of symptoms I deal with in RRMS. A lot of it is related to being more strict with myself in things I know help, I.E. getting enough rest, eating well, managing stress, and everything else I’ve talked about here. I do have a much more concrete reason to make certain that I do what I have to now, though, as there’s not much wiggle room here, and any misstep is paid for for days. Do I deserve anything less? Of course not, but I find it much easier when I remind myself that I am doing it not only for myself, but for those I love who are close to me. I know I am still far from where I want to be on these things, but on the other hand I feel like somebody flipped the “Super Dad” switch on for me, as I am already capable of physical feats I thought I’d never see again. I don’t think twice about carrying my kids. I take out carts of trash down the stairs in one hand. I could go on, but you get the idea. I never thought I’d have to worry about neurological issues if/when I hit this stage in my life, but to think I could live a life with some semblance of normalcy surrounded by so much love and life is beyond wonderful, and by far the best thing I’ve ever experienced. If anything, I wish it hadn’t taken me so long to get my own life to where I was willing to take the plunge. I know everything happens for a reason in its own time, though, and I have no regrets.
I have been aware that I do better with lists than without them for some time now. It’s a common thing most people that deal with MS are aware of, and probably not news to anyone.
At the cognitive testing, the specialist spent some time harping on this subject. The part of that that stood out to me the strongest was he said he had patients with far more severe neural trauma than I that were still active, productive members of society by spending the first hour of the work day writing up what they were going to do. That is a more extreme solution than I think works for me, but I have gone back to leaning more heavily on planning again, and I’ve already begun to see significant improvements in my daily productivity. I have by no means arrived, but I am going to continue down this road indefinitely, and I highly recommend the same for you too. It takes a little time to find the right balance, but for me the balance is farther into the planning stages of my day than what I was doing. I look forward to increased productivity in the future as I come to a solution that works for me.
I will say that my smartphone has been great with this, even though it is only one of many tools I’m using. I use Android, which gives me access to Google Now. It is nearly universally recognized as the current front-runner in voice recognition and Digital Personal Assistant software fields. It took me some time to accustom myself to it, but now I can set myself reminders including time, day, location, and people, with just a brief sentence spoken to my phone.
Astronauts, surgeons, engineers – These people all do difficult and dangerous things that require a very minimal margin of error. This is achieved though – you guessed it – lots of practice, and lots and lots of lists.
Here is a wonderful talk given by Chris Hadfield on how people in extremely high-stress situations handle things. If you pay attention to the talk about prepping, you know a lot of lists were made and followed.
I live a far more sedentary life than I used to. Growing up, I would spend all day roaming out in the woods, or playing baseball, or canoeing, or other physically active things like that. One of the things I particularly enjoyed was grabbing my bike and taking off down the road, or through the woods.
I have been taking a look at my life, and thinking about what I want it to be like in a few decades from now. My physical activity when I was young has served me well up to this point in my life, but working a desk job and having leisure time spent primarily sitting does not and will not in the future serve me well. But I exercise! Sure, for maybe five minutes a day (see my previous post). It has done wonders for transforming my life. But to be living the kind of life I want in ten, twenty, or thirty years from now, something is going to have to change.
I have been thinking hard for a while now about returning to biking. There are great greenways around where I live, and I haven’t even begun to explore them. I know that a lot has changed in my abilities, but if I go back to biking, it could solve several issues for me.
This weekend I tracked down a bike and borrowed it for just a few minutes, to find out if my current physical ability even makes that an option for me. Initially, it was rough, as I expected. It has been years since I even sat on the seat of a bike, and I expected to be rusty, and I certainly was. I picked the bike up, and tried again. After several attempts, I focused on how staying upright is more difficult at low speeds, and attempted to get up to speed faster to make life easier.
Have you had your leg fall asleep so thoroughly before that when you stand, there is no sensation it it at all for the first minute? It’s like your leg is completely missing. You can still see it there, but when you move it about there is no sensory feedback like you would expect. This is the closest description I can find to what I experienced. I could watch myself falling, see the bike tipping over, but there was no sensory input from my body that I was falling. It was like that part of my brain has just “fallen asleep”, that it isn’t there any more. It doesn’t seem to matter how many times I try again, nothing changes. Yet.
That was my first try. I put the bike away. I found out that the easiest option isn’t one that is going to work for me, unfortunately. I may try again to go that route, but I suspect I won’t see significant enough improvements there to be safe on a bike.
Where am I going to go from here? I do actually see myself as still having a lot of options available to me. The obvious answer is using a recumbent bike, or tricycle, something that does not rely so heavily on my own sense of balance. I do not currently have access to one, and the entrance fee there is higher than what I currently have available for this, but I am going to be exploring my options there. The summer heat where I live is high enough that even with additional stability, biking might still not be a viable option. Either way, this is something I am going to figure out. I will keep updates on my journey here on this site. I can’t wait to see what the future brings!
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.
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.
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.
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!
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.