Embracing Change

In the last three years so much of my life has changed.  

My beyond two decades long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strived to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and fortunately I succeeded. 

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be.  Diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to, “embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

• Uncertainty for what the next step was or how to decide
• Being afraid that following that step would lead to an outcome I feared
• Being overwhelmed from the quantity of things to deal with at that moment
• Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
• Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change: 
With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following: 

1. Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
2. Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
3. Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
4. Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
5. Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending. 
6. Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
7. Prioritize based on importance, deadlines and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
8. Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
9. Set realistic expectations and ambitious dreams.
10. Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy. 
11. Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
12. Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.

Triathlon Lessons and Exercise Limits with MS

My sister and me feeling relief and pride
after finishing our first sprint triathlon

I’m trying to find tips on training with MS.  My first instinct is to Google triathlon training with MS. So far I’ve found people that do triathlons, but they don’t really share the nitty-gritty mechanics of how much to train and when to back off. I’m inspired by their stories, but I’m having a hard time converting their experiences to guidelines for myself. I want to know if overexertion can hurt me by contributing to an exacerbation. 

Historically people with MS were advised not to exercise hard. Now the experts suggest it’s fine to exercise hard, but pay attention to your body and don’t overdo it.  I’m trying to find that sweet spot of training and performance where I improve but don’t have adverse consequences. “Don’t overdo it” is vague and hard to apply to my life.  

For me, my obvious MS symptoms include numbness and fatigue. When I push it harder, I can experience foot drop and increased numbness that encompasses my entire body from the neck down with aching in my arms and hands. 

In hindsight I can see pushing myself in the past led to injury, never-ending fatigue and exacerbations. I injured myself at gymnastics when undiagnosed foot drop lead me to land with my big toe under my foot more than once after doing front handspring step-outs. It took eight weeks for the tendon in my foot to heal and prevented me from being able to do a lot of activities.

I found the NMSS has a very helpful brochure “Exercise as Part of Everyday Life.” It provides a lot of good suggestions, and one that I find especially useful is to rest following exercise. They say, “Fatigue that lingers after one hour of rest is a sign of having overextended.”

I’ve taken to setting my timer on my phone to see how long symptoms last after a workout. I set the timer for 30 minutes so that I can remember to check in with my body and see if the symptoms are still there. If they haven’t dissipated, I set the timer for another 30 minutes. Usually my symptoms are gone within an hour. 

I recently competed in a sprint triathlon in Golden, Colorado where it was hot and the elevation was 7,800 feet. Given it was my first triathlon and I live and train at sea level, it was tough! By the time I started the 5k my body went numb (as usual) and my arms and hands also went numb (unusual during exercise). My symptoms lasted 2.5 hours after I finished the event. 

Tonight after jogging 4.5 miles my numbness lasted 2.5 hours, but I think it’s because I’ve been fatigued and having more stress this month than usual. I probably pushed it more than I should, but it’ll be good to see what my fatigue level is tomorrow. 

My research is motivating me to train for an Olympic Triathlon which is about twice the distance of the Sprint Triathlon I did last month. I’ll track my fatigue level and the time it takes for MS symptoms to subside after exercise. I’ll see if I’m able to increase my performance while keeping symptoms from exercise limited to an hour. I think reassuring myself that I’m not doing damage to my health by exercising hard will be a huge part of succeeding with this. I also know that monitoring how I’m feeling and being honest with myself about how I’m doing will be key to staying healthy and pushing my boundaries. 

The challenge will be finding the balance between recognizing and respecting my body when it’s saying “enough” and not fearing symptoms as indicating disease progression. I think I can do it!

Why Did I Wait So Long? Considering Advice, Rethinking Success, and Removing Barriers

Sometimes it seems that advice for better health sounds like we need to do more, be better, and just generally suck it up buttercup.  I’m not impressed by stories of people saying, “If I can do it, anyone can do it.”  It completely ignores the fact that the other person had a challenge and may not have been able to do it at a different phase of their life.  It also may be something that they won’t be able to maintain for the rest of their lives. It basically ignores the individual circumstances of our own physical health, lifestyle and obligations.  We all have different demands and limitations, and we should only compare ourselves to where we are now and where we want to be given our interests and preferences. That said, other people’s stories often inspire and motivate me to take the next step on something I’d like to accomplish.

After my MS diagnosis, I read the suggestions to swim and do yoga.  I realized that I was very reluctant to do yoga, but I didn’t have a specific reason. I’d tried yoga videos, but they didn’t hook me. Later I realized that my reticence was likely because it seemed like it would be admitting that I was giving up on doing gymnastics. It seemed like accepting defeat. Once I went to a yoga class years later, I loved it so much I couldn’t believe I’d waited so long to try it! To be fair, I was busy. I was active doing other things. Life was full and doing yoga seemed like another thing I “should” do instead of something that I would enjoy.

More recently I started swimming, and it took me a while between knowing it was a good idea and actually going to the pool.  My reluctance to swim was more based on proximity, convenience and feeling slightly intimidated about all of the associated unknowns.  While talking with a friend about swimming, I shared that I was starting to think about my exercise schedule as a two week or monthly schedule instead of weekly.  With this approach, I could aim for doing certain activities once every two weeks or once a month.  That goal made it suddenly desirable and motivating for both of us to go to the pool.  By reducing the idea of success, it removed the barrier of over-committing or setting myself up for feeling like I’d failed if I didn’t continue. Once we got to the pool and swam a few laps, we were a bit giddy about how good we felt, what an excellent workout it was, and how well we each slept that night. Again, why did I wait so long to start swimming?

I’m not going to dwell on the past, but I do want to learn from these experiences. If something interests me, next time it might be good to think about the following:
1. Can I try it once without committing to a regular schedule?  It’s not all or nothing, and it won’t be failure if I decide not to continue.
2. Do I know someone who does it and will give tips about what to expect? This can help reduce feelings of intimidation or nervousness about new surroundings, people or experiences.
3. Did I used to do it and enjoy it? If so, why wouldn’t I now?
4. Do I have a friend willing to go with me? This makes for great bonding and mutual encouragement for healthy habits.
5. Do I need special clothing or equipment? Try goodwill or other second hand shops for inexpensive gear so that I’m not out much money if I decide not to continue it.

MSAA advises people with MS to consider swimming and yoga for good reasons. They’re easily adaptable to different skill levels and physical abilities. They both are a bit meditative for me, and I’m relaxed even after intense workouts. They work lots of little muscles in my body in a gentle yet strengthening way. Plus, I always sleep better on days I’ve done them. I love when I incorporate good habits into maintaining my health even when it takes me a while. I hope to be able to keep yoga and swimming as part of my ongoing activities even if they’re only a few times a month. That’s still success.