Putting Myself Out There

MSAA invited me to be one of their guest bloggers, and they posted an introduction about me to their readers. MSAA focuses on enriching the quality of life of people affected by MS, and they do great work! Pretty cool!  See the post below and at MSAA at http://blog.mymsaa.org/putting-myself-out-there/

Putting Myself Out There
Originally Posted on October 19, 2015 by MSAA
By: Stacie Prada 

Having MS has frustrated me, limited me, knocked me down for a bit, and eventually released me from fears I had that kept me from doing certain things and from becoming someone I want to be.

Since being diagnosed with MS in 2008, things I have done for the first time include: yoga, trapeze, traveling abroad, ending a long term marriage, running for and being elected to public office, walking a marathon, and writing. I’m sure there are more, but thinking through my feelings and putting them to paper has been extremely therapeutic for me.

I figure I put so much effort into learning about myself, MS, and how I can live a fulfilling life that maybe sharing my experiences, inspirations and perspective might be helpful to someone else. Or at least it’s something I can refer to when I need to be reminded of things that helped me in the past that I’ve forgotten.

I’m inspired and motivated by people and ideas every day. Hearing what other people with MS have experienced and overcome helps me ease fears and build confidence that I will be able to deal with whatever cards life deals me. And while I put a lot of effort into my health by eating well, exercising, building relationships, sleeping, and contributing to society, I know that I’m not protected from MS disease progression. If MS limits my mobility and my ability to do things in the future, I want to feel secure in knowing I did all I could to slow my disease progression and build a safety net. In the end I believe it will be my attitude that dictates how well I adjust to any difficulties I may have.

It’s with this motivation that I hope to periodically share blog posts in this forum. My name is Stacie, I’m technically a middle aged woman although I feel young, I work full time, I have MS, and I generally feel good about life. Thank you for taking the time to read this!

Levels of MS Fatigue and How I Cope with Them

I never knew fatigue until I experienced it. Once I did, I realized how different it is from being tired.

I put a lot of effort into noticing when I start to feel fatigued so that I can do something before it gets out of hand. My goal is to manage it, prevent consequences to my daily activities, and preclude exacerbations.  I know fatigue may be experienced differently by other people, so I can only describe my experience as I’ve had so far. This description is non-scientific and for illustrative purposes only.

Level 0: No Fatigue at all.  This is especially exciting to notice after I’ve been fatigued. Realizing fatigue is gone is a glorious feeling. I might feel tired, but it is not fatigue.  Exercise and daily activities may make muscles sore or make me want to sleep, but the effort it takes to move is inconsequential. I will wake after sleeping through the night full of energy.

Level 1: There’s the mild level of fatigue where I don’t really notice it until I stop moving. Movements take more energy than they should. Exercising moderately, budgeting energy, and rest helps me recharge.

Level 2:  It’s a full body exhaustion that I can push through.  I know I’ll pay for it if I ignore it, so I take the evening off from household tasks. Take a B-12 shot or B supplements. Exercise moderately.  It’s counterintuitive, but exercise helps with fatigue.  I’ve found that an easy workout clears my head, helps me sleep, and leads to less fatigue later.  This is only true if my fatigue level when working out is less than Level 3. A good rule of thumb is that if after 5-10 minutes of exercise I still feel fatigued, I’ll stop. Some exercise is better than none.

Level 3: There’s the fatigue during the day when I push through a lesser level fatigue and suddenly realize I need to lie down immediately.  I can push through this, but there will definitely be consequences.  A price I’ve paid in the past is not being able to get out of bed the next day.  At this point only low level exercise like a mellow walk or yoga practice will help. Any rigorous exercise will increase my fatigue, and I may take longer to resume normal daily life.

Level 4: There’s the morning fatigue where I will myself to take a shower and need to be horizontal afterward in order to recuperate from the taxing effort it took to shower. When I feel this way, I’ve learned that taking the day off is necessary to allow me to resume my regular schedule the next day. Every movement feels like I’m trying to run through water up to my neck.

Level 5: This level of fatigue is where I can’t get out of bed. No amount of will can override this fatigue. It may take more than one day to recover from this, and it may be indicative of an exacerbation. I try to avoid this at all costs, and I will do what is necessary to recover because there really is no choice. The body overrides any will I may have. This extreme level of fatigue demands that I stay home, nap, limit energy exertion and practice pausing from life for the day.  See my post on Learning to Pause for more on this. 

Paying attention to the signals my body sends me and discerning between when I can continue or when I need to stop has been an art to learn. It requires constant adaptation and subjective assessment. I’ve been very fortunate that respecting my body’s signals and adapting my behavior has been successful for me so far.

Adapting to My Limitations and Doing a Marathon Anyway

I walked a full marathon. I didn't think I'd ever be able to say that. Before I was diagnosed with MS, doing a marathon was something out there that I thought I would do someday.  After my MS diagnosis it seemed like a goal I would have to let go.

It’s all the more amazing and rewarding to me now since I wrote in my Life List post I had accepted that doing a marathon was something I wouldn’t do in this life.  I thought marathons required that people run them, and my MS symptoms cause too many injuries when I run long distances. Surely 26.2 miles was out of the question now that I had MS.

Drop foot caused me to run off kilter and consistently brought on hip pain and injuries that took months of physical therapy to heal. When I complained that jogging hurt me but I wanted to do running events, my physical therapist responded, “You need to decide if it’s worth it.”  She was wise to let me know that it was a choice I was making. It was then that I realized running long distances wasn’t wise for me anymore.

I decided to focus on other activities I enjoyed including walking and hiking.  It was after a ten mile walk that a friend suggested I do the Portland Marathon where they encourage walkers to participate.  I was immediately excited and signed up in January for the October marathon. Two friends also signed up, and we put together and followed a marathon training program that would allow us to not only do the marathon, but train in a way that would have us prepared and able to enjoy the entire adventure.

We usually upped our distance one mile per week.  With 36 weeks to train, we had plenty of time to prepare.  Internet sources educated us on how to train, and that was terrific given I’m sure we would have over trained if we’d come up with our own training schedule.  We walked one long walk per week and did two to three other workouts each week of yoga, walking or gym cardio and weights.  Sometimes we were ambitious and would increase our miles more than one mile per week.  But we checked in with ourselves and each other throughout the journey to make sure we weren’t pushing ourselves too hard.  The threat of getting sick or injured was enough to keep our drive in check.

We did have some physical challenges to address along the way.  New shoes & socks, icing our ankles and feet after walking, coating our feet with Vaseline before walking, and staying hydrated helped us perform beyond our hopes.  We started our training hoping to finish the marathon in less than the eight hours required.  By race day we felt optimistic that maybe we could finish in six and a half hours.  By the end of the marathon we were ecstatic to finish 20 minutes earlier than we ever could have hoped!

I chalk our success up to pacing ourselves, allowing enough time to train, making steady progress, paying attention to our bodies’ needs, and sharing the journey with good friends. We promised ourselves we would make sure we had fun every step of the way, and we did!

It’s empowering to accomplish goals even when I do them differently than I’d imagined.  MS is full of adjusting expectations for the future, and modifying how I do something hasn’t diminished the enjoyment and sense of accomplishment.  It’s made me appreciate the experience all the more.