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.

“What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments

Articles titled, “What you should never say…” are pervasive on the web.   It seems like these posts focus on how rude people can be, how they are the problem, and how they need to change what they’re doing. I think this perspective gives away our own responsibility to our relationships. It can victimize us in situations where intent wasn’t malicious, and we may have the power to view it in a way that’s helpful to us.

Yes people can be rude and I understand the intent of the articles is to educate people, but the critical lecture approach worries me. I think they can discourage conversation and connection. In my experience most people aren’t intentionally insensitive, they’re just uninformed. Good for them that they haven’t had that experience that would have taught them more about having a disease or other challenging experience.

I’d prefer to encourage the dialogue and allow for grace when people put their foot in their mouth. An inappropriate comment doesn’t have to end the conversation or begin an argument; it can be a starting point.  I also think that telling people what not to say without giving suggestions for what to do instead just silences people and makes them afraid to say anything.

We all have moments of vulnerability and strength. What may feel right as a response in one instance may not feel right in another. I think everyone should be allowed the opportunity to snap once in a while, and I hope my relationships can be at a point or grow to a point where it doesn’t break the relationship. If we consistently snap at people, come back with sarcastic responses or witty retorts, we’re telling people to stop talking to us. And that can harm us by severing relationships and isolating ourselves.

As someone who in the past has been well-intentioned but awkward to friends that are experiencing disease and loss, I sympathize with people who want to say something helpful but don’t know what to say. I look back and see how my reaction to a friend with cancer was concerned and caring but may have come across as pity given my tone and ignorance.

At times when I’d describe a symptom I was having, I’d become frustrated with someone who would always say to me, it’s nothing, it’ll be fine, or it’s not that bad. I finally asked, “Are you saying it’s nothing because you’re trying to make me feel better?”  It surprised me when the answer was yes.  It was a huge shift in the relationship once I understood this, and I wouldn’t have learned this if I hadn’t asked. It validated my experience instead of denying it, and it helped me feel compassion for those that care about me.  It’s easy to assume what those close to us are thinking, because we know them so well.  Checking in and allowing for surprises or alternate motives allows for more productive communication and understanding.

We can get really good at communicating and understanding our symptoms and disease, but we’ll always have relationships with people that don’t get it. I can get frustrated that they don’t have an amazing grasp of communication, understanding or compassion; or I can work on bridging the distance between us.

There may be times when it doesn’t feel worth the effort to talk about a comment made, correct a misconception, or learn more about what someone thinks. I try to think of communication as an investment in the relationship and an opportunity for me to learn something new or gain a new perspective.  

My unsolicited advice to the person with MS on the receiving end of comments or questions: Lead by example for the level of connection you want to have with this person.

You don’t owe anyone an answer for a question that makes you uncomfortable. Ask them why they ask. Or just say you don’t feel comfortable answering that. If it’s just not a good time, you can say you don’t feel like talking about it right now, you appreciate them asking, and you’d like to talk about it another time.

If you do want to connect after being offended or hurt by a comment, consider hearing what might be the person’s feelings behind the words. This might take asking questions about what they’ve said. A helpful non-confrontational response might be, “tell me more about why you think that.”

The table below shows comments said to me about symptoms or my MS with my initial reaction, what I try now to hear instead, and what I’ve said in response. 

The perceived behavior	Actual Comments  said to me	My Initial reaction	What I try to hear instead	What I’ll say
Deny	It’s nothing, you’re fine.	You don’t believe I have a problem.	I’m worried about you and I want you to be fine.  I’m trying to reassure myself that it’ll be fine.	Are you saying that because you’re trying to make me feel better? I appreciate that you care. I hope It’ll all be okay too.
Misconnect	I have that too! Everyone has that as they get older. It’s normal.	You don’t get it. It’s not normal. For me, it’s due to MS.	I have that, I think I understand what you’re going through and I’m trying to relate. I want you to be okay, and I want it to be normal.	It’s true that aging and other conditions can cause similar symptoms.  It’s not normal for people my age to have this, and it can be frustrating to have to deal with this while I’m still young.
Overreact	OMG, it’s so terrible!!!  Your life will never be the same. I feel so sorry for you…	You pity me but don’t want to understand me.	I’m scared for you, and I’ve never had to deal with something like this. I don’t know what I’d do if it was me.	Thank you for caring. This has been a big impact on me and I’m working on doing what I can to live the best life I can.
Silence	Avoidance or awkward pauses	You don’t want to talk about it and/or you don’t care about me.	I don’t know what to say and I’m afraid of saying the wrong thing. I’ll follow your lead.	As you’ve probably heard, I’ve been diagnosed with MS.  I want you to know it’s okay to ask questions if you like.
Diminish	But you look so good!	It must not be as bad as you’re portraying.	I don’t understand how you can look fine but have a serious disease. I thought sick people always looked sick.	I know, isn’t it weird how people who look healthy can be really sick? Invisible symptoms are so deceiving.
Fix it	I know what’s wrong with you, and if you would just (fill in the blank here with a cure, a diet, a medication, …) you’d get better.	You’re not doing enough to fix your disease. If you would do more, you’d be fine.	I care about you, and I heard of something that might cure you.  I really want you to be cured.	I really appreciate you caring about me and passing along information you think might help!  Please continue to pass along things you see (only say this if you mean it). I’ll look into it. I talked to my doctor about it, and his opinion was… I already have looked into it/tried it, and unfortunately it hasn’t held up in studies/ worked for me. There are a lot of ideas out there about what can help. Unfortunately there are a lot of people making a lot of money off sick people.
Pity or Condescension	How (long drawn out) ARE you?  With a head tilt, sad face, and exhaling tone.	You pity me and think my life is over.	I want to connect with you, but your experience is foreign to me and I don’t know another way to talk to you .	Thank you for asking. This has been a big impact on me and I’m working on adjusting.
Blame	Disease is really “dis-ease”.  If you fix your stress or life imbalance, you’ll heal yourself.	You caused your disease.	I’m trying to understand why you got sick, and I want to protect myself from getting sick. I want to help you get better.	That’s a concept that makes a lot of sense, and a lot of genetic and environmental factors contribute to things beyond our control. I think we do the best we can, but sometimes it’s just the luck of the draw.
Disbelief	Unless you fall down on the ground, I won’t believe you have MS.	I don’t believe you have MS.	My experience with friends with MS has been people very debilitated by their disease. You look fine and are more active than most people I know. Maybe you’ve been misdiagnosed.	There are four types of MS, and your friend probably had a very severe type of MS. I put a lot of effort into being healthy and into accommodating and preventing the symptoms I experience. I’m fortunate that it’s working for me so far.

To the person who doesn’t know what to say or is worried about saying the wrong thing.  Say more, not less. Come from a place of curiosity and concern. Allow for the person to not want to talk about it. Certain symptoms are embarrassing socially, and not everyone is willing, able or ready to share such personal information with everyone or maybe anyone yet. Leave space for them to come to you when they’re ready, if they’re ever ready.

Consider saying things like, “I care about you and am curious what your experience is. What’s it like? How do you feel about having MS. How are you doing? I’d like to be helpful, but I don’t know how to help you.”  

I think when we’re able to see beyond the words that are said and put effort into understanding each other’s feelings and perspectives, it can only help us feel supported and respected. And that makes us all healthier and more compassionate.

Pay It Forward: Talking To People Newly Diagnosed With MS

People newly diagnosed with MS are understandably rattled. I try to pay it forward with compassion and by sharing the insight I've gained over the years. It's personally rewarding and hopefully helpful to them.

I met with someone this week that was recently diagnosed with MS. She’s justifiably having a hard time, and I’m glad she sought out the NMSS self-help group. She contacted me and attended our group meeting. We agreed to have lunch following the meeting, and at the end of our long lunch she hugged me and said she felt better. This was the best gift she could have given me.

I was diagnosed seven years ago, and I remember how lost I felt. In 2008 there were web resources, but not the volume and patient interactive groups that exist today. I scoured the local library and web for information, but I felt like anything that I related to was few and far between.  Now the advice online is overwhelming in volume and the range of advice contradictory. I think having someone to talk to one-on-one that understands and is experiencing the same illness is useful.  I hope to help others when they ask.

I’ve spoken with newly diagnosed people a few times now, and I think it’s been helpful that when I talk to them I try to:

·         Listen to them. Ask them about their experience so far. Leave it open. They’ll focus on what’s important to them.

·         Validate their experience. When a person shifts from pre-diagnosis to post-diagnosis, everything is viewed through a new lense. And every relationship they have with each family member and friend is going to change.

·         Offer personal experience in similar situations, but acknowledge that their experience may be different.  Know that what helped me may not be what will help them.

·         Acknowledge that each case of MS is unique and because of that, I think each experience is paradoxically normal. MS is very confusing with a wide range of symptoms. Some symptoms are vague, and others are glaringly affecting. But none follow the cause and effect explanation that an injury provides. A twisted ankle may hurt, and you can conclude it’s sprained. There’s not usually a triggering event that explains fatigue, blindness, numbness, constipation, paralysis, or pain. It can come and go with no way for us to understand how we can stop it or prevent it next time.

·         Each person is on a journey. Not all information is useful or able to be absorbed when everything is new and overwhelming. Pick the most frustrating issue for them, and plant a seed of solution or hope.

·         Ask them as they reflect now if they had symptoms that came and went in the past. They may still be in the midst of an exacerbation, and feeling terrible, depressed, and scared is normal while still having an exacerbation. Especially when an MS diagnosis has come out of the blue. It’s frustrating that no one can predict how long the exacerbation will last, but if symptoms came and went in the past I’d guess that they will subside. I’m 99% confident that this person will feel better again.

·         Assure the person that they don’t need to worry about forever right now. Give it three months to see if symptoms improve. And if symptoms don’t improve in three months, they can figure out what to do then. There's no need to worry now about what may not be a problem in the future.

·         Let them know that life can be better after MS diagnosis. Children can learn to be more compassionate and independent. Relationships can grow to a healthier dynamic. Being forced to deal with the limitations MS demands can also lead to living a life worth loving.  Gratitude for what still is can make for more joy in life.  

·         Offer to be available in the future to talk. They may or may not call. But sometimes just knowing someone would be there is enough.

As I compile this list, I recognize I strive to do these things and I may be better at it sometimes than others. We’re all human.  I’m not the person I strive to be all the time, but I’m getting closer each day.  I may have more to add to this list as I grow and learn more, but this is a good start. I’d love to hear suggestions!

The Lasting Love of a Long Gone Mother

My mother's senior photo with flowers I know she'd love

May 21, 1994 – The day our mother suddenly left this world and our lives changed completely.  We became four newly motherless daughters at the ages of 27, 23, 20 and only nine years old. I still feel cheated that we didn’t get more time with her, but I can feel her loss now without being consumed by pain or resentment.

For a long time I thought people had a hard time with death, but I’ve since realized that people were likely reacting to my raw pain when they changed the subject.  Fortunately it’s been some time since I became able to talk about her with joy and ease in conversation that no longer makes people want to flee.

The biggest change I made that helped me to feel less pain for her absence on holidays and birthdays was to create new traditions. I chose to write letters to my sisters commemorating the occasion and honoring our mother.  The first letters are a bit tough to read because I can see I was suffering even though I had hope. Putting my thoughts in writing and sharing them with my sisters allowed me to feel more connected to them. Suffering alone left me stuck, but reaching out to others honestly and with vulnerability led to a path beyond the grief.

I’ll hear songs or experience something and think about how I wish I could share them with her. She’s been gone 21 years this month, and there’s been so much in our lives she missed. The lessons she taught us by the life she lived and the stories she told still come to mind frequently. When she’s in my dreams, it’s lovely to interact with her in new conversations.  With changes and accomplishments my sisters and I have, I like to think about what our mom would have thought. I know she’d be extremely proud of each of us, and I’m proud of the person she was and the legacy she left.

A lesson I learned when my mother died is one I try to live by still – make sure each of my relationships is in a place I’m okay with if one of us is gone suddenly. It doesn’t mean all of them are happy, but at least there isn’t something I would regret if I never see them again.

My mother died in an airplane crash. There were no goodbyes or preparations for her absence. But my relationship with my mother was in a place where we loved each other, we had fun together, and we were honest with each other.  As a mother she created that relationship dynamic, and for that I’m immensely grateful she left me with our relationship in a good place.

Getting Through Uncertainty and Fear After Being Diagnosed With MS

I will feel good again, I will feel good again, I will feel good again.  It was the mantra I would say to myself that kept me going when I was filled with fear and uncertainty after my sudden MS diagnosis.

I’d felt good before, and I’d obviously had MS a long time by the time I was diagnosed. So I’d tell myself this new information and these symptoms would be temporary punches to the gut. I’d recover and feel good again. I had to replace the statement that I was saying to myself nonstop, “I have MS.” Can I still do this? Should I be doing something else to feel better, to improve my life span, and quality of life? I don’t know what to do, and I could be unintentionally doing something that’s making it worse.

In yoga or at the gym, I’d realize my self-talk was consumed with, “this is affecting me since I have MS. I can’t do this as well or at all because my nerves are damaged and balance is harder.” My body temperature rising makes me lose feeling in my feet or makes me clumsier. I wasn’t sure if these symptoms are normal, temporary, or making my MS worse.

I obsessed and was constantly thinking about how I had MS. Because I thought about it all the time, I assumed my friends or coworkers also saw my MS when they looked at me. It surprised me to learn from friends that they forget I have MS, because my MS was so, so prominent in my thoughts all the time. It was terrific feedback. I had intentionally tried not to talk about it all the time to keep it from becoming my identity, but it consumed me. I felt successful when I learned their perception of me was not overshadowed with MS.

Telling people what was a limit for me and what wasn’t was challenging. I felt like they didn’t trust me that I wouldn’t break, and I felt they didn’t believe me when I said I couldn’t do something. They saw me active and looking normal. Numb feet, tingling limbs, or just not feeling quite right aren’t visible.  There’s a fine line between being supportive and coming across as not believing it’s real and something I need to tend to differently. I can’t will myself through the symptoms. The body doesn’t care how much I want to do something. It only responds when I respect its limits and build capabilities to expand what I can do comfortably or with a consequence I can live with.

Along with the mantra of “I will feel good again,” I’d give myself a pep talk.  “I don’t know what I need to learn or think about differently to live with this, but it’ll happen.” It helped me to stay open to lessons, believing they’re around us all the time. I trusted that when I’m ready to learn the lesson I need, the opportunity will be there for me.

It was years before I one day realized I wasn’t internally thinking about my MS all the time. It takes the time it takes. It’s a loss that doesn’t go away. Once I was able to change the things I could and look at how this gave me permission to improve my life, it lessened the feeling of overwhelming loss for what I thought my future held. And it’s empowering to feel normal again. Different but normal.