MS Relapses: An Evolution of Perspective

By Stacie Prada

Multiple sclerosis relapses are scary for the symptoms they bring, and they’re overwhelming for the individual prognosis. Sharing our history and perspectives on relapses can help each of us gauge how we’re similar and different. It can show us how we are at different locations on similar paths or how we’re not on the same path at all. Anticipating how long my path is, what I may encounter along the way and how quickly or slowly I’ll reach each phase helps me put today in perspective and plan for the future.

Years 1 through 5 after MS Diagnosis were full of relapses, and my primary goal was to not have a relapse.  Those years were full of stress, confusion and frustration. The amount of information to learn and apply was staggering. The reliance on doctors to provide testing and assessment of whether I was having a relapse or not made me feel helpless. My health journals overflow with information to help me make sense of my body. Each relapse felt like failure.

Year 5Monitoring MS Symptoms and Trying to Avoid Relapses
I started blogging, and my lessons learned became more accessible for me to find later. This one is a go-to resource that reminds me to pay attention to what my body needs while accommodating what life requires. 

Year 6I Feel Like a Rock Star!
I was declared “stable and in remission.” I reached a point of confidence where I felt like I could finally tell if I was having an exacerbation or not. I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t. I’d learned my body enough to know which symptoms were normal for me. I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 

Year 8When is it an MS Exacerbation?
I documented and shared my mental checklist for relapse self-diagnosis with examples. I still read it whenever I wonder if I’m having an exacerbation.

Year 10Relapse Management
People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen. This post includes 13 Guidelines to follow that serve me well daily, then and now.

Year 13, Present Day – Symptoms without relapses: I look back to achieving the highly sought-after status of stable and in remission at year six with fondness and appreciation for the feeling of success. I envy my naiveté thinking that without relapses I’d be safe from disease progression.

The truth is nerves with old lesions can function for a while and give out much later. Some nerve function can repair, but it can also decline causing symptoms to worsen long after the relapse that caused the lesion. 

The majority of people with MS start with relapsing-remitting MS. The statistic that about half of people with MS transition to Secondary-Progressive MS in ten years is based on a time when disease modifying medications didn’t exist. Since these medications are intended to reduce the frequency of relapses and delay disease progression, I’m hopeful I’ll stay in the RRMS phase or take much, much longer than ten years to enter the SPMS phase. Differentiating between what is possible, likely or probable is tough. There are no guarantees, nor are there inevitable outcomes. 

With or without relapses, MS is with me and will shape my future. What I can do is keep doing what I’m doing. Keep learning, monitoring, adapting, and factoring my health into my daily decisions and long-range plans. Appreciate the people on this journey with me, and make sure to have fun along the way. Take very good care, all.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share Button

Identity, Humor, Intelligence, & Chronic Illness

By Stacie Prada

Living with a chronic illness that progresses and has no cure has made me hyper aware of how I view myself and others. Faced with potential physical disability and cognitive decline, I realized how much of my identity was based on what I can do, say and accomplish.

I remember my early years navigating acknowledging I had multiple sclerosis. The long list of symptoms and conditions that can result from MS lesions is frightening. Cognitive changes scared me. They can affect a person professionally, compromise analytical and problem-solving skills, and end a career. They often change personal relationships, and I wondered if they would change how I interact with people. 

These scared me, and in that swirling jumble of symptoms, possibilities and impacts, I worried what it might mean for my personality.  I worried it would change how people see me and how I see myself. 

Would I lose my sense of humor and intelligence? Would my personality become something different? Would I like who I become?

Identity

It turns out I am becoming more serious and intentional, and I’m also keeping my quick-thoughts and silliness. MS integrated into my identity.  It didn’t displace it. MS is a big part of my life, but so are all of the other aspects of my being. 

I haven’t lost my sense of humor, but I have become clearer about why things make me laugh. Something I experience or observe may make me chuckle to myself, and whether I share it with the people around me depends on the situation and relationship. Anecdotes and observations on living with a chronic illness can ring true and boost connection with some, and they can make others uncomfortable. Sometimes a modification to how it’s told can make it relatable, and other times it’s worth waiting to share with a person who already understands.

Being silly can sometimes be seen as immature or flippant. Growing older, gaining confidence and learning every day helps me share my thoughts more and worry less about what people will think. If someone interprets me differently than I’d like, I’ve gotten better about not owning their opinion.

I’ve watched friends experience physical and cognitive impacts due to illness and aging. Searching for the right word to express their thoughts can take longer, but it’s also because the right word matters to them.

Intelligence is not the ability to retrieve a word or speak quickly. It’s understandable yet misguided to presume communication equals comprehension and intelligence. I’ve learned through the years and many friends that the ability to communicate or retrieve words have no relationship to a person’s intelligence or understanding of things.

When a person takes their time to find the word that accurately captures what they want to convey, I’m often rewarded with a perspective and insight I hadn’t anticipated. It encourages me to honor the person and the conversation by staying quiet, interested and unhurried.

Curiosity and not rushing a conversation are crucial. Not finishing a sentence when they’re searching for the word reaps rewards. I may think I know what they’re going to say, but often they surprise me with more depth, cleverness and humor than I’d anticipated.

If I could talk to the newly diagnosed me from 13 years ago, I would tell her this:
Living with chronic illness affects everything, but MS will integrate into your identity in a way that matches your personality. Your intelligence, humor and identity will evolve, but they will be what you make them. You’ll gain insight into a world that teaches you about others and yourself. The experience will make clear who you are and who you want to be in this life. Through all of it, you’ll still be you.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share Button

Day Trip Outings

By Stacie Prada

Living with MS can lead a person to avoid doing things outside of the routine. Dealing with unpredictability can make a person avoid additional inconveniences and uncertainty.

When my gut reaction is to think something is too much effort, it’s good for me to think about why I’m resisting. There might be a good reason for resistance, but knowing the cause is helpful. If it’s rooted in avoidance or fear, I want to challenge myself to identify what I can do that would offset the what ifs. 

What if it’s not worth the effort? What if I go somewhere and my MS symptoms rear up? What if I need something and I don’t have it or I can’t get it?

Living well with MS requires knowing yourself well, respecting and adapting to health needs, and planning ahead. All of these life skills are well-suited to successful and enjoyable outings, and doing new things can add excitement and fulfillment to any life. Day trip outings are perfect for experiencing the joy of travel while keeping the comfort of sleeping at home. 

You do you. If you don’t want to go somewhere or do something, don’t!  But if you want to do some day trips and are feeling resistant, consider this:

  1. Perpetual planning allows spontaneity to thrive. Many barriers can be accommodated with creativity, preparation and a willingness to explore alternatives. Over prepare and expect things won’t go perfectly as planned. 
  2. Pack a day bag with personalized essentials to ease stress. The day bag should include anything that will provide comfort and options. I like to include water, snacks, medication, bath tissue, sunscreen, jacket, hat, extra shoes and socks. Think about everything that could be in the car to make it feel like any circumstance or change of plans could be accommodated.
  3. Set reasonable expectations. Overestimate travel time, and grant yourself permission to change plans.
  4. Focus the trip around one anchor focus or goal for the day. Create a mental or written list of other things that can be done, if plans change and energy and time allow. Back up plans help diffuse disappointment when things don’t go as intended. Schedule plenty of extra time to do more or less in order to take good care for yourself. Delays and unexpected changes of plans can sometimes lead to wonderful opportunities.
  5. Allow for lots of bathroom breaks, and never pass a restroom assuming another one will be available later. It’s better to go too often than to not have access to one when it’s needed.
  6. Make the travel experience as fulfilling as the destination. Go with someone you want to spend time with. Have a good playlist, podcasts or book on tape ready to play. Consider why you’re going. If it’s a trip to a view point, there might be clouds obscuring the view when you get there. Enjoy the journey, the people and doing something out of the routine. 
  7. Look for surprises, and be open to exploring them. Allow for impromptu diversions. Rainbows, herds of elk and skydivers landing have all been rewarding unplanned sights I’ve enjoyed because I looked beyond the road and was willing to turn off the planned drive.
  8. Use technology, but don’t get overwhelmed. Look online or use apps for recommendations in the area, and consider them. I love using navigation apps for simplifying the directions and letting me know the time and distance to my destination. 
  9. Talk to people. Locals always know the best places, and they love sharing special tips that you might otherwise miss. Just connecting with people can be fulfilling too!
  10. Interrupting someone is required when pointing out something nearby or of interest that won’t be visible a few moments later. 
  11. There’s always time for ice cream. Literally or figuratively, indulge and enjoy the trip!
Elk on a day trip

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share Button

Summer Heat

By Stacie Prada

Summer’s here, it’s getting hot, and it’s getting really tough to stay cool.

With multiple sclerosis, many people have heat sensitivity that triggers MS symptoms. For me, it brings on fatigue, and my body goes numb. It usually starts with my feet and legs. Without intervention, the numbness can spread to my full body from the neck down. It’s not disease progression, but it can be frustrating and depressing. In my youth I basked in and relished extreme heat. Now it makes me anxious for the possible consequences.

Cooling feet off in the water

Suggestions abound for ways to stay cool in the summer heat. Stay hydrated, wear cooling aids, stay in the shade, have air conditioning, travel somewhere cooler, be rich. The last one is said in jest, but there are so many barriers to remaining cool when the weather heats up for more than a day or two. I suspect the barriers are easier to remove when wealthy.

The preferred options are also very individual. Environment, health, finances and area of control differ drastically for each person. Cool showers work for me, but they might not be possible when needed. They can also be difficult for those with mobility issues. My go-to method is to use my medication cold packs as cooling aids. Wrapped in a towel, they cool me down quickly when placed on my belly or the back of my neck. 

I don’t have air conditioning in my home or at work, so I plan ahead for hot days. My office is located in an historic building of stone and brick construction without air conditioning. We fondly refer to our office as a pizza oven when the brick warms up and our offices remain excessively warm for days. In my area, it’s the start of a heat wave. It was 80 degrees at my desk today, and the humidity made it feel hotter.

I drink cold water, use the ceiling fans, open the windows for air flow, and direct a small fan above my desk at my torso. Films coating the windows and blinds adjusted help diffuse the sun’s rays from directly warming the office. None of this keeps the office cool, but it makes it a little more bearable. 

It’s a challenge getting work done and looking professional while trying not to overheat. Sportswear is good for the technical construction and breathable fabric designed to keep athletes comfortable, but it can get expensive and isn’t always appropriate for the office. Sun dresses, skirts, breezy style tops and other loose clothing that don’t cling to sweating skin help. Often being comfortable can be achieved, yet we resist in an effort to be socially acceptable and presentable. The business world generally encourages discomfort at the expense of good self-care. I want to give myself and others permission to do whatever it takes to stay as cool and comfortable as possible in hot weather.

I try to remember the conditions where I am are not the same everywhere, and they’re sometimes drastically different at a nearby location. It’s interesting to me how different it is for the offices across the hall located on the shady side of the building. They’re often cool even on very hot days. I need to remember this. Where might it be cooler? Go there for a moment. Even a quick break could help.

Note to self: Sometimes it’s not about being able to do something to relieve the discomfort, it’s about giving myself permission to do what it takes to be comfortable.

I live near the beach, and yesterday I walked along the shore barefoot in the water. It felt so decadent that I couldn’t believe I’d resisted the idea of taking off my shoes and socks to get in. I knew the saltwater would be really cold, and it was. I hadn’t considered how refreshing it would be after the initial shock. It cooled me off, and the unplanned stroll was heaven.

Lesson noted: Sometimes the initial discomfort is necessary to get to comfortable conditions.

Please do what you need to do to care for yourself and those around you, especially in heat waves and situations where certain behavior is expected. You might just inspire someone else to give themselves the permission they need. 

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share Button

New Beginnings

By Stacie Prada

Spring holds top honors
as the season of new beginnings
for new growth, budding blooms and wildlife births.
Spring marks the end of winter,
although they often overlap
in their weather shift competition.

January 1st rivals spring for a new beginning point
as the first day of the first month,
and it too may garner significance
for its relationship to
the last day of the prior year.

Waking marks the beginning of the day
and end of overnight slumber.
A new friendship,
a health diagnosis,
a life without someone
exist in cognition as before and after
a moment.

All are endings and beginnings.

Moments in time often pass
without anticipation or awareness
until later upon reflection and applied significance.
Detecting these turning points in real time
is infrequent
not for lack of effort
but for the constant stream of beginnings and endings.

Noticing and assigning purpose
elevates common moments.

Foreseen, by happenstance, or noticed in hindsight,
each ending lays foundation for a new beginning.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share Button

Good Confidants Can Handle the Tough Stuff

By Stacie Prada

Our relationships affect our health, and our health affects our relationships. Our health and our relationships evolve over time as each person ages and life chapters change. These are simple and obvious facts, but I find them to be something I need to remind myself periodically.

Living with a chronic and progressive illness like Multiple Sclerosis complicates the issues to tackle and the dynamics to navigate relationships.  As my body changes, my focus always shifts inward.  Is this symptom new and temporary, or is it a small indication of worse things to come? What do I need to do differently now, and what might it signal for my future?

These are important questions to consider.  Identifying symptoms, possible treatments and available resources are crucial for navigating the physical aspects of chronic and progressive diseases like MS.

In these times, I try to stay logical and pragmatic.  I try not to overreact. I try to work through my fears and frustrations in a healthy way that doesn’t impact anyone else.  They don’t ask me to keep it to myself, but it’s my natural preference.  Unfortunately, the agitation and worry usually seep out, and those close to me sense it.

Stacie Prada relationships on her blog post Sharing the Tough Stuff

It takes a lot of self-awareness and acceptance to disclose when my body isn’t working well. Usually, I’m still trying to get a handle on what it is and whether it’s significant or not. I’m still trying to analyze and monitor the changes.  I often am not yet ready to share, because I’m hoping things might improve and there might not be anything to share.  This means those close to me experience the consequences of my changing health before I even realize I’m stressed and irritable.

My confidants have excellent skills for showing curiosity and support while not pressuring me.  Sometimes unknowingly, they help me manage my feelings, my fears and my frustrations.  They hear me, believe me, don’t compete with me, and share themselves with me. I see their grace when I deflect or shut down an inquiry.  These are the people to keep close, because they’re willing and able to help me.  When I see them hesitate or gently back off, it’s my signal that I should share what’s bothering me.

Yet, I still hold back.  While it’s silly to think saying things out loud will make them worse, it’s exactly how I feel.  If I share that my legs hurt more and my coordination is worse, it means my fears of becoming disabled are warranted.  It means I’m becoming disabled.

I’m seeing disability with MS can be a slow, gradual and very invisible transition.  It appears to me that I will be greatly affected by my disease before anyone sees me with a mobility aid.

I’m going through this life with MS, and the people close to me are going through this life with MS with me. Some made my life harder, and I’m fortunate to no longer rely on them.  Others have proven to be healthy and respectful, and they are my cherished relationships.  They check in, they ask how I’m doing, and they back off when they see I’m not up for saying more.  It’s not until I open up and share the invisible changes I’m experiencing that they can really go through this with me in a way that helps me cope.

Having a body slowly and progressively deteriorate is an isolating feeling.  It takes effort to explain and not complain.  I get sick of living with MS, and I get sick of being tired of it. I want to be low maintenance and easygoing, but this disease is one that requires constant coddling and accommodations for my body’s needs. It takes a lot of time and effort to do the physical tasks that are needed to manage my MS symptoms, and it takes tremendous effort to challenge the negative thoughts that come from having a chronic illness.

I haven’t found the secret to skipping the irritable phase.  I’ll notice I’m grouchy, and I try to override the temptation to lash out. Sometimes I do well. I keep my mouth shut and go for a walk or do yoga.  Sometimes I reveal my bad mood in my tone or curt responses. It’s moments like these when I don’t feel like I’m being as nice as I’d like that I hope to avoid or get through quickly.  Often the best I can do is give myself a timeout and tell those around me that it’s not them.  My goal is to be able to feel pain without lashing out and seek connection to help get me through the feelings of uncertainty and frustration.

Once when I was going through an especially difficult time, a friend wrote in the sympathy card, “We’re hurting with you.”  It hit the right nerve, and tears along with a sob came quickly.  I was feeling very alone, and having someone succinctly address it allowed for a cathartic feeling of connection.  I know the antidote to feeling powerless and alone is sharing with those close to me. It doesn’t fix my problems, but it lightens the emotional load I’m carrying.

If I can be truthful and forthcoming with the people who have my back, and if I can be a source of support for their challenges, I think we’ll all fare well.  The best relationships can handle the tough stuff.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share Button

Learning About Hope

By Stacie Prada

Learning about hope gives me hope. Hope, faith, endurance, resilience, conviction and belief, they all contribute to my level of hopefulness.  They help me feel like I can make it through hard times.  The conditions I’m enduring will subside, or I’ll figure out a way for it not to hurt as much.

Hope

I’m learning that people with hope do better physically.  I’m realizing that it’s not a feel-good thing or coincidence that at my neurologist appointment, the questionnaire asks me how many times in the last month I’ve felt hopeless. You may be familiar with this question. It reads: “During the last 30 days, about how often did you feel hopeless?  Choose among the answers: All of the time, Most of the time, Some of the time, A little of the time or None of the time.”

Some internet research has shown me that this question is from the Kessler Psychological Distress Scale.  It is a measure of exactly that, distress.  People who are hopeful live with less distress.  It doesn’t mean their lives are less challenging or easier.  Actually, they’ve learned that life conditions don’t have a correlation to how hopeful a person is.  People with similar challenges can have vastly different levels of hope, and even the same person can have different levels of hope at different times in their life.  I’ve learned it takes effort to be hopeful, but our circumstances don’t dictate our well-being.

There are things we can do if we’re feeling hopeless.  Hope and motivation do well with ongoing support and inspiration, and often they involve other people. Tell someone you trust, talk to a counselor, reach out, and lose any guilt or shame for needing help.  Answer the question honestly when the doctor’s questionnaire asks you.

We’re all going to have different things touch our souls and give us hope. Just looking for things that make me hopeful leads me to find reasons to be hopeful.  Being clear about what is possible and what is probable narrows my focus for where to direct my attention productively.

I’m excessively aware that I can’t control most of things in life.  I can‘t control what others do, I can’t control the pace of scientific advancements, and I can’t control my body’s multiple sclerosis advancement.

I can’t unilaterally fix the world’s injustices, but I can contribute a little in every interaction I have.

I can’t prevent MS progression and disability in my body, but I can live in a way that gives me the best odds of doing as well as possible.

I can’t speed up medical advancements, but I can stay informed, participate in studies and contribute to causes that are doing that work.

Acknowledging the many areas where I lack control and the few where I can contribute eases my stress level.  It lessens the degree of responsibility to a manageable level where I feel like I can do something that matters. That gives me hope.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share Button

Joy: It’s the Little Things

By Stacie Prada

It’s a season of wishing glad tidings of comfort and joy. I’ve never really thought about what that means, so I looked it up. Tidings means delivering news or making an announcement. I don’t think I’ve ever used the phrase, but I probably used it wrong if I did. I thought it was wishing someone else comfort and joy, but technically it means to deliver good news. It’s sharing our own good news, because we think they’ll be glad to hear it.

I think celebrating and sharing our joyful moments brightens the day for many. I experience joy when I Continue reading

Share Button

Feeling Connected

By Stacie Prada

Feeling connected is different than connecting. I can go long periods of time without seeing or talking to some people, and when we see each other we continue as if there’s been no gap in time. Others I worry when it’s been a while. Usually it’s not because of how we are interacting, but because I feel guilty for not reaching out more or doing more.

ConnectionWhen MS is giving me a hard time, I’m often drawn to Continue reading

Share Button

Learning About Anxiety

By Stacie Prada

I get anxious, but I never considered I might have anxiety. I’ve heard people talk about how it feels to have panic attacks, and I know I haven’t experienced one. I thought of anxiety as something constant and debilitating. I do yoga, I laugh, I’m active, and I’m productive.  Having a diagnosis of anxiety doesn’t fit in with how I view myself.

But when I research anxiety, I realize that what may not be paralyzing for me could still fall perfectly under the anxiety umbrella.

Anxiety

Grinding teeth, nausea, headaches, problems sleeping Continue reading

Share Button