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/

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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/

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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

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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

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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

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Slow Change and Sudden Shifts: Zooming Out to Gain Perspective

By Stacie Prada

Slow change can be really tough to handle. Its gradual and persistent nature can disguise itself as normal and stable. Only when it reaches a threshold or shifts might we feel the results.

I’ve been living with multiple sclerosis unknowingly and knowingly for almost thirty years, and in the last 12 years I’ve known lesions in my spinal cord are the root cause of pain and my body malfunctioning. I know my body is damaged from MS, I sense where it’s going, and yet Continue reading

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The Rx for Stress? It Depends.

By Stacie Prada

Stress is one of the many symptoms that come with living. It isn’t a root problem, although it can feel like one. Stress is the indication that there is something else going on, and it isn’t always bad. The excitement of an upcoming event causes stress, and I wouldn’t want to skip over the feelings of anticipation and accomplishment that come with looking forward to or working hard for something.

That said, it would be great Continue reading

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Knowledge of MS Progression is its Own Invisible Symptom

By Stacie Prada

Many health conditions and symptoms are never seen by others and remain unknown to the people in our lives until we talk about them. Even then, what our friends and family members see and what we tell them don’t match. The disparity between how we look and how we feel makes it hard for others to believe it’s as much of an issue as we say.

Some of my invisible symptoms are widely shared by many people with multiple sclerosis. There’s fatigue, Continue reading

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Summer Fun at the Drive-In

By Stacie Prada

As summer hits and pandemic-closed businesses open up in my area, it’s exciting to have my local drive-in theater open again. I hadn’t been to a drive-in movie in decades, because staying up late and watching from my car didn’t hold a lot of appeal for me. I’m now a convert. The ability to get out of the house and do something social and special boosted my mood immensely.

Everyone has different preferences and needs, but Continue reading

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Living the Best I Can in a Changed World

By Stacie Prada

My goal is to not just make it through this pandemic, but to enjoy this time. I don’t want to wait for things beyond my control to change to be able to be happy, have fun, and be fulfilled.

If I wait for someday, I’ll miss now, and now may last a while. It’s unsettling to live with uncertainty and be required to change my normal routines. A lot of my routines have evolved over a long period of time to help keep me living as well as I do with multiple sclerosis. Uncertainty is a Continue reading

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