Relationships come in all forms. Personal. Family. Professional. Casual. The list runs as long as your arm.
Each relationship, different in its own way. And each, as unique as the next.
We try our darndest to be careful with words and actions not to lead, disrupt or inflame. Care must be exercised to keep a relationship in its particular form — as crossovers can mean trouble.
Add multiple sclerosis into the fray and judgements can be blurred. Thoughts jumbled. Feelings fuzzed.
That is why I am thankful for two very special relationships in my life.
One, with a local auto parts store. And the other, the neighborhood plumber’s supply.
There, we experience connections on a higher plain. A shared silence of understanding.
Not being handy, nor mechanical, I am mummified to explain what I need or am attempting to do.
Mostly, I shuffle into their establishment with a pathetic look on my face.
A blank stare of incompetence.
From my pocket, I produce a worn-out part, some gadget-gizmo. I don’t know its name or purpose. I simply put it on their dirty counter and let them go to work.
Not a word is exchanged as they see the desperation in my eyes. They will gather up everything I need. Then carefully explain how to complete my back-handed attempt at the project.
Of course, having MS, their words fly over my head like Blue Angels at an air show.
(They are seeing my dumb face pictured above, remember?)
So, they simplify their explanation. Even drawing me a crude diagram on the back of the receipt.
Satisfied, I shuffle back to my car and home again with new-found confidence.
Balsa-wood bravado. Paper-thin capability. But it’s all good.
What we have is special indeed. A relationship that’s…yeah, it’s complicated.
*Doug writes about multiple sclerosis and other stuff on his humor blog at myoddsock.com
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.
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/
I am a big introvert. I think I am allergic to people. It is more drama and there is always drama. I hate drama. MS gives us enough drama, so I don’t need more. “Full up dude. Move on. Nothing to see here.”
With that being said, we still need human interaction. Build relationships with substance. Learn to hone in on that vibe. Tune into the valued relationship channel. If this is not natural for you, it can be learned.
I once did not listen to that station concerning someone. I gave them the benefit of the doubt. I was chastising myself for being too hard on people. I opened my gate and didn’t pay attention. Bad idea. Let’s just say that not everyone out-grows being mean.
MSers cannot afford to just ignore signs or vibes you would normally see before you jump into the shark tank. There are sharp teeth in the tank of life. Some people know no other way then to eat you alive.
When you come across a treasured relationship, keep it. It is a rare gem. Family doesn’t automatically mean you are in possession of a rare gem. You have to test it and put feelers out. Go slow.
Sad to say, but a lot of folks will never understand. MS is tough to contemplate even for those of us living with it. MS is full of surprises. Study your relationships. What is their value?
Our efforts are worth a lot. Are the receivers worth your efforts? In a valued or important relationship choose wisely. Observation and your gut feeling often play a role in valued relationships. Choose wisely.
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.
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/
After 2020, my hope bucket has changed. Simple is the way to go. Smaller goals and a smaller court or field.
Waking up to sunshine is a cause for hope. Sunshine gives me hope of the smile of a new day. No matter how cold it might be, sunshine gives me hope to move and helps me begin my day. Even if my to do list is crushed by MS fatigue, I had hope.
I am not blind to the struggles of MS. I have times when Continue reading →
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 →
You better change your attitude, mister, or I will change it for you. I remember occasionally hearing that as a kid, and I wondered how anyone could change someone else’s disposition. I thought it, but I was smart enough never to ask the question, which would have been bad for my health. I always tried to have a great attitude no matter the situation as a young guy, and meditating in Mother Nature helped tremendously. I now try to stay positive and hope that a smile or kind word I give is just what someone needs to change their day.
There are a lot of negative aspects that come with a medical diagnosis like multiple sclerosis. At any step of the way, any disease can weigh heavily on your body Continue reading →
We’re in the middle of a global pandemic (as I’m sure you all are more than exhausted with hearing about and being afraid of), Thanksgiving is right around the corner, and unfortunately so many of us have lost loved ones that won’t be at the dinner table this year.
For my family, the holidays have always been hard. A couple of years ago, Continue reading →
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.
The holiday season is often filled with traditions that we look forward to all year long.
There are two moments that I look forward to most each year. Thanksgiving dinner with my extended family where we gather to enjoy good food and laughter together. It’s all about the relationships.
I also love the candlelit Christmas Eve church service that provides such a special feeling inside. Being surrounded with everyone in their holiday attire, the lit Christmas tree and hearing the Christmas hymns, is powerful.
Knowing the holidays have a much different feel this year due to the pandemic, Continue reading →
