Summer Heat

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.

 

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.  

New Beginnings

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 1^st 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.

Stress Management, Resilience Skills, Time to Shine

Stress isn’t inherently bad, but it feels awful when it causes suffering. Stressful
moments are usually only upsetting when my go-to skills aren’t cutting it to skip feelings of tension and anxiety. I’m feeling pushed to do more than I can do, I’m feeling pressured to respond more quickly than I’d like, or I’m interacting with someone who is using bullying tactics.

When something triggers stress in me, it feels more empowering to think of it as a chance to flex my resilience skills than to say I’m managing my stress. It subtly shifts my perspective from feeling like a victim needing to suppress my natural responses to being an active participant and even champion in the outcome. Managing stress may not have the same connotations for everyone, but to me it feels like a compromise.

 

If I think of stress as bad and my body saying I’m failing or bad at dealing with things, it sabotages my ability to get through the moment with self-control and grace. Instead, I’m aiming to notice stress as my body telling me it’s ready to really perform at peak level.  It’s alert, energized and capable.  It’s ready to shine.

 

My mantra this week is, “Breathe, focus and shine.” I say it to myself as I leave home in the morning.  I remind myself to take a moment, consider the situation, and choose the best path forward.  I’ve been working to remember in stressful moments that I can slow down and behave deliberately.  Respond instead of react. Remember I have options, and I am choosing my behavior. I’m not obligated to a specific reaction.  

 

Stress makes everything feel urgent, but that’s exactly when I need to set my own pace.  When it’s a person testing my resilience skills, I need to listen more, ask a question, listen again.  Slow the tempo of my dialogue and know that listening to a person who is mad doesn’t mean I’m disconnecting or agreeing with them.  Let them experience their emotions without feeling obligated to join them on their roller coaster of frustration, anger or abuse. 

 

In everyday behavior, I can proactively live a life that nurtures my body and builds resilience for navigating stressful moments when they arise. Have fun, live with purpose and know I have value in this world. I can nourish my whole self with good nutrition, movement, self-reflection and connection with others.  Network with colleagues, teammates, friends and mentors who can give perspective and suggestions. Connect with people who experience similar life stressors and can share their approach and successes.

 

I want to react to stress by pausing and asking myself this:

If I was the most skilled person in the world to deal with this, what would I do?

 

It doesn’t matter if I am the best person in the world to deal with it or not, because I am the one dealing with this.  It might mean I just need to take a momentary breath to think it through. I might need to take a longer break and come back to it another time with a fresh mind. Maybe I should contact someone I know who could help me with it.  I might literally be the worst person in the world to deal with this, but thinking about what the best person would do will help me figure it out. It can be my time to shine.

Feelings & Flash Mobs: Mental Wellness Looks Messy

Life is not a straight line. Grief, coping, adjusting and recovery don’t follow straight lines from feeling bad to better.  They’re more of a spaghetti diagram of past merged with present, conflicting emotions colliding without logic, and highs and lows mixed together as conditions change, time progresses and we adjust.

I can feel sadness, loss, fear, anxiety, love, connection, hope, strength and contentment in a single day. Usually I do. Often, I feel a combination of them all at once, and I think it’s normal for me. 

I’ve learned flash mobs make me cry.  Every time.  They can be upbeat, fun and joyful, and still tears stream. I love the combination of surprise, music, choreography, people coming together and people dispersing as quickly as they started. They make me happy.  They also trigger overwhelm for the connection, surprise and happiness they elicit. 

I can analyze flash mobs for why I can’t keep my emotions level while watching them, and I can accept I don’t need to fix it.  For me it’s a great example of how combinations of feelings can simultaneously occur when they aren’t usually related.

Remembering that feelings can be randomly triggered and illogical helps ease the desire to find the cause, the solution and validation. If I assume every feeling is valid yet temporary, I’m less likely to obsess over them.  They can surprise me, consume me and evaporate as powerfully and fleetingly as a flash mob.

 

Certainly, if I’m suffering, I want to shorten the timeframe of feeling bad. If suffering persists, I want to have help.   I know I’m susceptible to depression given my Multiple Sclerosis, and I watch for it.  If I know not every feeling has a logical reason or need for fixing, fleeting emotions are less worrisome. 

 

When feelings persist, having a well-rounded support team is crucial for my mental health and living well with MS.  This team includes:

• Primary care provider who tends to my overall health
• Neurologist who monitors my MS progression, symptoms and mental health
• Counselor to call if things seem too much for me to conquer solo
• Friends and family who will listen and help me assess my condition
• MS Self-Help Group where I can share and learn from people who have MS

Not everyone has access to health care, and I encourage anyone who needs help to contact MSAA or NMSS to see if there are services and support that might help.  If you have a different condition and don’t have a care provider, search “mental health services near me”.  Local health departments often have a web page with a list of resources.

 

Multiple Sclerosis Association of America, My MS Resource Locator: call their helpline at (800) 532-7667 to speak with one of their trained staff members, or email them at msquestions@mymsaa.org.                                                                                                        

National Multiple Sclerosis Society, MS Navigator: call 1-800-344-4867, or complete the form to contact MS Navigators at https://www.nationalmssociety.org/Helpful-Links/Contact-Us

Good Confidants Can Handle the Tough Stuff

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.  

Learning About Hope

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 wellbeing.  

 

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. 

Working and Living with Multiple Sclerosis

For me, living and working well with Multiple Sclerosis is better when I know my value, have a healthy definition for working hard, build relationships, am reliable, and work toward shaping my life to nurture my wellbeing and accommodate MS.

MS can shake a person’s confidence, and it did mine.  Now 50 years old and 12 years post-MS diagnosis, I feel very confident in my abilities and aware of my limitations.  It’s been nice learning that MS won’t take away my sense of humor or my intelligence.  I can say the wrong word sometimes or not retrieve a word I want, but it doesn’t make me less intelligent or unable to contribute in the work force.  I try to give MS the right amount of credit.  I’ve closely watched people in meetings, and I’ve noticed people grab the wrong word or say the opposite of what they meant all the time. If I misspeak, owning it and rolling with it makes it less clumsy and awkward for everyone.  I have MS, I’m not perfect, and I still have value.  

 

I had to redefine working hard from working as much as possible to working as effectively and efficiently as possible while supporting my health needs. The possibility that pushing myself too much could lead to disease progression and disability is scary and stressful, and also very real.  MS fatigue will not allow me to power through. I do what I can, build breaks and rest into daily life, plan ahead and anticipate time will be needed for the unexpected every day. Doing these things helps reduce anxiety and keep me going. 

 

Where possible, I’ve built relationships at work with people who have my back and will honestly provide feedback on how I’m doing. I try to listen to them when they show concern and see their feedback as a gift rather than a criticism.  They may not always be right, but they can provide good feedback and I know they’re looking out for me. 

 

The unpredictable nature of MS can mean my plans need to change without notice.  Being reliable to me means I know the minimum I need to get done and have backup plans in place so that I don’t leave a trail of chaos when I need to focus on my health.  

 

Wherever possible, I take measures to build a life that will accommodate the challenges of MS and nurture my wellbeing. Your MS issues will be unique, and your accommodations and life preferences will be unique.  For me, downsizing and minimizing my home care obligations helps me use more of my limited energy on work, hobbies and relationships.  

 

There may come a day before typical retirement age when I need to end my career chapter. Recently a friend of mine with MS who has had to leave the workforce told me to work as long as I can.  I intend to, and I also plan to monitor my health to recognize it if the time comes that I need to stop working.  Until then, I’m really grateful that I still get to work and feel successful for my efforts.