Traveling With Health Issues

My definition of travel has changed as my Multiple Sclerosis symptoms have progressed. Travel used to be trips that include overnight travel, and even one night away from home might not have qualified as “real” travel. Now travel includes going places for periods of time that disrupt my daily routines, and that means day trips solidly qualify. Travel includes going anywhere outside of my normal routine. It demands having health issues considered and accommodated to ensure I have fun, meet my body’s needs, and don’t stress too much.

Two adages help me plan for travel:

“If anything can go wrong, it will (and at the worst possible moment).” 

~Murphy’s First Law

and

“Wherever you go, there you are.” 

~Oliver’s Law of Location 

I see Murphy’s law as a comical yet accurate warning, not pessimism. Things rarely go exactly as planned.  It takes foresight, preparation and back up plans to help navigate glitches with less stress. I see Oliver’s Law of Location as a fact with corresponding guidance to bring what I need. If I don’t plan ahead, the routines and things that keep me well in daily life might not be wherever I am.

Historically, I’ve prepared for trips by detailing a fairly straightforward packing list of clothing, toiletries, documents, electronics and medications. I’d consider how many articles of clothing and footwear to bring, match apparel to the weather and planned activities, and bring travel sized grooming products.

What would get missed were the things I use off and on to manage MS symptoms.  Traveling always causes one or more of my MS symptoms to exacerbate, and I wasn’t always prepared with food, products and equipment I have throughout my home that help me keep symptoms in check.  

It’s easier at home to accommodate my needs and preferences. It flows, because I’ve spent a lot of time creating routines that work for me. At home, I have bananas in the kitchen, muscle tonic in the fridge, a yoga mat in the living room, supplements and medication in the medicine cabinet, and magnesium sprays, CBD lotions and body washes in the bathroom. Everything is where I need it. 

Planning trips and leaving a normal routine takes effort, and it takes even more preparation and organization with health issues to address. What really helps me prepare for travel is looking at what makes me anxious or unsettled and addressing them one by one.  

Questions: What do I worry about, and what stresses me out?

Answer: I worry that I won’t have what I need to do impromptu activities. I worry about being able to keep up with others and the itinerary. I worry about not having freedom to deviate from the schedule or get rest when I need it. I worry about symptoms getting out of check and not having the products I have at home to address them.  

My worries stem from my common and persistent MS symptoms of spasticity, constipation, and fatigue. Recognizing this and planning ahead helps reduce my anxiety about managing them away from home. 

Spasticity is the term for when the nervous system misfires signals to limbs causing spasms, tightness, achiness, and cramping. Spasticity causes pain, and I combine a lot of methods in daily life to keep it in check. Spasticity makes flying and driving long distances endurance events.  While these activities are not technically endurance sports, I contend MS makes them qualify. I’m pushing myself to stay in confined spaces and positions that cause pain and muscle spasms. 

It requires diligence with supplements, lotions, stretching, and hydration. I’ll increase my medication dosage for the day and stretch at every opportunity. I’ll do full body stretches at rest stops and in airport terminals. Stretching in a car or airplane seat is more difficult but not impossible. In confined spaces, I can massage my calves and forearms, point and flex my toes to stretch my calves, and do wrist and hand stretches to relieve pain in my forearms. I don’t like drawing attention to myself, and I try to be discreet.  That said, I think it helps remind others to tend to their own bodies.  I’ve noticed others in airport terminals waiting for a flight notice me, get up from their seats and do their own stretches.

Constipation is deemed to be embarrassing and a personal issue.  Let’s remember it’s a human issue, and lots of people with or without health issues experience it at one time or another. The more informed we are, the better able we are to treat it. When MS damages the central nervous system, it can cause bowel and bladder issues.  Stress, dehydration, and changes in diet and routine can all contribute to constipation. Travel often includes all of these things. 

Anticipating, monitoring and treating constipation early can really make a difference. Fruits and vegetables (with high marks for bananas and pears), magnesium supplements, stretching (torso twist is great), and staying hydrated help me a lot.  

Fatigue is a common MS symptom, and it challenges me in the best of circumstances. Travel typically increases exertion, engagement, decisions to make, and overall stress level. Building in rest breaks, hydrating, keeping up on medications and supplements, and including fitness activities help manage it as best as possible.  

I wish I was low maintenance, and I strive to keep vanity in check, but MS has made me high-maintenance. I console myself with saying that at least I’m doing the maintenance and not pushing it on other people. I get exhausted thinking about everything I do to address my MS and general health, and I don’t even do all I feel I should. Periodically, I remember that even if I can do it all, I don’t need to do it all alone. I can ask for things that will make my life easier.  People are highly receptive and willing to help. They’ll stock bananas so they’re ready for me. They’ll go for walks with me or make sure the schedule allows time for movement.  They don’t make me uncomfortable or act judgmental. They’ll ask if I need anything, help me, and provide gentle reminders to tend to my needs. 

I enjoy travel immensely, and I endure what it takes to make it happen. Travel will cause MS symptoms to rear up, and it is hard on my body. I’m able to travel, I enjoy it, and I know it makes my life better. I do what I can to minimize the challenges and accept the hassle, because I still can and it’s still worth it.

Knowledge of MS Progression Is Its Own Invisible Symptom

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, pain, bladder and bowel issues, spasticity (cramping & stiffness) and dysphasia (trouble swallowing).  While all of these are not technically invisible symptoms, they behave as such for me given they’re not visible to others.

I see people in vehicles impatient when I’m in a crosswalk at the end of a walk or jog and moving slower than they’d like.  They don’t know my legs are less reliable at the end of a workout.  They don't see how it takes me a while in the morning for my legs to move as I intend.  It’s not obvious I’m taking greater care to make sure my feet land firmly and I don’t trip.  Some people behave impatiently as if I’m intentionally slowing them down.

When I’m pushing myself to participate in something and struggling with fatigue, people question how I can be too tired to stay one day yet do something very active the next.  Trust me, I get it.  It has taken me years to understand my body and my limitations as well as I do now.  It’s taken a lot of trial and error with frustrating consequences from overdoing it to teach me it doesn’t need a reason, nor does it need to make sense.  I need to respect and accommodate how MS affects me in order to live as well as I do. 

I think being diagnosed with MS and living with disease progression is an invisible symptom in its own right.  It affects the significance we give to MS symptoms and how they may affect our future.  

I recently visited a beach where portions of the access trail were steep with fairly treacherous steps to access the shoreline.  On the beach, large driftwood logs created an obstacle course to navigate before reaching sand and water.  While there, I savored feeling the wind and misty rain on my face, the sound and view of breaking waves, the landscape shaped by water, wind and geological shifts over millions of years, and the song of shorebirds calling to each other.  It was beautiful, invigorating and also poignant.  I reflected upon how many people I know would not have been able to access this area due to mobility issues.  Yes, beach walkers and wheelchairs exist, but this portion of the coast would have required someone to carry them. I took in how fortunate I am that I am able to access these remote areas.  I acknowledged to myself that there will likely be a day when I cannot.  

I’m guessing other people on the beach experienced being there differently than I did.  They likely have their own challenges and hardships that may have made their time there bittersweet too, but for me it reminded me how much I can do and what I may lose.  

 

This shows how very real symptoms that are invisible and currently manageable contribute to feelings of fear, stress and sadness.  The fact that my legs still work doesn’t eliminate the sadness I feel for how they’ve declined over the years.  It makes me nostalgic for how they used to be and a little depressed for what may come.  

I cope with this by looking at it from outside myself and from within, and I use this knowledge to shape my choices.

• I try to remember everyone has their own invisible circumstances, and I’m just acutely aware of my own. 
• I aim to refrain from responding in any situation unless I can do so with kindness and compassion.
• I try to share my condition so that my friends and colleagues can understand why I need to make accommodations for myself.  
• I make an effort to do things and go places that I may not be able to access someday. 

Invisible symptoms contribute to invisible experiences.  How we feel in a situation can be vastly different than someone else's while doing the exact same thing at the same time. Knowing this as a fact of life helps me cope and live the best I can.  

My MS Number: We Became Experts at Adapting to Change Before We Knew We Had MS

I’ve started thinking it should be the standard to have our time with Multiple Sclerosis described with two numbers.  It would be similar to blood pressure readings where two numbers have meaning on their own but give a fuller picture of a person’s health when described together. Our time living with MS could be described as the number of years since we were diagnosed over the number of years we estimate we’ve been living with MS.  

For me, I was diagnosed 11 years ago, and I can estimate my first exacerbation was likely 27 years ago.  This puts my MS number as 11 over 27.  Short hand, it would be written 11/27 MS yrs.

Often when meeting new people, we’re asked how long we’ve had MS.  Those who are more informed tend to ask how long since we were diagnosed.  Given many of us with MS have lived with it a long time before we know it and are diagnosed, those years prior to diagnosis take a lot of words and time to explain. At times it feels like I’m slowing the conversation and forcing someone to listen to a long explanation.  It doesn’t help that the words diagnosis and exacerbation have a lot of syllables and are a mouthful to say in any conversation.

Those 16 years between what I now realize was an exacerbation and the year I was diagnosed were filled with odd sensations, loss of control of hands and feet, bladder and bowel issues, and a ridiculous amount of fatigue that kept me exhausted for years.  All those years, I thought I was healthy and didn’t know they indicated something seriously wrong with my health.  I thought it might just be normal, because symptoms were sporadic or nebulous. I had no way of knowing that my exhaustion wasn’t solely because I was fighting off a cold or stressed out.  

In those 16 years living with MS but not knowing I was, I became an expert on adapting to change without realizing I was adapting to living life with a chronic illness.  

For my fatigue, I put a lot of effort into outsmarting my energy level so that I could get more done with less effort.  I’d organize every aspect of my life.  My schedule, my professional obligations, my home, my finances and holidays all had lists and systems in place to ensure I kept up with everything I wanted done.  

For dropping things or tripping, I could only conclude that I must have been distracted.  I’d vow to pay more attention.  I’d plan to grasp things with intention and lift my feet purposefully.

Bladder and bowel issues were addressed with diet and research.  I’d follow the recommendations available at the library, online and suggested by friends to see if any of them worked.  Sometimes they helped and sometimes they didn’t.  Eventually the exacerbation would subside, and I’d attribute the problems to a disruption in my routine, eating differently or not getting enough fiber.  Looking back, it’s a bit crazy I didn’t realize it wasn’t normal, but it would always improve after a while.  How could I know when I don’t have another body exactly like mine to compare it to?

I, along with many others with MS, unknowingly adapted to MS symptoms just to keep on keeping on.  The relief of having a diagnosis allowed me to add one more crucial factor to consider when making decisions.  The benefit and the burden of this knowledge is an ongoing fact of MS living.  

Pre-diagnosis, I might stay home all weekend to rest and feel like I was deficient.  Post-diagnosis, I not only had a valid reason to rest but a compulsion to rest for fear of causing an exacerbation.  Thankfully, I finally had something that my friends, family and I knew about me that might offset the judgments that I was lazy, didn’t care or was making an excuse to avoid something.  Those closest to me looked out for me and pressured me to do less. The expectations for me and from myself now had a new lense through which my performance was measured.  It is both liberating and confining.  

Post-diagnosis, my challenge has been to find a sweet spot of balance between activity and rest.  Perspective, healthful habits, continual learning and adapting helps. At time I can do my best, and I still won’t be able to adapt enough for the change needed for the circumstances. It doesn’t mean I’m unable to deal with change.  It just means I won’t be perfect in every situation. Notice it, acknowledge it, repair any damage to others I may have caused, learn from it, and move on.  I can’t do better than my best.  That’s enough.

For my suggestions and perspective on organization, see: Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness

Dealing With Embarrassing Symptoms: Constipation

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally.  Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss.  Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking.  People living with illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common Multiple Sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss.  Try to get over the embarrassment of bowel problems.  If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time.  You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem.  They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it.  Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command.  The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally.  It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this.  With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements.  While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:

• Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
• Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere.  It may require getting up earlier and taking more time in the morning.
• Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
• Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
• Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
• Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
• Bowel training:  Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter.  The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.  
• Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement.  A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
• Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid and tea form available to soften stool if needed.
• Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
• Bidet toilet seat*: This attachment to your standard toilet can stimulate the body to have a bowel movement less invasively than an enema, and with time it can in a way train the colon to respond to the water.  It can also help reduce the instances of UTI's for some people who use a bidet.
• Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple.  When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms.  Be courageous. Be confident in your duty to advocate for your well-being.  Be a good example and resource for others who may need to find their own courage to do this someday.

* The suggestion regarding bidet toilet seats was added after a reader suggested it and described how it has benefited her. Many thanks!