Spring is in full bloom and summer is beckoning. It’s a lovely and uplifting time of year, but for people with multiple sclerosis, summer’s heat and humidity can cause symptoms to become more extreme. These temporary flare-ups are called pseudo-exacerbations and they pack a powerful punch.

They are common enough that before the introduction of MRI and other modern testing, the “hot bath test” was sometimes used to diagnose MS. Doctors would observe people who were immersed in hot water and watch for neurological impairment that improved after cooling.

Unlike true exacerbations, pseudo-exacerbations do not involve neurological damage, although symptoms can be quite severe. Pseudo-exacerbations can be caused by any number of stressors such as urinary tract infection, fatigue, flu, or elevated body temperature.

Exposure to heat can quickly lead to trouble. Raised body temperature makes it difficult for already damaged nerve fibers to transmit electrical impulses, resulting in an exaggeration of existing symptoms which may include weakness, fatigue, dizziness, decreased cognitive function, numbness, and blurred vision.

As one who experienced this early on in my life with MS, I can say without hesitation that I do not ever want to experience it again. A little extra vacation sun in a climate much hotter than I was used to knocked the wind out of my sails in a major way, rendering me almost completely unable to move until I cooled down. Unable to drag myself back to the hotel room, it took an hour in the shade and several tall glasses of ice water to get me back on track, and another several hours to fully recover.

Temporary though it is, it is a frightening ordeal, and quite debilitating. I’ve given up on hot tubs and hot baths forever, I’ve sworn off mid-day sun, and I am cognizant of the pitfalls of traveling to warmer climates.

Spring is a good time of year to review the phenomenon of heat-related pseudo-exacerbations and what to do about them. If you have MS, you don’t necessarily have to avoid summer fun. There are several things you can do to help avoid pseudo-exacerbations caused by heat:

• avoid hot tubs, saunas, hot baths, and showers
• choose shade over direct sunlight
• enjoy an occasional cool dip in the pool
• some sunlight is good for you, but try stay out of the sun during the hottest part of the day, from 11:00 am – 3:00 pm
• wear lightweight breathable clothing made from natural, breathable fabrics like cotton
• wear a hat with a brim
• drink plenty of cool, refreshing water

If you begin to feel the warning signs of overheating, such as lightheadedness, dizziness, weakness, and extreme fatigue:

• find some shade, or try to get indoors to a room with air conditioning or fans
• drink something cool
• take a cool shower or bath
• use a spray mist bottle
• rest!

Overheating is enough of a problem for people with MS that there are products like the cooling vest that are made specifically to help. For more information about these products, how they work, and how to get them, check out these cooling programs.

• Multiple Sclerosis Association of America Cooling Equipment Distribution
• Multiple Sclerosis Cooling Foundation
• Multiple Sclerosis Foundation Cooling Program
• National Multiple Sclerosis Society Cooling Product Information and Assistance

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2 Causes. Follow on Twitter @AnnPietrangelo

Do you walk on eggshells around people with chronic illness or disabilities? If so, you are not alone.

Maybe you’re a little uncomfortable — you don’t know quite what to say and don’t want to stick your foot in your mouth. You want to ask questions but don’t want to pry. In our “politically correct” world, eggshells are all over the place.

Most literature about chronic illness informs us that stress can aggravate symptoms and cause relapses, and a lot of us can attest to that fact. Avoiding undue stress is a positive thing. However, we cannot divorce ourselves from planet earth and the reality of every day life. Taking the concept of avoiding stress too far, especially within the family, can result in pent-up resentment by all concerned.

Most people who have a chronic illness or disability are functioning members of society and integral members of family life. Rather than avoiding that person or avoiding the problem altogether, why not approach them as you would anybody else?

Adults with chronic illness or disabilities want… and need… to be included in important issues, even potentially negative ones. Family and friends, or even co-workers who overprotect can end up causing more harm than good, adding to their own stress levels in the process. It is a vicious cycle that raises tensions and prevents functional problem solving. Good intentions don’t always equal good outcome. Life is fraught with highs and lows and it is folly to try to protect someone from life itself.

Perhaps you are the one with a chronic illness or disability, going out of your way to paint a rosy picture and keep your problems to yourself. We all want to put our best foot forward and, unquestionably, that’s as it should be. But taken to the extreme, it sends the wrong message and can lead to misunderstandings and unexpressed anger. Clearing the air about problems as they arise will ease tension in the long run.

Eggshells be damned. No more hiding. Rather than allowing chronic illness or disability come between you, make a pact to face it honestly and speak freely. Empowerment is gained through being part of the solution rather than part of the problem. We’re all just people.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

Sometimes it’s the little things that make a big difference in quality of life and maintaining independence.

If you have relapsing/remitting multiple sclerosis, as I do, it’s easy to overlook simple things that can make life easier when in relapse. Since my own diagnosis in 2004, I have come to appreciate some simple household helpers that assist me in managing daily life with MS.

1. Tall Stool for Kitchen Work: An inexpensive solution to a big problem. If standing at the kitchen counter for any length of time is a problem, a tall stool is just the right height for kitchen duty. Get in the habit of gathering together everything you’ll need in one spot rather than making multiple trips around the kitchen. Grab the stool, have a seat and enjoy your kitchen again. Make sure the stool has firm support and no arms so you can easily maneuver. You don’t need to buy anything fancy or go to a specialty store — any tall stool will do.

2. Mobility Aids: An adjustable folding cane can be tucked away in a large purse, suitcase, or car, out of sight and out of mind until you need it. There is even a cane that folds out into a stool! They are available in lots of styles and colors, too. If you need them, lightweight, folding wheelchairs and walkers are excellent devices for people who only need them occasionally.

3. Shower Chair: If you have difficulty with balance and strength, the shower can be a little intimidating, but a small, sturdy shower chair can give you back your confidence, and can be easily moved aside when not needed. Grab bars can also boost safety. While you are thinking about the bathroom, you may want to consider investing in a blow dryer stand to relieve your uncooperative arms.

4. Handicapped Parking Placard: People with multiple sclerosis often appear healthy and strong even though they have difficulty walking for any length of time. Problems with fatigue, stamina, balance, and coordination can interfere with daily activities. If you have difficulty walking or standing for more than a few minutes, you might want to consider applying for a placard. The ability to park close to a place of business or shopping center could make all the difference in the world when it comes to maintaining a sense of independence. The information you need, along with the application, are available online from the Department of Motor Vehicles in your state.

5. Sensible Shoes: Sensible shoes don’t have to be ugly shoes. High heels and pointed toes aren’t very sexy if you teeter around on the brink of disaster all day. Opt for shoes with a low heel and sturdy construction. Shoes that have no support at the heel and do not stay put when you walk can cause trips and falls. Even flip flops can cause trouble if you have difficulty walking. For hanging around the house, lightweight slippers with flexible soles that move with your foot are comfortable and safe.

6. Cooling Products: Heat and humidity makes it even more difficult for already damaged nerve fibers to transmit electrical impulses, resulting in an exaggeration of MS symptoms (pseudo-exacerbation), which may include fatigue, dizziness, and extreme weakness. A simple rotating fan can make a big difference. Information on Cooling Programs: Multiple Sclerosis Foundation: Cooling Program, Multiple Sclerosis Association of America: Cooling Equipment Distribution Program, National Multiple Sclerosis Society: Cooling Product Information and Assistance.

7. Visual Aids: Most drug stores and department stores have magnifying reader glasses at various strengths. Magnifying screens, good lighting, and a host of options for your computer help people with visual disturbances.

8. Handy Helpers Around the House: Devices to help you reach reach things in high places, gripping tools for opening jars, and even pens made for people who have trouble with their grip make little chores easy again.

9. Yoga/Wii: Yoga is often recommended for people with MS and there are programs designed specifically with MS in mind, including exercises that can be done from a wheelchair. Wii is more than just a game and Wii Fit includes some yoga positions and a series of exercises to improve your balance and coordination. With no need to leave home, you can progress at your own pace.

10. Stress Reducers: Your spirit needs some TLC, too. Try using candles and essential oils with calming scents like lavender and sandlewood as you go about your household chores. Water fountains bring the soothing sounds of a stream or brook inside your home. Meditation and deep breathing exercises can rejuvenate in just minutes a day. Don’t neglect the mind/body connection.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

One of the most frustrating aspects of life with chronic illness is the constant state of flux. It is true of all types of multiple sclerosis, and relapsing/remitting MS certainly lives up to the name.

The fact that many of these on-again off-again symptoms are invisible to observers makes it a particularly difficult series of emotional adjustments, especially if you are prone to worry about what other people think.

It’s hard to be taken seriously when people see you looking the very picture of health one day and claiming to be the opposite the next. It probably doesn’t help their perceptions when we go to great lengths to hide the truth.

We hear a lot about maintaining a positive attitude in the face of adversity, and most of us work at keeping our complaints to a minimum and putting on our best face for all the world to see. Most of the time this works in our own favor, but occasionally the challenges of life with chronic illness loom so large as to become overwhelming.

Since receiving the diagnosis of relapsing/remitting MS in early 2004 I have, for the most part, managed to have more positive days than not. The not-so-positive days have been largely hidden from view, revealed only to a few friends and the closest of family members. Let’s face it, nobody wants to be considered a complainer.

I don’t want to be seen in a negative light, but as a positive person who lends kinship and support to others through my writing on the subject of MS and chronic illness. On the other hand, the bad days we all experience cannot be avoided. Addressing them openly and honestly doesn’t make me a negative person; it makes me human.

That was my thought process recently when I tentatively posted brief snippets about my latest MS relapse on Facebook and Twitter. Not complaints and not written in anger, they were instead brief and honest snapshots from a life altered by MS.

The response took me by surprise. Friends, acquaintances, and complete strangers sent me emails of support and understanding. Those who also live with MS or other chronic illness were, of course, able to see beyond the few words I’d written — I had struck a nerve. As far as I could tell, no one saw it as complaining or that I was passing on negativity. It was taken for nothing more than the truth that it was.

I have no less faith in the power of a positive outlook on life, but more faith in the people around me to accept the hard truth once in awhile. I’m not saying that anyone needs a play-by-play of our lives any more than we need one of theirs. What and how much of ourselves we choose to share is very much a matter of personal preference.

In a previous article on the topic of positive thinking, I wrote, “I wonder if, by keeping my bad moments private, I have contributed to the pressure to keep up appearances and if by putting my best face forward, I’ve given the impression that I’m always full of sunshine and roses… let it be known now… I have moments when no matter how hard I try, I cannot fight the frustration. So I acknowledge it, deal with it, and purge it. It’s not particularly pleasant, so I generally get myself back on track rather quickly. It is what it is.”

I would like to add something more to that statement: There is no need to keep these feelings to yourself. It is possible to share the bad as well as the good and to do it without wallowing or complaining. It is simply stating the facts of life. If they can’t handle it, that’s not your problem, but people just might surprise you.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

Who among us hasn’t searched for solutions on how to live a happier and healthier life? Little do we realize that in order to discover the answers, we must first learn how to ask the proper questions. Naikan (pronounced NI-KON) is a Japanese word that means “inside looking” or “introspection.” It’s also a structured method of self-questioning and self-reflection that helps stimulate a renewed sense of appreciation and insight about our circumstances.

Yoshimoto Ishin, a devout Buddhist of the Jodo Shinshu sect in Japan, developed Naikan in the 1940s. His strong religious spirit led him to practice mishirabe, an arduous and difficult method of meditation. Wishing to make such introspection available to others, he developed Naikan as a method that could be more widely experienced.

Three Easy Pieces
Naikan is quite simple. The entire practice revolves around three questions that engage strategically with your attention. Similar to logs that make up a raft, each is strong on its own but provides even more support when tied together with the others. The three questions are:

1. What have I received from ______?
2. What have I given to ______?
3. What troubles and difficulties have I caused ______?

What’s special about these questions is that they provide a foundation for reflecting on our relationships with others. Whether it’s a parent, friend, teacher, sibling, work associate, child or partner, focusing on someone else enables you to develop a more holistic, realistic view of your conduct. It helps you appreciate the give-and-take that occurs in daily life.

Let’s take a closer look at each individual question and how they function within the practice as a whole.

What have I received from _______?
This question requires you to look beyond your troubles and perceive the ways you are supported. “People who are very self-focused and self-centered have greater difficulty answering this question because they are typically not paying much attention to what is going on around them,” says Krech, who serves as executive director of the ToDo Institute (www.todoinstitute.com), an education and retreat center near Middlebury, Vt., that hosts Naikan retreats.

If, for example, you go out for dinner with a friend and you constantly talk about how bad you feel or how terrible your life is, you’re probably not going to notice that someone cooked your dinner, served it, and provided water when your glass was empty. All these actions support you, yet you are oblivious because you are primarily focused on your own inner experiences.

What have I given to ______?
The second question grew out of Yoshimoto Ishin’s business practice. Each month he sent out statements to his customers that indicated what products his company had provided and what payments had been received. Yoshimoto believed it was useful to conduct a similar examination of one’s life in terms of debts and credits. “Question two gets you to check out whether, in fact, the world owes you,” says Krech. You may find that the world owes you because you’ve given more to the world than you have received in a concrete way. Or you may come out exactly even. Perhaps you realize that you owe the world and are in debt to other people and the world itself. Most people relate to the latter and that tends to trigger a sense of gratitude. And guilt.

While gratitude is often viewed as a healthy emotion, guilt tends to be seen as something that should be eliminated. But Krech insists that guilt can be a positive tool for promoting one’s overall well-being. “This kind of guilt is healthy,” he says. “It’s an awareness that you have received a great deal from certain sources and given little in comparison. That spurs you on to want to give something back — often to the planet, the community, and your family.”

What troubles and difficulties have I caused ______?
The third question requires you to look at the impact you have on the world and the people with whom you interact. “It is considered the hardest one because it’s not something we do naturally,” says Krech. To illustrate, he offers this example: Someone cuts you off in traffic and you have to swerve to avoid an accident. For the rest of the day, you tell people about how some jerk almost killed you. However, when the roles are reversed and you cut someone off, you usually just shrug it off. You tell yourself that you weren’t paying attention or mouth “sorry” as you speed by. In other words, you rationalize your action and don’t give a second thought to how you may have affected that person.

“People put so much energy into how much trouble other people have caused them,” says Krech. “And almost no energy into how they impact others. This question makes you turn your attention completely around. That’s not an attractive thing to do — but on a spiritual level it is very profound.”

What a person learns from this question is how to recognize the need to funnel one’s energy toward situations that can be better managed. “If someone lies to me, I can’t keep him or her from lying or require that they tell the truth,” says Krech. “That’s their responsibility. But if I lie to someone else, that’s my responsibility. At a common-sense level it is more important to focus on what you might be able to control and change. It will only cause you suffering to focus on that which you have little or no control over. You can almost define poor mental health in that way.”

Finding Higher ground
People usually approach Naikan for specific reasons. Some seek spiritual sustenance; they may not be religious in a traditional manner, but they believe it’s important to have some kind of foundation that provides an opening to understanding things on a higher plain. Others turn to Naikan for help they are not receiving from standard therapy, such as mental health counseling or addiction treatment.

Naikan is also an ideal way to improve relationships. The practice can inspire couples to do more for each other, or enlighten them about ways they could each offer more to the relationship. On a similar level, Krech has successfully used Naikan in business environments to strengthen team-building among employees.

Perhaps Naikan’s greatest asset is the fact that it doesn’t offer a quick-fix solution. Instead, Naikan asks you to look honestly and sincerely at the reality of how you are living. The next step is yours. “Naikan doesn’t tell you whether to stay in a relationship or get divorced, or change jobs or stay where you are,” says Krech. “However, it will give valuable perspective and information that often helps people find clarity about what they should do.”

Daily Naikan

Gregg Krech encourages those new to Naikan to begin with “Daily Naikan.” It is the simplest method of reflection and requires 20 to 30 minutes before bedtime.

Here’s how it works: Sit in a quiet place, without distraction, and write down the answer to the three questions in relation to the day’s events: What did you receive from others today? What did you give to others today? What troubles and difficulties did you cause others today? It is important to be specific. For example, rather than write that you received food, specify the actual food you ate. Don’t leave items off because they seem trivial or because you receive them every day. Use a single journal to keep your thoughts organized.

Try this daily practice for a week. Once you are comfortable with this format, take it to the next level by choosing someone in particular — a partner, a coworker, a friend — to reflect upon using the three questions. Krech suggests increasing your time to at least 50 minutes, and to focus on a specific period of the relationship. “You don’t want to do it for the entire relationship, because there is too much there to cram into one sitting,” he says. “Instead, you might choose the past three months or just the past month, a week, or even a day — especially if you are going through a troubling time.”

Eventually, you will develop the presence of mind and wisdom to step back from your anger and look at a conflict in the broader context of the entire relationship. “It doesn’t mean you forgive the person or resolve that what he or she did is okay,” says Krech. “Rather, you see a particular incident in the context of everything else that’s happened; in the context of the love and support you’ve received from this person. Naikan reflection has a tremendous ability to help people soften their hearts and melt the anger and aggression that can ignite during fights among people who love each other.”

Resources:
Naikan: Gratitude, Grace, and the Japanese Art of Self-Reflection by Gregg Krech (Stone Bridge Press, 2002) and http://www.todoinstitute.com.

Experience Life magazine is an award-winning health and fitness publication that aims to empower people to live their best, most authentic lives, and challenges the conventions of hype, gimmicks and superficiality in favor of a discerning, whole-person perspective. Visit www.experiencelifemag.com to learn more and to sign up for the Experience Life newsletter, or to subscribe to the print or digital version.