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.