The summer months are chock-full of fun activities, and most of these activities are outside. For those living with MS, being outdoors for an extended period of time can be taxing on both the body and mind. I have a list of things that I do in the summer months to stay calm, COOL, and collected when being outdoors, so I too can enjoy these fun activities with everyone else.
Life with multiple sclerosis (MS) requires lots of preparation and thought. There is much you need to successfully navigate each day.
We wondered what items, real or imaginary, help get you through a day. We asked community members on our Facebook page to tell us: “If you could create an everyday MS bag (think Mary Poppins pulling a lamp out of her purse kind of bag) that held everything you would need to be prepared for your day, what would be in it?”
You had some “practically perfect” responses!
Plenty of meds to help with flares and pain
Managing MS means keeping prescriptions and over-the-counter drugs with you. Flares and pain can arise at any time. You feel like a portable pharmacy.
- “Pain killers.”
- “Advil. Lots of Advil.”
- “Medical marijuana.”
Tools to help you regulate your temperature
Temperature regulation can be challenging with MS. Many of you frequently overheat and sweat profusely. You would pull items to help you stay cool out of your magic carpetbag. While more of you need cooling items, some of you need items to keep you warm!
- “Cooling pads.”
- “My new cooling vest.”
- “A portable cold shower and ice machine.”
- “Air conditioning year-round. 2nd-floor condo facing southwest; year-round AC.”
- “My neck fan.”
- “Ice packs and cold drinking water!”
- “A heater.”
Materials that explain MS to others
Often people in your life do not understand the nature of MS. It is wearying having to explain the disease over and over. Several of you wished for the ability never to explain this disease again.
- “A huge stack of books explaining what MS is to hand people and tell them not ever to talk to me again unless they read the entire book.”
- “Flyers of what MS is, so I don’t have to explain it anymore.”
Plenty of feel-good items
Comfort items were high on your list of things to pull out of your bag. These items help you feel supported navigating life with MS. Flares with MS are miserable. These items soothe both mind and body.
- “Sweatpants, sweatshirt, my fuzzy socks, pillow, my softest blanket, Architectural Digest to look at pictures, a plant, my iPad, water, eye mask for sleeping, and my dogs.”
- “Muscle relaxers, ice packs, pain meds, my teddy bear, phone and charger, and a good book if I can see. Oh, and some snacks!”
- “Tennis shoes, Dr. Pepper, pain pills, room-temp water, sunglasses.”
- “My iPad and a martini.”
A bit of magic
Many of you enjoyed using Mary Poppins’ magic in filling your MS bag! It is fun to dream big about what you could pull out of a bag when there are no rules. Your creativity and imagination are impressive!
- “Fairy dust. For sprinkles of peace, joy, happiness, calm, and healing. And a couple million dollars.”
- “The cool breeze of the NE ocean in summer and the dry weather of the SW in winter.”
- “A toilet.”
- “A never-ending paycheck, so I could stop working and tend to my health issues.”
- “I would pull out a cure for all of us.”
We appreciate all the responses you provided to this prompt! From the serious to the silly, we enjoyed hearing what you would pull out of a magical MS bag. Thank you all for participating and being part of the community.
By Lauren Kovacs
Let me see, MS has pretty much taken summer hostage for many MSers. Some things we can in fact re-claim, with modifications. We have to learn to put our own spin on things.
Plan, plan, plan. You kind of have to go into a situation knowing all your options and the “what if.” The “Last-minute Lucy” folks won’t like this. Know your own body.
With three Boy Scouts at home, the moto of “Always Be Prepared” rings true for most MS folks. Remember the heat is usually not our friend. Summer means heat. Heat means Continue reading
Question: I find that I am often hot, then cold, then hot again. It seems my internal thermostat is messed up and I am well past menopause. Is this caused by MS and why?
Answer: You are not alone in experiencing these symptoms. We often hear from our patients that they feel hot or cold for “no good reason.”
The medical term is “temperature dysregulation,” meaning that it’s difficult for the body to maintain normal temperatures and results in periods of feeling hot or cold when there has been no change in the actual temperature indoors or outdoors. MS can cause temperature dysregulation. This temperature dysregulation can also make MS patients susceptible to extreme hot or cold.
Some individuals with MS may have impairment of autonomic functions, the functions that are not thought about consciously for the systems to work. Autonomic dysfunction develops when the nerves are damaged. Interestingly in a recent “Patients Like Me” survey, 69% of patients with MS who replied said that their temperature dysregulation is severe or moderately severe.
Also to avoid attributing every symptom to MS you should be checked for other causes of your symptoms such as anemia, thyroid disease, poor circulation, malnutrition, diabetes, or vitamin deficiencies. I always recommend regular health checkups and open dialogue with your MS health care provider and primary care provider.
Summer is almost here. It’s a time for pool parties, vacations, picnics, gardening and concerts in the park. With multiple sclerosis it’s also a time of fatigue, weakness, and heat sensitivity that tends to make all my symptoms a gazillion times worse.
The warmer it gets, the more numb my body becomes. I can actually feel the numbness as it creeps up my arms and legs, and as it works its way down my face, neck and chest. My vision becomes more blurred and I lose color clarity in my left eye which can be quite weird. My legs won’t cooperate with one another, I drop things more frequently and naps are a necessity.
Summer for me is a great struggle as I select between the things I know I can do, those that I can’t do and the ones I decide to soldier through limping and dragging my body along. I know one thing for sure: the inventor of the air conditioner should have been given the greatest achievement award that existed at the time because without it, I wouldn’t survive.
Not only do I hibernate in the winter, I do so in the summer too. MS and heat just don’t mix together very well. My body can attest to that.
If I have to be out in the heat of the day away from the coolness of my indoor environment, I try to plan around the hottest times by doing things in the mornings before the temperature becomes unbearable. When I can’t plan around my mornings, I make sure to have ice with me in one form or another in order to keep my core temperature a bit more controlled.
Ice vests are awesome. I never thought I would like wearing one because most of them aren’t very stylish. I thought I would look like a fisherman wearing a tackle box or a construction worker packing pockets of nails, but they actually aren’t so bad. Most of the time people don’t even realize I’m wearing ice. I’ve turned it into my own personal trendy style. Even healthy people get jealous and want one for themselves.
I also try to keep ice water with me to sip on. Sometimes just holding the cold bottle is enough to get me through a bad moment. That and wrapping a cold wrap around my neck help tremendously.
My freezer has a shelf dedicated to ice packs for my vest, frozen neck wraps and partially filled water bottles frozen and ready to be topped off with cold water. It’s amazing how much ice gets me through a hot day outdoors.
Air conditioning, ice and careful planning are my summer norm now. You may not find me hanging out at the beach watching a game of volleyball or spending the day at an amusement park waiting in long lines for the roller coaster, but I will still be having fun and possibly eating a snow cone or two.
Yes, multiple sclerosis has limited me. That’s a fact. But even with my limitations I am able to do things that I never thought possible thanks to innovative technology and devices that help to keep my body temperature regulated. Summer…here I come!
Oooh…I think I just heard the ice cream truck going down the road. Help. Does anyone have a dollar I can borrow?
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.
By Lauren Kovacs
Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.
MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.
Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”
Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.
Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.
Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.
Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.
Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.
The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.
Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.
Living with MS can be a daily challenge, even if other people can’t physically see the struggle. The invisibility of MS symptoms can be one of the hardest and most frustrating aspects of living with this condition, so when we shared some of the data about this subject from our most recent MS in America survey, many members of our MS community told us about their thoughts and experiences. Here is what they had to say:
The top issue faced, especially now that it’s summer? Trouble with the heat and the way it impacts your body:
- My activity is restricted by the heat. Especially today when the temperature will be in the 90’s.
- I would rate the intolerance to humidity at the top.
- My speech gets slurry and my balance is off. I get accused of being drunk.
- The heat makes my head swim and consequently, my balance gets really bad.
- I have been feeling more and more fatigue due to my body temperature going from freezing to hot. Each time that occurs, I have less energy, less motivation to do something.
- Summers are the hardest for me!!! The last two weeks have been increased fatigue, less energy, pain, and brain fog! Most people love summer! I used to, but now it’s the time I struggle the most.
- Severe fatigue & the heat in Alabama are really bothering me!
Fatigue: it’s a huge (and invisible) concern for many:
- Fatigue especially. It’s like the first trimester [of pregnancy] fatigue times 100!
- I have fatigue every single day. It’s hard for my husband to understand that it’s every day. I have maybe 5 times a year that I feel like a normal person.
- Yep, and the lack of sleep because of spasms equals more fatigue.
- It’s hard for others to understand how you can be so tired doing everyday things. After doing a load of laundry, going grocery shopping and making dinner I am exhausted!
And some other symptoms that can’t be seen but definitely make life more challenging:
- Don’t forget the bladder and bowel problems.
- It’s the periodic blindness that sucks for me.
- And the headaches are brutal.
- Mood swings are really challenging..
- The tingling symptoms scare me. I’ve had a couple of really bad relapses and I’m always afraid I won’t feel my body again.
- Pain needs to be one for me – it’s about 99%.
- My issues seem to be centered around fatigue, weakness, blurry vision and weird cognitive stuff like memory issues or not being able to think of words, or using the wrong word.
- My wife, family and friends will never truly understand what it is like to have headaches and other symptoms on a frequent occurrence and why and how it affects my mood, energy levels and potential plans in a day.
Do these responses ring true for you? What invisible symptoms do you struggle with?
“Uhthoff’s what?” you may be asking yourself. Yes it is a funny name, but it has a more serious meaning. This common symptom of MS can be very troubling, especially when it happens abruptly. Uhthoff’s syndrome or phenomenon is described by clients as a dimming or reduction in vision, usually associated with exercise or overheating.
A 2011 study finds that approximately 60% of MS patients report heat sensitivity. Heat sensitivity is defined as a temporary worsening of MS symptoms when the weather becomes hot or humid. These symptoms are also common when running a fever, or participating in exercise activities.
While Uhthoff’s phenomenon relates solely to vision issues, in the Swedish study heat sensitivity was also discovered as a significant factor relating not only to fatigue but also to several other common MS symptoms such as pain, concentration difficulties, and urination urgency.
Heat sensitivity can cause a number of challenges to individuals with MS. One of the more challenging issues involves determining if the change in symptom is caused by MS disease activity, or other causes such as heat. This experience can be worrisome and cause individuals to fear that their MS is somehow getting worse, or possibly progressing.
So what can you do to combat the heat? Be mindful of how heat can impact your MS symptoms. Planning is the key to keeping heat related symptoms at rest; plan activities around cooler times of the day, either early in the morning or later in the evening.
What tips and tools have you developed to keep heat related symptoms at bay?
By: Matt Cavallo
In terms of the heat, spring is quickly turning to summer in Arizona. Daily temperatures are already constantly in the nineties, creeping closer to triple digits every day. As a person living with multiple sclerosis, this is a problem. As the heat levels increase, so does my fatigue. Each day for me is becoming a battle of will and determination to accomplish simple, everyday tasks. My refuge from the heat is to hibernate in my cool, air-conditioned house.
Recently, I was at work and received a call from my wife that I wasn’t expecting. She told me that the central air-conditioner in the house went out. She went on to say that the AC repairman said the motor was dead and the entire unit needed to be replaced. The sticker shock of what a new AC unit costs was another blow, but with my MS, there was also no way I could afford not to replace the AC.
As I hung up the phone, I started to feel defeated and stressed. It always seems that just when I am starting to get ahead, I figure out a way to fall behind. As I reflected on the situation, I realized that it was out of my control. So what was I to do now? There are all kind of events in life that we don’t plan for, and this was a big one. I could let the worry, stress and financial considerations of the situation bring me down into a negative place, or I could look deep inside myself and somehow find the positive.
I decided that I was going to be positive. The AC was twenty years old, too small for the house and a real drain on our energy bill. We had talked about replacing it for years and this situation was forcing our hand. When I put it in my mind that getting a new AC was good for us, the negative circumstances started to change. We had a friend that could install the AC for a reasonable price. The vendor didn’t have the AC unit in stock that we purchased, so for the same price they gave us a bigger, more energy efficient unit. That unit then qualified for a $500 tax credit. The best moment, however, was the joy my four year old received as we watched the crane remove the old unit and then put the new unit on the roof. He was so excited to see the construction that it made me excited to share in that moment with him.
When life throws unexpected challenges at you, how do you handle them? You can choose to be negative or positive. I choose to make lemonade out of lemons and then pour myself a nice big glass.
*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/
Well, it’s officially spring… although I know a lot of people up north would disagree with the cold weather… but I thought I would talk about some of things that I do to “Spring into Action” around this time of year.
Since the weather is actually REALLY nice in Texas right now, I’ve been trying to spend a lot of time outside… and for those of you who enjoy the outdoors as much as I do, there are some things we need to take into account. Like… how long should we stay outside? For me, it’s all about reading the signs my body gives me. If I start to feel overheated, I go into shade, or go inside. If I’m REALLY overheated, like I get in the 100+ Degree Weather we have in Texas during the summer, a cold shower always helps!
Now, before it gets TOO hot outside, there are some things you can do that will help you manage the heat later on. Do you have any MS Cooling Packs? If not, I highly recommend checking out MSAA’s Cooling Distribution Program. I’ve come to find that the Cooling Neck & Upper Spine Wrap, from Polar Products, really cools my core temperature. Also, there are those little Wrist Cooling Wraps that help as well. Also, when sitting outside on those hot summer days, I LOVE my Cooling Seat Cushion. Now these are just my personal opinion that I’ve found through trying different types of cooling products that help me out, and that I also don’t have to put on under clothing.
When it comes to any type of cooling product used for Heat Intolerance & MS, I feel like it’s a personal preference. The ones listed above are what I use when I’m just sitting outside, watching the kids play, etc. But when it comes to doing things outside like going on walks, yard work, etc. This is when I would use my Cooling Vest. There are A LOT of different types to choose from, so again, personal preference. By clicking on any of the links above, it will take you to different things offered by Polar Products. But there are other Cooling Product Companies out there; I just listed the ones that I have personally used.
Now, I know that a lot of us made some promises to ourselves for the New Year to become more active, eat healthier, etc. I’ve been doing that… and I have a gym membership… and I can say that the exercise that I can do the easiest is swimming. I did make sure that the gym I got a membership to had an INDOOR pool, because with the way the weather has been lately, you never know what you’re going to get.
I’m not going to say it was REALLY easy beginning exercising regularly again, but I do enjoy it. I think one of the most frustrating things I’ve been dealing with is the fact that I was so used to what I was able to do BEFORE I got MS, when I was in Athletics in school, Swim Team and things like that. But I’ve come to the realization that if I don’t want to overdo and aggravate my MS & MS Symptoms, that I have to make a new routine. It takes time, but I feel like I have more energy now. I don’t go to the gym every day, but I do try and walk a little bit on the days that I don’t.
Now about this whole “eating healthy” thing… let me just say that I am a born & raised Texan, and I love my southern food and Mexican food… so this is a REALLY tough issue! I’m not being REALLY intense with it, but I am watching my portions and things like that. I won’t ever be able to stay away from carbs and all of that yummy stuff that I crave, so I decided I wasn’t going to make a plan that I wasn’t going to fully stick with. But by watching my portions and having small snacks in between meals, it’s pretty easy, for me anyway. Oh, and let me just tell you that I am a VERY picky eater and don’t eat the suggested fruits and vegetable intake that you’re supposed to, but I did find a yummy supplement at a health store that I mix with water in the morning and drink that with my breakfast (it tastes like candy, by the way) and that way, I have had my “suggested daily fruits and veggie intake.”
Okay – I hope I didn’t overload you with all that information, but I did want to cover a few of those topics that I know are really popular right now. I hope everyone is outside enjoying the weather- if it’s not too cold, that is.
For more information about Resources for your MS, check out MSWorld’s Resource Center.
Ashley Ringstaff – Volunteer for MSWorld.org