Do you panic in the sun?

I'd like to think that I am a rational person, guided by logic and good common sense, but then it gets hot outside and that goes out the window.
 
Like most people with MS, I am heat intolerant. Many of my symptoms get much worse in hot weather. I am pretty much constantly fatigued, with a headache. I have tremor that makes it hard to do tasks requiring precision with my fingers, such as typing a message on my phone. My feet tingle throughout the day and feel like they are on fire at night.
 
Despite all of these increased symptoms, I can hold things together pretty well. The big exception to this is when I am in direct, hot sun. Then I get literally frantic. I actually get scared at how quickly I lose control of all rationality in that situation.
 
An example of this is when I pick my girls up from school. Even the walk across the parking lot and down a short stretch of sidewalk can bring me to the edge. If one of the girls has to stop while we are in the sun to do anything – tie her shoe, save a ladybug or pick up a pencil that someone has dropped – I lose it. I'm sure I sound deranged as I scream, "You know Mommy can't be in the sun! Hurry up! This is making Mommy freak out!"
 
I have had similar incidents with friends who innocently choose to walk in a straight line across a sunny patch, rather than dashing from shady spot to shady spot. Even the dogs have been on the receiving end of my crazies when they pick the wrong place to stop and relieve themselves.

This is not just unattractive. It is also not fair to the people (or animals) who I am with. On top of that, it really is a scary feeling to get that out of control.


I have been trying different things to minimize my reaction to being in direct sun. Here are a couple of things that have allowed me to be calm in the sun for limited amounts of time:
 
Wearing a hat: It is not just the physical discomfort of being in the sun that causes me to get so frantic. The brightness of the sun also makes it seem so much more dramatic. I have found that wearing a hat (that’s right, a big, floppy hat like your mom used to wear at the beach) makes me feel much more comfortable in the sun, despite the temperature.
 
Carrying a cold drink: I got the tip a long time ago to freeze plastic bottles filled with water or diluted juice and to carry them with me. I can drink the liquid as it melts and hold the bottle against my neck or face to cool down.
 
Pre-cooling: Before I go into the sun, I sometimes take a cold shower. Making myself uncomfortably chilly buys me some time in the heat.
 
Those are just a few of my little workarounds to tolerate short periods in the sun. Of course, I realize that all of this can be avoided by staying inside in a cool, dark house from May until September. However, like most people, I have obligations that make this impractical. Besides, it doesn't sound very fun.
 
I am in no way advocating that people with MS (or anyone for that matter) spend a great deal of time in direct hot sun.  The days of hanging out on a towel at the beach are in the past, due to the risks of skin cancer.  However, being able to get from place to place during summer months will usually require some moments in the sun. A little preparation can greatly minimize stress and make it possible to actually have a good time during the hot seasons.
 
Do you have any tips for surviving the sun? Please share them with us.
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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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    19 Comments

  • Randi   Jul 3, 2015 2:38 PM
    Hi Julie,

    I feel the exact same way as you about the sun...I completely panic because I start to lose control. The fear completely consumes me and I become this monster (like your not you when your hungry...your hangry!) The sun is like Kryptonite to me...I get foggy brain, vision issues, headaches and just a sense of complete dread. It makes me so sad to fear - the sun, something I used to enjoy so much is now my enemy. I feel the same as you too in regards to my husband and friends having to change their plans because of my condition, I hate feeling like such a burden and hate being the reason for people to not take part in outdoor activities. I use the water bottle idea, keep something cool on hand to drink at all times, try to stay in the shade, use a parasol if walking around in the sun and the cooling towels really help too. Of course there are those super sexy cooling vests that you can get for MS and wear with your big floppy hat. I am waiting anxiously for fall to come and be able to be in control of my life somewhat again. Thank you for the article...I am not the only one that deals with this ;)
  • Tammy   Jul 3, 2015 2:40 PM
    Direct sun makes the pins and needles and shocks my body endures worse and incredibly painful. I wear dermatologist recommended sunscreen, a large brim hat and a long sleeve shirt and still the heat will antagonize an already brutalized body. Extra Gabapentin, lorazepam and a cool room with ice can help cool
    Me down but once the pins and needles start, a flare is already in progress and can last for a few hours to weeks.

    Life is about about controlling the symptoms now and not about living. My family try's to understand but friends have all disappeared. Who wants to socialize with someone who may at any moment fall, scream from a sudden shock or cancel plans altogether, again, because of tingling in the back, leg pain and unable to locate words in their brain?
  • Lisa V   Jul 3, 2015 3:31 PM
    I've gotten so much better at being prepared. I make sure that I have a spray bottle, peppermint oil(to put on my the base of my skull and down my spine..keeps it cool), neck "coolie", short sleeves, cold water bottle. Yes, there is a bunch to travel with, but the alternative is someone ending up carrying me. :-) This has helped me make it, very comfortably, in 90° weather. I gave myself a High FIve after I saw the temperature. WhooHoo! I made it! (The grin is contagious). A lot of people won't understand, but I'm kinda glad that they don't have to. The ones that DO get it will understand and be right there. There's always going to be someone that needs assistance(bad back, cast, neurological disorder, "bum" leg/knee, muscle weakness, etc.), and sometimes that is Me. There is no reason to feel guilt for not being at a different fitness level. So you don't go on a hike, rock climbing or crazy bike ride. There is still so much to experience. Go Have Fun. :-)
  • Sally Harvey   Jul 3, 2015 3:36 PM
    I try to do whatever I am going to do outside early inthemorning or later in the evening. Whenever I am outside I the heat or hot sun, I start feeling so tired that I am afraid I will fall down. My balance is affected right away. Sometimes I actually feel sick to my stomach. Blurry vision is another favorite. Love the fall and winter seasons.
  • Sally Harvey   Jul 3, 2015 3:36 PM
    I try to do whatever I am going to do outside early inthemorning or later in the evening. Whenever I am outside I the heat or hot sun, I start feeling so tired that I am afraid I will fall down. My balance is affected right away. Sometimes I actually feel sick to my stomach. Blurry vision is another favorite. Love the fall and winter seasons.
  • Sandie   Jul 3, 2015 3:53 PM
    i like to kayak so I got some cool towels you wet them and snap them and there like mini Air conditioners put them around your neck or knees and they will cool your core temp down
  • Bill   Jul 3, 2015 4:04 PM
    Does anyone out there deal with terrible nausea and dizziness? If so what do you take to help with those symptoms? Thanks for your input!
  • Janice Rice   Jul 3, 2015 4:22 PM
    Do I EVER know exactly how you feel. When I get hot I get panicky. Family doesn't understand and think it's a "hot flash". HA No one knows but one who goes through it. Thanks for this blog. It helps knowing I'm not the only one!
  • Mickie Watson   Jul 3, 2015 4:26 PM
    Julie I've had this thing for over 36 years. I live outside of San Diego where I used to be a beach bunny. But now I stay inside in the A.C. when it's over 72 degrees. If I have to go out I take a kitchen towel - soak it and then freeze it before wrapping it around my neck! Works great until it melts but it gives enough time to do what I need-want to do. Hope this helps and you have a great summer with your darling little ones.
  • Dave   Jul 3, 2015 6:57 PM
    Two words: cooling vest. Best thing I ever bought. Now I can be in the sun all I want. It's a game changer. Make sure to pony up for one that is full of oil not water. They can be put in the fridge to cool and won't damage skin because of the freezing temperatures. Plus they last a lot longer too.
  • sweta gadi   Jul 3, 2015 8:42 PM
    hey you feel uncomfortable the but I literally get drowsy and fell down under the sun.. So, I usually avoid going out in the sun and if it is necessary then I use many precautionary items like cap, umbrella or I tia a cotton cloth round my head and face too.
    To be true I am just trying to live my life.. hug for you julie .. :)
  • Laura Barnhardt Corle   Jul 3, 2015 10:21 PM
    As crazy as it sounds--I do art fairs. I do art fairs because I am an artist--and with MS--I haven't the energy to work a "Real Job" then heave energy for anything else afterward. As an artist--I feel renewed. My nerves unjangle-and I feel like Me. And--after being an artist for 40 some years, I'm GOOD at what I do. But Galleries take from 35% to an unbelievable 60%, then pay you when they get around to it--But when I'm in an art fair--I get to see customer's face, body language, and hear their reactions-usuallly they don't even realize I am the artist-so when I see reactions to my work-and hear their unrestrained comments I can gage how my work is received-welcomed---or if it needs adjusting...They are my "critique"--plus--and importantly--I get paid-instantly. However--it can get really hot on asphalt in a 9x9 ft art fair booth.
    My booth in the Ann Arbor Summer Art Fair faces North...and buildings behind and in front of me-give shade most of the day. I bribe the business behind me with a giant package of toilet paper each years they let me use their rest room. Im in the shade all day-have electric fans and squirt bottles. BUT the BIG thing I do is wear my my black Betaseran neck wrap--that looks like i'm ready for a hard winter--but ACTUALLY it has 3 pockets that freezer packs are lipped into--so with Icepacks at my neck--I'm actually the coolest person in the entire art fair. I couldn't do it without that neck wrap...!!!
  • Neus   Jul 4, 2015 6:02 AM
    I prefer the Winter because the summer in Barcelona is very hot, the sun is very strong, yes i have panic in the sun, i am M.S.for 25 years
  • bill   Jul 4, 2015 7:56 AM
    Dave, where did you get the vest filled with oil? Can't seem too find one. They all say use with water.
    Thanks Bill
  • theia   Jul 4, 2015 12:02 PM
    iv lived with ms a long time was clinically diagnosed before mris ive been on a rollercoster with it for years on many meds betaseron got to deressed copaxone after awhile it stopped working then on novantrone which i had to stop after a year because i was failing then back on copaxone im not on the rollercoaster any more in the long run i think novantrone turned things around i get around better then ever\just suffer form extrream fatigue and minor balance problems compared to before as i used a wheel chair to get around im lucky im 61 now and it robbed me of my carrear lpn for years now.. i now feel like when i first was having symptoms years ago the doc says its now secondary progressive still cant work and im so broke can think of anything to do to get off ssdi any suggestions
  • Sue   Jul 4, 2015 5:05 PM
    Bill, when I had horrid vertigo & nausea, ginger capsules, ginger ale or ginger tea and ginger altoids helped take the edge off a bit.
  • abbe funk   Jul 4, 2015 10:34 PM
    Wow, than you, Julie. This sums it up so very succinctly. I was also diagnosed in 2003 and have been doing fairly well, all things considered. Summertime and heat just seems to affect me more and more each year. Trying to explain this at times is challenging. Your article sums it up brilliantly. Thank you!! xoxo
  • Bill   Jul 5, 2015 10:39 AM
    Sue, thank you for the helpful hint. I will give it a try.
    Bill
  • Jo Ann Ashford   Apr 29, 2017 3:09 PM
    I was diagnosed 1992. The heat has always bothered me, but now is getting worse each year. I've read about the cooling vest, but wonder if anyone has used and had success? I live in Central Texas, so to say it's hot is an understatement. I want to be able to be outside with my grandchildren. They, my children and my husband are my joy in life. Thank you for listening. Your thoughts will be greatly appreciated.
    Jo Ann